Hi folks.. well the ime has come for me to stand straight again and I'm 98% sure i'm going to do it. I'm trying to find out some info on this surgury. We have controlled the As through Remicade.. The Kyposis is almost chest to chin.. and its crushing my lungs.. ( good thing I quite smoking ha ! ... Please if anyone is out there who has experienced this major surgury i would love to hear...
Here's a link to some related articles that might be helpful:http://www.spineuniverse.com/displayarticle.php/article93.html
Good luck. I'm afraid I have no personal knowledge of the procedure - hopefully someone else on the forum will.
Hi there - Think this is the one that Alan had. Alan, from the UK. Only a short time ago (2 weeks?) he posted the radiographs of his op and they sure looked *exactly like the radiographs shown in the link that Wendy has just posted.
Am sure that a couple of other KAs have also undergone that op.
Molly C France)
Hello, and welcome to KA! If you're at the point where you need to have an osteotomy done, then you've definitely come to the right place and we're very glad you found us!
I had the spinal osteotomy operation back in November 1994 at Beaumont Hospital in the Detroit area. My surgeon was just fantastic and was one of the top guys in the U.S. for performing osteotomies. I'm curious: you say your chin is against your chest AND your lungs are being crushed--what level of your spine will they be performing the osteotomy? The chin problem sounds like they would be working on your cervical spine, but then the problem with your lungs being compressed would indicate the thoracic (middle) or lumbar (lower) region.
Mine was right at the top of the lumbar region, just before the start of the thoracic. The surgeon actually went back and forth a couple times about where he would take out the wedge and straighten me out. At first he was sure it would be solely in the lumbar region, but the morning of surgery, after looking at the results of the mylogram they did on my spine the day before, he decided that it would be best to place the wedge where it would actually be partially in the lumbar and partially in the thoracic. Ultimately, once he opened me up, he went back to his original plan and it turned out to be solely in the lumbar region.
That said, at the time I had the lumber operation, I was also told that a case could be made for doing a second surgery the next year in the cervical region, as my kyphosis in the neck is quite severe as well. Based on your description, it sounds like my neck isn't quite as bent as yours is, as my chin is still a few inches off my chest, but it is fused at a fairly severe angle. Luckily, I can still breathe and swallow with no real problems, and it appears that my kyphosis has either stopped or slowed to such a point that if it is getting worse, it's happening so slowly that it likely won't become much worse for me before something else forces me to shuffle off this mortal coil! When my surgeon told me that having a second osteotomy there was certainly an option, I did consider it; when combined with the first one, it could have left me with spine in a fairly straight position, which would have been amazing.
As you can probably guess from that last sentence then, my lumbar osteotomy was a complete success. Before the surgery, I was bent severely at the waist--I wasn't at a 90 degree angle (i.e., bent in half so that I would be looking straight at the floor), but I bet I was bent between a 60 and 70 degree angle. Even today, when I tell people about how bad my kyphosis became it's kind or hard to explain how it happened so gradually that I didn't really notice how bad it had become until it just kind of smacked me in the head one day. I mean, of course I knew I had been getting worse and I could no longer see ahead of me to see where I was walking without making an incredibly effort, but fusion of that type is such a gradual thing that even though it leads to a very severe problem, you honestly don't seem to realize just how bad things are becoming until it's almost too late. At least that's the way it was for me, and I've had a few other people completely agree with me.
So there I was, bent as a severe angle, and fairly certain that was how I was going to spend the rest of my life. I had been told by numerous doctors and hospitals, including the prestigious University of Michigan (my alma mater) hospital, that there was NO operation to help people whose spines had completely fused because it was just too risky. Thus, even though I WAS aware that things had become quite bad, I had pretty much given up hope of ever changing anything. Then, out of the blue in legitimately miraculous fashion, I learned that there really WAS an operation to help AS patients and that one of the best surgeons in the U.S. was right in my back yard! I say it was miraculous because the only reason I learned about this surgeon was because I had some severe knee pain one day that caused me to make an emergency office visit to a new orthopedic knee specialist--no lie, he was around the 10th or 11th doc I had called trying to get an emergency appointment that day. He took one look at me and introduced me to his partner--yep, the spine surgeon who did my osteotomy. Turned out this doc I went to for my knee was part of this very large practice shared by about a dozen top orthopedic surgeons and that I could not have stumbled upon a better practice in the entire state. Not only did I find my spinal surgeon there, but also the doc who did both of my hip replacements!
The osteotomy itself took about 6 hours and ended up going even better than the surgeon had hoped. The end result left steel rods on either side of my spine that are held in place with hardware and pedicle screws. When I stood up for the first time just 2 or 3 days after the surgery, I was so stunned by what I saw that I started to cry--in fact, there wasn't a dry eye in the room, as my mom and this huge, very macho male nurse also ended up with lots of tears when I realized that I could see my face in the mirror over the sink for the first time in at least 5 years, maybe longer! I went from being bent at a 60-70 degree angle to what is probably no more than a 20 degree angle, which is a huge improvement. In fact, most of my remaining curvature was, and is, in my cervical spine, as I mentioned earlier. That's why the doctor brought up the idea of doing a second osteotomy--actually, we had talked about the idea of possibly doing 2 surgeries before we did the lumber operation, but that was purely hypothetical talk. Once we saw what I had gained from the first surgery and what was left that could still be corrected, however, then the idea of doing a second surgery became a real possibility.
I won't try to deny that I was at least tempted to have the second surgery, but in the end, I decided that I did not want to go that route, at least not at that time. Now, 15 years later, I still have never had the cervical osteotomy, and, unless my kyphosis suddenly became much worse, I never will have it. The reasons for this are pretty simple. Don't get me wrong--the idea of having my spine being fused in a much more upright and straight position is very appealing, even now. It is mentally exhausting to go out in public and catch people openly staring at me, and the intentionally and unintentionally ignorant comments and actions I've had to endure through the years have been mind-boggling. Ultimately, however, I realized that having the operation to "straighten up" to put an end to the stares, etc. would really be just another form of cosmetic surgery, plain and simple. Yes, it would relieve pressure on all of my internal organs, but there was nothing then and nothing now to indicate that I have any severe problems in that regard. Also, as I mentioned, I can breathe and swallow with no problem; that said, I definitely can't open my mouth more than an inch or so, and that has caused problems with dental work (I've posted a lot about this the past two years), etc. Also, as we've learned during the numerous surgeries I've had, the curve in my cervical spine makes it very difficult for doctors to intubate me. Even under perfect, controlled circumstances, it usually takes up to 45 minutes to perform an "awake intubation" before surgery, so I have some very real, very serious concerns about what would happen to me if I ever needed an emergency intubation following an accident or heart attack, no matter if it was in the field or in the hospital.
Ultimately, the problems with intubation, etc. were almost enough to convince me to have the second surgery, but not quite. After some soul searching, I decided that having the surgery would mostly be due to vanity and cosmetic concerns, and those reasons are just not good enough to justify having a surgery that has some real risks associated with it. I'd like to issue a bit of a warning to you right now to let you know that the number I'm about to include should not scare or concern you for two VERY important reasons: First, it was 15 years ago that this number was given to me; and second, you might not even be having exactly the same kind of osteotomy that this number pertains to. Even if it is exactly the same though, there have been so many advancements in surgery and medicine in general that the number I was quoted is likely meaningless. The number I'm being so cautious about revealing is this: When I had the lumber osteotomy, my surgeon said that the most serious potential side effect was paralysis, which would occur from the site of the operation downward. Thus, with the lumbar surgery, even if the worst happened, it would have been from the waist down. With the cervical osteotomy, my doctor told me that the risk of paralysis climbed to 15 percent, and, obviously, it would be from the neck downward, not the waist, meaning I would lose the use of all four limbs. To me, this number was far, far too high to consider for what I had determined to be almost solely cosmetic reasons--I didn't (and still don't) see any way I can justify having the surgery. Actually, that means I should have listed a third reason why you shouldn't be alarmed by that 15 percent number, and it's a big one: You have made it clear that your surgery, even if it is cervical, is clearly not just for cosmetic reasons. In fact, it sounds like you are reaching the point where having the surgery might be a medical necessity and not an elective procedure.
OK, those are the basics of my operation as well as the thought process that went into deciding to have the lumbar operation and NOT have the second, cervical surgery. I don't know if this helped you in any way, but I hope it did. I just want to stress again that my lumbar surgery was a complete and total success, and it absolutely did change my life. There are at least a couple dozen more KA members who have had an osteotomy of one type or antoher, and there's a chance that number is much higher. The problem is, I can't remember any names of others who've had it right off the top of my head, with one exception. There is a moderator who goes by the user name "woodcarver" here at KA who has had two osteotomies and other procedures as well. You can try sending him a private message here at the site to see if he is checking his mail, but he does not post here very often anymore. I do know that he has run into difficulties with his last osteotomy, which means that he probably would be a good person to talk to; I would go ahead and send him a PM, as there is a chance he might see it and be able to help you out.
The other person who posted mentioned that the KA member named Alan has also had an osteotomy, and I think that is true. He goes by the user name "ineptwill," and you should have no problem finding him, as he is a very active KA member who posts here regularly. Sending him a PM is probably your best bet to ask him about his experiences. If you'd like to get feedback from others who've had the operation, I recommend one very easy thing you can do to gain more attention for your post: While this is the surgical forum, you'll reach the most members by posting in the main forum, the one called the "#1 AS Web Support Group" on the Main Index page. And don't worry--it's totally ok to make a post about surgery there! The specialized forums exist so that there are separate areas set aside for more popular topics, but their presence does not mean you can't make a post in the main forum involving ANY topic related to AS! Go ahead and introduce yourself in the main forum and ask about osteotomies there--you should hear from several other people who've had the operation.
Good luck, hope that helped, and please keep us posted when you have your surgery, ok?
Reading your post, Brad, I just want to comment that I am amazed and impressed by the fortitude that you, and others who have gone through this amazing surgery, have shown in facing life. I realize again and again as I read this forum, how lucky I am to have only recently developed this chronic illness and to have been able to enjoy the earlier part of my life without pain and disability. Hats off to all of you - you are truly amazing.
I want to join Wendy in sayingI am glad to know you, because of the strength and courage you display as well as your ability to express love to this site!
But I am in a real battle as far as wether I want to move my neck or turn my head..
Nice tomeet you, I hope things go well.
Yes I have had a double lumbar osteotomy.
Your chin on chest description brings back many memories.
have a look at me before and after at
Adelaide Spine clinic/contents/spinal deformity/Ankylosing Spondylitis
( a link in the text)
you will see 4 pictures there, all me.
Please Pm if you want to chat about it
(edited to activate link - mig)
Thanks for those stories. I have been thinking about surgery. Probably mainly for 'cosmetic' reasons atm as well. Though I would also greatly enjoy being able to do things above my head (like look at what I am getting from the kitchen cupboards or hanging up the washing without the need for a step ladder). I'm not sure if there is compelling medical reason for it at this stage. I'm not sure what the exact level of my curvature is. I cannot straighten up or lie flat on my back without 2 pillows under my head. I'm currently experiencing a lot of neck pain which makes it hard to sleep. I regularly suffer from pinched nerves. I don't know if the surgery would help against the pain and nerve issues at all?
I have also been told about the difficulty with intubation. It was an obstetrician who told me that it would be virtually impossible. He told me when I was 8 months pregnant and I completely panicked when he casually mentioned that I would not be able to have an epidural because of the fusion of my lumbar. Nice! I demanded to speak to the aneasthetist then and he assured me that they would always find a way to do emergency surgery, if necessary without the tube. Added risk of course...
I'm seeing a rheumy next Monday and will definitely ask him about this, though I am very worried about:
the long recovery time (how long was that for you, Brad, Allen?)
Good luck McCalrsen.
One year for me
COST IN MONEY? Nil, well apart from lots of lemonade......yum
Cost in heartache, headaches, backached chest ache knee hip shoulder heel elbow and stomach pain.........small in terms of the results........wonderful
When did you get the surgery? That looked like a major league improvement.
Hello Farinelli, yes was major, major league and gave me life back. May 1994. I was errr.......let me see 2 plus 7 take away 2009 equals.......errr......well if I am 23 now then in 1994 i must have been 44.....lol
yes a wonderful happening for me, one with which I usually bore folks to death so please forgive.
I always look at it in terms of my height.
a strapping 6 feet 5
years of AS taook me too 5 feet 9
Surgeons/docs whom I love and so why I always object to doctor bashing on here took me back to
6 feet 2
Sadly. am on the bend again but still manage just over 6 feet.
The joys of Ankylosing Spondylitis....huh!
Mind you, it has never changed my looks. I was always ugly and still am....lol
Alan - I don't find this at all boring. In fact, I'm incredibly interested and I'm sure many other are also. This happened to you quite a long time ago and many of us are relative newcomers. I realize from hunting through some of your posts from several years ago, that you probably provided lots of helpful detail at the time. However, it's quite difficult to search through many hundreds of pages of posts looking for this stuff.
Personally, I would be extremely pleased to have the opportunity to learn more about what happened to you and how you managed to deal with it, both before and after surgery. The photos on line are amazing and give a powerful sense of what was involved.
If at any point you are in the mood to start a post specifically about the any details of the surgery and pre and post issues that you coped with, I would be very interested to read. Of course, this is asking a lot and you may not want to be bothered or not have the time to respond to such a request. I wonder how easy it is in KickAS to provide links to such posts from the past.
Anyway, mostly what I wanted to say is that "usually bore folks to death" does not apply to me. I am interested and very grateful to you for your willingness to share. Although I don't have AS, I am aware that, with RA, I am facing the risk of seriously deformed joints and/or joint replacements in the future. The spinal surgery sounds much more scary than, say, a hip replacement but still there is something about reading and absorbing this kind of information that makes it less terrifying to me - a kind of normalizing that happens as you learn how people cope and what is involved.
Long-winded way of saying "thanks - I appreciate your sharing and would be happy to learn more".
Wendy wendy..................odd that your name reminds me of a song now what was it.........errrr oh yes I know
Wendy wed wed wobin comes bob bob bobbing along - along.........ughhh sorry mind wandering off there lol
Wendy are you actually inviting me to talk about myself? Wow, well as you all know I am a reticent talker, shy modest and winsome...........but for you and the benefit of mankind in general welll.............errrr ok you persuaded me....lol
Of course I will be delighted to recount if not to dull and grim, I do love talking about it all because I consider that I was one of life's lucky ones.....where to begin though..........ok
When I was 18, I joined the Nottingham City Police.
I had had some teinges in my body for a while, but at that age thought little of them and thought they might go away, as probably all of us would. Having finished police training I was put 'On the beat' You will know about that phrase, perhaps our western colleagues may not anyway put on patrol. Because I was new novice like, I was first put on night duty. Was thought I couldn't do a lot of harm there and would accustom me to the job. 10.00pm until 6.00am At 4.00 am I could barely walk. Pains, severe in hips and thighs, I mean really severe. Well it was because I had been walking all night and would get used to it no doubt! I darent complain about it, being a policeman was a drea I had long cherished, so kept quiet, for a year or two. The pain though refused to stay quiet and got worse and worse until I was forced to take a week off. Whoah.......we dont have time off said the 9 foot sergeant who arrived at my home 10 minutes after I had reported in sick. Out of bed let me see you walk around. Was then that I realised fully about morning stiffness. I could not get out of bed, pain was screaming etc. He still though considered me a faker. And so it went, The doc had to be called he kneeled on my bed and bounced about a bit and found the bed guuilty as charged of being soft and no good for backache thereby prescribing codamol for me and a new mattress for the bed!
Chapter 2 tomorrow or maybe tonight, work demands my presence.
Alan this is realy interesting to me having just been told im not bad enough for surgury becuase the risk is too great.
Looking at your photos I would say im probably a bit worse than you were Ive also lost 6inches looked every were but cant find it.
I can tell im deteriating fast by the way im walking and by all the people who look at me like im an alien.
8 inches in lost height????? Wow! I am 5'9" now. I would be down to 5'1". How long did it take before you started to fuse? Was it early?
6 inches as far as i know ive been fusing for the last 25+years
was 6 4 now 5 10.I will put my history on might be of some interest.
Yes - the old "wen de red red robin..." I was subjected to that at school quite a bit but it doesn't bother me at all now. So sing along... Curiously my husband's name is Robin so he got the song as well! We are now "Wendy and Robin - wen de an robin..."
Fascinating story and you tell it with all your wit and charm - can't wait for each installment. Of course, I understand the "Bobby on the beat" having grown up with Dixon of Dock Green.
I already have a hilarious image of said doctor bouncing on the bed. For the audience here in North America - doctors really did make home visits back then and were even willing to test out the state of the bed.
Tell me more - can't wait. And thanks, Alan, I do appreciate it.
Kevin - sounds horrific like Alan's story. Please share your story as well. Are you bent in the lumbar region? Or higher up? And has this got much worse recently?
Hello Wendy I will sort out my story and put it on later today.I will put it in a new post. Kevin
Winsome you are Alan.
Can't say that I noticed much in the way of shyness or reticence tho! lol
I am happy that you're finally sharing your whole story - it begs to be written and published here for the benefit of all kickers!
I'll look forward to reading your story as well Kevin!
You guys, your endurance, grit, optimism and tenacity are definitely an inspiration!
I will try to respond to the posts here (my obvious hero worshipping fan club) then tell more. Kevein you must put yours up......oh yes I see sorry you did it separate the before and after pictures of me. Well the before was 2 years before surgery. At the time of surgery I was a full head lower than shown and moving rapidly into contact, eye to navel........well actually I like navels but prefer the err, well how can I say this the umm glittery errr............well I will leave it to your imagination.
Farinelli yes 8 inches in the sense of height, not quite so much if measured around the bend so to speak. I bet Kevin is the same.
I believe fusion with me was an almost immediate but was difficult then, as now to pinpoint all that was happening. I chat lots with Mig as you all know and she knows my full history (she tells me though, nothing of her running around with loose men spending millions cos she is wealthy and.............oh sorry I am wandering off. I often chat with Mig and I think we both agree that the disease is almost sort of pre ordained (debatable I know) but I feel as Mig does that we would have fused and deformed regardless. I know I certainly did.
Mig yayay, yes I am full of grit and next time I expect a better meal cooked by you x
Wendy I will start episode 2 in a new post, will bump my total up and I can overtake Suee 22.......yay
Huh! Right, that's it then Alan, that's the last time I'm ever cooking for you, so there!
Next time, we'll just order-in (and let the poor delivery man deal with the black bears..!) lol
yep, pre ordained is a good way to put it, there was no running away and hiding from the AS monster.
Err life in the Police, my dream job got to be difficult. I began to think that the pain would never end, that it would always be there. And yet, in my heart I sort of knew it would be ok. How wrong can you be! I was severely beaten by 4 men in a cinema one night, knocked backwards through a row of cinema seating (the old fashioned kind) i took the back of one seat off with my spine...........mind you my face hurt so much that I did't notice the back (often wondered if this event might have been the trigger but know really that i had pain before it so that sort of sqashed the trauma theory) I worked in a boisterous city centre and was involved in a few fracas, me usually coming off worse, they didnt seem to like me taking their knives off them........well you dont need a knife when all you are eating is soup do you..
I didnt leave the police because of AS (as I often tell people because it is convenient) that is a whole new story perhaps for another day.
Anyway I had to leave the job that I had cossetted since early school days, was in unexplained pain all the time, it was unbearable. I got a job in a circus as a lion tam..............oh no sorry selling orange juice and popcorn...........actually, that was when I was still at school and when I met Mary Bacynski, my first love my first kiss......then her boyfriend came in.............well that is yet another story.......
I spent time at the City Hospital in Nottingham (the one where Jeanna worked for a while) I was in real trouble, incapable of doing anything, getting up at night turning on the gas fire with my back as close to it as possible without searing the skin, in a desperate endeavour to get some relief.....was prescribed Phenylbutazone which I took for years, they did no good other than to cause other problems (to private to mention here but if you are lucky I will tell you in pm but wear a girdle when I do). I was in the care of Sam James their rheumatologist, there is a ward named after him now. I went through 4 years of agony on a moment by moment basis, Sam eventually told me after the fearsome pressing he got from one of my wives that I had a rare disease called Anky.........etc. that it would burn itself out after 20 years and all would be well.
Keep Mobile he said (yes that was right) and so it went on for some years but it didnt burn out, it didnt get better, only worse and worse and worse...I have sobbed with it, (only in front of girls though) I have endured that moment which all ASers hve, that singular moment the horrifying moment when your optimistic mind finally realises...
This isnt going away, this will always be here, all the days of my life to come will be horribly despoiled by this thing. A horrifying day and yet a great day.........great because I knew then that it was time for me to retake my life and live it as I could, to get girlriends, drink a bit (bit is english for gallons!!)So I went to work on construction sites, here the damage was exacerbated, i had a divorce or two, burned my wrist on an iron and boasted ever after that the scae was from the time that I was attacked and heroically brought the knifeman to his knees or alternativelythat I had a desperate cancer and that it was so chilling a thing that I had tried to end it all.......mind you I usually saved that one for the girls, wow they fell for it lots of times......lol
AS now began in earnest, the damage started to appear, the remorselessness of awful pain was almost gaggingly, lung restrictingly felling........but more of the good old days tomorrow........
I relate to a lot of what your saying only i was a naughty biker
You have a much better way of putting things.Nice to hear some one else going through same sort of things well in a way
at same time.
I didnt mean it was nice you were going through it . I mean it wasnt only me at that time. Balls I said you were better with words sorry.
Ahh a bit of a rocker were you butrning up those sussex beaches. Want to see pics of you Kevin. Mig will help you to get them up.......only of course if you are willing. It just seems to me that you and I have followed a similar road........the M1 probably...lol
I cant seem to get them up if you know what i mean i need some help this is one my wife cant help with if you know what i mean
lol yes I understand....lol
Hey Kevin,... if you want, email me your pics as an attachment, here: email@example.com
and as Alan said, I'd be happy to re-size and pop them into your story post on the main forum.
Ok thanks mig I will do it tommorow thankyou.
Im more bent at the top and my neck is very affected .
Yes i do feel i have got much worse over the last year I realy notice when im walking i cant pull myself up and feel really uncomfortable its like carryig a heavy weight on my back and i cant get it off. Ive posted on main site more info of my life with AS. Kevin
I know it's kid of the wrong thing to say, bit morbid or sadistic maybe even, but I'm really enjoying reading your story. You'd better give us a happy ending though!
Hi Alan - installment #2 was fascinating - looking forward to installment #3.
you sure you aren't totally bored yet?
more tonight if you're not.
Highlights to come
walking into a pub head about waist level. perceptive barman says.......
"Oy is there something wrong with your back!"
said a chambermaid at a hotel I once worked in.
and the day when AS caused me to crash my head into closing metal shutter and then to become trapped benesath it.
Yet another scar.............
but only if you aren't bored
Bored? No way! We are waiting for the third instalment!
Keep writing please!
Can't wait - all I can say is TG you have a sense of humour.
