Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How mny people with as actually fuse?

Hi all I was just wondering how many people who have as actually fuse either back or neck ??Ive had as for 7 or 8 yrs now and im just recently finding out what it actually is .I condider my self lucky with the state of my as compared to what I have read from others,not that im in the best shape but i feel lucky. I think thats thanks to the perfect shape i was in before it got me and that I kept as active as possible whith my condition .But as it spreads to other joints it makes me wonder is fusing gonne be in my future?Thanks Steve

You havent lived until you ride a wave .The best medication of all SURFING.

Hi Steve,
I've had symptoms of Spa since I was about 6-7 yrs old[knee problems and back in late teens]. I went full blown in 2000. I'm fused L5-SI. I think I've done fusing wise..although the pain makes me think otherwise most of the time. I've got other damage but no fusing.

Keeping active is very important..I try to keep moving, or I'm not much use a momma.

Take care!


Adios!
Buggie

HI Steve, that's a really difficult question to answer.

For one thing, AS is so very individual in nature that what applies for one will not necessarily apply for anyone else. Also, the disease presents itself very differently in men and women. There are always exceptions, of course, but as a rule that's how it is.

The trend seems to be that men fuse more quickly and drastically than women. Women, perhaps because of our estrogen, tend to fuse later on in the disease, usually as they come to the end of their child bearing years. Again, there are always exceptions.

I've had AS since my late teens, had my first full blown flare when I was about 27 in 1991/92, but showed no visible signs of fusing until I was 37. I don't know when the fusing happened, but it was some time during the 1990s I think.

However, one of our male KAers went from being 'fine' to being in a wheelchair in about seven years.

Did that help?

Hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom

Thanks all that does help ..I also was wondering does fusing and backpain allways go together ??So far ive been pretty good in my back my main probs are in my hips(badd)and my shoulders and knees .So has anybody fused in thier back or neck without bad pain in those areas?.Thanks so much again !...Steve

You havent lived until you ride a wave .The best medication of all SURFING.

Hey Steve,

From some of the more recent research and the sub B-27 genes they claim they are seeing the association of one of the sub genes in the people who fuse more than others. My thoughts on this are only time will tell.

Since AS affects everyone different there is no way for us to tell, but I know other people who have fused joints other then the spine and neck. Only three of my lowest vertebrae are fused but every vertebrae shows nodules or tumors throughout my spine with no signs of them trying to fuse yet. My ankle has been giving me a fit and keeps locking up, I sit or lay for hours rotating it by hand and can feel the AS has been working hard on it. The doctor's told me in 1990 I would need left hip replacement because of the AS. I also had a major MI (heart attack) in January 2003, but had never had high blood pressure nor high cholestrol.

So I think your guess is as good as a lot of the rest of us as to the totals of complete spine fusion.

Have a good one,
Brent

If you dont fuse you dont have AS. Until that happens you only have spondylitis (some uninformed docs call this fibromylagia).
AS is the end result of the imflamation, hence the name ankylosing (fusing), to get to this stage can literally take years if ever.
There should have been some one, I would have thought, would have pointed this out before my reply.
To make this clear, AS is the end result of an autoimmune disease not the beginning, but it is important to get a diagnosis of potential AS early so that when the spine ankyloses your posture is more or less in an upright position, this is achieved by exercise, stretching. The meds are to relieve the major symptoms (pain) so that we can remain as mobile as possible.
rat

I have been totally fused since I was 40. Well, almost totally. I could move my head then about 12 degrees to the left and 15 degrees to the right. My up and down head movement was roughly 8 to 10 degrees in either direction.

My spine is still totally fused at the age of 68 but through much continuous head exercises, I have increased my lateral head movement about 3 or 4 degrees in left and right and 1 or 2 degrees in the up and down direction.

The only real change in the last 28 years is that I had a couple of surgeries that increased my height from 5' 2" back up to 5' 9" tall. Not bad since I did start at roughly 6' 1" when I was 30 years old.

The fusing isn't the worst part, the bending IS.

George

Old George,
Hope you don't mind my asking, what kind of surgeries restored the height? Thought you guys were more than exaggerating about "how tall were you?" in the old forum...and I knew my children were growing by leaps and bounds but, gulp, I measured and was alarmed.
Klem

When I took PT ealier this year they told me I had the straightest spine they had seen in an AS patient. I told him there was two reasons for my spine still being as straight as it is. First the fused part is low lumbar and the rest of the vertebrae have tumors, but have yet to fuse. The other was I will and have refused to bend forward trying to ease the pain, because it makes my ruptured discs pain worse.

I understand the concept, I to am curious as to the surgeries George had and how many vertebrae they operated on each time to gain back the seven inches. I have lost about an inch of my height. My oldest son (27) is still an inch shorter than me at 5' 8", but my youngest son (16) is now almost eyeball to eyeball and loves rubbing it in. If I do get down to 5' 2" before it's over my daughter (18) will still have to look up at me, because she is 5' 1½" and you better not forget the ½" when you say it or whew.

Have a good one,
Brent

George

The fusing isn't the worst part, the bending IS.
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I'm with you on that one all the way. I could live with being fused but the bent over part really does suck. But I did think of a job that I could still and that would be at the Airport as a Crack sniffer.

John