Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How long did it take you to fuse ?

What do they mean by complete spinal fusion? Do they mean the whole spine or just any number of vertebrae?



How did you gain your ROM back?

I have bone spurs in some of the facet joints in my neck, left side.

When I am in a bad flare, such that there is a lot of inflammation in my joints, that combined with those bone spurs, really press on the nerves at those locations.

Causes the neck and upper back on the left side to go into terrible spasms. The muscle spasms are largely what limit my mobility at the time.

A combination of getting the flares under control, thus less inflammation for less time (see the info below my name) and weekly chiro (caution there as not everyone recommends chiro and the wrong chiro could do more harm than good; all mine ever did for my neck that helps a lot is manual traction, the kind of manual traction that a manual PT did in the past, helps a lot when I need it). Too, I have an interventionalist who gave me a cortisone shot in those cervical facet joints that were most inflamed; it really helped reduce the inflammation there, take pressure off of those nerves. Again, not recommended for everyone, but desperate times call for desperate measures. Since it only lasted fully for a few months, and I didn't want the cortisone injections to become habitual, we decided to inject the worst of the triggerpoints in the upper back area including the upper traps, rhomboids, etc. All of this has made it so my neck and upper back are better than they've been in the 12 years since it all started. I do understand that some of what I've decided to do may sound risky and not for everyone, but it has helped me so much, and given me much better quality of life. And my neck in the past, when it all first started, was so bad, I never thought it would get better. But years of manual physical therapy and lots of manual traction and soft tissue work back then helped a lot; then fast forward to all the stuff I described at the beginning of this paragraph.

For me, I flare, and then am a bit better in between flares, so for me, its very cyclic. Thus have learned that when things seem to be at a point of no return, that for me, things can and do get better.....til the next flare. The bone spurs in my neck (and same for the bone spurs in my lower spine, and the arthritic changes in my SI joint) are progressive, and thus its hard to predict the future.

Something even riskier, bone spur surgery.....my interventionalist and I have discussed it......he and I want me to talk to one of hte surgeons of the practice. As time goes on, procedures improve, become less invasive all the time. Plus so long as I can be functional for now with less invasive methods, no plans for surgery now. But I do fantasize about the day that I have the bone spurs removed, and can once again sit in any chair I like, get in the car and go where ever I like, travel the world. But for now, am content to sit where I can, drive with ice packs only in my very old car for a short time, fly anywhere that I can get to in about an hour as a general rule. But to be able to just go.....that I guess is my dream. And some times, dreams do come true. But I'm also a cautious person and so surgery is the last thing on my list; if I can carry on without surgery, then that is what I will do.

And I will tell you, my old physiatrist who sent me to the interventionalist told me flat out that "everyone gets bone spurs as we age, and no one would ever consider doing surgery on me"....but after seeing the interventionalist, I was reminded that much of all of this is opinion, and everyone has there own. The most important thing I think is to find doctors who help us and that we have complete confidence in.

Hey! I'm bringing this thread up again to hopefully hear more stories.

Thanks!

Fusion isn't so bad, it is the deformity and the limitations that it brings that cause the problems.


I fused quickly from top to bottom but was beautifully bent in Kyphotic delight..........................urghhhhhh. Mind you I could reach the floor then, well I weas halfway toward it before I stated, now though I can't get near the floor...!!! I love AS

LOL! I laughed so hard at that! Love the expression.

How are you now? Still bent?

Strangely what I fear most is the looks and opinions of others if I end up with visible damage.

was 6 feet 5 bent by AS to 5 feet 9 surgery straightened me and took me back t o 6 feet 1 inch...so relatively straight (have bent a bit since surgery) kyphotically put do enjoy a
picturesque left leaning scoliosis but is barely noticeable......i am one of life's lucky people. And since the surgery I have a new girlfriend every day or two.........!!

I always assumed the dating scene wasn't particularly tender towards AS people...

well what I meant to say was that I INTEND soon to have a new girlfriend every other day or so..........I am quietly confident...!!!

I imagine that approaching a woman in delicious kyphosis or magnificent fused neck would be pretty hard. lol.

How come I am not surprised ! :o)