Errr where was I now..........oh yes rescuing Norman Wisdom who had locked himself out of his car (a white Rover) when he did a show at the theatre royal Nottingham......oh happy days, yes, I remember saying to him,hey Norm, what a lovely day for pouring custard down your mother in laws knickers(Panties for the westerners) you'll go far he said but failing to diguise a cynical sneer, yes I said................anyway........
AS for me certainly between the ages of 21 to 35 was a living hell. Pain was ever present, fusion was well under way, following the classic course; starting at the coccyx and steadily creeping up the spine. I rarely went to the doctor or the hospital because medications were unhelpful. I was over the years prescribed variously, Phenylbutazone, co-codamol, Distal Gesic (c0=Proxamol) Indomethacin, Mobic, Arthrotec, Diclofenac,Voltarol (voltaren-Sorry John),Brufen. Ibroprofen, and god knows how much more. None worked, but then how would I know if they did? Perhaps they did, perhaps the pain could have been even worse without them?. It seemed unlikely because it felt as bad as it could be. One of my wives had to fetch me from work one day, the boss had summoned her to appear, and to collect the grim staff member whose screaming was driving away his clientele. I cried all the way home, all afternoon, all night, not because I am weak, or to use a Nottingham word, (Mardy)but because I hurt so much for so long and cound not envisage an end to it, ever. And yes I did, thought about it, how, when, would I be able to do it? Anything to escape this
b a s t a r d of an illness.......sorry...........Anyway I didn't, like all ASer's, somehow and from somewhere you find the will to go for another day, and another and another.
That night i walked the estate for hours, anything to try to walk it off, or try to forget about it and actually about 4 in the morning it began to ease.
My son was born soon after this, my wife left me shortly after that! You can't keep bringing all these women home she said.......awww I said, it's not fair, why not.........and she too, cynically sneered an was gone.I next saw Chris (My son) 20 years later, and like his father, super good looking intellectual, and fears of AS though not yet confirmed, he has some slight indications, so we pray that he will escape it.
Work was difficult. Depressed about losing the police job, no other work seemed appealing. In all my lif I have only ever wanted 2 things
1. To be a policeman, and I wasn't
2. Not to have AS, and I had.
What to do, how to make purposefulness from this mess.
I only had one other minor skill, music, and it was music that saved me........
tune in next week for episode 4 of this thrilling trilogy! When Alan meets Angelmom, Angelmom is bowled over and thratens to leave Bill..........dum, de dum dum.arghhhhhhhhhhhhh.
Hi Alan i can relate to every thing your saying .Its like having a double.What happens to me next.
Hi Kevin, well you get the girl actusally.....the ugly one, i get the other one...lol and she's a bloke.........tell me about this surgery refusal, are you buggered at lumbar or higher.
I have a great doc whose only concern about putting me forward for it, was my age, I was 44 then. The surgery as Brad, John Cheerful and others will tell you , is extremely stressful, age makes it moreso. I said to my doc I will quote the patient charter at you if you dont but he is a terrific chap, saw him yesterday actually chatting to him about the canada trip, do those rods set off the airport bells he said.......noooo says i , i always hope for a clattering din but they just ler me through....anywayall i say is. explore the possibilities. It was great for me, it worked, gave me new life, but it is dangerous dangerous stuff. i wish you well with it, right then, how about swapping the ugly one for this bloke eh Kev...............lol
You are such a good storyteller Alan - is riveting this! But I wish you hadn't had to suffer from AS so terribly all those years. What a horribly cruel disease this is.
It's amazing you have such a wonderful sense of humour through it all -- I can't wait to find out what happens with Angelmom! lol
Hey, if I can guess which policeman is you -- how many points do I get?
LOTS I hope!
Hi Alan its ok ive got a thick paper bag you keep the bloke.
I saw 2 surgeons one explained what they would have to do to get me upright . Start at the base of my spine and break every joint all the way to the top and fix with rods and screws as you can see major. Then he got the other surgeon who said he would have to break my neck to reset it in an upright position. They said it can be done but they felt that at the moment i wasent bad enough to take the risk . They are keeping in touch with my doctor and my rhumi and i can go back at any time. So its not a complete refusal.
Still i can go on being the model for the road signs ____LOL
Ahhh perhaps we should make it competition, what do you think?weall have a guess and first one to guess right gets a prize, and I bags go first....yay..thank for help with the pic dear girl
Cant see why all joints would need to be broken, if they are starting at the bottom, straightening the lumbar area alone will drag you almost upright. How old are you Kevin?
Oh and you sound far to ill for the girl, so probably safer for you to pass her on i think....lol
I will never be that ill
Im 54 going on 21
You are very welcome Alan.
Yes a competition! Is easy peasy to guess tho, if I recall, I got you first try.
And you do not get to go first....
I fused top down not bottom up i always have to be different.
neither can she........lol. mind you we are writing all this stuff on someone elses thread which is cheeky of us, perhaps it should be moved to the heroes and amazing Alan forum...................lol
bE GREAT IF kEVIN WENT FOR SURGERY AND IT WORKED, CRIPES WE COULD FOLLOW EVERY GRIM AGONISING MOMENT And say cheer up Kev, oh stop moaning Kev, oh Kev you are such a whinger...........Sorry Kevin, go for it mate.
you absolutely did did not sothere.............did you?
ANd why don't I get a go, I am a kicker you know....huh
I see, yes a different kettle of fish then. I remamber my surgeon saying to me that the higher up the spine they have to work, the higher the risk of damge to nerves, apparently they are all very fine and delicate up towards the neck.
Anyway, good luck to you in your choices.
sorry to disapoint i dont whinge and i dont moan god if i did I would have topped myself by now
oy, you dont get a guess becasue you already know i am 7th from the right
Yes I know totally what you mean, sorry if joke was unkind, was unintended.
Top row, second in, r.h.s. (well, the ears look they might fit an identy-fit pic, and the bloke is tall an tall some more!)
Facinating story Alan - can't hardly wait for next episode (would this make a giood play, think you? Try for a TV script - beat those idiotic medic soap operas... When staged, Innana can play one of the roles. Yea!)
Molly C (France)
Hey I did too!!! Of course I did, oh ye of little faith and a sudden poor memory! Huh!
Bonjour mon amie Molly. Comment cava?
Hrey leave my ears (they may not be my ears) out of it. Will let you know later if you are right. and thank you for kind comments about story. Is a funny thing isnt it that you stagger through this illness for years sort of piecemeal, a tiny bit at a time. not realising that when you look back, all of the circumstances you have endured have sort of become composite, as one and you have a story A story of some length, of change, of emotion and, I hope a little humour. I think the great thing about KA is that somehow. we all try to see the funny side, well a bit of the funny side at least.
As for the play well I was trying to write a musical, but it's the lawns, they are so demanding.......
thanks Molly,you are kind.
No you did not, you have met me gazillions of times in the flesh side by side, in the pub in the restaurant (you never pay either, why is that) and I present you with pic and you haven't got a clue i had to tell you in the end...........hi you ....lol
You DID NOT!
I got it right off, and by the same clue that Molly mentioned. And no, not the ears! Are very nice ears, btw. lol
Go to sleep or you may turn into a pumpkin soon!
well it proves the point doesnt it cos having shown you the right one you still dont know cos i am not the ear ridden wonder....huh
Did I say you were the 'ear ridden' wonder? No!
You are the kindest looking policeman of the lot, that's how I knew.
Well - my policeman guess is bottom row on the right. But it's tricky to be sure. There are three possible candidates - the tall one in the top row and the second in from the left on the bottom are also in the running.
All typical British Bobbies from the early seventies!
Do keep going with your mesmerizing story, Alan. We should make a copy because your story-telling style has publishing potential. It's hysterically funny combined with shockingly sad - that kind of perfect British black humour that makes books like Angela's Ashes succeed.
You and Kevin definitely have to get together - I think you would be a perfect foil for each other. The book might have to be about the two of you. An example of what I'm talking about is the little exchange that included Kevin's wry comment about not whinging and moaning or he'd have topped himself by now. This is not the kind of conversation "normal" people have - it could only come from survivors of something as cruel as AS.
Love you guys - keep the stories coming.
Ok then folks yes first prize of two pounds of birdseed and a tractor that has no engine to Molly....yayayayay
Yes I am tallest top row 2nd from right.........goodness I was lovely..........lol
consolation prize for wendy for getting 1970's was actually 1969
yyyyay wendy wins a stringless bow without an arrow.
Mig....oh dear how sad, you have to hand in all pints to the failed spot the policeman judging panel.......x
Oh boy, Kevin! Was I ever right about the British black humour. Just so you know I moved to Canada when I was thirty - born in Cornwall - so I have an appreciation for the way you and Alan think. Not so sure the humour will be as well appreciated this side of the Atlantic!!!!!
Okay - 1969's pretty close - I knew I was about right. Interesting that my initial choice was the tall guy in the top row and then I thought "that's too obvious" so I went with the other choice (bottom right). Anyway, happy to have the bow - no doubt Robin ran off to Sherwood Forest with the arrow.
Hey Alan! I see what you mean about losing height with AS. It is different than losing it with sciolosis. Those folks lose height downward as opposed to AS. You mentioned about AS being pre-ordained. I wanted to follow up on that. Do you mean that all current treatments are pallative and won't affect posture and fusion? I have heard doctors say that the jury is out as to whether any of the current treatments can affect fusion. Thanks for posting about your life story. Very interesting! You are a good storyteller. Have Disney hire you as a narrator!!
Hey Alan - any chance of another installment? It feels like waiting for the next episode of a gripping British comedy show. Something like "Some Mothers Do 'Ave 'Em".
Pints or points? Doesn't matter, am not handing either over to silly biased judging panel!
Craig, Pallative errrr...........well I used to have a pal or two and errrr.....cripes I best look it up.............what I meant by pre ordained was that I believe, and it is entirely not proveable, that my fusion and deformity would have happened, despite treatment regimes, NSAIDS, physio, NSD etc never made a jot of difference to the progression of my illness.
My x-rays are used in training world wide, not because I am a super special good looker (which I am) but simply because they illustrate the classically described progression of AS and with the bonus of surgery and rods to look at, so in a sense a whole AS story in one picture. But yes, I dont think anything would have stopped what happened to me, thus pre-ordained. Mig will tell you similar, she has had a real hard time with AS done the meds the excercises the lot and her damage is still sever so a similar story.
Wendy, loved your pictures at the coffee shop. What a pretty Cornwallian you are.
Right next dull episode is due this evening. Ids hard to write anything of interest because AS is very samey year after year, but, there is the tale of the Tattoed blonde and the Lobster thermidore soup, or perhaps a dash fear when I nearly fell from a 30 foot tower by being entirely stupid...........but we will see........ooooohhh Betty!!!
Cripes I never written anything longer than 4 words before, now I find myself in uncharted literary seas, adrift without a paddle, sailing alone and lonely, to who knows where...........Music was the thing
I am a man of passion though not driven by passions, a man with copious draughts of moral outrage and yet not outrageous, some would say not very moral either. My great hero, Beethoven, was a man of passion and enormous gifted talent. A loner like me, a man that lived in his own head, like me. However (I once was yelled at by a teacher for starting a sentence with however, "Never start a sentence with a preposition he cawed, sneering down at me, pompous and offensive he was. I didn't I said, I started it with However!) I walked off and left him there, I was 47 at the time but felt as foolish then as I always did when I was at school. Always a bonus though, so I was grateful to avoid a possible detention. He (The Teacher) didn't have AS, neither did Beethoven, but both had unseemly long hair! Why they have appeared inthis story I don't know, perhaps a sub conscious and clever way of chasing away the writers block, There is though always a rule and one that says,one needs to be a writer to get the block.
I joined a band in 1974, November. In the end I played with that band for over 10 years until they got rid of me, mainly because I couldn't play very well; but possibly, maybe, because I looked not so good on stage. The deformity was pronounced by now and became exponentially more so throughout those 10 years. The sad truth was that I looked bad for a band that wanted to go out gigging and chasing women. The latter of course appealed NOT at all to me, but I liked playing and the money was handy too. I became all but alcoholic, lost yet another wife. Was riddled with AS, whisky is a good cure, well a way to forget maybe.
Life was falling apart by now. Laughed at because of the way I looked, mocked because I was always drunk, the one everyone else wanted to take out because all knew there would be a chance of a good laugh at my expense during the evening. I didn't make maintenance payments (alimony) to one of my former beloveds and was twice arrested whilst on stage, though I came to know the particular officer quite well and he was always as discreet and as pleasant as possible whilst pursuing his duties, and he always had a pint,that was charged to my account. Biggest sadness, not AS, not the booze, not the loss of wives, nor self respect, but that when I was marched off to be bailed, I would chat with Bill (that will do for his name) about the police and the job and I would always slip in that "I used to be a policeman you know". then the moments of sober propriety when I would remember what I had been and realise what I now was.
AS was unmoved by my moral decline, my slide into failureship. AS felt that it really ought to do its duty and grind me down that last inch or two just to ensure that my nose was really jammed hard in the mud. I hurt every moment of every day. When I look back, remarkably, I worked on construction sites by day, played in a band 7 nights a week and then over to the nightclub (The Parkside) where the whisky for a while at least, made me think I was OK again..
The band residency ended and we finished up on the road, so sleep was a rare commodity, it still is. I hated being on the road because apart from 2 hours playing, that's where you spent your days, on the road, except that we were in a van, I mean we weren't actually on the road so much as conveyed hoveringly above but along the road.
I met a girl who was prepared to accept what I had become, apparently, she stole my wallet and was never seen again, another and another and another, always in drink and always in grim realisation of the awakening morning to come, the reality check of my life; and my AS, good old AS, never let me down, then one night, I collapsed............
This is a bit too riddled with humour, I shall try and be serious tomorrow.......
my god but it's just not fair that you had to suffer through all of this Alan
... I can hardly bear just reading it. I'm so grateful that I know where this story leads... x
you are not alone now my friend!
I would like to say at tis point that the last chapter is entirely fictitious and that I never was faced with such privation, to say yes this was all a bit of a joke
But, I cannot, because it is all true
I can relate Alan AS the disease that knocks you down and down and down again. But we keep coming back never beaten.
My bodys knackerd and i give a lot of people a good laugh
(DER LOOK AT THE FREAK) ( ITS THE HUNCHBACK OF NOTREDAM) It hurts but lifes a [**BLEEP**] and then you die so why worry.Its what is inside that matters not what people see.
Good story Alan keep it comical its a lighter read without missing the important stuff.
Kind of you. I love your description it sort of says it all.
As the disease that knocks you down and down and down, forever down...yes well said.
Well that paert 4 is the funniest part, is all misery from now on........lol
Thanks again Kevin.
AS is misery it should be AMS it gets you in every way from the depresion in your head to the pain in your big toe. But you know as well as i do you learn to live with it what i actualy feel about the way i am is not printable on here.
sorry feeling a bit down today.
What a testimonial. To life, I mean, I think you're living a paradigm of it. I'm sorry it had to be you.
I think you should put all of this together. I don't believe it's hard for you to write... I think it flows like music...
[And since we know how it turns out.... c'mooooooooooon... what's next?]
Don't be sorry Kevin, it just gets to us some days, eh? I think you should be incredibly proud of the huge accomplishment it is, that you have the ability to joke around and find ways to have fun most days despite the severity of your AS. You and Alan give me reason to trust I'll be able to make it through my tomorrows, if I can manage to be as strong and focus on enjoying what I can, like you both do so well!
It breaks my heart that you've had to endure such nasty horridly hurtful comments from such uncaring idiots out there.
People used to stare at me due to hip pain which forced me to walk in a funny way but I've never had to endure laughing, well not yet. No-one should have to, ever. The staring I could ignore as I was usually too busy concentrating on how to get from A to B, so no time to contemplate nor care what some person ignorant to my situation may think. I am afraid of how I might react to some of those comments you've had... I might punch someone
but then that would hurt (me) and they would probably laugh at my weenie little fists!
I think you have an amazing attitude Kevin! You are so right; it is definitely what is inside that matters and it's the genuine kind people who make our days.
CC what's next you ask, sadly it becomes more desperate and the search goes on I mean what does it mean what is its purpose oh yes the search for a meaning but I cant find it in the dictionary...Paradigm........yes what does it mean....oddly my youngest daughter used this word in her dissertation and she wouldn't tell me either, so, I shall thesaurusise immediately. oh and thank you for nice comment.
Is odd the way this has developed, I only meant to mention a few words about AS, now it seems to be my life story! Sorry that you have all been obliged to read it but it gets really exciting tonight. oh yes, the bluster of the fool, the hip tilting tittilations that awaited me at the clinic the entry into the light..........cripes perhaps you are right, perhaps I should try and do this properly
Alan - this kind of real life tragic story told with humour does very well - look at "Running with Scissors" and "Angela's Ashes" which I've already mentioned.
Just keep writing it here for us for now and see what happens. You've found a "voice" (or maybe you always had it) but it works very well.
So, I woke up in hospital with a pretty nursing sister prodding me.
"What is the last thing you remember?"
She repeated it until i was sort of compus mentis.
"Hapiness" I found myself saying..........
"Ohh God" she said, "One of them"
I wasn't sure what one of them was, but felt sure that I wasn't one, and even if I was one then she had no right to accuse me of being one which I wasnt and would have refused to be if I knew what one was or what they did, well I felt a right one!. She had turned from a happy bunny into an irritated efficient,
'we dont want your sort in here'
type of person. I do remember though that her legs were long and sinuous. I was embarrassed too, being in A and E in leiderhosen! Yes that's right, Leiderhosen. It may seem funny, but it wasn't. Well, at least not for the wearer. I have to admit though, that there seemed to be much mirth in the general area of the trolley upon which I was recumbent.
They tested me for hours and found nothing, not even the AS. Declared me fit and well and said I could go home. So, picture the scene; there I am, in the middle of a huge hospital campus, wearing leiderhosen and a white shirt with embroidered front, long socks and red baseball boots. No money, no idea what time it was but knew that I lived miles from where I was. There were many folks milling about and all it seemed,found me to be an object of interest and amusement....There were no mobile (cell) phones then so I asked a nurse if I could use the phone, explaining that I had no money. Yes she said and I managed to raise my brother, another musician, who came and fetched me.
This was the first indication perhaps that my time was here, that things had to change, that drinking, working all day and night, sleeping on friends floors and so on was not doing me any good. The brain started to work and to challenge the body, to say lets live a life.
The next day my right knee grew to the size of Michelle's boat. so 24 hours later, there I am again, in the hospital having my knee aspirated. 150 gallons of synovium drained off though a needle as big as cleopatra's which was roughly inserted beneath the kneecap.
Then they admitted me. Oh why said I , it is only a knee. You are ill said they. So, there I was, hospitalised. not working, no money, alone now. But, for the first time in years, sober..............the brain began to work.
Cripes you must all be bored by now......
If you behave I will get mig to post the pic of me in them, but no no no laughing or else........god I look such a fool
Really Alan, do you want me to? Cos I will if you want. Happen to have one open right now on my desktop, as I was already contemplating the idea of posting it up...!
You suit leiderhosen..! lol
Kevin, you should feel loads of pride in your fellow countrymen I think... ALL of the English people I've ever met have been just lovely!
I think we all run into a few folks (frightened of what they don't understand - I agree) who aren't so nice and we're most apt to find them to near to home, since that's just where we are the most... but they're everywhere I'm afraid.
A blip in comparison, I can relate to!
Ah, well, as I am waiting for Alan to answer... I've been busy re-sizing to upload as we type!
oh well i just did reply, but it isnt here, how odd!!!
yes ok but make it a quiz dont tell which i am
Yes there not all bad i agree. but have you been to England The undesirables were i live far out way the nice people.Perhaps its justice for me being a 1%er for years.
ohhhh errr rats... okay then. Seems I have uploaded the wrong one in that case, as it is only of you! Too easy to guess that way... lol
Ok will work on putting up the other one, immediately.
Okay let's guess -- which handsome chap below is our Alan?
So do I get to put in my guess this time pleease
Is a great pic this!!
Hi Kev, nope
unfortunately I have not yet ever made it off of this continent. But I am planning to at some point!
Not sure difficult there all fairly ugly second from the right.
look for AS kevin, and the fairly ugly one second from the right is my brother
yes you get a guess but make sure it is a wrong one....lol
keep em guessing
Hmmm.. if I recall, that is who I chose too, the first time Alan gave me this quiz.
Not giving away if I was correct or not tho...lol
Oh, I see Alan's already told you of the trick, his brother!
You must be the one on the right then your brother is the better looking one
ahhh fell for it I see Kevin,,,,,ahaaaa
why do you think that one, whom I might say I think is a reall tasty geezer....lol
yes, indeed, wow what a memory, thighs withered by dtraining to keep me upright, yes takes me back a few years. Odd I look younger now than I did then..that's what AS does, as well you know Kevin.
might as well load the green one as well if you like.............lol
I know im like an adonis now
yay, ok, done! I love how you've such a huge smile in this one!
Looks like you have just seen a mouse in this one.
... the groupies and life on the road with the band... this was exactly what I was picturing!
None are Alan - the ears don't fit...'LOL'
You have a strange thing for ears Molly. LOL
But check the dimples, the dimples give him away...!
(ooops, sorry Alan
Okay - taking the hint from Mig - the dimples - yep must be the guy on the right in the first picture and the guy in the centre in the second picture!
What kind of music, dare I ask???????
"...and the guy in the centre in the second picture!"
Wendy, that one got me! lol
Well apparently bavarian oompah, but in fact lots of modern stuff, for the time. Hollies He aint heavy he's my brother, new york mining disaster bee gees, tulips from amsterdam lol
oh and lots and lots
some german stuff, some pop some ballad, some comedy........we had a pad of over 300 songs.........and Karl the front man was very very good. we made a few records. I have a couple of them still.........
...NO NO NO Not a hope
Yes who is the guy in the middle of the second.........?
Ear ear you Molly, leave the lugs out of it, tarnish not the tabs, have always thought my appendages were rather sweet.........lol
you are totally cracking me up... and are a clot! lol
Hey wait a minute -- I asked to hear those records ages and AGES ago and is about time you shared I think Alan! Please?
Ahh well -- he is the accordion player of course..!
well accordion to you he is.............!!!!
Ahh well are old analogue records so cant unfortunately get them onto computer..........phew!!! got away with it i think..............We did a version of 7 little girls..!
well actually -- a pianist he is to me, disguised as an accordionist!
Oh but there IS a way to get analogue to digital, I am sure of it! Am going to ask... hey maybe Dow would know. yay!
Have just googled 7 little girls lyrics...lololol
nope absolutely no way one can do it so sorry, tough bad luck and i would have love to do it but no such technology...................errrrrr............
Sitting inthe back seat kissing and a huggin with,,,,?
and we shall see about that technology... am very resourceful you know.
yes.........no chapter tonight, is bed time here old bones and enbrel suggesting I go and lay down with John Major....
Sudoku nights then......(cryptic, someone may understand...lol)
ahh yes, you are the sudoku master..! Good night then Alan, hope the enbrel thing quiets up for you.
All ears are hidden under strange wigs... Especially that bloke second right, the tall one, wearing a floor mop!!!
thats Alans brother Molly
Wot'a hoot. He looks huge tall like Alan - must be 6'7" (an then some?)
No I dont think so I know it looks like that but Alan is very bent.
