Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Any hope?

I am afraid I am one of those who did not handle AS correctly. I did not follow therapy properly and am now in a bent over position with a fused spine after having AS for 30 years. I am not badly bent over but enough that it effects me, for example when I walk I am always looking down. I am not in much pain anymore, but I wonder has AS run its course with me, or is is possible I can reverse some of its effects, particularly being bent over like this? I also have artificial hip joints which function okay although sometimes I have to use a cane or crutch.
SteveD

Hi Steve,

Yes, something can be done for worst cases but it involves surgery. Several of us on this site have had back straightening surgery.

I was for years bent over and looking at the ground only as I walked. After the surgery, I went from 5ft 2 inches up to 5ft 9 inches tall. My original height before bending was almost 6ft 1 inch.

Hopefully, you will also hear from Alan (Ineptwil) on this question.

George

Steve,

What's on the x rays, bony fusion bamboo spine?

David

Hey, welcome to the KickAs site! Sometimes it gets slow on weekends, so I thought I'd better say that for fear everyone else is out having some wild party and you sit here wondering...where are they?

SteveD, don't ever berate yourself for "not following therapy properly" because no matter what you were taught/told to do, I guarantee somebody else would have told you to do the exact opposite depending on your age, your Doctor's training, and where you lived. There are lots of people who followed every piece of advice and took every medication offered and they are still bent. Heck, I'm a little bit bent (female version, a little swaybacked, a little scoliosis, crummy c-spine), and I'm one of the low drug mavericks who was told NOT to take a lot of NSAIDS very early, which at the time, I thought the doctor was insane. Of course, my kidneys have the filtering and processing capacity of a small hamster's, so in retrospect, after many bouts of peeing blood, just maybe this was a good idea.

I do my neck exercises compulsively because I sure don't want to go back to that place I was 12 years ago when I couldn't turn my head at all. Yuck. I remember the feeling of shock I had when my head finally moved a little to look up after several weeks of physical therapy. Now it crunches away merrily but I can still turn it. I also remember the first time I tryed to get my back flat down on the floor. Talk about a bridge over a troubled floorboard... I don't know how far you can go, all I know is it never hurts to try. Wait, no, it will hurt to try but it won't cost much. I am just trying to slow things down enough that my chronological age starts to catch up with my spinal x-rays, apparently my spine was out carousing and had it's driver's license at age 2.

Check out the NSD/LSD diet side of the forum, sometimes they let us out of our crates for awhile if we agree not to pull on the leashes too much.

Steve:I am 50 and started in AS with left hip joint hurting like Heck at 19 intermittantly.My Dad wh was 40 years older than me and we got dxed when I was 27.Supposedly his dad ,a Missouri dairyfarmer could not milk the cows anymore after middle age(maybe AS) .The internist noticed we were both slightly kyphotic.At 36 I had heart surgeryfor wpw and my neck and right wrist fused in the month I was sitting around recovering from having my chest sawed open.My left knee had to drained and filled a few times and I had to get out of tool making which requires standing up all day.The SF 49 ers ortho was treating me and when he found that I had one bro with ulcertive colitis and another bro with psoriassis and our dad and me supposseedly AS and a test for Hlab27 it was fairly conclusive.I tried to do the Spondylitis Associations excercises fairly religiously but gradually my low back would not flatten anymore.I think sleeping with none or a flat pillow helps along with the excercises but perhaps the LSD might be useful to the newcomers.I am retired now but I am pretty beat up from AS.I had a rheumy tell me that people in the old days got so kyphotic that they had to walk backwards and reach between their legs to operate a door knob.I come here and send my check to the Spondylitis Asoc. of America as I have a 9 year old boy who has a supposedly 1 in 20 chance of gettting it and I want to further the cause for a cure or better management techniques.
kev

Hey, I hear you Kev. You just have to keep plugging away. I once remember an old western film where a young gunslinger told the old gunslinger, "are those wrinkles all over your face?" "No, replied the old gunslinger, those are war maps!" I think that after many years of AS, we become hardened, no pun intended, as to our condition. But I tell you what, I'll never stop kickin AS until I stop kickin! I refuse to have my life lessened by sympathy, anger about my condition, or any other ill feelings from me or anyone else. The good Lord allows me to function almost everyday and there are many days that are productive and there are even some that I really have a good time doing it. So what the heck, I am going to try to live it to the fullest and praise God I have the ability to do what I can. There are some in alot worst condition than me. I heard someone on this site one time say, "If I was forced to pick a disease, AS would probably be one of them." I think I am goin to go do a little hang time on my inversion hang-up's table and get rid of some kinks.
P.S. Have you heard about any new support meetings happening in our area?
Talk to you later Kev. And hang in there Steve. No worries.


Keep kickin AS!

Painman.<><

Thank you for the helpful and encouraging replies to my query. I will look into the idea of surgery. I don't know about the x-rays. I should get an orthopedic doctor. By the way, Kev, my grandfather was also a Missouri dairy farmer, near Springfield. My father has RA, I don't know how prevalent among other relatives.
I don't have that much pain now, except lately my hip joints have been bothering me alot. Both are artificial. I sleep in a reclining chair rather than a bed.
- SteveD

I always suspected that my spine was as you "out carousing without its drivers license at age 2." Perhaps some of my own carousisng is in fact merely not my doing but mere hypnotic suggestion by my spine.

Yes, I like that very much. On my next very evil bout of behaviour I shall tell any shocked observers it was not me it was my spine. With my posture and Bruno by my side I doubt many will argue.

I always suspected it was more a Merlin the Magician thing and that my spine was born at an octegenarian stage of develoment and would age in reverse to its youthful state. It seems it, however, started old and quickly evolved to ancient.

I suspect my spine partied or caroused with ancient Egyptians.

 
stevec-they also serve who stand and wait

Hey SteveD

Here I reside only a letter away from you being a stevec. Much like you I am on my second set of artificial hips. At 41 (wow) I'm now diagnosed nearly 30 years and probably didn't follow the wisest course of treatment.

I was, of course, never offered the wisest course of treatment nor any of ts first 10 runners up until I came here. THere is always hope. SOme things I suspected I couldn't change for the better Ihave and some I never imagined being in peril are.

Never let the Doctors lie (AS burns itself out) make you less vigilant. My bent spine is lousy but vision problems, heart issues or other potentialities still lurk. I stretch so often that friends mock me because I do it unconsciouly. I know what a battle sleeping is and with my spine I have been tempted to give in to the recliner but I opt for a bed even if it means curlingon my side and rolling to the other with a feeble effort at spending a few minutes here and there on my bent back trying to mimic some position that Iwish would resemble flat. My pillows are a bit thinner after years of this.


In any event welcome.

 
stevec-they also serve who stand and wait

SteveD: Thanks for the reply:My Grandad farmed about 70 miles south of Kansas City,not far from the Kansas/Mo Border in Amsterdamn ,Bates Co.He died of Alsheimrmers which is rampant on both this side and my Australian Warbride Mom's side.I guess there was not much except aspirin by the time grandad died at 73 in 1950 in a rest home .A tornadoe flattened the farm and killed grandma ,age 62 the year before.I move back and forth in the night from the living room recliner to my bed.We do what we have do to get that blessed sleep every night!Medical science will come up with some more answers as time goes by .the Hla-B27 marker was found as late as the early 70's I believe.I think my southern San Francisco Bay weather which is not too hot nor too cold is a blessing for my AS.
Kev