Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Undecided - Dilemma (long)

OK guys. Having reviewed ALL the medical 'stuff' I been through since I relocated from the UK to France Nov 08, I am now in a bit of a dilemma - not 'quite' on the horns of, nothing sooo dramatic, 'smile', but!

Looking at the line up:
1. Starting off with a possible GP - who turned out to be anything 'but' what I would opine as a 'good' GP

2. Visit to ophthalmologist. Totally disappointing. Fella was only interested in sellling me new reading specs - when what I 'desperately' needed was to have my punctal plugs checked on (had they fallen out and IF so, please to replace.) He ignored the punctal plug issue...

3) Second GP sort of doing his 'best' but not reallly upto scratch: had 'never' heard of punctal plugs and prescribed me meds with: Thimerosol; Aspartame; Saccharine; Aluminium - when these are listed as a no-no in my notes

4) Rheumy visit that was a 'complete' washout. Fella couldn't even conduct a physical and took most of the consultation time in loading my discs onto his computer (and meantime kept on remarking on my pink top: "Oh, wearing pink." Laughing, smirking. I shake my head. )

5) Consultation with a gastro. Who in turn makes an appt to attend at the hospital as an in patient, for a colonoscopy and endoscopy. Nice fella, good eye contact. Basically read my notes (skimmed) took em in, good physical - he found the painful spot and was concerned. OK. Appt made for nxt Monday for Tuesday procedure, then another night to recover. Then he remarks that he is not interested in ANY of my pain. My pain does NOT concern him, at all. Hang on, where did this lot come from? A patient has pain cause summat is wrong, for a consultant (or any doctor) to opine that the patient's pain is of no interest is...fill in the blanks!

6) Rheumy 2 appt. Ahhhhmmmm. (See a previous post from KA member: 'How many AS patients does yr doc have?' OK so apart from the content of that post, what other reason do I have to demur? We spoke about my lousy right shoulder. He opined no surgery, unwarrented, but, made a DX on base of 'test' but, had no idea of 'what' the problem was/is, as he had NOT read the report and had NOT seen the ultrasound which was on disc which he couldn't read as he did not have a PC available to read the discs! (Great, sound opinion based on? A bit of a joke is MY opinion). Then said, cortisone injections! He'd NEVER heard of the facts that cortisone into the shoulder is HIGHLY detrimental to shoulder tendons, ligaments, tissue, as can/does burn ouit *especially in patients suffering from autoimmune diseases*. Happy to put him right, but, this guy is at TOP level. Errrr, shouldn't he 'know' this stuff? Sigh. (Ultrasiound report says, torn cuff, 40%, position critical!)

7) Attend at the hospital for the pre-op procedure checks and meet the anaesthetist. Nice guy. Keeps looking at me in a sort pitying manner? (Weird!) OK all seems to be well. Though he wouldn't tell me my BP levels - AND ONLY used a small cuff, not up-to-date cuff, nowt better than what I regularly use: top of the market number, bought from Boots the chemist for £70 odd. Ho-Hum. (Slight tinkling of bells in back of head...yes?)

Now: *Here's the rub*. We come to my colonoscopy and endoscopy. The hospital gave me NO information re the perequisites in preparation FOR the procedure. Like, dietary factors (extremely importsant otherwise the colonoscopy can't be performed properly and you have to return - oh yes?) So I read up again all about colonoscopies. Is there summat I'm missing in all of this? My GP had said that 'nowadays there are better ways of prepping'. In a dilemma now. Need to consult with the doctor in charge of the procedure. Take my courage into my hands, phone hospital this morning to try to clarify.

Reach consultant, who aks me who I am, can't remember me, what is he going to be doing and when? (Immediate surge of confidence? NOT!) Tell consultant, whom I only saw five days ago...what he will be doing and when I am due in to have following procedurers, and, please, could he confirm 'what' dietary factors I should be following (if any) and, could he confirm 'waht' the prepping would entail. He advises on diet: "NO..." - and a small list of items, and, MUST adhere to strictures from 4 DAYS IN ADVANCE of the procedure... Prepping - exactly the same as I underwnet three years ago - now up-to-date there!

I remark on the hospital not giving me any paperwork on this matter, none at all! Consultant says they 'must have run out of information leaflets'! Oh great. And I am supposed to follow strictures, without being told about them, and this 4 days in advance of a procedure that will entail a full general anaesthetic? Terrific. Well done hospital. A1 or...'F' for FAIL. Dismal FAIL. (Suppose I did not know, hadn't a clue as to what was what? What then? Go to hospital for a procedure that couldn't be done properly all because of total and utter ineptitude!)

F for fail. Not only but also. The hospital know I will be coming in and NO indication, at all, of what I should be bringing in with me - like own towels etc etc. Left in total limbo.

Now, my neighbour put me wise on what to bring in - she was recently admitted to the same hospital so, cleared that one up.

Meantime, knew I had information leaflet from first and second colonoscopies given in the UK, last one some three years ago. Search out information. FULL details, and the list is, as I remembered, quite extensive - not so small as consultant had listed off for me! More confidence boosting, yes? AND the fact that the pre-prep, MUST follow the dietary schedule, is IMPORTANT...

So. My question is: Should I *cancell this procedure*?