Yes, know that Alan is somewhat hairpinned, but pic was yonks ago, soooooo a v. young Alan - like the acordian pic, a young upright Alan.
Anyways, I like to tease him as we all do 'smile'.
About to watch a nice OR-Live hip replacement...lubly-jubly.
Plus, their feets are not lined up! Pretty sure Alan is the tallest of the two... and had the better barber! lol
Yes your correct there feet are not lined up and his brothers wig is very high and Alan is fairly bent forward.
oy you lot......
Truth is that the pic was cobbled together latterly I think.
Ok height terms:
I was the tallest by a good few inches but as Kevin says, well on the bend by then. Neil, my brother 6 feet 1 inch
the other three, Terry the trumpet on the left, next to him Clive the drummer and middle, Karl, the man himself; all relative shorties.
My ears were the prettiest, Neils hair was real (well it was the seventies) Clive has had heart attacks, Terry is 5 feet 6 and 25 stones (350Ibs) Carl (proper with a C not a K) very very bad eyes now, a widower and lonely.
then there is me and I have all of you.
Green pic was post surgery in a different band and was taken somewhere in the late 90's I think.
Hated it by this time and left the band soonish, was not what I wanted to do anymore.
So there you go
Thank you for that Alan your so helpfull.
Didn't know Alan was a sudoku master. Does that mean, Alan, that you are comfortable with swordfishes, XYZ wings, unique rectangles and so forth? Are you a mensa sudoku master? Sounds like we could have some fun providing each other with clues late at night when we're stuck.
errrr.........welll ummm........you see..........errrr..........cripes.....!!!
I can eat a swordfish minus the sword of course...............no Wendy, I am not a mathematician, more of a bit of a potterer.......but I can do simultaneous equations and long division..............lol
Hi Wendy, how are you. and if I encounter you on line in the early hours then we will chat if you wish and I can tell to you all sorts of outrageous tales................
Ah well, what I mostly meant was that I am a beginner novice and newly recruited student sudokuer...lol, and math has never been my strong suit!
And he does them using a PEN for heaven's sake... a pen!
oy , tha's nowt wront wit pen lass, just have to ensure that you get right number in right box, which of course is the slight difficulty with soduko.... anyway what would you use........ahh being an artist then I guess it would be a crayon oe a number 4 lining brush or a fitch......and you were rather excellent at sudokuering as I recall. you opened the book correctly and were really quite good once I had turned the book the right way around for you and told you which end of the pencil had the point on it.. you seemed not to understand thought that No, the number 13 doesn't actually fit in any of the puzzles, even in the whole of the book..........lol
And wendy as for MENSA, yes I am a member
Oh for those who may not be aware, Mensa is a collection of goody goodies, the acronym means
ME No Sense Atall
well, it may be 'le crayon graphite' en Francais, true, but is a simple drawing pencil to me (a Staedtler HB is very nice!) Pens are intimidating but the humble pencil has multiple uses.
And I did not put a 13 anywhere..! That is an outright fib!
Alan - here's a link that you may enjoy that provides great explanations of some of the advanced sudoku techniques and gives you the opportunity to try them out:http://www.scanraid.com/sudoku.htm?bd=90...731200003090004
My favourite sudoku books, for those who have begun to get bored by regular "difficult" sudoku, are the Mensa Absolutely Nasty Sudoku, by Frank Longo. There are four levels. The first two are pretty straightforward, requiring only basic skills. But levels three and four use the advanced techniques that you can learn about from the link above. Those are challenging enough to make me forget pain.
By the way... love to hear your outrageous tales.
Let's see, an outrageous Alan tale.. oh I know a few!
One I can share from our recent kicker dinner... after fully captivating our waitress's attention, he went on in his usual charming way and with a tone of genuine sincerity, to request her hand in marriage!
I am still a bit surprised that she didn't instantly accept his offer! lol
errr well errrr..............I think the most stunning thing about that tiny incident (which is greatly exaggerated I must say)
Dumbfounded was I.......
Not a word exaggerated!
And, as I recall it, she didn't actually
refuse, did she Alan.
well I proposed to you too and you refused, can't remember whether I proposed to Kat!!! Might have proposed to Adam though!!!!
Odd eh that the waitress may have AS? You ought to tell that tale, Talk about coincidence
LOL... nope never once in all these years have you proposed to me, huh, I should feel a bit left out.. not sure if you did to Kat but am nearly positive that you are not Adam's type Alan..!
That one fellow in the bar however, he'd of accepted such an offer in a heartbeat. He was err demonstrably fond of you and your piano playing talents!
I can't tell that waitress tale cos it was mostly out of my earshot, so I only learned of it second hand. (Of course you'd know her life story best, having spent so much time chatting her up!) Come to think of it, didn't you give her KA's site address? It did sound like she probably has AS, yes, quite a coincidence! An honorary dinner guest - too bad she couldn't have joined us. There was an open seat right next to you.
yes I know, left on my own by myself on the end with nobody with me................not proposed to you,,,,,,,,well I am sure I have at sometime or other haven.t I
Huh! So now I'm nobody?
Didn't even notice me seated right next to you. Well that's a fine how do you do!
C'mon Alan, stop this silliness and get back to your story please...?
And before I forget... oh no you haven't! lol
will you marry the best looking man on the forums?????????
oh I think all are bored with the story but will write a bit more if you wish it.
Ahhh.. I sense a trick question!!!
Yes please, keep going Alan... I want to hear what happens next! You are only half way or thereabouts, aren't you?
You'd be done by now if not for veering off on crazy tangents!
No one is bored with the story yet, Alan. I check daily for the next installment.
One little item I thought I would share with you...
Yesterday, at work, a staff member suggested that the only reason I was still at work was my "indomitable will". I asked my husband this morning if he thought that was true. His answer was... better than ineptwill.
I do read him excerpts from KickAS to make him laugh.
Nice one Wendy I like it.
I have never ever been off at a tangent.....I am entirely and always tangentless..........well halfwayish yes oh and what is this trick question ou sense dear lady, clearly your response is darkly veiled and suggestive, what's afoot?
Right Wendy,tell your chap,
I challenge him to a duel. so there........is never a gauntlet around ehrn you need one is there!
I shall see himat the old barn at midnight...........might have done chapter 5 or was it 6??? by then....lol
Dont you atart, I have enough problems with these two.....!
Anyway we ugly blokes have to stick together....lol
Nothings afoot... I've just known you long enough to have had my leg pulled once or twice by you... or a few gazillion times might be more accurate!
Now on to your storytelling... yay!
He's probably waiting down at the barn for you right now. Watch out for the owls!
Now come on Alan pull your socks up(if you can reach)
Its about time you done another chapter. All your many fans are waiting. You keep avoiding it. You cant keep these poor girls in suspence any more they hang on your every word HA HA.
Perhaps the memory is going with age thats ok you cant help it they understand Im sure
Your greatest fan
T'was christmas day in the Harem,
the eunuchs strode the halls.
The sultan shouted
What do you want for Christmas lads
and the eunuchs shouted.................................
Well yes if seriously people aren't ticked off with me writing all sorts of rubbish all over the place then I will.
Think I was in hospital last time I was here, oh no
being laghed out of the hospital was more accurate, the knee aspiration, now that was an interesting affair, Was hospitalised for a good time on what was happily known then as "Bed Rest", Of course once they said, go home Alan, I got out of bed and immediately fell on the floor and was stooped, seriously stooped. This was the first time that I was aware that my posture had changed. It was a sobering moment. The pain was there, ever present, the fusion was doing its work, now I was bending forward.
No job to speak of and a drunkard. Something had to change.
The Foreign Legion seemed a good idea at the time, but, it seems they dont like stooped drunks in the ranks.
cleaning windows was out because I couldn't reach, lost the best job ever, disillusioned with playing because music helped me become a lush, the disease attacked on all sides. No money. A prospect of carrying on as a musician which held the promise of more booze, Giving up the band which left me bereft of income and adulation which was all that I had, although the keyboard players were always (if I may make a musical association) fourth fiddle to the drummer, wow he got the best, then the guitarist singer and trumpeter. I came up the rear but nevertheless was always willing.
I wasn't going to mention the cruder parts, the abject bits but. I had long chat with my very special KA friend (Guesses on a postcard please) last evening and she said write it. She already knows my awful history and still talks to me!!
I lost my home because I didn't keep up the payments, and as such was homeless apart from friends floors sometimes, the back of a van believe it or not was my bed for some weeks, parked on motorway service stations. Yes it is true, I was usually moved on by the police, I was becoming a vagrant, a hobo.
I gained a nickname in the band 'The Maestro' which indeed used to be my KA login, i didn't get the name because of any musical connatation, it was because of my trick, the trick of wooing a woman every night in order that I might get a bed for the night. I managed it now and then and was thankful of a soft bed. Back of a van does AS no good.
So as I said, the brain had begun to work, I got a job, in a music shop, I got a flat (apatment( using my girlfriends name (yes I had found a regular, (I am married to her now) Mrs Grim! Suddenly I was warm again, earning a little and the drinking was slowing down, But then I realised I wasn't stooped, I was a human walking stick. My girlfriend didn't seem to mind, she said she liked me as I was, heaven sent words, I change job, got a job for a hotel (The Royal Moat House Internantional Hotel -as was Nottingham)
Earned more money here, became a bit of a manager and ran the technicl services team. One day we were working aat the top of a tower scaffold maybe 30 feet up, because by now I was so bent I couldnt reach the work above my head, so had to sit on the railings at the side of the tower which gave me an extre 2 feet height, got me closer to the work,Idiot that I was and am, I slipped backwards in despearation and blinding panic i shot a hand out hoping to get hold of something, thakkfully I got hold od a railing and hung on, you see there is one huge benefit of having AS and useless back muscles, (bet Kevin and others will agree) your arms become much more powerful to compensate, because of this I was able to hang on until my friend Jeff who was up there with me, managed to drag me back up.........
Well you tell him I let him off this time, but any more castigation of me and my fantastic tales. wow..............it will be breadsticks at 400 yards.........lol
Oh thank goodness you didn't fall, my god Alan, that would've killed you from that height even without AS! You never told me this story.. it's a good thing you are strong!
A bit of a cliff hanger this instalment -- keep going please!
Postcards take too long, I am guessing Kat..!
Timewise, when was this happening, Alan? Eighties? Nineties?
He says you've got one up on him there because he's intolerant of breadsticks! He thinks I leaked the information that he's gluten-free and that gave you the perfect weapon.
Timeline is muddy really Wendy. These are all incidents in a fairly chronolgical order. Because I write instantly (Never plan or think about it hence my poor efforts) there will be some duplication. or contradiction.
I went to work for the royal in the early 80's (Breadsticks not invented then- but I would still have won the duel with a rampant pizza slice) fell from the tower mid 80s, I thought that my forward bend would prevent backwards movement, nit realising that leaning my head back would in fact roll all of me backwatds,
I will sit and think and plot out the timeline but is so much stuff littered across the years I become confused.
I was Born 1948....yay I know that bit is right. and it is now 2009. so 6 decades to order. I will do it tonight.
Brain must be a bit fuzzy at your age
.Not long now to your old age pension then you can put your feet up.
As we say up here Kevin, 'I have been your age, there is no guarantee that you will ever be mine'.....lol Hello Mig eh, careful, she is admin and tough on first time offenders, oh yes she kicked me off the board for a minth, all because..........well best not admit my naughtiness.
Hi Kevin, how go things. How far are you fron the coast?
Is Brighton millions of miles away? My dad is 85, I would quite like to drive him to Brighton and leave him with you.......ooooops sorry I mean take him back around his old hunting grounds, wonder if we could perhaps meet?
Hi Alan No but as we say down here Ill have fun trying...lol Hastings is on the coast about 48 miles from Brighton.Yes it would be good to meet when were you thinking of going to brighton.
I'm pretty sure you would have won the duel with any weapon of your choice, through sheer luck, if your stories are anything to go by.
I had a sense that the hotel story was in the 80s - so you were in your mid-late thirties by then. How old were you when your spine became completely fused? Had that happened by the time you fell from the tower? It sounds like it but, if that's the case, then you were still working despite your disability.
Good g0d, man! What a life you've led!
Just as a point of interest I worked In engeneering untill 12 years ago and had some very hairy moments hanging of roofs and inside tanks A lot of people ive met with AS have still worked untill they drop.
Hope your well rested now and feeling ok.
It's both impressive and reassuring to know that people can work through pain and disability. I've had some despairing moments thinking that I might not be able to continue in my job which I love, so I'm always on the lookout for stories from people who have found ways to keep going and make it work, especially when their disability is severe. It makes me feel more hopeful, although I'm well aware that all jobs are different and everyone is affected differently by pain levels and limited range of motion.
Anyway, good on you. I'd love to hear some of your hair-raising stories as well.
I done some realy stupid things in my life.One day my best mate was changing the engine in hes car and asked me to go with him to the scrap yard to get another one.I was about 20 so AS coming along nicely.Well we took the engine out of the doner car and had it resting on the front while he went to get help to carry it across the road to the truck.Stupid me couldnt be botherd to wait so picked it up and put it in the truck. Made my back ache.Im afraid pain dosent stop me doing silly things even now. The longer you can keep going the better you will be but dont be stubborn like me and hurt your self.
Hmm... that sounds like good advice.
I recovered from my near fatal fall from the scaffold. A fire alarm rang a day or two later, I was the hotel fire officer I was in the yard and so I ran into the staff entrance, a metal shutter. In my haste to save all hotel staff and guests from a life threatening false alarm (we never got to have a real fire-thankfully) I dashed to the shutter, saw that it was on the way down but barely, so 'ducked' under it as I hurried in.........Well, nearly hurried in, but was belayed by a newly discovered affect of Ankylosing Spondylitis. I wondered how it was that my eyes saw the shutter descending, my brain adjusted my posture to take me under it as it descended........well nearly except AS, fooled my brain and I was an inch too high as I went under........Arghhhhhhh........ next thing, I was on the floor blood everywhere and the shutter still descending. My head hurt like hell, thankfully, Johnny Ball, a chef....cripes Johnny Ball.havent seen him for years.....cripes.......oh, sorry yes, I was just inside the shutter, in fact it was he who had pressed the close button, and as such the guilty party....lol, he grapped my arms and pulled me along the floor as the shutter rang out a final closing serenade of metal grinding into a metal c/sill.
So off to the hospital again......."It's him again" the staff shouted as I went in clutching a bath towel sized cotton wool pad to my throbbing nut........stitched and all ok. I learned that AS interferes with sensory judgements and as such, slow tempo and entering through non moving shutters might be a better approach to fire fighting. Anyway, I didn't save anyone that day, not even my former, now well tarnished tough guy image!
I am well into the 1980's by now, was really bent forward. A chambermaid who entered a lift (elevator) that I was in greeted me beautifully succinctly, #
"Ayup (hello) Spastic"
She chortled merrily to herself, admiring her own fine humour. I was very aware that I looked different, really different and it was bugging me.
I had always been happy to be tall, despite the discrimination that smaller people seem to have for the tall! Now I was 'quasimodesque', people were laughing and pointing at me. Talking with each other about the crippled maintenance man. I was embarrassed often, and usually kept away from the jobs that were adjacent to people.
Unhappy in some ways with my work, having always aspired to some sort of cerebral role in life I decided to return to college. I was and am a terrible scholar, so this was a brave decision for me, guided really by the knowledge that one day soon, AS would make any kind of physical labour difficult, or impossible, and that the bending was increasing at a rate of knots, I decided to do an IPM, yep you got it, an
Oh you aren't sure??
OK. 'Institute of Personnel Management'.
Bernard, my boss, Nooooooooo Mr Greaves dont do that do teaching....what? Mind your business
Bernie Q..............and yet when I went away it struck me..teaching ADULTS, yes I liked that thought
And so it was that I came to meet Deborah Melluish, a gay midwifery sister, cleverly enigmatically known as Mel...lol
Mel gave me the best advice ofmy life, she became the heart an soul of me ......Mel died 2 years ago, she was 48, her death still not understood, her partner Val, ever distraught.......more of Mel tomorrow..................
Gosh it is a good thing you have a strong 'nut' Alan. Is amazing too that the door accident didn't fracture your spine in the fall, thank goodness. I hope you are being more careful to look after yourself now !???
Oh now c'mon... her name was not Mel! Err, was it? lolol
So how long are we going to have to wait to hear what her advice was? ahhhh I bet I know!
ahhh so think you know do you.......what do you think then!!!!!
I am not about to spill the beans or give away the plot, no way! Is far more interesting to read in your own words and creative writing style, Alan!
Hi Alan I can relate to the brain and sensory judgement Im always smashing my head on the tailgate of the car.
And I definatly understand the name calling that hurts more than the AS.
Great installment, Alan. I was afraid you'd given up on us when this thread disappeared off the active topics horizon.
Busting to know more about Mel and her involvement in your life.
You probably thought up a good response to the chambermaid but too late to be effective. Your quick wit these days would have made mincemeat of her!
Yes Kevin, I can relate to the tailgate, kitchen cupboards anuthing that sticks out, you think you have adjusted to miss it and then,,,,,,crunch......owwwww
Ahhh so accusing me now of being creative are you..........huh well so there to you too.......lol
Yes I realise that you know the story already and am sorry to bore you with it all again......but I am so exciting so am sure you will love a second hearing..........lol
Hi Wendy, well yes I did sort of think that I may have overkilled all of you with this and so didnt want to presume too far upon your good graces.
Anyway, Mig said if I didn;t write any more episodes then she would start talking to me again....!!! So wow get writing I thought...lol
Truth is, that as I write and try to order things in my memory, it is quite revealing to me, or reminding perhaps is the term, of my life and AS and other stuff.
Is like Kevin says, we that have it just get on with it, you Mig Kev John Steve, just live life, it is only when you sit down and deliberately think back that you understand what you did and how you did it.
See, I am rambling again, anyway if not too bored then will carry on.
I read your original post which prompted all of this, I see that I have neglected really to answer your questions and have instead, wandered down this path of wallowing self indulgence..! Sorry.
Anyway, Mel tonight............
Please carry on, Alan. I look forward to the next installment - one of the first things I do when I get home from work!
Come on Alan your late again
No petty excuses.Unless you have a note from a responsible adult( If you know any )
We are all waiting for the next instalment.
'We have it to do' said Mel. She always said it. We had been paired in a pretend teaching practice. Well there were three of us actually, Lyn the other, but she was only onthe course becasue she was having an affair with the lecturer, best not mention their real names here. In essence the lesson was downto Mel and me. Crime and punishment was the topic, we did a whole thing on James Hanratty, the whys and wherefores. When we had done we had persuaded the class that Hanratty should have been acquitted, I still believe it today.(ok Mig, go on, Google Hanratty-then you will see why acquittal would have been important!)
I became friends with Mel, a blunt talking woman, why dont you get your back straightened? She looked me inthe eye. Ohh they cant do that, there is no procedure I said. Crap she said. go to your doctor tell him you want surgery, when he says you cant, quote the patient charter at him....
Well I am not much of a quoter at the best of times, and certainly not to the doc, but onthe other hand. Mel wasn't the sort of person you argued with......cripes. what's that saying a rock and a hard place or something!
Well it so happened that I had, a year or so before I met Mel,toyed with the idea of asking about being straightened up. I mentioned it to someone, can't rememer who, but whoever it was instantly without pause, regaled me with tales of all of the ...plegias' I would get if I did, so I was put off. Rather like some on KA to this day, I weighed the life I had with AS progressing against the risks of surgery, on balance, I took the view that AS would be the lesser of the two evils.
I did nothing.
How though to respond to Mel, each week,
'Alan, we have it to do'.
Have you seenthe doctor, what did he say, what did you say, tell him he's an idiot......... Always a twinkle in her eye often we sat and drank coffee in the break, she would tell me tales of what it is like to deliver ababy, what were her thoughts about being gay and thereby unlikely to have children and so it went, and, so did I. To my doctor. TM we will call him.
Dry mouthed I sat in his room, Hi Alan, yes he calls me Alan we are quite friendly, what can I do for you? I want surgery on my spine to straighten me up........You are too old. Well I still want it. I am not sure if it can actually be done. Well will you find out I said. Alan this kind of surgery is very stressful, you are 42, this is big big stuff. Nevertheless, I said, a vision of Mel in my mind, sat at coffee demanding to know the latest developments. Yes I will said TM, I will refer you to the queens, (QMC) and he did.
Mel was thrilled and then started sitting with someone else for coffee. Not as an affront to me but it was with a rather stunning looking other nurse LK, I think Mel quite errrr.......liked her!
was summoned to Harlow Wood, the spinal unit was based there as I began this journey, it was switched to the queens fairly soon after. At this first visit, the stage was set for the coming metamorphosis.
J K Webb, the surgeon met me. (For info J K Webb developed the procedure of spinal osteotomy which is used world wide, but more of that later)
He stood at the side of me. Stand up as straight as you can he says. I am doing, says I. His huge hand then whacked against my knees, the knees went back, the legs straighter than for years, the shoulders neck and head tumbling forward and dow........that's you real shape. says he.......Jesus.........says I Imagine you are at the side of a busy road and want to cross says he. keep your legs straight and look across the road (well I must say here that there wasn't really a road in the examination room, it was a pretend one you see!!!!! I dont think there are many examination rooms in spinal clinics with roads through them, well of course there may be......
Of course, I had no hope of lloking across the road, imaginary or otherwise. A dawning of true and desperate realisation of the real me, and the knowledge that it could and would get worse.
JK then looked me inthe face, yes legs were bent again and head a little higher,
"What do YOU want ME to do" he said, then stared me in the eyes.
"I want YOU to straighten ME up" said I.
Ok, then we will............wow...........wow.....was this happening...
His two assistant docs had been messing with me and drawing things on me (Schobers test) (spelling) and importantly onthe lifesize xrays that had been taken that morning.
WHat are you doing? in an icy tone............well we are working out the angles snivelled one lowly trainee, well they are wrong, this is a mans spine ypu are dealing with, you cant work out the angles. you get the angles right......( If you look at my xrays on this site you will actually see the lines they made that day) it was a bit embarrasing so during his little dig at the trainees, i was busily counting the fascinating green carpet tile and trying not to be noticed, which, is difficult whrn you are a rounded over 6 feet 5 almost naked man in a room occupied only by 3 other men..
Was thrilled, elated. I knew that TM had come through for me, as he always does, and that they were going to do it.......wow..........I saw Mel the following Wednesday, told her all, she was back to coffeeing with me, I guess her overtures elswhere were perhaps in the wrong key!
I told her all.
She touched my elbow, smiled, super, she said let me know all as it happens, I was summoned to the QMC a month later, with instructions to take my lungs with me and at least one ear as well, breathing was the thing and they were going to test it, but why, would one need an ear.....
All agog Alan. Gosh, can't hardly wait for the next bit - this is more exciting than the two best matches at Wimbledon this year!
Shoot, was mighty brave of you to proceed. Dunno 'what' I'd do in like circs. Just dunno. Have been totally bent over at the neck, and that for several months. It was hell, and painful. But still dunno IF I'd have gone an done owt about it, IF owt could'av bin dun... Think we have to award you the KA STAR man. We aint got a star in those icon thinggies. Hmmmmm.
