Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group bambo spine

Here is a pic of a Bamboo spine

John

Thanks everyone. I sent these pages to my mother and hopefully she will get another opinion as her symptoms sound to much like my own and I trully believe she has AS. Thanks agian.

Hey Brian, No offense taken from this guy!

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

I posted here recently about my Dad just being diagnosed with AS in his 70's. I figured he had it all those years but it seems general docs never took his complaints seriously. Recently someone finally xrayed him & found fused SI's and he's had all of the other symptoms for 55 years! I am B27+ and would bet he is too. It's a shame he never received proper care which might have prevented some of what's happened by now so I hope you can guide your Mom towards getting good treatment.


This bunny Kicks AS !

Hi
Here I have included a copy of the official diagnosis (as per the xray specialist) of a fairly recent look at my spine. As you can see they use the word Bamboo spine to describe it. My spine has been this way for years and I still am suffering significant pain although not as severe as pre-fusing and bamboo. The doc. says that the AS. is very advanced but I am lucky to have fused with only a small stoop.Although my spine is still trying to bend . It is a battle.
Ray




Date: Jan 08/02
AP PELVIS AND LATERAL BOTH HIPS
There is sclerosis of both SI joints consistent with the diagnosis of
ankylosing spondylitis. The right hip is relatively well maintained. A left
total hip arthroplasty has been performed. The components appear well
seated and aligned and no complications are evident.
CERVICAL, THORACIC AND LUMBAR SPINE
Comparison is made with prior examinations within the cervical extensive
posterior ankylosis is again demonstrated. This has not changed
significantly since the prior examination of July 17, 2001. Cervical spine
demonstrates mild degenerative changes throughout its course. Changes
consistent with a bamboo spine are present within the lumbar spine, again
consistent with the diagnosis of ankylosing spondylitis. Posterior fusion
is present within the lower lumbosacral spine. All the findings are
consistent with the diagnosis of anklylosing spondylitis.

Hi Brian410,
No, definately no offense taken here. Ihave read that same report many times and am having a very different experience. Reports like that made my life very confusing for a while. I just wanted to be clear that reports like that can be very limited in their scope compared to what is really going on. (upsetting as that is) I wish that report was true for me.
Liz

Dear Brad:

Being completely fused is absolutely nothing to look forward to, and several sections of my spine are completely fused, which leaves all of the forces that should have been distributed over many disc/vertebral cushions integrated and vectored into just a couple of places. RESULT: Fractured spine. And it does look like a bamboo stalk--but only on X-ray.

This is a condition far worse than any inflammation I ever experienced during full spinal flare, as the nerve interference causes my diaphragm to spasm, which totally locks up my breathing capability and the muscle spasms are so severe that these work against me when trying to stand up--it is an involuntary full Kegel and actually causes constant pain just from the isometrics. This, in addition to the hypertension that one of the doctors suggested was possibly linked to this painful situation.

Beware the drugs to mask your pain for years, as creeping calcification due to the inflammation might result in similar sequelae to my own. The NSAIDs greatly accelerated my kyphosis, and I have much pain in my neck as a result of this, also. Ignorance of the role of starches has cost me much over the years; eating starch with AS is like throwing gasoline upon glowing embers.

Best Regards,
John

Hi John,
FINALLY!!! I also have had isolated instances of those terrible diaphramatic spams where I literally thought I ws going to die..but it was so weird..it would come and go. None of my dcs could figure out what was going on..although my GP suspected it was a nerve problem. Thank-God she has half a brain in her head. It's a nerve problem from the fusions...OF COURSE..good grief. I agree..those spasms are the most debilitating frightening thing I have experienced to date with As. However the Remicade seems to have ended all of it for now..the spasms the iritis ect. for over two years now..I wonder why..is it the inflammation in the fusions that creates the nerve irritaion..Any thoughts on this? Thanks John.
Liz

Hi John,

Thanks, It's always nice to read your well informed posts, and I stand corrected.
The last thing I want to do is spread misinformation. My back is not yet fused,
just the SI's. So what I said about the pain going away after fusion is only my
repeating what I have read many times here on this web site, and yes I guess
I was trying to find some hope that one day this nightmare would end.

As a matter of fact you were one of the first to suggest I should try a NSD or LSD.
I don't know if I ever thanked you for that, so thanks again I have had a slight
reduction in my level of torment. I really had no idea that starch seems to be in
everything.

Anyway sorry to hear your having a ruff go John. My only wish is to help not hinder.
I just find it amazing that we have so much in common yet differ so greatly in the
progression of A.S.

If you can be good, be careful. Brad

Hi, Liz:

In my own case, the inflammation that also used to cause the diaphragm spasms was only a prelude to this fracture. These more intense 'strikes' really make things difficult. I have to sleep sitting up in a chair now to keep weight on my column, and if I should try to lie down, the fracture will shift and cause that sharp, lightning-strike pain that totally freezes my desired motion until it settles and I can move, sloth-like, while trying to get stuff done. I wanted to wait for the technology to catch up, but I may have to have the 'instrumentation' implanted to fuse ('stabilize') this area much sooner than desired.

While it was inflamed, it was a serious nuisance. Now that it has fractured, it is a totally controlling demon. I was almost always 'aware' of that inflammation, but did not expect that it would ever lead to the fracture; it was always most often a dull ache that would occasionally 'trigger' and pull at my diaphragm as I turned my torso the 'wrong' way or 'slept wrong.'

I had several years of good remission, thanks to the NSD and antibiotics, but the AS crept back as I tried staying off the antibiotics for longer periods; I suppose I was already near the cliff-edge on this one, and had just postponed things a while. Well, the nerve blocks work for around five days at a time....

I hope that you will avoid this particularly evil consequence--
John