My whole confidence in the health 'care' (ah-hem) system here is totally dented (it is utterly and completely hyped up.) I am now *utterly nervous* of seeing ANY of em, let alone putting my entrails into their hands...

Do I cancell this appointment? Dilemma.

Molly C (France)
Keeping on Keeping on (but in France...? )

Oh. My. Word. Molly, I cannot believe this run around! I'm sorry I don't know what the right answer is here, but you sure are warranted at least a hug. Ugh. This is just awful. and more

Gee Molly
I thought that I was having it bad with the docotrs. I think that you have be beat by at least a mile. At least I have a good ortho surgeon and rheumy even if my so called new gp is a total idiot.
Good luck I wish I could tell you what to do with the appointment.I guess it depends on how important it is for you to have the procedure,,

Gee Megan, thanks. I needed that hon was 'almost' beginning to feel 'hounded'... Trying to work my way through this to some idea of clarity.

Putting the positives together:

1) GP is 'vaguely' listening to me - am getting the referrels

2) Rheumy confirmed the AS DX - I can ignore his ortho input

3) Consultant gastro found the tender spot and 'seemed' concerned, though he couldn't for the life of himself remember me or what he was going to be doing...

4) Hospitals make mistakes...yea, well, OK (though this one was...fill in the blanks)

Molly C (France
Keeping on Keeping on (who is the joker in the pack? HaHaHA!)

Quote: "I guess it depends on how important it is for you to have the procedure,"

That's the nub Valerie. Sigh. having problems. Simmering and flaring up. Been bad. Summat going on, stomach as well as guts. But, I don't want to regret going forward for the procedure - like I should NEVER have had that shoulder replacement. No way. Not without a second opinion that is. Could have staved it off until I could get to a really good orthopod, but... Another story (boring in the telling!)

Surrounded by ineptitude, idiocy, and ignorance - crass ignorance and culparable ignorance. Let alone the 'Oh well' laisse faire attitude! Gggggrrrrr.

Yes. Can only be 'my' decision, but - need to talk it through.

Thanks guys - will keep y'all advised as to what I decide. (Yea, hold yr breath, 'LOL')

Molly C (France)
Keeping on Keeping on (determinedly, come what b....y may!)

hi molly,

i moved from one state to another (500 miles apart). i've been here since summer 2003.

did find a GP right away, though he still thinks i have "just a little bit of tendonitis and some discomfort" and finally after a few years, have found another promising lead, so "meet the doc" visit to check him out.

went through a pain management doc with no bedside manner, a nicer physiatrist who told me to stretch no matter what my problem (stretching is nice but does not solve everything) and then fired me, but after 3 years, found a good physiatrist.

got lucky with the gastro doc, podiatrist, and eye doc. derm guy seems fine too. recommendations are the way to go when available.

i'm on rheumy #4, the 3rd in this town. and maybe he's a keeper, though he too thinks i just have a little osteoarthritis in my SI (does that cause screaming muscle spasms? i doubt it) and does admit the whole tendon thing is one big mystery to him. but at least he's willing to throw some drugs at the problem. we're on NSAID 2 now. that's after already ruling out vioxx and celebrex in the past. NSAIDS do work somewhat whereas tylenol doesn't (so are an indication of inflammation) not sure how many NSAIDS we'll have to try before he realizes they all cause edema and gastritis. or maybe i'll be the one eating crow. i'd love to be wrong on this one. wouldn't it be nice if it were as simple as swallowing a little pill?

and finally after almost 6 years, finally, maybe getting some help from a endocrinologist.

and i've yet to find a PT to take the place of the woman i had down in virginia. i loved her!

i only share all this to say, boy, it takes awhile to put together a medical team when one moves.

as for the procedure. if you need it, you should probably have it. but could you find a different doctor that you feel more confident in?

sue

Hi Molly,

What rotten luck!!!

You might want to walk into the hospital's pharmacy, show them your papers for the GI exam, and tell them you need a prep right away so you can have it done. He or she should be have no problem contacting your doctor in charge, possibly even at home if necessary, get you a prescription, and give you the prep you need.

If that fails, and if it is an absolute must that you need the scopies done, then I recommend seeing your own pharmacist for advice about non-prescription types of preps/laxatives to buy. I would personally recommend 2 or 3 bottles of a natural Saline-Magnesium laxative, if you can handle the high sodium content. You will need 36 to 48 hours of prepping time with this and no eating at all though, except water... your pharmacist can give more advice on that. You will know when you are done prepping when all is clear, if you know what I mean.

The only dietary changes I needed to make was fasting during the prepping, which was last year and a few years before.

I hope this helps,
Take care,
James

Hi Molly,

Sorry to hear all the issues... not sure I would be 100% comfortable with procedure. But from the looks of your post, not sure what to make of the medical care in FRance.

May just need to be a very smart patient.

Tim

hmph. If I couldn't get through to the people I needed reassurance from mañana... I think I would reschedule.
I'm not telling you that you should, I'm telling you that I would. Especially since you asked... Molly... why do you think you asked? Does it feel wrong or are you just ticked? There is a difference.
I think you'll know how you feel by tomorrow (wait, it is tomorrow for you, isn't it?).



cc

I just despair when I think of the people out there who don't have access to the internet or who just trust the word of their doctors. I have no experience with any of the procedures but I think you should trust your own feelings.