When is the next bit? Don't make us wait toooooo loooong, pretty pleeeeese. 'Smile'.
Molly C (ex-pat)
Reading this chapter makes me realize how lucky you were having someone who encouraged you into getting your back straightend.And Im really pleased for you that it worked out you seem a realy nice person (even if you are an ex copper)
As you know the chances of me coming through such an operation without being paralised from the neck down is very slim.So I have to eccept my life getting worse with my head getting nearer my feet.
Its just a question of how low my head gets before I choke.The hospital mesured me tuesday now 5'8.25". This dam disease is really the pits I wouldnt wish this on my worst enemy and ive go some pretty nasty ones.Your an insperation to others on KA keep it up
its helping to keep me sane. Although I doubt my own sanity
most of the time.
Kevin - you couldn't say a truer word. It's a pretty amazing story, isn't it?
Wish your kyphosis wasn't so high and you could be a candidate for something like this. Are you hoping that your new biologics will slow down the progress of the disease? And stop further bending?
Alan - it's a stranger than fiction story and you tell it very well. I hadn't thought about the bent knees so that you could see forward.
Reading between the lines, you must have been very scared as you got ready for this. Not just fear of paralysis but also of the pain of the recovery.
I'm very proud to know you and all the KickAs folk who deal with such severe pain and disability with such courage.
Ok, have done my googling homework as instructed
and thought the verdict obviously wrong and his fate so grossly unfair. What kind of a car thief doesn't know how to drive a car? Clue number one to his innocence!
Thank goodness for Mel and her intimidation tactics. What a massive impact on your life, having met her and her considered and vocal opinion, when you did. 'Alan, we have to do it'. It is hard to imagine, really imagine, the optimism you must have had to dream of being straight and go for it.
It is such a brutally cruel thief AS.
Thank goodness you came through that surgery with such success. wow
I believe you do have hope and possibilities, huge risks yes I know, but Kevin, you seem to be in the same place as I was, weighing the alternatives...........I do hope that there is a way forward for you and some fabulous quality of life waiting there in the wings...........just imagine, if you get straight, we could go out womanising.....................errr or we could stay at home and watch TV.......yes looking as I do then yes, staying in I think........lol
oh yes Wendy the old bent knees trick, bet all on KA use it. Am glad you are still interested in this stuff.
Yup, I use that trick to see a starry night sky, for putting in eye drops,.. or for looking up at really tall people standing next to me in crowded elevators... lol
Im not expecting anything really. I think its too late to hope for much at my stage.The idea of me going on Humira was to try and give me a better standard of life but as far as im concerned the only thing that could do that is being 6'4" again or close to it. Its very difficult deciding what to do. I think if it was just me I would say go for it and sod the consequences but I have to think of my wife and the children.I think at some point the way Im going there wont be much choice the more my kyphosis increases the harder it wil be for me to breath and swallow. I know my rhumi wants it done so I will wait till I see him next month and see what he thinks.Its the surgeons At the spinal unit queens square in London who are saying its too dangerouse.But I know they have a new one there who specializes in straightening spines so you never know.
Kevin - and why not a second opinion up in Notts, see Alan's surgeon. No matter what the first surgeon says, always useful to get a second opinion (wish I'd done so for this shoulder replacement of mine...!)
That kyphosis sounds bad. Mine is nowt much by comparison. Do you get problems breathing? My chest tends to hurt and the rib cage can be a stinker.
But nowt in comparison to you guys. Y'ALL remarkable fellas - courageous. Super to have a great family behind you, family and friends, nowt like. That's for sure.
(((HUGS))) to the guys
Well Molly, the next bit is somewhat 'Lascivious' thus I will permit you to read it only as long as you promise to wear a blindfold..!
Need to be battle hardened tough skinned and a grim type to read the next bit, is only one female onhere that I think is like that..............errrrr.........lol...thanks Mo;;y for your kind words.
Kevin, I agree with Molly. Mind you my chap has retired, he is nearly as old as Mig, so no longer practising.
If and I mean IF, you seriously want to go for it, then do quote the charter. They will have to have very good medical reasons for refusing, but, but but, work on neck and just below is dangerous stuff. Best to you Kevin.
Hey, I am young!
And Alan, wow, it appears your surgeon was still actively authoring papers and perhaps consulting, as recently as 2008!
Kevin, if you are actually pondering this, you might find these articles from PubMed of interest:C7 decancellisation closing wedge osteotomy for the correction of fixed cervico-thoracic kyphosis. Flexion osteotomy of the cervical spine: a new technique for correction of iatrogenic extension deformity in ankylosing spondylitis. Early complications of spinal pedicle screw. Surgical management of symptomatic cervical or cervicothoracic kyphosis due to ankylosing spondylitis. Clinical outcome results of pedicle subtraction osteotomy in ankylosing spondylitis with kyphotic deformity.
If I was ever confronted with the necessity due to troubles of seeing, swallowing or breathing, I would want to consult with either Alan's surgeon (with his vast expertise and yrs of experience, specific to AS), or a surgeon who had developed their skills by training under him.
I bet it is difficult to even contemplate.
cripes Mig, where did you find these. Told you he was a big wheel in the spinal world.
Am surprised he still at it in 2008 must be well past retiring.
I owe all to him, and Kevin yes, these articles renew hope for you I think. Well done Mig, really helpful stuff
Mig - Facinating. Good research gal. Don't think anything can 'be' done with my neck, but would sure like to consult with him, just for an opinion as to 'any way forward' with neck problems, even IF comes to 'just' cervical collar... Hmmmmm. (Thinks)
But there ya go Kevin. NO harm in seeing Mr Webb. Looks like he's the goods for UK. At least you'd get an honest opinion. I'd go for it. (Don't mean you 'have' to go for surgery...!) See him afore he disappears off the scene to total retirement growing roses or summat 'smile'.
Thanks for that Mig I will have a read later. I have just got back from a night in hospital having a lovely sleep study.Not much sleep too many wires.
Yes probably good idea to get second opinion Im going to talk to my rhumi next month about it.He is really good and knows a lot about AS Hes actualy from New York and I trust what he says.I do have some breathing problems at night which is why I have just had a sleep test. My rib cage is fused so pain only tends to be if I sit wronge or try and twist. Thanks for your advice.
Interesting It confirms what I had already found out for myself on some other sites. Im going to look into this more before my next rheumy visit.That will give me somthing to do Im getting a bit depressed with it all at the moment.
Im going to look into it more.Anyway when when
are you going to Brighton.
Oh Hi Kevin,
Brighton has yet to be arranged. It may be August September time, possibly and more likely next spring, Father is not having quite such a good year. I am already taking parents to France in August but if he is up to it I will get him down there this year and you can buy me a pint......yay
Reference to Mollyt and Mr Webb, I don't think he practices anymore but wow is best man inthe world (If you read the internet you will find his name everywhere\) if you can get to talk to him
Might buy you a half
There are several Mr Webbs working as Orthopeidic surgeons
But I found one older one working for a private hospital in
Nottingham. Trying to find a way of contacting him for advice.
Ahh is it J K Webb and is that at the Park Hospital?
Yes Mr John Webb Park Hospital.
Theres a photo of him on website.
Yes thaT'S THE MAN THAT DID ME. Have checked his picture.yay the best in the world.
Park Hospital is 8 miles North of me. But is private and pricey!
Best of luck Kevin.
Thought you both might like to have the link handy! Mr. John K Webb - Consultant Spinal Surgeon
Thank you Mig you are lovely.
Sometimes if you go the right way about it you can get advice. Just got to get in touch I will work on it.
Me and the wife are thinking about coming up to Nottingham for a day out.
Oh you are quite welcome Kevin; I'll have to share the hug with Alan though, since he's the one who gave it to me! lol
Its OK I gave it to him lol
Can't quite remember the name of that Finnish Javelin thrower, was a huge man, could hit a barn door at 9 miles. Well little did I know that he worked on the spinal unit in Nottingham, well it must have been him.....
Arriving in the Lung functions department, lungs in a bag, I was introduced to the diminitive doctor, a specialist in lungology, very pretty and petite, certainly working in the right department because she took my breath away...Now Mr Greaves, very formal and stiff, what we want to do is to hook you up to this machine, put this 12 inch diamater drainpipe in your mouth, ride a bike, fill in a form and pedal. The pipe will record your breathing rates as they change as you pedal, I said nothing.........well it would have been difficult!! A bit like at the dentist where they stick 2 hands, a mirror, a cordless drill and a water suction pump in your mouth, try to get their head in their as well and then calmyly say, Hi Mr Greaves, how are you today, well I ask you....So there I am practicing for the tour de france, breathing through a small sewage pipe, when the Finn sneaks up and sticks this javelin sized needli into my lobe............ahhh the ear, I thought, I looked atthe doc imploringly try ing with my eyes to say, am I supposed to keep on pedalling or can I punch this geezer, inthe meantime, blood running freely from my ear where a kind and fastidious nurse was catching it in a bottle. The medical profession do seem to always try to get you at a disadvantage!!
Ear lobes bleed profusely, they are apparently the best place from which to take blood for the blood there is rich in oxygen. The purpose of all this was to see whether my system (Pulmonary I think) could cope with the pressures that the impending surgery would place upon me. Like all spondylitics with a fused rib cage, breathing is easily compromised, 12 hours worth of anaesthesia to come would make those pressures severe. Thankfully a week ,,,,,,ahhh memory is fickle
Jan Zilezny, or something like thta.....yws the Javelin man
Anyhow, as I was about to say, a week or so later I was told lung functions were good and got the ok to proceed to the next stage. I couldnt pass go, I certainly couldn't collect £200 yet, but the medical obstacles, that may impact on the agreement in principle to proceed with the surgery, were reduced by 1.
I was counselled at length by the spinal team, paralysis, loss of sexual ability (well no change there then..oops excuse me), what not to do after the surgery and so it went.
Telephone rang, Hi Alan, Jenny Sycamore here...........wow blimey is it..................nooo dont get your hopes up, I'm not booking you in yet. To explain, Jenny was the spinal ward manager, tough cookie, but we got on ok.
"Yes Sister Sycamore"
"Alan I am just looking at your records, I see you are a smoker"
[**BLEEP**] I thought, this is going to stop everything.
"Oh Well Sister, the lung function tests were ok"
"Oh is alright Alan, just wanted to say that you won't be smoking on or near my ward, will you Alan?"
Well what can one say when given a choice between not smoking at all, definitely not smoking, or absolutely not smoking atall atall?
"No Sister no well I have tried acupun......."
The phone clicked and she was gone. The message indelibly clear.
Onthe Monday following, I was in my workshop/office at the hotel with Arnie Arnold, well he was Mark Arnold but I thought Arnie a clever skit on his surname....! You don't agree? Well perhaps not, I was taking a cigarette from my packet, Arnie was as well, our 8 o clock dizzy making drag long overdue,
"Im fed up of smoking Mark",
"Me too Al".
"Im giving up when I have finished this packet" I said.
Me too Al he said, I had 3 inthe packet he had 17. It was by chance a busy day, so I got a cigrette in the lunch break and mid afternoon, this left 1, I smoked it in the car on the way home, halfway through it I recalled my silly morning claim not to smoke again. I never have. Mark still does!
I was next summoned for the big tests, the ones to map brainwaves the critical neurological stuff, had AS damaged me so much that my reponses, to signals from the brain were impaired, the prospect of this troubled me, I wasn't on the operating table yet, would I get there?
A multi coloured plastic wig, a garden hosepipe and alack of laxative would decide.....
Oh the tension...da da da dum... Good job I know the ending. I always read the last page or two of fiction before I start the book from the beginning so, luckily, I'm surviving the wait for the next installment.
I'm highly suspicious about the role that laxative is going to play.
Gosh Alan, so you won the famous tour de france? Wow. Good job!
I've been trying to imagine how that conversation must have gone, of you being counselled at length by the spinal team on the risks of surgery. That must have been a pretty sobering and serious discussion. I wonder, did they discuss with you the relative risks to your future health regarding your prognosis and what you'd probably face in terms of progression, without such surgical intervention? Sorry, a serious question I realise - just ignore it if you want.
A map of your brainwaves? I'd be fascinated to see that printout..!
I'm ignoring this question, it seems also, that you doubt I have enough brainwaves to make a map!!! Well let me tell you, they don't call me Al the Atlas for nothing you know.
Seriously no, not too much talk of longterm future, mainly immediate post op, but buzz off you are sneaking free bits of story...lol
As an aside, it is a serious point that you make. A decision to give me this surgery, which at the time was huge, and very very expensive was made based on my prevailing condition which was deemed to be serious. 15 years have gone by. It is a dread though of what I might have been now if I hadnt had the op. My AS fusion and deformity moved onward quickly, gravity adds an exponential element of degree of bend, in other words; the more bent, the quicker and more you bend! I may well not be alive today but for this surgery, or at least, not wanted to be alive.!
Hope all goes well for you today dearest of KA friends
no clue which chapter this is, Mig confused me!
In the meantime there is a bubbling sensation, growing, worrying. Not in my body but at work. I worked for Queens Moat Houses, a large Hotel chain mainly in England but with Hotels in Europe too. Excellent Hotels, ours in particular was spectacularly well run and making pots of money. The newspapers, when it broke, ran the headline
"Second largest ever british business loss"
2.8 Billion in debt at, Queens Moat Houses. Redundancies inevitable!
I was summoned again to the hospital shortly after this, whilst there my head was wired with more than 50 cables, sandpaper used on the scalp to ensure secure glued fixings of each cables to my brainy nut. Wristlets were fixed together with straps around the ankles. Electrodes then at neck, shoulder, elbow, thigh and knee.
Laying on a bed, my makeshift wig stretching out above me (taking me well over 6 feet 5 for the first time in years) I was wheeled toward a computer where the 50, other ends, of the cables were slowly painstakingly connected to the input part of the machine. I wasn't worried, computers had taken men to the moon, surely now this one wouldn't fail and cause my hair to stand on end!!
All was set. On the bed, wires everywhere then one by one charges were sent to eah of the ankle and wristlets. It felt really odd. I found myself involuntarily giving the thumbs up sign with both hands, at the same time, simultaneously and together..!! There was nothing I could do to stop it. I did think that reastaurants might utilise this technology,
"Did you enjoy your meal sir?"
A waiters furtive grope and surreptitious poke beneath the desk, a quick press and an unwilling thumb, or two pop up affirming that the meal was super dupe whether in fact it was or not.
I digress, whilst all this was going on, a brainwave was visible on the monitor. This was kept and stored. Times were measured in terms of delay from brain instruction to move thumb to thumb actually moving. Later this information would become the most critical tool, other than the hammer and chisel, used in the surgery.
Queens Moat board of directors were all removed bar one. New team selected by goverment officials were placed in charge. BA the only former director remaining was awarded the unenviable task of sacking many Hotel General Managers. Cruelly, whence he had completed this grim deed, he too was removed. A dirty trick.
We were untouched. Michael, (the big boss and my friend, a man moving in a diferent social world to me, my boss, a tough guy, seemed to like me, we always got on well and became good friends. There is much to tell of Michael and the cruelty of fate, I have an empty space in my heart, but that is likely yet another tale for another day) explained at a meeting that he had had enough and would be moving on, he felt that others of us would be at risk too, he managed to secure a good voluntary redundancy package for me.
I left the hotel, New Years Day, 1994.
In the meantime Jenny Sycamore had been busy and had let me know that all tests were now done, counselling complete, and everything was a go. Wow.
Did I want to proceed? she asked. Of course I did. Odd for me to be so determined on a course, but in this case, the moment J K Webb said they would do it, I never waivered (well nearly never, there was that one moment!) from the pathway to surgery.
I said a sad goodbye to Michael and others at the Royal. I had enjoyed great times there, the job had put me well on to enjoying life without drink, put money in my pocket and stimulated my intellectual desires, I had loved the Royal, so left with a heavy heart, but knew that when Michael left the following month, that it would never be the same again.
I used the redundancy money to build a small workshop a the side of my house, I had a plan.
Jenny rang me in March, the date had been set....May 4th....
How odd is the formulation, the timing of life's chapters, a happy time at the Royal ending, a huge door opening toward what could be wonderful or terrible......i had a cup of tea.........the hosepipe next......
Hey, no blaming your confusion on poor me, Alan!
It wasn't that I didn't think you had enough brainwaves lol... but rather that I was envisioning this massively complex printout, lines bursting in colour
and moving wildly across the page, every which way at once! A sort of kaleidoscope composition to match your character and uniqueness! You could've had it framed and sold it for billions as a one-of-a-kind work of art.
You could've crafted a nice wooden frame too in your spiffy new workshop! Yes, it's too bad you didn't ask if you could save it. lol
May 4th... so you are getting near THE day.
Keep it up, Alan. Love the story and the suspense. Like Kevin says, you should write comedy scripts. Your dark humour is delicious.
oh yes would have been a rubens-esque view of my inner workings, or not workings, as the case may be.
Spiffy new workshop has had 4 new roofs and guess what..........!
Thank you Wendy, you have said some kind things to me during this voyage. Mig should buy you a pint!
Thank you for your kind encouragement.
Just for you.
England this morning, (well my bit of it) Cloud cover drifting away, sun burgeoning, warm, grass a succulent crunchy green, scent of honeysuckle and late philladelphus alive in the still air, the dawn chorus running late beautiful and evocative, all serene apart from that bloody great lorry (yes Mig Truck to you)...........arghhhhh.
Kevin my wife says I make her laugh too, mind you she never sort of mentions comedy scripts, rather more of a baleful glare
"you make me laugh you do, huh well if you want a job doing huh do it yours..........." and so it goes.
But since you kindly say I should write a script well lets have a quick joke....errrr
the boy stood on the burning deck
Ok so you got a better ending..
Hi Kevin, say hello to Mig for me.
Due for a 5th now, is it...?
I seriously hope you are planning to rent a young back and NOT go climbing up there yourself again this time. Let's see, fifteen divided by 5 is um... gee Alan, a new roofing design concept might be in order, one able to withstand the gale force winds of Nottingham! (A sheltered walkway might be nice too!) Just be careful if consulting an architect
remember the ROM...!
Lauren Harris.............who's he then, oh that was OCA.......err ROM,,,,,,,,,,,,ahhh the architect I see, the leaning wall of toronto, you hated it I loved it, and you say you're an artist, bet my friend C would love it............lol
Nothing wrong with my roof concept oh and I think it's 6 not 5 so odds evermore against me, yes need a cheap hero...............lol
Trust trips this week have been satisfactory and that you are more at your ease?
The boy stood on the burning deck
He's back as bent as hell
Have you got spondylitis
why sir how could you tell
Is it the way I hold my posture
Or the angle of my head
No i was talking to the captain
and its something that he said
You always look like you've lost something
And your looking at your feet
If your not very carefull
Your head and feet will meet.
I know a man from Nottingham
Ineptwell is he's name
He suffers from spondylitis
And he gets a lot of pain
He used to be all bent and stiff
Untill he met this Doc
Who said I will make you straight
But it will cost a lot
He had the operation
And is now all tall and straight
If you talk to him on KICKAS
He is sure to be your mate.
No its an English thing Ive always been a big twit like him.
Ok, but Lawren Harris hangs in the AGO... and as for the ROM, I never said I hated it..!! Well I am almost certain that was not the word I used. (I reserve that for OCA!
Although I confess it is growing on me over time.)
You have to admit though, that it's a 'potty' architect who designs a roof that instantly turns into an efficient, automated icicle-manufacturing-machine each winter, creating massive deadly spear-like forms which hover threateningly above the main pedestrian entrance to the museum, daring all patrons below to look up in fear for their lives! Not to worry however, as they've solved this minor bit of trouble with the new Helmet street-vendors and a sign that reads, "$5/helmet rental OR Enter At Your Own Risk!" Oh yes, it's charming.
The AGO won my vote in the contest, hands down! Besides, they have Lawren Harris inside! wow
Brilliant stuff Kevin and funny too
The boy stood onthe burning deck - the fool, has a certain something don't you think....lol
Yep champ for the day is Kevin
seems I now have to try and write a proper poem to knock you from the winners throne......now let me see....errrrr
Kevin - you are bl**dy brilliant! And I understand the "English thing" - it's that wicked dry humour that I enjoy so much but goes over the heads of some of my north american friends. Except DOW. I sometimes get confused and think he's English.
Anyway, love your verse. Had to read it aloud to my husband (who is also English).
Don't let your head meet your feet.
Very evocative, Alan - including the lorry.
Now I live on a beautiful, quiet island surrounded by ocean... with little hummingbirds darting in and out of the honeysuckle and roses outside my window and small dainty black-tailed deer dancing on the lawn...
Sorry forgot you
Kevin and Wendy had a hug
or two or three or four
but if I change my name to Doug
get even more
Do OCA know that you Moved Lauren Harris to AGO.
Have to confess looking back it was startling stuff. And you, getting all excited at the light on the snowy mountains. Then at the ROM excited again over a chinaman and me desperste for a cuppa. What a wonderful trip it was. I can proudly claim that I have now conquered all of the acronyms in Toronto, including CN
oh Kevin, it was really quick, couple of hours tops.........
As quick as that did you use a spell checker.Ive got another one to post soon.
Startling is a good word! His sense of the canadian landscape, sky, forest, water snow and ice, the breathtaking luminescence, shape and form and light. Wow, hard not to get excited!
Ok, sorry, a brief Lawren Harris interlude then:
It is a bit of a trick mastering the acronyms
isn't it? Good job you!
I think your best bet is to stick with your own name Alan.
And hey! Where is the next chapter please?
And Wendy, I fell in love with those small dainty black-tailed deer you have out there on the island - they are just adorable, and everywhere! Made me a bit nervous driving tho!
Mig - love that work. Didn't know of this artist. WOW. Yes. Says it all about the C. landscape. Stunning. Thanks for posting
dont want you left out
Hey come on Alan whats happening you cant leave your public in suspence like this.We all want to know the gory bits.
Not sure whether you all realise, but Kevin says 'Hello;.
Arrived at the hospital on a Tuesday morning, huge long drive, nearly 2 miles! Ward D8 west block. Now Queens Med is big,big,big, a hideously designed building externally, but ok inside. I had concerns that it would take me forever to find where I needed to be. I was uptight, I had not been an in patient for some years and never at the Queens. Thus I was uncertain as to how it would go.
Went to the main reception desk
"Excuse me could you direct me to ward D 8 West block please, is it far?"
"Get in the lift (elevator) there, go up 2 floors, go in the door facing the lift and you are there."
Wow, and it was this had all been so easy, a good omen I thought.
"Hello my name is AG, I am booked in for surgery"
She shot it at me, an accusation almost.
" Ahh well you see the traff........." I stumbled.
Then she smiled,
" No its ok, your bed is ready, you are in Blue 6"
I realised that my own anxieties had caused me to mis-interpret her manner.
"I'll fetch Sister Sycamore"
As she said this I saw the formidable personage of Jenny Sycamore bustlig around the corner ahead, moving towards me. Suddenly, all staff were apparrently, very busy.
"Hi Alan, lovely to see you, have you booked in?"
