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

I am fully fused from lumbar through neck and it probably took about 15 years for the full progession. Pretty much no ROM but I don't have issues with my hips or knees so I can still get around pretty well. If it starts to fuse the most important thing is to do the exercises to keep it as straight as possible. I have a little forward tilt but I've seen a lot worse. I think full fusion is a small minority of AS people so hopefully you won't get there.

Approaching 25 years of AS and only one SI is fused. One son has as for 9 years now and no fusion of any kind while his brother, also AS for 9 years or so has only SI joints fused.

My dad has had AS for 40 years now and only 3 vertebrae are fused. Although it is high in his back so his head drops forward.

varies a lot

Hi Valsmum

I've only been suffering from AS for 4 years, but I've noticed fusing already... but with the fusing seems to be less pain.

In the beginning SI inflammation got so bad that I couldn't walk for nerve pain in the buttock and down to my heel (only on the left side), but for about 6 months now I haven't had those nerve pains in my leg but I have noticed more difficulty when doing the Pilates rocking roll, as if there is a flat section in my lower back that just isn't supple anymore. It seems to be a small section that has fused because I can still do most exercises, and I can still touch my toes.

However, for about a month now my upper back is burning and turning my head is quite painful. The Yoga baby cobra or upward facing dog seems to make it hurt in a good sense. However, sitting and typing is hell at the moment.

Fusing brings less pain, and we can manage the form of the fusing, I HOPE !!! ???

Pain and losing range of motion does not necessarily mean you have fused. You can't tell whether you have fusion or not without taking an x-ray.

agree. I went through a 3 year period when my neck would not move side to side at all and was very stiff and painful. Doc did an xray and no fusion of any kind. Today my neck moves fine and still no fusion

Hi There
I have done stretching from the day I was diagnosed. I haven't had any fusing, lots of pain but no fusing. I have lots of new bone growth. Don't feel that you will fuse for sure, because it isn't always the way.


Janet

Just found an interesting article about radiological changes at http://radiology.rsna.org/content/258/1/192.full

Interestingly, they say the following about fusion:

" Progression to complete spinal fusion was seen in only 34 (27.9%) of 122 patients with a disease duration between 30 and 40 years (mean age, 56.1 years ± 7.1 [standard deviation]) and in only 46 (42.6%) of 108 patients with a disease duration of 40 or more years (mean age, 65.6 years ± 8.4)."

So even after a very long follow up its quite clear that fusion isn't inevitable.

This might fill in a few gaps...
http://www.medscape.com/viewarticle/706108

Can structural damage be prevented in AS?

Hi

I know for me taking an NSAID daily for the last 25 years, seems to have slowed down the progression. I took them daily , no matter how I felt. There seems to be clinincal evidence supporting daily use of NSAIDS and slowing down of progression. If I understand correctly, the anti TF, don't at this point show that evidence.


Janet


Janet

I was told by the physical therapist to lay on my tummy for at least 30 minutes every morning prior to getting out of bed, to help with mobility of my neck and spine, then on to stretching via yoga, Pilates and exercise. At first I could only do it for 10 minutes but now I can do it for the full 30. It has been helpful. Doc says I certainly sit straight.