"Was just doing so"
" Ok I'll make you a cuppa"
Wow she was lovely and whilst she was clearly the boss, she had a lovely nature.
"Oh Jenny" I chanced my arm with her christian name.
"Jenny, I stopped smoking"
I felt sure she would congratulate me on this success. She looked at me and smiled.
"Oh I knew you would" she said and headed to the tea room.
I sat with a nursing auxillary on the bed at Blue 6, a small ward of 6 beds, two rows of three, facing each other. Mine was on the end nearest the corridor. How useful that turned out to be!
I filled in all sorts of forms, signed all sorts of forms, filled in more forms, had a blood test, was weighed, urine sample given, temperature and all the usual stuff. Was a wonderfully relaxed routine. Surgery was definitely scheduled for next morning.
All forms satisfactorily filled I asked the auxillary if i was now to get into bed. I sort of expected that I would need to be pyjama clad and goody goody-ishly tucked up, ready for Matrons visit.
"B u g g e r off to the canteen".
"Oh" somewhat taken aback,
"Straight down the corridor at the end".
So I did.
There were a pair of peculiar things happened. One I remember, was walking along the corridor when a smartly dressed man walked towards me. He stared at me. For some reason I was walking full stoop, I had neglected to do the knees bend trick, I felt this man swivel and stare at me as we passed by each other. I felt sure that he stared at me all during my journey along the corridor.
I had a sandwich; then went to the ward once more.......
"Ahhh where have you been?"
"Canteen as I was told"
" Well we have forms to fill in"
I explained that I had done all the forms but was told no there were some more.
Was moving into the afternoon by now so I sat and read a while.
My wife and young daughters visited early evening. I was visited too and at the same time by the anaesthetist.
"Can we see Dad tomorrow?" Asked Ruth.
" Oh errr..mmmmmm..well err tell you what Ruth"
said the anaesthetist,
"Perhaps be best if you leave it a few days because Dad might be quite tired!
The first indication that this was not going to be entirely an easy ride. Rufus was upset, Esther, my youngest, ever the pragmatist was stealing my lemonade and a chocolate biscuit. Well she has always had a capacity for identifying the more important matters.
My family left, wishing me luck and promising to be there (Well Ellen-my wife) would be.
Alone now with the anaesthetist, a down to earth man he asked if he could do an experiment during the surgery.
Normally, before these things, one is drowned in laxative to errrr........wellllll.... not to put too fine a point on it, to empty the system. He didn't want to do this, he wanted to insert a tupe through the nose into the gut and stop the gut working, then take noxious fluids away via the tube.
"Will be ok, we will insert it whn you are under the anaesthetic".
Well that may not have been my best decision in life, given a choice of that again or being trapped under a hotel shutter, well the shutter looks inviting!
Chis Craine then came by. (You can see him on Adelaide Spine Clinic website).
" Alan you will feel some pain when you wake from the surgery, in the legs"
"Oh that's fine, I didnt expect it all to be easy, I will cope"
He gave me a knowing smile. He then drew out on an envelope precisely what he/they would be doing, and drills, hammers, chisels, screwdrivers, spoons and much other equipment would be used.
"See you in the morning then Alan". A very nice man.
Jenny appeared, she seemed almost to live there.
"You are first in Alan because you will be in all day, so up at 5 in the morning, shower, bathroom, then the technician will wire your head"
I was alone, in bed now, thought to do a crossword but found that I couldn't concentrate. I slept not at all that night, I wondered who was the odd man who had stared at me inthe corridor, why couldn't Rufus see me the next day, why was the theatre booked for the whole day, all in all I was in a euphoric state not quite believing that this was all happening, but thoughts were beginning to form deeper in my mind, wow wouldn't it be marvellous home in a few days, tall, lovely.......AS though even when retreating from skilled surgeons would have a way of letting me know it was still there. 4 am dawned, I needed not to be woken, I wandered to the loo and errrr...couldn't, god what if I do on the operating table, a little fear set in there, then the techician arrived. There were only two articulated lorries (trucks) full of cables, it took her two hours to wire me up, then a porter arrived, J K Webb grabbed my big toe, morning Alan, ready?, I was wheeled to the elevtors then seemingly wheeled miles to the theatre suite, the Anaesthetist awaited me, he held a large garden hosepipe in his hand,
"Is a bit bigger than I expected"
Dont worry you'll be asleep. Chris Caine walked past me, touching my arm,
"You ready then Alan"
I felt a ticking in my left arm. the anaesthetic was going in, a clock on the wall in front and above me said 6:57
Jesus christ, what am I doing here god will I be ok, I thought, then I was back in bed not that I knew I where I was, who I was or what I was, I only know I was screaming...........
Perhaps I shouldnt read this dont like the idea of a hose pipe shoved up my nose.
Alan - that may have been your best episode yet, in terms of suspenseful detail - less bullsh!t and more adrenelin. You have me gripped - try not to make us wait too long for the next episode.
In addition, given that this is a real and personal story... OMG I know this was a shocking and yet amazing experience that must have been horrific to go through even though the results were so much an improvement for you.
I hardly know what to say - it's terrifying just reading it.
Gosh Alan, you were so calm going in... I would have been a total wreck. Just shows, I think, how much your optimism must have been driving you and borne from the very grave need for surgery and for a good outcome... otherwise I can't even imagine how you were so brave facing this.
I love Esther stealing your chocolate biscuit (clearly takes after her Dad!) and Ruth's consternation over when she'd next get to see you. And the clock on the wall... wow.
Well of course screaming might be an overstatement, and yet perhaps not, for to wake from such a procedure and be confronted, in the flesh by Alan Parsons, well a difficult thing to take. But there he was I was DOWncast to see him there, DOWnhearted too and thought that things could only get better from here!! (this is not part of the story but a secret message to a DOWdy friend!!
But screaming I was, Pain, yes pain. I was full of morphine (you must realise that I now write is with in the faith and belief in the truths that I was told after the events. At the moment of waking I was incapable of thought, I had no awareness of who or where I was. A primeval sense within me kept saying something is wrong desperately wrong. But what was wrong. I had no idea for I had no idea of what anything was.
A 4 inch by 4 inch square appeared before me, it had vertical stripes of various greens, I knew this square, well didn't know it, but deep within I knew that this square meant something to me. It disappeared. It came and went many times.
My face hurt and had something sticky all over it i kept trying to push it off,but then it was there again. My right forefinger hurt and felt squashed. I felt tied down and could touch the ropes that contained me. The square appeared. it waivered in front of me and then was gone, what was this square, I should know this square!
I yelled out and was engulfed in remorseless pain, pain far worse than that, that I have known all my adult life. This pain wouldn't go away, I couldn't get into a position where i might relieve it a little, I screamed. My finger felt funny, what was this sticky think over my face. Then noises, then the sqaure, then the pain then the noise then the square and the pain.
It went on, day after day.
My mind reeled, I began to have thoughts things that I knew were thoughts, will it be best to keep pyjamas on underneath my suit or best to keep suit under pyjamas, I couldn't decide which would be easier, if I keep suit under pyjamas, I can get to work easier, but then what about bed time, no perhaps pyjamas ocver suit so when I have finished work I can go back to hospital and get into bed.
I dont want a shave, I can shave myself. Green square, Hilary shouting, hold his head, scrape scrape as the blade shuddered across my face. I dont want a shave, green square steady now in front of me, pain, screaming tearful pain pain pain. Who was I what was happening to me.
And so it went. Morphine is not fun, it plays with the mind, and yet without it what would that pain have been like? I had somehow worked out that 4 days had passed, had realised who I was, where and why. I knew then that I was ok now because the 4 days had passed. The green square got a little bigger. Look at yourself, look at yoursef. It could talk.
"He's taken that clip of his finger again"
I heard in the distance, Someone squashed my finger.
"Will he leave that mask on"
"Alan, now leave the mask, it will help you breathe"
"I don't want it".
"Alan hold this button, now if it hurts, just press the button. It will give you some morphine amd stop the pain"
I pressed the button like I was in the world button pressing championships, the pain continued, unabated.
This went on for hours I wanted to be dead, I didn't want to be here and didn't want to be whoever I was.
I was inthe HDU ward (High dependency unit) I had been there 2 hours, not 4 days.
ok st yourself look at yourself. It was the next day now, I had spent 24 grim agonising, sleepless hours in unstoppable agony I begged for it to stop.
The green square appeared, it was attached to other green squares which formed a blouse that my wife was wearing, she had been there all the time, look at yourself she said.
"I dont want to effing look at myself, if I had known what it was going to be like I would never have had it done, you just don't understand"
Yes I actually spoke thise silly words, to this day I can hear myself saying them and looking at Ellen, crushed by my cruelty. I regretted it immediately, even through the morphine haze, the pain, that bloo dy mask sruck to my face i knew I had been selfish and hurtful sadly I wasn't able to formulate apologetic words for the mental capacity wasn't there, I think to this day that that comment sits between us.
F=Day two, and I was alert now and because i was alert realised just how much pain I was in they were reducing the morphine, another shave from hilary, arather cool mannered humourless nurse, efficient though and extremely capable.
Then Physio arrived, and my life got a whole lot worse....
I hope you dont mind me saying but I think you have given a bit too much information.I respect what you went through and understand what your saying but I feel anyone reading this who is looking at having this surgury or what I am facing would be put off. I know your telling it as it is but I think some times you have to be a bit conservative with the truth. Im certainly not afraid of pain or suffering but the thought of going through that and it not being succesful no thanks, Unless Im told I will die without it forget it. You have put me off completely.
To both of you, Pain is passing, It was grim for 5 days, but then it got better and better and eventually I did as my wife said and looked at my straight self............orgasmic
no fiddling pain could have outweighed that incredible moment
They featured me in the local papers and in the sunday mirror, a national of ill repute. one headline said
15 years of misery staring at the floor...........yes misery as we all understand but i was joyous joyous joyous
5 days bear death stuff was nothing at the side of that.
So both of you, there are 3 more chapters, do I write it
or do i stop?
Well, I definitely think you should write it Alan... and especially because without describing the days and weeks that follow, and the great benefits, then the last chapter will stand out of the full context of the ultimate success of your surgery... and your gratitude for having it.
One question... knowing now what you went through and all that you had to endure, would you do it again?
Thats your decision I know you came out of it ok and happy and thats great Im realy pleased for you but to someone whos facing it I think that would really put the shits up them.How would you have felt if you had read that the night before you went down. As I say I dont mean any offence and I respect what you went through.Its just my opinion perhaps Im wrong.
Well my dearest Mig, you already know but the answer is a resounding
Perhaps Kevin my writing has to much melodrama within it and I have made it sound worse than it was. It would be wrong though to understate the procedure.
Ok fine we will agree to disagree Ive said what I think and I will stick by that.Any one can say they would do it again after the event.
Hello Alan, yes and that's why I wanted to ask that question since I felt Kevin might benefit from your answer.
It is hard to imagine for me... I am not sure I could have made the same decision as you... not due to reading your posts so much, but from having been at my Mom's bedside and watching what she had to endure after her surgeries. Horrendous to watch someone in such pain (she's not allowed morphine due to ailing kidneys), but, she has enjoyed some wonderful years afterwards with such an improvement in her quality of life, and she may not have lived otherwise to be with us still.. though hers was not a choice, I am thankful everyday for her good outcome. I am also very grateful for your success too, as I wonder if we would have ever met, if you didn't have the surgery, but then that is just plain selfish of me! lol
*Oh I should add since not obvious, my Mom's surgery was not the same at all, she had her left leg amputated just below the knee, after a failed surgery trying to restore bad circulation problem.
Kevin, I can't imagine the difficulty and appreciate how the experiences of others must weigh more heavily on you, but I know that whatever YOU decide will be right for you.
Wow! I hadn't popped in here in a while and was stunned when I saw how many posts were now included in this thread! I'm trying to get caught up today, but it might take a while.
I just got done reading your post, Kevin, about the surgeon who said they would have to break every joint in the spine as they worked their way up. My response to that is the same as Alan's--huh? Or less politely, WTF? That is definitely not how the pedicle spinal osteotomy works, and in fact, I don't think doing it that way is even possible with an AS patient!! With the surgery that Alan and I had, along with John, Cheerful, and others, the doctors made a break in the spine at just ONE place, cut out a wedge-shaped piece of bone, then pull you backwards from your shoulders so that your spine slowly pulls back and down and "closes" the wedge up. Without being able to do a drawing, it's pretty hard to explain it any better than that. Just picture holding onto a curved metal rod. You want the rod to be straight, but it's too strong to bend as is. But, if you cut a small wedge out of hte metal right at the point where the curve is at its most extreme, you should weaken the rod and now you can bend it. OK, now picture holding the rod in your hands. The curve angles upward in the exact middle of the bar, meaning that you hold one end of the bar in each hand, and those ends are both a couple inches lower than the curved center is--it's not even close to being a U shape, with the ends pointed down, but instead picture maybe the wooden part of a bow (as in bow and arrow), ends pointing down, curve of the bow pointed upward, you holding onto those downturned ends.
OK, I realize I am totally overexplaining this, but on we go. As you hold that metal rod, which now has the wedge cut out, just picture bending each end upward. Whereas it was too strong to bend when you tried it before the wedge was cut out, now that it's been weakened, it bends easily. As you bend it, if you watch the wedge you will see it start to close as the rod become straighter--the rod starts to pinch together to fill in the gap that is now there. Eventually, the rod will be totally straight, and when it is, the wedge will be almost filled in because the two ends closed it off.
Now, that is exactly what they do with your spine--as I started to right before I got sidetracked trying to explain things better--and that wedge closes up too. With your spine, however, the wedge cannot close all the way by straightening out the patient--you can get close, but not closed al the way. Because of this, as another part of the surgery, they cut a small piece of living bone out of a donor site in your body--usually the pelvic bone--and insert those small bone chips into the small opening that still exists in the wedge. Because that bone is living, if things go right, it will graft to your spinal bone and, in a fairly short time, completely seal over whatever openine was still left in the wedge. This is important, because until it does totall graft and seal, your spine is at greater risk of breaking or being damaged and is not as strong as it will eventually be. That fact--that the spine is at great risk until the break that was created is totally sealed by new bone growth--is just one of the hundreds of reasons I can think of that I can't EVER see a doctor doing an osteotomy where he breaks EVERY joint in the spine. Make sense? I would be very leery of that doctor, and at the very least, I'd ask him what in the h*** he means when he says he'd have to break every joint in the spine? Tell him this is now how any osteotomy you've ever read about works (nor is it similar to any that your friends at an AS have been through), so how does this particular surgery even work? Better yet, why doesn't he do the standard
wedge osteotomy that only involves breaking the spine once, not multiple times?
On a completely different note, Alan, thank you so much for telling your entire story! I am through part 3 as I right this and can't wait to read the rest of it. I had no idea you were ever a police officer! You have led one totally fascinating life my friend--makes me even more bummed that I didn't make it to Toronto!!!
I knew there was a down side..............lololol
In the end the decision was made for me really. Kevinmentioned in a post somewhile ago, that he thought that fis stoop compared to mine at surgery, was worse, However (Oh cripes, starting with a preposition again, ahh well) the photos of me were 2 years pre surgery, I was a head lower at the surgery time. I have now lived 15 years more sins and have bent another foot despite the rods. What would I have beebn like now if no surgery No I had no choice in the end I would have been dead else.
hi Brad, yes so sorry not to meet and it was YOUR round too...Mig wouldnt pay !!
Sorry to have bored you all with this tale of surgery
Read it with bated breath Alan. Dunno how you endured that pain. (When I had my shoulder replacement, apparently I was delirious with pain and screaming in the recovery room - but have NO memory of it! TG...) Lots of memory afterwards mind you, ALL 9 months of it. Hell. So, again, dunno 'how' you survived those pain levels. Dear Lord.
Next installment please.
You write well. No glossing over, just simple facts. Good. Very readable. One empathisers. More power to you -
Molly C (France)
Keeping on Keeping on - but nowt like our Alan
Oh Brad, maybe you just haven't read it all yet, but Alan's was a bit different than the norm - his was a double osteotomy - two wedges! Check his xrays and the drawing on them, there is a link on an earlier post.
Yes, is too bad you couldn't make it to TO, but maybe next time eh?
Thanks Molly, you are kind. Yes it sound ridiculous to say "Scream in agony" nobody does that do they..........well actually you did, and I did, a grim experience. Thank you for pitching your experiences into this. Makes me realise that I am not writing from distorted memory.
So Molly, Mig's question to you then
would you do it again?
Thankyou for that I understand what your saying.The difference in my case as I was told is that my spine is mostly curved at the top and they would have to do the operation like yours at the bottom of my spine and work up and do the same at the top and break my neck to reset the position of my head. Because the operation at the top of my spine and breaking my neck is very dangerous they will not do it at the moment. They have not ruled it out completely obviously if I get worse then there might not be a choice and I am getting worse.
Question: "Would I do it again?"
With what I know now, no. Reason being, that I 'don't think' it was necessary in the first place.
Left shoulder had been playing up for several months, and was getting really bad. Interrupted sleep could hardly use left arm, difficulty in driving - manual change, small truck. Then started Pilates. And was responding very well indeed. Had got back a deal of ROM (range of movement) and, some strength. Began to have heavy doubts as to going ahead with the surgery. Really wanted a second opinion - and had IDeed a top ortho surgeon, upper limb (who now is with the Wrightington). Unfortunately, I was so darn broke and at that point in time, could only go outside my PCT area by going privately. Sigh.
Went ahead with the surgery - and this in spite of my heavy feelings of *Don't go there* doubts. The surgery was a bit of a bodged job. Prothesis 'seemingly' a tad too big, much tendon damage, much tissue damage, much muscle damage. He was ALSO supposed (!) to have done a SAD/ACJ, operating notes said he had done, but, when I went to the Nottingham for a second opinion, surgoen there, looked at X-rays and said, NOT DONE!
I was in terrible pain for 9 months. Could not lift left arm above 10" to the front, and not much more to the side. Getting dressed etc etc was diff. Could not drive, could not even hang out the washing. Nothing. Tried one day to tie in my clematus, impossible. Could NOT lift arm to tie. Agony. All the time in very bad pain - in tears most days. Had to sleep on the settee as could not lie down: had to sleep propped up. So, back supported upright in corner of settee, legs on footrest/pouffe.
Bodger surgeon 'washed his hands of me'... Tried to stuff a cortisone injection into my shoulder, I refused. Knew enough by then to know 'NO.' Cortisone can wreak havoc with shouler tendons. Weakens em. So, went for the second opinion, and then we found out...ho-hum. (Should have sued the &*%^$£D)
After the SAD/ACJ followed by *excellent physio therapy, matters started to improve. My ROM now is excellent but, still got the tendon and tissue and muscle (supraspinatous) damage and of course the catching due to the prothesis being a tad too big. Most times am pain free, but temps-en-temps...not too good.
Right shoulder has started the same run around. Receiving PT (not much good over here, but augumenting with what I know) and slowly right soulder is improving. Plays up sometimes, but...NOT going there again. No more replacements, thank you. I have trust in only one hospital and in only one surgeon. IF it gets truly terrible, then will return to the UK - but only for an opinion.
IF the surgery had not been bodged, then...
But yes, did scream, and scream in agony. And it went on and on and on. Until I got the SAD/ACJ surgery, nine months of hell.
Strangely. It was only from that time that my face became completely lined, wrinkled like linen wrinkles. I hardly had any lines at all before, but now? Completely wrinkled up. And my hair went white blond (from being dark red) almost overnight. My s-in-l when she saw me, had difficulty in hiding her surprised horror! (She hadn't seen me in about a 12 month, and had came over to help out.)
But our cases are different Alan. Know that my cervicals are playing up. Every day, at end of day and first thing in the morning, and now the endless headaches. But, still could not do what you did. Frankly. Am on my own. It don't matter much if am around or not, not really. So, would prefer to be out of it. Blessed relief. 'Smile'. But somehow keep on keeping on.
Molly C (France)
I would like to add that I am also Diabetic and have C O P D so in my case its even more risky from the healing point of view.I realise that what Alan says is right it has to be told in truth.I just feel that maybe not so much detail in waking up screaming in pain and hallucinations ect. I know about morphin and what it does to your brain and understand that been there.Im just concernd that putting it the way he has someone who is going to have the operation will be terrified.I am a person who has sufferd a lot of pain in my life with operations ok not as serious as this but do realise that I would suffer terrible pain as Alan said but when its put like that it even put me off.As the people on here who have or are thinking of having this done know it is a very difficult desision to make.I worry more for my wife and children more than myself
I would be 60 miles from home and it would be extreamly difficult for them to be there for me which would break there hearts. Apart from my wife who would find it very very hard My daughter who I brought up on my own and is very very close to me and worries about me all the time anyway would really suffer.So Im not saying what Alan has written is wrong I just think some of it should be a little less dramatic.I know some who read what Ive said will think what a pratt and thats fine but different people have different emotions and the way things are written can have a terrifying effect on some.Alan and myself have agreed to disagree on this point and thats fine I just dont want anyone to think Im saying what Im saying for the sake of it.Sorry to ramble on its just my opinion.
Kevin Hello mig
Alan - the President of the AFS (SpondyArthrite France) Marie-Laure Bigourie had a huge spinal op. She was unable to sit down for three months... Could ONLY lie down or stand up! (Beggars very many questions...) Anyhoo. She was in hospital for weeks - somewhere down in the Charentes area (or so I understand/misunderstand!) Her whole spine was??? (all in French, had difficulty in following completely). But a HUGE op.
After her recovery she can do everything. BUT, dunno 'quite' what she had done! When I get to the next Association monthly meeting, will endeavour to find out. (No one speaks a single word of English. Breton - scratching head! - and French only.)
Molly C (France)
Seems that my writings have caused some consternation. I apologise for that.
What I write though is a true account and I am unable to get away from that, thus it is perhaps best if I leave it now as is! I will be writing the rest (for this thread has certainly sparked an interest in me to complete it) but will not put out on here for public consumption.
If others are still interested then I shall send it to them in PM.
Molly I shall research Madame Bigourie, and send you a new shoulder, Asda do them now...lol
Quote: "Molly I shall research Madame Bigourie, (great) and send you a new shoulder, Asda do them now...lol."
Heigh, ensure NOT a shoulder of lamb cause this ere is ancient mutton, all wrinkly as well as...hahaha
An yes, please. Want to find out the rest of the story. Want to hear more of nurse strangelove and nurse grim-efficiency, and, and, and. Also, the physio. Whom you had, what process did they use. How you coped. Especially the parts where you asre coming through the hell-on-earth and bright gladness arrives. And your kiddies. Their reaction to straight up an down dad.
Terrif man. Thanks.
Molly C (France)
Keeping on Keeping on (you betcha, gotta 'do' innit!)
Hi Kevin,.. I am sure that no one here thinks you are a pratt and can appreciate and respect your opinion and feelings on this. I worry you are somehow feeling pressure by what you're reading here and really hope that is not the case. No two cases would be alike in terms of risks vs benefits so direct comparison, as you've noted, is not possible. Everyone's health situation is highly individual!
After all of our encouragement in asking Alan to keep going with his story, my own hope is that he will continue on and let it flow as it has, just naturally. I agree that his writing is quite powerful, yet feel (imo) that it's important not to gloss over the truth, and worry that he shouldn't feel inhibited in his style of telling it as it was.
Alan, as a suggestion, you might(?) include a little disclaimer of some sort in the title or at the beginning of your next chapter, just to forewarn readers that the details may not be suitable for all? That could help folks decide for themselves whether they wish to continue reading any further. I already know I will! Hey, there is even a little yellow 'warning' post icon! Well, it's just a thought.
Hugs to you both!!
I never feel pressured by any one or anything the decisions I make will be made by me and my family only no one else. I made the comments I made becuase I felt It could influense other peoples decisions like the person who started this post and is looking to be straight again.
I have told Alan he should continue and finish hes story so every one who wants can read it.If anyone has been affected by the last chapter will hopefully get encouragment from the rest.I think the Idea of a disclaimer is a good idea. I get the impresion I have upset Alan for that Im sorry but I will always speak my mind.
Yes, I should have said that I was aware that Alan had TWO wedges. My post was actually directed at Kevin, who said his doctor told him he would have to break every joint in the spine to do the surgery, which just doesn't sound right.
Alan - I am fascinated by your story and gripped by your storytelling style. If you decide not to post the remainder in a public forum, I would be very pleased if you would PM me. It may be necessary to send you a personal email that you can send an attachment to. Otherwise, it could get difficult for you to send it out if you receive many requests like this.
Kevin - I'm glad you speak your mind just as I'm glad Alan is telling his story as he experienced it. I am totally impressed and encouraged by both of you and what you have to say and share. Thank you both.
I hope you continue posting your story for all who want to read.
Your writing is honest,sincere and entertaining. Please don't censure your writing.
It is a story that has hope and many people could benefit from hearing your truth.
I don't have to face such a serious operation. It could be terrifying for people to hear the gory details, but it also lets people know that pain does pass and one can regain quality of life.
I look forward to reading the rest of your AMAZING journey.
MMmmm now, how did this rather pink looking baby (goodness she is nice) get into this grim tale, Well she must be told to cover her ears, Kindly of you all to want to read a bit more so will do another chapter but will try not to be so scary.
Hi Grammy, goodness your grandchildren are attractive........must be in the family somewhere.
So two mornings later, maybe three, memory tricks me now, a lovely young lady and her even younger male assistant, the physio's arrive. Cheery smiles with a clear "Here to help" attitude.
"Right Alan, can you stand up for us please"
I was horrorstruck.
"I can't even lie down for you". I croaked.
"All right Alan you stay there then, now let's just move these blankets over here" she said.
Well perhaps things were picking up, I mean it isn't often that one finds oneself in this fortunate and promising situation!
She opened my pyjama jacket and spread it wide exposing the white rather charmless opaque and fleshy chest beneath.
She placed both hands on top of my chest, palms down with fingers spread wide.
"Alan, now I want you to cough for me please, nice and hard, need to clear this anaesthetic and get your lungs working"
Well I felt grim and I hurt like hell but thought, well she only wants me to cough; so I did
Now I really screamed; it is difficult to explain, unless you have been in a similar situation, what a simple cough can do. I made an attempt at a fairly vigorous expectoration. Not fully appreciating the engineering involved, like breathing in as much as possible into lungs captive beneath fused ribs which by chance were attached to a fused spine, which in its turn had recently been drilled, chopped, screwed, glued, opened and closed, broken and subject to goodness knows what other random D.I.Y (Do it yourself). The cough and the energy in it rocketed down to the operation site. The pain was just, well, beyond all that I have already described in these pages. Short lived thankfully and I immediately realised that, if I didn't cough, (I learn quickly when pain is inthe offing) I wouldn't have to bear that particulary exquisite agony.
"Oh Alan that was really good, hands spread once more, now can we do (we??) one more"
Head shaking, well carefully moved from side to side, no no, not again.
"Now Alan you really must, just to make sure your lungs are clear"
I thought to humour her and attempted a throat clearing noise which I tried to dress up as a cough.
"Ok Alan yes, we will do some more tomorrow"
"You bloody won't" I thought, but was relieved that they had done...hadn't they?
I was coming rapidly to dislike her voice.
"Right, let's see if we can stand you up and take a few steps"
I didn't know what to do.
Next thing I was log rolled slowly and carefully, sideways across the bed so that my feet were on the floor and the top corner of the side of the bed behind my knees.
So far so good. The youg feller takes one of my arms and the girl the other, a brief scream, an agonising but very short pain at the operation site and I was on my feet. I felt that a round of applause might be appropriate but was denied such plaudits. Next they let go of me, mistake, a terrifying mistake, I knew at that moment that I was not going to survive. I was going backwards, like a tree being felled, a slow, inexorably langorous backwards fall, tall rigid, unable to help my self. They managed to grab my arms, to my amazement and relief, I landed almost where I had started. Flat and across the bed and they managed to make it a soft landing. The only pain was the pain of fear, had I broken my spine, had the wound been opened, had the rods come adrift, what if a rogue screw was now positioned beneath my heart just waiting to pierce me for good and all. But, I was ok.
Log rolled again back into bed where I was left alone for a while.
I didn't realize it but I was covered in tubes, a garden hose still insered, drains in the wound,things in my mouth and ears, a line through the neck directly into the heart, a catheter, lines into both hands, this was the cause of the tied down vision I had had on the first day. A pulse taking clip was on my finger, and I still had to wear an oxygen mask.
The weather was very hot. This was unfortunate and did add somewhat to the general feeling of discomfort.
By now I was seeing my visitors, (not my children, even Ellen didn't want them to see me yet. I must have looked a fearful sight. Well mig has a pic or two, she might put them here?). I was beginning to unscramble the morphine mix in my brain. Sufficient to say that pain was severe, ever present.
Log rolling was essential, when they mistimed it ever so slightly, rarely for they were super, it was agonising. I wasn't managing to eat, even my beloved tea was impossible to get down.
The staff nurse, a chap called Jim was concerned about the warmth. He stood a floor standing fan at the foot of my bed, it was lovely, I basked in the cool flowing air.
I had not been to the bathroom yet, you will recall that I had a few days before, on the morning of the surgery, been unable. My gut wasn't working, it hadn't switched on yet.
The following morning I felt as dreadful as I ever have in all of my life. I had a severe chill, no gut, in pain, no nourishment. So, so poorly did I feel, that they rang Ellen and asked her to get to see me early.
Fred nd Mavis,(my own music teacher and long standing family friends) came to visit. I lay there unable to communicate, and apart from feeling desperately rude to them, I was unable to sleep, pain, pain, pain, and really thought what a complete and vain idiot I had been to do this thing. Now I was going to pay a real price for it, and I didn't care I just wanted someone to flick a switch and turn me off.
Oh to be free of this mess.
Ellen was distressed, I could see it, even through my self pity.
I slept all night.
I awoke at 6, log rolled myself onto the edge of the bed, stood and walked to the bathroom. God knows how I did, but I did, and, without dwelling too much on unnecessary, less pleasant matters, I was in there for nearly an hour because it was errrr......difficult, and again required pressure on the spine, so very painful.........but, a nurse came in in the end and helped me back to bed.
God, I felt so dammned good.
Ellen rang the ward sister, sobbing, convinced that she would be told the worst. The sister brought the phone to me, we chatted, she was disbelieving,
"I thought you were going to die"
"So did I, I think it was the loo that did it! Will you bring me some lemonade and a crossword book please" "WOW"
The corner had been turned. There was worse to come, the leg pains referred to on the eve of the surgery decided to come a calling, leg pains was then and remains a wholly inadequate description, the turtle impression was yet to happen and Ellen walked me up the ward where she knew there was a full length mirror.........
I don't know what to say but WOW!
Sorry to be a bit slow in adding the photo to your post but I was away as you know, looking for bears the last few days. lol
Goodness I can't believe that they let you fall back down on the bed on your back like that Alan! Owww! And I can't believe you got up on your own and made your way to the loo without assistance. yikes!
Wow really is the only word that suits.
wow you thanks for douing the picture, I look pretty handsome I think and the blood everywhere sort of gives me a tough guy image don't you think.........cripes........takes me back a few years looking at this...
bless you miggins
To all readers, if there are any! Please not e the evidence inthe picture of the truth of my stories.........well actually I wonder if any of you can spot it??????
Ahhhhhaaa... is that Lemonade I spy in the background?
Well, I may be cheating a titch since I'm in possession of the original to zoom in on the details..!
But am I right???
lol........ok smartie pants with spots on.........yes yes yes....lol
Woohoo! Right then, and now to a matter of grave importance, how many points did I win please? Now I realise you have a tendency to be miserly in doling any out in my direction but this time is different, you have just admitted I was right..!!!
Oh very funny Alan. Well bless you for your kind and overwhelming generosity sir. I accept and will treasure this one lone point for the great breakthrough it represents..!
You are a big problem, ya know!
oh sorry, was a typo should have veen
Oh no I am not
English generosity HA HA
Hey, no fair! There are no take-backs allowed! And since you can't reach across the pond to steal it back, it's too late now Mr. tough guy!
And oh yes you are!
Oh, this is common then is it Kevin..?! Ah that's good to know, I was beginning to get a complex!
How does your scar look now, Alan? I imagine it has faded and more or less disappears because it runs along the ridge of your spine. I have a long scar that runs from just below my ankle to about 3 inches below my knee but because it runs straight up the front ridge of my shin bone it's not very noticeable. This was a result of surgery to repair a broken leg after I fractured my tibia in several places so they had to use a steel plate to fix the four pieces of bone back together. I sympathize with the pain you have described because that broken leg was worse than all three of my children being born put together.
Anyway, your story continues to be fascinating and I love the fact that we now have illustrations even if they are a bit bloody!
Hi Wendy, err well I don't know I have never really seen it!
I know when I undressed in the restaurant Mig said some of it at the bottom was looking a bit brown and peculiar but yes is like a gentle felt tipped line. Is odder at the top where the operation ends and the original spine is, there is a strange sort of lump and weirdness. Actually Migs picture in the meet up thread shows pretty well how it looks today.
Wow ok then tape measures out, I bet my scar is longer than yours, Might be points in it for you if yours is longest....unlikely though.............getting points that is....lol...Mig seems to think I am ungenerous with points!
As for pics with blood, they get worse, the next ones have my face on...........arghhhhhhhhhhhhhhh.
The man from the corridor appeared at my bedside. He grinned rather inanely at me lying there.
"I saw you the other day, in the corridor".
"Yes, yes I remember".
"I can't believe this, I have never ever seen this".
I looked at him, enquiringly.
"This surgery, I remamber you from the corridor, how bent you were, now you are straight, this is amazing, I have never seen this before".
He must have realised my confusion, for he grinned and machine gun like, shot out the details og who he was and why he was at my bedside.
"Oh Alan yes, to explain. I am Carl Wisner, I am an orthopaedic surgeon from California. I am doing a fellowship with Mr Webb, I was in theatre when you were done"
Ahh, I now understood, he explained how he saw me onthe corridor and realised I was the spondylitic to be staightened and was overcome with the procedure, how I began and how I ended.
We chatted a good while, he told me a remarkable story.
"I work in a partnership of three ortho surgeons in California", he said
"One of my partners has AS, he looks as you looked a few days ago, we have never seen this procedure".
He was clearly, obviously stunned at the procedure and its results.
"I am going to bring my partner to England to undergo this procedure"
A compliment indeed. Whether he brought his partner over or not I don't know. He took away to pre op pictures that I gave to him.
I spoke to him once a few years ago, by email.
J K Webb and Chris Caine arrived early one morning. J K W explained that the spondylitic actions which had caused me to need surgery would immediately start the bending process again. I had to remain as upright as possible, particularly straight after surgery. He/they proposed to put me into a plaster jacket, tha day. The orthotist arrived in the afternoon. I was taken in a wheelchair into his room. I then had to stand and he began the process of sealing me up. Problem was, I hadn't stood alone for more than a few moments at a time. I couild walk abit but standing still, with arms akimbo, so that he could get the bandages beneath my arms, was impossible, my legs shook and he allowed me to take breaks and sit whilst he measured and cut and trimmed. The other, and later, more serious problem was that sitting, was the most painful of all postures. The process was tiring, agonizing, long winded and particularly uncomfortable.
Eventually, I was done. I now had a carapace, an external skeleton, god it was awful, I hated it instantly. My already limited comfort was now impinged upon bwyonf any hope of relief from pain.
I was assisted into bed, I still needed to be log rolled, therefore was moved rather than moving. I was severely twisted at the operation site (grim)a few times because now there was no 'feel' as to what was moving and when.
My family arrived, my girls too, wow was so fabulous to see them.
"Dad, have you any biscuits left"?
"Dad can I have some lemonade please"?
Marvellous to see and hear them and to see that their lives had their own special important bits. Lemonade and biscuits, jolly excellent prescription for a pair of lovely girls.
They all laughed at me propped by now in the large chair at the side of the bed.
"Dad you look like a tortoise".
"Dad can I write on the plaster please".
It was a lovely evening I was fairly soon helped into bed by Ellen and the nurses since the chair was not at all comfortable.
Laying down on your back in a shell like plaster is weird, and a touch scary. I was unable to move, I felt utterly trapped. I hated this thing, it had been on for a mere few hours, I had to wear it for 6 months, I was really concerned that I would not be able to get through it.
Family left. I was assisted out of bed and went to the loo, another novel experience!
Walking back to the bed, Chris Caines 'leg pains' hit me. A sudden spasm in the back of the hip, so excrutiating that I (yes again) screamed but in terror realised that I was face down on the floor and screaming like a baby, the nursing cavalry arrived post haste, Jenny Sycamore, reassuring as ever, directed operations and I was raised from the floor and carried to bed.Once flat onthe bed, and all breathing a little easier, spasm 2 hit me and this was twice as bad as the first, Stan in blue 3 woke up and yelled at me to shut up. I was very rude to him, entirely unlike me actually, then spasm 3. By spasm 4 I was left leg on floor, right leg on bed and the rest of me somewhere between, held by 2 nurses. There were 23 spasms that night. Without question it was the most agonising night of my lifethen and now. As I sit and type this, I remember every spasm, every word from every nurse. I use the word 'Grim' a lot. This night was truly as grim as could be.
Chris Caine (Cannever remember whether he is Caine or Craine, I keep looking it up, but I immediately forget!
Morphine by the gallon was administered. Eventually I collapsed into fitful and grateful sleep. Next morning CC was there first thing.
"Alan do oyu need anything?"
"No not at the moment Doc.".
The orthotist arrived, He and Chris Craine removed the tortoiseshell. It had been on, less than 24 hours........thank God
The battle wasn't over yet, the spasms hadn't disappeared, but i did get a nice new jacket out of the deal.....oh there it is just below....
Thank goodness they got rid of that awful plaster cast for you... it makes me shudder just to read of those horrible spasms you had to endure for that 24 hr stretch. But to think of 6 months, yikes, even on a perfectly healthy person that would be torturous, let alone when healing from such a huge surgery!
Your little Esther is so cute! How did you ever manage to appear cheery for them while in such agony? I guess their cheery presence helped as a little a distraction for you. I will say it again, I find that your ability to cope, to be optimistic and face things with such a positive attitude all the time, is just absolutely amazing!
yes it was a thrill to see Rufus and Es. It had been too long.
Well you have had the spasms, I bet James B. John the dragon, Brad and Cheerful know these pains, all are heroes. Not me though, I was satill fit enough to fight off my daughters onslaught on the chocolate digestives, not that I could actually manage to eat one myself.
You are kind dear lady. Truth is though isn't it,that AS has shaped all on here, we have ways to keep going, there is no pint in regretting it, or wishing things were different, because they weren't and they aren't. This writing has been a bit of a glory trip for me, lots of memories and has been a thrill to try and do it, but, don't let it make me into a hero, cos I'm not, Just simple old Ineptwill.
But blessed with everyones company that visits KA and especially yours for you are a dear kind friend...............
and a clot
I am not a clot!
Yes well I've had what I felt were horrible spasms - but not
like you've had Alan - not while trapped in plaster, after having your spinal cord physically rearranged.
That has to be a whole totally different level of agony that I pray you never have to cope with again, and that I hope I'll never ever know. But I am so happy for how this incredible surgery saved you!
It is a special place KA and I feel privileged and so lucky to have you as my friend... even tho you call me names!
Gosh Alan - I thought you looked a bit like Harrison Ford in the recent pics from the meet-up in Toronto, but now I wonder - are you Michael Palin's stunt double?!?!?
ahhhh th Michael Palin thing.............lots have said that. I look at him and look at me and have no idea why I am thought to look like him. lol
Think on balance though I prefer the Harrison Ford comparison,I have always been a hero with a short line inhumour, a tough guy and have always wanted a whip. wow, wait till I tell my girls....lol
And I wish I had the courage to wear a hat like his, but Michael, cripes, wish I had his brains but he has a big nose!!! I wonder if that is what others see in me.........my huge hooter.........sob....
Hi clot, now look here Miss bear 1942, I have never, well rarely well ok, now and again, but apart from that, I have never called my miggolochops, names......so there Clot
Quote: "Michael Palin thing.............lots have said that. I look at him and look at me and have no idea why I am thought to look like him. lol"
Agreed. NOWT like to the Palin - he's such a wet (find him irritating - summat about him: I jes HAVE to switch channels!) Best thing about the Palin, apart from his 'goodly' nose, is his hat, the rest you can bag up 'smile'.
As for hooters Alan, a good nose is generally a sign of strength - cept for Palin who (for me) is sooooo wet
Molly C (France)
Keeping on Keeping on (shoot, she's soooo self opinionated! ^LOL^)
Great set of photos Mig. But, didn't know that you'd had spinal surgery...phew! Me? I'd be sooooo chicken (read *terrified*) not much good with pain, though have been through the mill some. Anyways, loved the set of photos. (And agreed, Mig yr fave is mine, Alan with Kat at the piano. Terrif photo.) Alan, you look a wonderful person. Your face is so very kind, and you have a delightful smile. (An ole lady can pay a compliment now an again, innit
Molly C (France)
Quote Mig: "I find that your ability to cope, to be optimistic and face things with such a positive attitude all the time, is just absolutely amazing!"
Catching up now - been off line for a day or two/several hours 'smile'. Phew, Alan. Some journey, and can only agree with Mig; absolutly (bloody) amazing. You give us courage - and there is many a truly couragious KA story here on the forums - know that I'm forever stunned at the sheer 'coping', sense of humour and commitment to 'keeping on'. Love my KA.
Thanks Alan for continuing the story - I salute you.
Molly C (France)
Keeping on Keeping on (an it's folks like you guys that help one TO 'keep on'
lol, you 'innit Moll'...lol
Thank you for your kind words. As for the puano, they made me do it.........Oh I'll have a glass of beer I said....Not until you played the piano they said, well I was so embarrased, I am shy you see..! I notice Molly that Mig and Kat have never owned up to what was said to them by the staff at the end of the piano playing session......Is worth asking them...lol
Bless you dear lady...innit...X
I have enjoyed reading your story Alan it has confirmed how I had imagined it would be Im glad you decided to carry on.I have seen that some surgeons are now using minimal Invasive procedure were you sit up during the operation they think it could be safer for cases like mine.they keep you partly awake apparently SCARY
Very creative Alan... you are silliness itself!
I think I may have caused some confusion with how I worded one of my previous posts (which I will now go back and edit), sorry, but no, I have not
had spinal surgery, in fact, I've never had any kind of surgery ever (knocks on wood)! My spine is damaged with bits of fusion (mostly facet joints) but luckily I am not stooping forward any more. I can relate to some extent with the awful back spasms though, as I suffered for years with forceful spasms that would take my breath away and cause me to fall to the floor without warning. I can barely imagine how much worse Alan's must have been, right after having surgeons physically touching and moving his spinal cord, as they did. It scares me to even think about what he endured. Nope, I am more like you... I am a chicken(!!!) and very grateful that I have not reached that level of severity.
And thanks Molly, I'm glad you enjoyed the slideshow! I love snapping pics but am not very good at it unfortunately. As many photos as I have of Alan's friendly smile -- you should just see how many I have of him making a silly face for the camera!
He is a hoot as well as a sweet, wonderfully kind and fascinating man, you are right!
And Alan, your nose is not big! It is in perfect proportion, I promise you.
Now if I could only decipher 'innit'! lol
Quote: "Now if I could only decipher 'innit'! lol"
Cor luva duck, innit? Vy it meens ya sea, is it not, isn't it, innit. Simple, innit? ^LOL^
Yur pics ar grate gal. Luvelee ter sea innit?
Ahhhhhha I sea!... is it not, right, 'isn't it' not a real word then, innit..! LOL
Thank you Molly, I keep having it explained to me and then promptly keep forgetting!
It's clear that our friend Mig has not grown up in Manchester, East London or Leeds (amongst others)- where there are huge populations of Punjabis, whose favourite word with which to end *every* sentence is "Innit" !!! There are possibly folks who actually think it is a Punjabi word originally, innit?!?
(No offence meant to any Indians on here - the Brits will understand though...)
Just realised Louise, innit is pretty much the same as 'Heinar?' (phonetic sp?) which is Punjabi for innit...! HaHa.
Hey Louise.. well, you are right that I didn't grow up in Manchester, East London or Leeds... I grew up in Scarborough! lol
Thought I recognized the accent HA HA
Oh but I don't have an accent Kevin. lol (unless a Scarborough Ontario Canadian one counts!)
It's you guys over there that have the accents, not moi!
naa we dont have accents we talk proper queens English well we do in the south I think its different up north bit more common up there you know nottingham area
That place were coco comes from.
Ahh, Alan's accent is just LUVly I think, very tuuf for me to mimic
(he laughs when I try!) but he sounds luvly and refined.
Hmm, somehow I imagine that Her Majesty does not use the famous 'innit'!
My wife comes from the East Coast of yorkshire you'd have fun under standing her.Weve been together 6years and i even have trouble sometimes. HA HA Dont tell her though.
Quote Mig: "I imagine that Her Majesty does not use the famous 'innit'!
Ah-Ha. Queen mum was nown to immitate an also de Queen has bin nown to thro der odd 'innit' as spoked bi sum bloke or tother on der TV - do go fergit is name tho. Will forgiv yr error ov no'ledg as diff wen wun is brort up in nuther wurld! Innit? ^LOL^
Luv ya Mig -
Molly C (France)
Hey der Molly babe I tink yer tinking bout Ally G.
Wull dun youse. Yer, dats der guy, Ally G (did yer see it?) - larfed mi'sel silee wen she mimi'ked im. Den wen der Queen did summat agin loike darn at der staybell. Quite funee darlin, quite funky fun!
Dontcha luv der English acksents...no uv'her country loike fer dif'er'rent acksents.
(Jolly diff putting it in writing though. Have a terrif book on Lincolnshire dailect. Marvellous stuff - will spare you though ^LOL^)
You should try understanding broad Cornish! I only have a hint of Cornish in my accent because, although I was born and grew up there, my Dad was from Reading and my mother from Southampton. So I've got what you'd describe as a BBC accent with Cornish overtones!!!!!
Although Kevin's right - you can't beat a strong Yorkshire!
'nd here were me thinkin that ouer Molly could 'ave been a Yorkshire lass with 'er "nowt" in ev'ry sentence!
Where is your wife from? My fum'ly is from roundabouts - but mainly Leeds, York and Hull.
Them es from Hull 'ave an accent all o' their own - tis no wonder you can't understand yer missus!
Seriously though - I was in Wales one time and staying in a B&B and met a couple of lads from Nottingham - they were keen to chat, but I thought they were having a religious experience and talking in tongues most of the time - especially when we went to't pub and they had a couple o' pints in 'em!
Thank goodness we Aussies don't have an accent, innit mate?!?
My wifes from Withernsea east coast.She used to live in Hull in fact her daughter still does.
My next door neighbor is from around Nottingham area cracks me up she allways says are yeall righhht when she sees me.Im used to my wifes accent I dont tend to notice it so much although it is very stronge Yorkshire.A lot of people down here comment on it becuase we speak with such an educated accent even if we are thick.
Eee oop ou'er Inkee. Lived in Y'shire fer ar toime den. Mirefield, then Leeds fer a short while, den spent sum war yars en Brighouse. Eee by gum luv - d'ya'no, cricket geezer sed dat on TV tother nite - wen orf inta paroxisms o'mirth oi did.
Must catch up with the latest score. We lorst wun gud player ter achilles injury, an thingee got is knee probs... Oh well, we wun em wunce in der last 75 odd yrs, innit? (Wud luv ter see Warnsee playin agin, luv to see im run dawn ter der crease (grate bum ee as!!)
Wot flippin blather... ^LOL^
Molly C (France) - innit
Oh ay, Warnee's got a luvley set o' cheeks on 'im, that 'e 'as...
So 'ere be a question for yer Mollee - do you love a Fat Rascal with yer cup 'o tea then?
And what's yer favourite fillin' fer a buttee - cake, chips or bacon???
Oi by gum, that be a luvly thort - pity I be NSD then, wot? (or should that be "innit"?)
GP yesterday wus torkin abart MTX...elp! Tol im na way, NOT, niver. No mench o'sulpha sal...
(Promise ter 'try' ter stop - 'cept for nowt, owt an innit. Innit?)
Ee, lass, split an buttered - Bettee's, Aarragate. Yay!
As fer buttee? Bacon, course, innit. Smoked bacon, an few slices tomatoe as well, oo'err, an er lettuce leaf or two... Der works kiddo (NO mayo but!) Chip buttee dun't do owt fer me... As fer cake in it? Na, ter me, loike, bit loike avin fride Mars Bars...!
La Molls - innit ^LOL^
Ah yes, indeed - Bettee's in 'Arrogate. What about the poached salmon sandwiches....? <sigh>
Cake buttees are wot daft folk from Bradford way 'ave... lost on me, too!
Yikes, I am totally surrounded.
What on earth are you people talking about..?! Alan, h e l p!!!
Quick! We need another chapter, please!
Talking real dilects from around England. Good Innit
Hey up mig lass.
It's alright Miggins. Fear not. They are all a little peculiar.
Consider that we have an ex patriot Lincolnite now corrupted by france, A strange sounding Australian who thinks she is from Leeds and has a pronpensity toward dirty fingers, then we have rgw absolute worst of all, a sussex man, well you can't understand a word. Would be easier making sense of the call made by the red backed Maxcaw at christmastime.
Ignore them Mig. Always listen to me because I talk proper English.
As for inky and her accusations of pottyNottinghamians.......huh...!
So then, Eyogorrimweya or atherbythesenduck...!!
Looks like a pretty steep learning curve to me!
Well, if I ever do make it across the pond (unlikely since I am pretty near broke!
) I'm hoping that my good friend Alan might be willing to play tour guide/translator for me... otherwise I just may need an English to English dictionary!
yes dear girl. I shall translate, so long as we don't travel to England's seep south where life is challenging?
Well you know what they say, England and the America's divided by a common language..lol
And anyway you, (Listen all) Mig has a pretty spiffy posh english/scottish accent already.
She is often oot and aboot....lol
Oh, posh eh, well that sounds ok. But I do not say oot, I say out and about just like any proper Canuck!
I was going to say, yay, Alan to the rescue but then you totally lost me with that last bit of garbledeegook!
Bet it's a typing error... Alan's hands are just too big for his keyboard!
Now now Lass keep your hair on.innit
Ah my dear I think I have taught you the meaning of the words at the end of my post. I bet Kevin can translate them and Molly too...lol
E! rgw = the
Right, how many points?
>"So then, Eyogorrimweya or atherbythesenduck...!! "
Hmmm, yes am sure you have told me at some point long long ago... but but but... um.
Okay, does the first mean... I'll go with you?
And the second, oh dear, sorry Alan, I am a hopeless student!
YAYAYAYAY! Wow, that's HUGE! Thanks!
no it doesnt, yes you are
Have you got him with you
are you by yourself my dear.
we need a chapter. Maybe do one in a while.
Kevin how is the weather in the south. Has been lovely up here today
And how is it Dans Markham ma belle Mig
well the cedit crunch has severely affacted the value of points
I daren't put on here the current points exchange rate.....
Well, I got the 'with you' part, anyway. LOL So much for guessing! Methinks pottyNottinghamian is spot on..!
Been realy nice down here warm sunshine all day then we do get the better weather.Less rain more sun.
Ah-ha! I just KNEW it! You thieving points glomper you.
It's not fair Alan!
Whats a Nottinghamian sounds like someone with a hernya
It's just beginning to rain (yet again!) here, 71F, humid, and threatening thunderstorms... arrrrgh. Bet it's a very pleasant, partly cloudy 64F evening in fair Nottinghamshire.. or so says mr. G! lol Sounds just lovely in the south too Kev.
Must scoot off for now but hope to see a new chapter soon!
"look at yourself, look"
I stood in front of a full length mirror, side on with head turned to my right. There was a straight tall man looking back at me. Was it me. goodness, it can'r be, but it was. The stress of the surgery melted away. I stood humbled, looking at the evidence of the disappearence of years and years of staring at the floor. It took my breath away.
"Look see, I told you Look"
I just stood an looked, couldn't talk, couldn't respond to Ellen.
It had worked. I wasn't paralysed, it had worked. The joy in me was restrained, held back, never one really for a dramatic public showing of honest, how I felt drama. But the joy in me was real, it was quietly overwhelming. I was overwhelmingly quiet, I just stood and looked at the new me.
I loved the new me.
As we walked away, the new knowledge seemed to trigger in me a feeling that I was falling over; backwards. So many years hunched over and suddenly I felt that I was leaning backwards.
Muscles that had been constrained, limited for years were now free to flex and move. I could get rid of indigestion so easily. My legs could walk and stand straight and I could still see across the road. This was not an instant happiness, more of a growing, glowing one that became ever headier as I discovered one by one, all of the new things, the ordinary things that I could do.
I was wearing my new velcro fastening plastic jacket. This was a compromise, it acted as the plaster would have done, but I could adjust this one and more to the point, I could remove it. If I was going to walk, I put it on and tightened it pretty well as tight as it could be. Sitting and I could wear it slightly looser.. Sleeping, then it stood on the floor at the side of my bed, something like a disembodied torso shining white in the night.
Spasms were almost a regular part of getting out of, and into bed. The positioning of every part of me had to be precis and the timing too. Sometimes I could rise from the bed quite easily. Getting back in was many times more difficult and it was usually then that I endured the really strong spasms.
By now I had been in the hospital about two weeks. I wanted to be away home.
"Will I be discharged this week Jenny?"
"If I discharged you, could you manage at home Alan?"
"Err nothing, you know you couldn,t, go and have a cuppa"
Jenny was super. A rock. The kind that stimulates absolute confidence in you and in her abilities.
I was receiving anti rejection injections daily. Apparently some folks bodies reject the titanium instrumentation, the skin goes black and rots, this was a worry because the way to cure this is to open you up and remove the rods and screws......Noooo, so I was grateful that I again was lucky and showed no signs of rejection.
The day that I had asked to be discharged, in the afternoon, Jenny came to me and asked if I would mind if a man came to see me the next day. He to had AS and was contemplating similar surgery. Would I chat with him about the whole experience?
Well of course, how could one not? This hospital had given me a new life, I wanted to give something back.
The man arrived the next day. He was older than me and also had Parkinsons Disease. He was quite stooped. His wife was with him, Jenny brought them to me and then left us to it.
I talked and answered questions, much along the lines of these random chapters. The mans wife said No, No you arent having it. The man seemed to nod assent. When I saw Jenny some time after, she told me that the man had decided against surgery, it was too much to go through.
There were many more worrying moments, more wonderful care, a staff of doctors and nurses who were second to none. I wont go into every detail here, sufficient to say I was on the mend.
I went home after 3 and a half weeks in hospital, I still couldn't sit or lay down alone but I more or less insisted that I go. Jenny was still not thrilled with the idea. I got home and was in big trouble, nightimes aliving hell, my family wonderful.
Ellen was popping next door and left Esther babysitting me!
"What shal I do if Dad screams Mum?"
"Just ignore him"
She was gone for nearly 5 minutes so Esther was spared such decision making.
5 Weeks later I went for a walk to watch Rufus in her school sports day. I was very tired and in pain when I got there. Neither were there chairs so I stood. Walking back home was agonising, though somewhat defraying the misery was Ruth's proud smirk and purple pinned on ribbon for second place in the egg and spoon race.
From that day, the spasms and the night pain stopped. I was well again.
15 years later, I have my friends and fellow sufferers here on KA. I am tall, and strong, life is new and wonderful.
I am one of life's rare and privileged people.
Years of AS and then the surgery has taken my life to unexpected places. All of those experiences make me what I am, I am happy to be me.
Life is wonderful. I live it every day.
Blessings to my lovely Mig who prompted me to bore you all with this
To my friend Colin who too has encouraged me to write. And to Wendy for her nice comments along the way which kept me going. Oh yes, I nearly forgot, that Kevin bloke as well....
Thankyou for writing your story Alan I know I was shocked at the way you wrote some of it.I think it was more of a case of me possibly facing a similar operation that played more on my mind. You did the correct thing in continuing and Im gratefull for you finishing it I have learnt a lot.
And I feel proud to say I think of you as a special freind and look forward to meeting you in person sometime soon I hope.You are a big inspiration to me even if I do take the [**BLEEP**].
Alan, wow, thank you!
Your appreciation for living and enjoying each day is inspiring and literally contagious and I feel both privileged and fortunate to have gotten to know you.. yep, I am pretty lucky too! Bless you and your super team of incredible doctors
... and thank goodness for KA!
Love and hugs
Fabulous story, Alan. Thank you for reliving and sharing. I do think it has the potential to be publishable and wonder what the next steps might be to find out. Let us know if you end up going in that direction.
On another note - you have said that the AS monster is starting to cause you to bend again. Is that in the same area or higher up? I had thought that the metalwork you have would help to prevent that part of your spine from moving (bending). Is there anything you can do (excercise, drugs etc.) at this stage to prevent it continuing?
yes, the doctors and nurses. Well said Mig. They are the heroes of this story, I was just there for the tea and the lemonade.
My trust was totally in them, they rewarded the trust millionfold
they earned lots of points. Ahaaaaaa
Thank you Wendy. Have actually begun to edit the story. to clean it up, to make more chronological and remove error and contradiction, to make a slightly better read if I am able.
When it is done, I will send it to you, see what you think of it as a continuous read, i hope i can make it worthwhile.
As for the bending, yes over the top of the rods, same place as Kevin but nowhere near as extreme as his. If I live a reasonably long life though I fear that it will head towards what Kevin endures.
It doesnt matter though, I have been lucky enough to win the world cup once already, mustn't be greedy and demand to win it again.
Thank you so much for keeping me going with this.
Just edited the photos in your last chapter so that it shows both before & after surgery, as well as your pretty daughters as the ladies they are now, all grown up! I bet they are as proud of you as you are of them, Alan. (sorry about the bike! lol) I'd love to know what Ruth and Esther's predominant memories are from back then, when their Dad suddenly became much taller. I bet it wasn't the lemonade!
Alan, I hope you might include some detail about the mark across your chest too, in the post op photo... it's missing from your story!
I see, so that's where all the points went, no wonder you are so stingy with them now.
What lovely daughters Alan you must be proud They obviously take after your wife.
Oh yes the mark on my chest..........do you meanthe red mark which encircles chest and tum???
Well perhaps make it the final cpmpetition then shall we.......could mean points for the winner???
So folks explain redmarks in picture!!!
Hi Kevin, yes they are lovely, both 6 feet tall brainy and gorgeous, Mother, well let me explain.
My wife complains bitterly when she enters a shop with her 2 daughters, the conversation is usually preceded with a few looks at her then at the girls then back at her....
"Your husband is tall is he?"
Cos my wife is 5 feet 3. She usually sneers at the shop worker. So nope take after me they do.......lol
Odd though that after all that has happened, I am still thought of as tall.
Do people still see you as a tall man, or do you think your stooping has changed their perceptions?
But I do appreciate your final insult....lol
Red Marks on Chest (refers)
From plastic corset!
And yes, Alan, yr gals are super gorgeus. How's about an up-to-date piccie of em, then? OK?
Molly C (France) - ID'eed 'just in case' I win a point or two...haha
Oh Molly, I am sorry but 'nil points pour vous' Nope not corset. And the picture of the girls, the second one is last year........ahaaaaaaaaaaa
Awwwww. Oh well. I never win stuff, not even points now...boo-hoo ^LOL^
Gals are, WOW. Thought it had summat to do with the hospital and presentations or summat like. You did not 'caption the photo'
> "Odd though that after all that has happened, I am still thought of as tall."
Well that's because you ARE tall, silly!!
Yes I think people do think of me being tall people I know that is.Mind you so do I Its only really if I see my reflection I realise what a state Im in Bent and ugly what a combination.Because I try and correct my posture so I can look ahead I stick my stomach out and shoulders back I look like a heavy weight has dropped on my head and squashed me. I will get my wife to take a better photo and send it to mig so you will see what I mean.But be prepared It is not a pretty site makes me feel Ill when I see myself
PS I wasent insulting you I was complimenting your wife lol
I hope it's okay how I've cropped and resized your pics.. it just makes them easier to view together and fit the screen.
It really shows how much you have to compensate in second photo by leaning back, gosh that must put an enormous amount of pressure on your hips and knees to maintain that stance. I can see how it really helps you to see straight ahead tho. The level of your kyphosis appears to be more similar to one of our members JP. She had an osteotomy not that long ago I believe, Brad could tell you more since he has met her! If you're interested tho, you could try searching back for her pics.. username JustPeachy I think... but a little warning first, her posts include post-op pics that you may or may not wish to see.
Thank you for sharing these with us Kevin!
Not a nice picture to look at but shows what happens to a lot of us no wonder I get so depressed living and looking like that.When I think back to how I used to look wow cant say anymore.
Fascinating stuff Kevin. Nothing quite like a side view of a spondylitic is there!! Cripes these pics take me back. You do well to retain your humour and to keep going.
No takers then for the red mark on the chest??? Well Mig might move in here for the points!!!
Have been yelled at and told off for not writing complete story, The gory bit is missing, What they did and how they did it........cripes well will write it but Kevin, no looking.lol
Thats ok Alan you write away I have made my mind up on what I am going to do so I will be reading It wont affect me or my decision.
Is the red mark from were you was positioned on the operating table.
Alan, look out, your pants are on fire again! Mine was a polite suggestion
and I hope you will tell that part; it is pretty central to the whole theme of your story after all, what they did and how they did it.
Since Kevin has quickly jumped in with a guess about the red mark, I shall wait for you to score his answer and resist for now my desire to sweep up coveted points! Well, not that I was anticipating a windfall!
yup Loads of points to Kevin
Mig would never have got it anyway...........lol
my dear Mig, you do me adis-service, I have awarded many many points to you in the past.......huh ooops seems Kevin has beaten you to it................lol
Alan, you are killing me over here!
Oh sure, when Kevin gets it right (a clever guess Kevin!), all of the sudden you become Mr. Generous, eh! Right, ha, I see how it is now.
That wasent a guess I worked it out It had to be that unless he had been tied up and thrashed by a buxom nurse.
LOL... well, tied up and thrashed by a buxom nurse was my second guess too Kevin! Seems entirely plausible to me..
Nope, my dear Alan, that wasn't a dis-service to you at all. Own up! I know you and your tricks mister!
Congrats Kevin, just enjoy the points while you can!
I will share my points with you mig cant have Alan making all English men look bad (remember he is northern) He probably would benifit from a thrashing from a buxom nurse? Trouble is he would enjoy it.
Kevin and Alan - you guys are the best. Kevin don't worry about how you look - you are amazing anyway. Courageous of you to share the pics if that is how you feel about them. Alan - please explain the story of the red mark - I understand this is how you were positioned (facing down) on the operating table. I'm assuming, if it's gory, that they somehow bolted you in position so they could work safely on you without any risk of moving you when they were working so close to your spinal cord. So a circular mark seems odd - I would have expected to see bolt holes!
Tell us all!
As for the buxom nurse - you're probably lucky if there are any left! But I'm sure you would both enjoy her administrations!
That's very brave of you to share these pictures with us here - thank you.(The PT in me thinks "They would be good teaching photos...")
I have no doubt that with that degree of kyphosis you would be self conscious when walking down the street. I hope that you don't hear too many ignorant or hurtful comments from thoughtless passersby...
Don't know about the "ugly" bit either- to me you look like an OK bloke. There are probably better looking specimens somewhere on the planet, but a heap of the really gorgeous ones are (IME) airheads or complete tossers...
From what I know of you from your contribution here, I would choose to walk past those Adonis wannabes any day to have a drink in the pub with a bloke with as a good a sense of humour and fun as you have. I think there must be many days in your life when pain and frustration make humour a difficult thing to find.(innit?)
Sometimes life just sucks, but you sure do a great job of just "suckin' it up" and keeping a smile on your dial.
Keep kicking AS -
East Midlands..............Northern indeed. It is true, you southern type think anything above Watford is North......lol
Hi Wendy, no not bolted down. it is simply because I was face down on the table for 12 hours, the red marks are the shape of the table, think it was hot in there and I ...Stuck...to it. so sorry no exotic story here, lol
Aw gee, thanks for offering to share Kevin, that's very very kind!
The truth is Alan is very generous when it comes to things like sharing a bottle of wine, I've found, but take a few loonies from his pocket by accident and he'll never let you live it down.
With points and fries (chips) he is a big problem!
Well anything above watford is north to me. Its not south east or west is it.Well not according to my compass.I agree its the middle of the country.But so is Birmingham
Im no more amazing than all the people on here just one of the more severe ones.I dont like my photo being taken because I then have to accept thats how I look.Not the 6'4"Biker I used to be (sorry dreaming again)I was most worried about this when I gave my daughter away at her wedding but was really lucky that the photographer was realy good and I nearly look normal.(If I ever was normal).
Hang on here............A biker.....A Southerner.....Spondylitic........normal!!!!
Doesn't add up at all........oh and if I lived in Morrocco, Hastings would look extremely north to me.......lol
And don't believe Mig about sharing wine.....SHE DOESN'T
Thats right it would be north but you dont live in Morrocco.
You live north of Hastings and I live south of Nottingham.
Your right its not normal its abnormal. But then I'm abnormal so its normal for me.Work that one out lol
Im sure the lovely mig would share her wine with me.
Ha, you are both Northerners relative to this Canuck.. even tho you don't have snow and polar bears!
And Alan! Whaddya mean I don't share. I do so. Or I would've. How could I have when you were the one treating?
Stop fibbing you! lol
I have to agree with Kevin - I seem to remember accusing Alan of being a Northerner the first time I communicated with him on this forum!! Coming from Cornwall, everything was north to me! I grew up at the most southerly tip of Cornwall - The Lizard! Now I live on almost the exact same latitude so you're still north of me.
And we have a heat wave right now - OMG - it was over 35 C today - my brain is melting.
I can still picture you as a 6 ft 4 biker, Kevin! D'you have any old photos you could post?
Hrmph! He looks more like a big huggable teddy bear than a biker to me!
Kevin might have ridden a motorbike, but he doesn't look at all like one of those blokes that I would cross over to the other side of the street so as to avoid avoid eye contact wiv, innit?
Anyway, he has a *greyhound*, NOT a Rottweiler - that tells you what sort of a bloke he *really* is - a Softie!
I will have a look I dont have many but I will try and find some.I look totaly different.
You would have crossed the street 99% of people did.The 1% who didnt were the police (Alan) who liked to stop and chat. I hung around with some very undesirable people. Got chased a few times but never got caught police bikes were slower then.I will try and find some photos of me with long hair and my bike gear on.
Ive sent one photo to mig of me sitting on one of my bikes its not brilliant cameras were not that good when this was taken ive edited it a bit to try and make it clearer I was
23 or 24 when it was taken I will try and find some others but most of my photos are my bikes without me.
PS Before pc Alan says it yes no photos too ugly would break camera or frighten children need hair cut and yes I was very anti grunt grunt police.
Well Kevin, someone has to do our dirty work for us. Thank goodness for them I say............
I quite agree the pc on the beat does a great job I have every respect for them and what they do.I have several who are freinds and Ive helped in the past.Its the laws of this country thats an [**BLEEP**] (used to be anti)
Hey Kevin... I've found and popped your biker pic into your post!
I've reduced it again too, so will pop it into your sig for you as well, if you'd like? Let me know, as I wasn't entirely sure if that's what you wanted.
I couldn't picture the long hair until I actually saw it, but yep, it suits you!
Thankyou mig yes can you put it in my sig please.
100 points for you.
Heigh Kevin - WOW. Great hair man... Still see you in the younger man - even though you have cut it all orf!
(Well done Mig - I'm still trying to 'learn' how to attach a photograph to an e-mail
The PC boys here are a tad fed up with me...being trying
an trying their patience!!
Holy Cow, and 100 whole points, gee thanks Kevin!
Hey Molly... do you use Outlook, gmail or which program for email? If you let me know I can probably help to guide you through the steps.
I know you can do it!
I think Molly probably uses Innit Explorer 3.0
Yea - AOL, otherwise called *in'it at the deep end...* My long suffering PC guys have to turn their brain boxes sideways to manage the working of AOL - and me? I daren't change to owt other otherwise I'd be even more losted: confused.com, innit?
(I do also have orange.fr but can't make head or tail of o'rage.fr!!
(I do also have orange.fr but can't make head or tail of o'rage.fr!! )
Orange you glad I didn't say anything about getting an Apple?
Great photo, Kevin. Was this around 1975 ish? I had a boyfriend back then who looked just like this and rode a bike!
I guess I need to ask what kind of bike you were riding. I can't tell by looking although I'm sure my hubby could! So I need to know before I show him your pic so I can act knowledgeable!
It was 1977.
The bike was a Kawasaki 400 two stroke triple the fastest 400 on the road at the time.Top speed 110 handled like a pig around corners.The only bike I had a smash on lost in the wet racing a mottoguzzi at 70+ miles an hour OUCH.
No that is not hagrid
I was called a few things but not hagrid.
Hi Kevin - hubby guessed the bike but was a couple of years too early with the date!
Thanks Folks.. Truley greatful for the information... I'm sorry I took way to long to respond. I actualy have been dealing with the insurance game and what i'm really reponsible for. I had to go to get an MRI yeasterday and just couldnt do it due to my sever clausterphobia (sp) and the deformity. I tried the open one and they could fit me in.. quite painful.. picture Dorf golf when Tim Conway gets pushed dowm... So I'm headed into NYC on Monday to do the stand up MRI. WOW.. I can do this... 40 inch plasma to watch ..now If I could have my coffee... Score....
I also have a"pencil " date for my surgery.. end of JAn.. I'll keep you posted... thanks for the support anf prayers...
Good luck to you I hope it all works out and the operation is succesfull.
hi folks... Well reality is setting in.. my date and insurance has been taken care of.. May 6th is the big day. Thank you to all !!> Please keep me in your prayers... I will try and make a post after i get back from the hospital... Did the presurgical testing...all went well except the dr asking me if i liked soda... i answered yes... he replied.. soada causes obisity and your obease... what an [*bleep*]...
ITs a good thing I have a sense of humor !!
The best of luck with this. Looking forward to hearing all about it. Also - thanks for starting this thread - it became very enlightening.
Wishing you the very BEST of luck with this surgery -- I hope it goes smoothly for you, that your surgeons prove to be as wonderful as Alan's, and that you have the best possible results!
I will definitely keep you in my prayers and will be keeping an eye out for your follow-up post to tell us all how it went.
A good portent. I was done in May. All will be a bit grim for a while, but wow the results..........wonderful. Rhe very very best of all to you. your life is going to get so much better.
As for the soda, (is that what we call lemondade?)
Invaluable after the surgery, i lived on it, wow and I am so so thin..........aren't I Mig...........errrr........
I thought having it in May was a good sign too, Alan!
Soda = soda pop! Your lemonade isn't fizzy, is it?
Thin? Um, is maybe not the most accurate, is this a trick question??? lol Let's say, I think of you as a big guy Alan.
ha ha go on mig say it as you see it FAT
Hey! I did NOT say that..!
You're trying to get me in trouble Kev.
Stop it! lol
You would too try to get me in trouble!
Now look Kev, which one of us has met Alan in person?! That's right - moi - and I've hugged him too so I win. Alan is a big guy, exactly as he is suppose to be.
(He will steal a biscuit right out from under your nose tho. lol)
Ya but would ya kiss him hello at the airport Kev??? LOL
Hey, maybe that's why he's shy!!!
uuuuuuuuuuummmmmmmmmmm No I would pass on that
pleased to hear it...........wow what a lucky escape............Yes Lemonade is fizzy.....
Me fat Kev......nope errr well.................errrr................ummmm slim-ish....!!!!
And yes was hugged and kissed by chick at airport who clearly had great taste.............then Mig turned up....!!
Well, SOMEBODY had to fetch you Alan....!
Yes and I am glad it was you but you didn't have to go and puch the girl that kissed me and absolutely should not have pulled her to the floor and kicked her. But then to hug and kiss me 47 times!!!!!!! well what is a chap to do........
me neither but i have hugged a halibut, cuddles a cod snogged a snook and groped a grouper................!!!!!!! lol
Oops, ok, verrrry funny you... I meant soul!
lol, hugged a halibut!
Our old vicar rang me yesterday, his wife has scoliosis, she has always had back pain, I went to see her, poor thing is very bent...............David (the vicar) asked me all about the surgery. I told him mine was a bit different but encouraged Jean (his wife) to go for it. She is 70, hope I was right!!
Anyway I gave them a copy of 'Going Straight' in the hope that it might give them a clue as to what to expect.
Soul indeed hah, was a great big error c'mon, admit it........lol
Is that the name of your book, Alan?
Yes Wendy, it is. It relates to my criminal activities and my reformation!!! lol....You have read most of it I guess?Although I have edited it and fiddled about and refused to put in the 300 extra comma's suggested by my friend!!! And are more pictures of lovely old me........
I read and thoroughly enjoyed what I assume where your first drafts that you posted here. I'm seriously hoping that you are hoping to find a way to have it published. I thought it was brilliant and would love to buy a copy when it's ready.
Mig has a final copy, she might be persuaded to photograph it and put a pic on here!!!
Yes my final book was a little different to the posts I made but in essence, the same thing.
Errrr......well I have passed it to a publisher. Readers Digest wanted it too but they wanted me to condense it!
Well I reckon that when I am ded my originals will be worth 25 million $'s but I am only asking for $20.000.00 per copy........lol
When did you move to Fairyland?
After the conversation about the Cliffs of Insanity (I think that's Donette's home town) we rewatched Princess Bride a couple of nights ago.
I think you need a new location, Alan...
Have always lived in fairyland, it is the only place where I can be sure of what I am
I'am alive !!! what a horrible trip... everything that could have went wrong did. but the good news is i'am alive.and now sraight its a long road to recovery, but in the end i'am glad i did it
Tell us more. I'm sorry things didn't go well but it sounds as though you're on the mend. I'm curious to know what went wrong and what went right.
I'm glad you're at least through the worst part.
Hi mcarlsen -- that is excellent news that you've made it through the surgery!!
Sorry that so much went wrong but very relieved that you are alive and STRAIGHT and posting to let us know! You sound very brave. I am so happy for you, that you seem pleased that you did it.
Please keep posting when you are feeling up to it. I really hope your recovery goes smoothly and that you keep feeling better everyday. Hopefully your quality of life will be as hugely improved as Alan experienced from his surgery.
Thank you for letting us know!! It's just terrific news.
take very good care,
Hey folks. Please be patient with me as my left side is still numb and its hard to type. so the surgury fused from the illium to t-2 they used 8mm pedical screws. they kept refering to me as a " big guy" another way i=of calling me plain fat LOL....it took 12 hours and here is where the story turns. the knicked the dura so i wasput in a coma for 72 hrsalso during the time under , i developed rhabdomylosis( very dangerous ) they filled me with fluids but i couldnt pass it until they hit me up with lasics... bring out the spackle buckets....during surgury they found that i had broken my back at some oint in thr past 13 years..so they had to fix that too. when taking out the arterial line, blood shot across the room which sent my heart rateup. then went into detac.. so they had to stop and restart my heart.. very scary......
I was assuming it was stuff like that. Very sorry to hear - very scary. Thank goodness you came through that all right.
Don't worry about typing until you're well. I didn't mean to pester you. I was just curious but really didn't expect you to provide the whole story yet!!
I'm thrilled that you're through the worst. I think it's so courageous of you to go through all that. What an ordeal.
Like Mig, I truly hope that this turns life around for you and everything gets better and better from here on.
Oh my God that sounds horrific!
As if the surgery itself wasn't dangerous enough to being with. That was a lot to have had go wrong. Thank goodness you survived it all and that the osteotomy itself seems to have been a success. And thank goodness your heart was strong enough for that.
Please don't worry about posting back unless and until you feel safe and able to be at your comp! We are not going anywhere and will be interested to hear how you are progressing in healing... when you can.
Wishing you MUCH easier and improved days ahead!!
cripes, sounds loke a long and grim journey. Well done, well done to the docs.
Soon life will be amazing
Yikes! You weren't kidding when you said many things went wrong!
I'm so glad to hear you're getting better because... wow.. that is alot to recover from. Scary, indeed.
Keep getting better. Healing thoughts your way.
I had operation 20 years ago - post op had to wear a body cast for 10 months (3 seperate ones) then another 10 months with a strap on cast. It worked really well and I got back up to 5 6, had lost 1in when broke back twice. Now I am back down to 5 3 but I have had many other problems, including a 3rd break!!
I'm back with good news and of course some bad... the good is I am slowly making progress, back to work for4 weeks now. had some tests done on sat for the left arm. found that I have a ruptured bicep that will require another surgery. along with severe nerve damage. this was caused by the the insertion ( failed attempt of an a line from my wrist to my heart...still in lots of pain in my arm, but the back is coming along... now I'm 5-11 and 3/4 and should be able to get to my original height of 6-2. lost some weight in the process. strange things have happened like severe dry skin on my ankles, and my inability to have more than one cup of coffee in the am...must be the drugs...
been on neuron ton for the nerve pain and Oxycontin for the back.. i have been weening off of that to good old Tylenol..
will post more once i'am done with the triple phase bone and mri scans of the arm....
opps forgot to say that the EMG test should be outlawed. its the worst form of electrical torture...did that test ever stink....
I had a resection osteomtomy performed at Buffalo General hospital by Dr. Edward Simmons back in 1996, and it gave me back a life I thought gone. Thanks to the procedure and the rods put in place I felt truly liberated after a long recovery. Being more upright meant putting pressure on atrophied muscle, so I initially had a difficult time. But not a day passes when I'm grateful for overcoming the fear I felt before undergoing the procedure. If you have any questions I will gladly field them.
6 months and counting ! life is great, though i went through hell, I'm very glad to have done this. I'm still dealing with the insurance mess, but i'm happy to report i surpassed my goal and completed the Tunnels to tower run/ walk in
nyc. What an awesome experience both physically emotionally and mentaly. I'm still out on Medical leave with my fire dept, but am back to work and in full swing. I post today needing help ! has anyone outhere experienced this operation ? I feel that I might be going in reverse. I.m not allowed to use remicade and methotexate for one year and frankly dont want anymore crap in my system, but wonder if my pain is the AS kicking back in...
Your stories are all amazing! The info you all shared about this procedure is what many are looking to find in this surgery forum therefore I'm taking the liberty to bump it to the top.
Hi everyone, I realize this is a really old thread but I stumbled upon it while searching for more information on this procedure and was hoping to get some help or information in case anyone is still around.
My case isn't your usual one, I was diagnosed with scoliosis when I was just a kid and after and after 4 surgeries, one of which the doctor changed his mind last minute and decided to remove disks, fuse vertebrae with out using rods, I was left with a very fused curved spine.
I have lived this way for over 15 years and now at 27 even though I was told to give up I came across the possibility of osteotomy being the answer to my prayers.
The thing is the doctor who I am seeing seems to think I could end up with complications because of the fact that my body has been contorted for so long. I was hoping I could get some insight on this if any one has suffered post op complications with motor skills or even bladder control and if it was temporary or something permanent.
Thank you for your time!
Hi Stella, I haven't had bladder problems other than those brought about by too much red wine.............but I have had a double lumbar ostetomy.
My surgery was amazingly amazing and so so so succesful. That doesnt mean it was perfect, but goodness it was very nearly so. Whilst in hospital i met young girl/woman who had severe scoliosis, after the surgery it was still clear that she had spinal issues but wow, she looked a million dollars (I asked her out but she said I was too old!!! Too old? Me I said.......well huh!!!) oh anyway, don't be put off; a slight improvement is better than none and the durgery carries the potential for great improvement. Be warned though, Osteotomy, to quote my own surgeon, is big stuff, stressful and dangerous. Go for it, I am glad I did
Hi, thanks for the response!
I totally agree, I would do ANYTHING for the surgery I just can't seem to find a doctor that wants to do it.
I've been to doctors all over the country and can't seem to find the right one, none of them have even given me any hope until this last one who was the one who said the chance of complications would not be worth it...him obviously not having any idea of what it is to live with everyone acting like you are an alien.
I have missed out on so much of my life thanks to me trying to hide my curve that I feel even if there were complications I would be in that rehab every day to recover.
That's where my question arose from, I want to make sure I am not being idealistic and think hard work will get me there and then turning out to be wrong and make it worse for myself in the end if that makes sense.
Which country Stella?
I can only speak about the English system but here we do have, 'The Patients Charter' this allows a patient to be quite emphatic in their desires and the health service must adhere to those desires, unless their is palpable medical reason not to. Elective surgery we call it and was what I undertook.
If you are in America, then John the (Dragonslayer), and/or Brad (wolverinefan)members here, have major AS and have both undergone very large surgeries, as has Phannu very recently. These may be the people to guide you further
A delight to meet with you, even if under these 'miserable illness' circumstances
I had the PSO surgery January 2011. Previous surgerys: laminectomy lower spine: 2001 & lumbar 2007. Was diagnosed with osteoporosis in about 2000. On calcium supp: Fosomax not until about 2005? I was almost looking at the ground when I stood, extremely painful when standing because was always trying to stand straight. Saw surgeon at least 3 times in a year before the surgery. I was 73 at the time I think he was trying to see how active a person I was as opposed to sitting on my sofa and feeling sorry for my self. I did feel sorry for my self!. But continued to go to Senior Center, play Mah Jong -weekly, and monthly: bunco & garden club. However have done no gardening. Flew to Mo. for a wedding. Walked with a cane. Counldn't believe it was happening to me! Surgery Jan 7, healing fine, walking w/cane in the beginning,released to drive mid April.2 wks later fell off a patio w/out sides over 1 foot and broke my hip. People are yelling Broken hip broken hip you could hear the noise of the break, a spiral fracture it's called. Saw my back doctor today and I'm doing fine from the PSO surgery, except the very top rod right side is tipped forward a bit the dr said I have soft bones, it may have happened when I fell but didn't have back xrays when I fell. Back is good, I'm walking w/cane because of hip, another dr visit for hip in another month. The PSO surgery is AMAZING AS FAR as I'm concerned.
Good Luck to all.
I had this op on March 22nd 2011. Previous surgery - fusion of 3 levels in lower spine 1989, back to work for 5 yrs but every day was a struggle. Whoops, one level never fused, so back to have this fixed in 1995. Road accident one yr later, 1996 - wedge fracture immediately above op site. Treated conservatively is the phrase! Told nothing could be done further surgically. Two more minor road accidents, shunted from behind while stationary. Injections in facet joints helped for 4 to 6 wks at a time but I could only have them every 4 months as small amount of steroid in with anaesthetic. All sorts of meds offered and tried before op, including fentanyl and oramorph, all appeared to make no difference. Couldn't understand. My body was leaning forward and spine felt like it was twisting to the right. Belly button was 2 inches to the right! Could barely walk or sleep so smiling became hard. Had become that miserable old git! All my thoughts were negative.
Well here I am, five months post op and still mending. My spine is amazingly straight. I'm sleeping well. On less meds than prior to surgery - paracetamol, diclofenac and dihydrocodeine. Was told by surgeons that I will always have some pain because of my history. I am now fused from bottom of spine to T12 with titanium rods either side. All earlier metalwork was removed. Feel so blessed to have been offered this surgery and given this chance. There are many dangers and possible complications. My heart stopped mid way through op but was started again. I have had none of the other possible complications. Apart from my skeleton, I was in excellent health pre op with good bone density.
I still can't walk very far unfortunately. An ingrowing toe nail in my left foot and a dropped arch causing problems in my right foot! Minor stuff compared with what I've been through and the local podiatry dept. are positive they can sort both out. I feel so impatient. Arghhhh! Friends have given me a mobility scooter so I can have short outings alone.
In the last 12 months I have put on 4 stone in weight, about 1lb a week!! Nothing is working. I ate raw food for a month, veg, salad and fruit and put on 2lbs! Waiting for the nod from the surgeon that I can swim again. Not allowed to do anything which might stretch spine until fusion is certain.
Lucky to have been born at this period in time and in Britain, where health care is provided for all of us, irrespective of one's wealth.
I am a mum of 4 adult kids and grandma to 5, nearly 6.
My hopes are to swim in the sea again, have positive thoughts, smile, laugh and enjoy my family and friends.
Waking up is still the hardest part of the day!
I was able to drive after 3 months once I was out of the jacket. Can also do minor chores around the house but no bending, lifting or twisting as yet. Full recovery will take 9 - 12 months so I'm nearly half way there.......
I was told that this is one of the most dangerous operations ever undertaken by an orthopaedic surgeon.
We all want to be free of pain or have less pain. No guarantees were given to me; in fact the opposite was emphasised at every pre op appt - death, paralysis, increased pain etc.
I'm still hoping I am one of the lucky ones.
Would be happy to hear from anyone.
wow Alan, thanks for sharing, my side profile looks liek your before pic, but i can still look forward.
i know all too well what it feels like to get the stares and the rude, crude amd inconsiderate comments from people, it really bothers me and i usually end up in tears feeling quite sorry for myself.
never heard of the surgery, but will look into it.
God Bless You! you are amazing.
Oh, how kind of you to comment thus.
Actually my right profile is the best, oh many females have fallen for my right profile........lol.
I always tried to regard negative comments as a source of evidence that I was different yet no less a person than the utterer.
Am so sorry you are having the trials that AS brings, but remember, today there are lots of possible options and so many more treatment successes than when I was a young fellow.
I wish you well in your struggle. Never ever allow AS to have the final word, you are its boss
hi Alan and everyone else
Just a word of thanks for all the interesting stories and valuable advice posted by various participants, esp Alan.
I have been an AS suffered since about 15 years of age, and now, almost 4 decades later, and a lot of history in between, I'm putting my hope on a planned procedure about which I only learned 2 months ago: the Pedicle Subtraction Osteotomy.
In this short time I have been unable to establish whether this operation has been performed before in South Africa. Am nonetheless confident that the specialist who will be performing mine is one of the top guns in the field of spinal surgery here.
Have been gathering lots of information about this, and my plan is to write the story down in the hope of assisting en encouraging others with a similar affliction. A six-level osteotomy (lumbar) is planned.
I have several pics (incl of X-rays) and these show the kyphosis clearly. Some older pics also give an idea of loss of height, which has been about 5-6 inches, like in Alan's case.
Despite the disability, pain and frustration... lasting almost a lifetime, I continued playing sports. Until a month ago I still played competitive tennis, and about every third day I cycle between 15 and 20 km. Looking forward to resume both afterwards!
The operation is to take place in less than 2 weeks in Pretoria.
I'd be happy to share my experiences on this forum, though I'll be out of action for some time after the procedure.
Anyone who has been through this, and can offer advice, is more than welcome to email me at firstname.lastname@example.org (the word means free speech in my language).
good luck with the op. They are good at it these days, is hard going for a while after, don't expect to wake up and be fit as a fiddle, this surgery is big stuff, but wow what a new person you will be. Good luck again and please do keep us up to date with your progress
Now I want to know when SA are going to drop AB de Villiers from the test side.....he is hopeless.............arghhhhhhhhhhh..........lol
Haha Alan - I read many of your former posts, and am used to the fine British sense of humour!
Thanks for the good wishes with the op - I'm expecting to be as useless as a newborn, and the trick will be to listen to my better judgement! Luckily I have a partner (a Brit by birth!) who knows how to work with domesticated animals, so she should see me right.
I had a few good grins about your remark on young AB the one-day captain of the Protea cricket team. He hails from my current hometown, Pretoria (and so does Faf du Plessis, who captains the T20 team). Yes I agree they should have dropped AB to give the Paki's a sporting chance! AB finished as overall topscoring batsmen in the series with the Pakistani's.
Am an avid sportsman myself, despite the quite severe limitations: played provincial level tennis for 4 provinces to date, and the most recent one was last year. Won all my singles matches in the national veterans tournament!
I hope to regain 3-4 inches too, and to carry on playing good tennis and doing many miles on my mountain bike for many years to come.
Good luck Tobias, prayers and many well wishes for a smooth recovery. There is a place on the main forum where you can post your x-ray and M.R.I. photos if you want to share them.
Have "before" photos and will wait some time until after the operation and recuperation to take "after" pics and X-rays, and then post a few.
I'm tracking, in addition to information about the obvious physical struggle that a person going into an operation is facing, aspects of the "mental" challenge.
I realized this more and more as I looked at the process and communicated it to friends and loved ones, who are obviously concerned and even alarmed. I'm quite calm and look forward to it, bearing in mind that its going to be an uphill battle.
Hi and best wishes for your upcoming surgery. The fact that you've been able to continue exercising until recently should help with your recuperation. And I hope you'll be able to do the things you enjoy once again. Do think of writing about your experience. Alan wrote a book + a song about AS now he's frequently on tour singing and signing books...it has brought him fame & fortune.
'Oh gawsh...........this is so embarrskin'
Where do you advertise your book?
I hear you Tobias,
I just had a pain pump implant and everyone wanted to know about it. It was a struggle, like you said in the fact that I had to face a decision about it and the mental portion to it as well. My family and friends were alarmed too. There comes a point in this disease, not for all but for some when you have battled all you can with it and have to really make some hard decisions.
I hope all goes well with your surgery and know we are all routing for you.
Hi Tobias, follow the link below. If you buy it remember that I get massive royalties...........errrrem,,,,about half of a cent......lol If you do though, I hop you enjoy it and perhaps see AS from another angle...........One or two here have read it but have all demanded their money back...!!!!!http://www.amazon.com/Going-Straight-Living-Ankylosing-Spondylitis-A/dp/145678305X
hi Pea, please let me know about this pain pump, Havent heard about it before. You are welcome to write to my email. Best regards
Thanks a great deal Allan! Would definitely love to read it and will order as soon as I am properly on my feet again.
OK, this is my first post since the op. Had my PSO on 4 April and left hospital on 11 April. Will have to look at the post-op Xrays again, but it appears that 14 levels were done. I regained about 3,5 cm in height and am upright. The forward kyphosis have been addressed very well and my sagital imbalance was drawn back about 25 cm. I now see the horizon when I stand and look straight ahead, instead of 45% down. The sideways scoliosis was also corrected probably about 90%. The surgeon (Dr Coetzee) said her wanted to work higher up, but the neuromonitor warned of trouble and wouldn't allow it. I am extremely thankful as this has changed my life already. Apart from the balance, spine realignment and aesthetics, I have now a freedom of breathing that I haven't had in more than 3 decades. I'm doing ALL my physio-exercises without fail and take 4 short walks every day. Evert day is better than the previous and I am extremely positive and thankful. Planning to buy a new home gym traiing system to start using in about 3 months time. Will start cycling then too if not earlier. WALKING TALL!
Tobias!! Good for you!! I am so happy that it is working so well for you.
Amazing and sounds like you are bouncing back...well maybe not bouncing but do keep us updated on your progress.
As I was the first time around in this thread, I am late to the party when it comes to your surgery, but I am thrilled to hear that it went very well and that you achieved all the benefits you had hoped for, if not more. Great to hear you are doing so well, and I am very happy to hear that you gained so much correction as a result of the osteotomy. It sounds like yours was just as successful as mine was, if not more so. Congratulations!
Sorry people I havent been back on this site for a long time. Lots have happened in the meantime. The surgery was a great success and without it, I would most likely have landed in a wheelchair by now. Unfortunately I still suffer chronic pains where the surgeon couldn't operate, namely my lower back and neck areas, and I have lots of nerve pain fallout in my legs. Nonetheless I do hydrotherapy three times a week, which is brilliant, I do Pilates once a week, lots of stretches, and cycle short distances once of twice a week. I spend most of my time n a special chiro-chair, but will never cease trying to move about, and strengthen my muscles and improve my mobility. In the end, the real pain to cope with is the one between the ears, and the rest is secondary.
Good to hear from you and glad you are keeping on keeping on. You are right about coping between the ears. A good way to put it.
I am seeing a new Neurosurgeon next week to see if there is anything more that he can do. Not sure about my feelings about it. I have got to square away what is between my ears.
Check in as you can.