Re: Opinions on spinal fusion/Ehlers-Danlos syndrome

[Guest guest]

Ehlers-Danlos is a collagen defect so it affects everything that's attached to

anything else within your body. There are several forms and several levels of

severity, but in general your young friend can expect basically all her joints

to worsen throughout the years, with early-onset whole-body osteoarthritis. I

hope she is in a support group and has a good physiotherapist helping her learn

how to strengthen the muscles surrounding the joints so they stay more stable.

My watchword is " Just keep swimming " , in other words. STAY ACTIVE. This applies

to all forms of debilitation, I think. If I can't move some part of my body for

a while because of the pain, I keep moving everything else around it through

stretches and exercises.

And of course, do whatever you can to distract yourself and keep your mind off

the pain, because letting the pain occupy all your thoughts just adds to the

depression that's always present (chronic pain is chronically depressing).

Thanks to all who have given me opinions and experiences about multi-level

fusion. I need to delay it as long as I possibly can, I think - especially

because I know other joints will go, and will probably worsen faster if I have

the traumatic surgery and its long, reportedly difficult and inactive recovery.

Give your young friend my best and invite her to contact me; I'd love to stay in

touch.

- in New Mexico

Anne Andis wrote:

>

> I have a friend with EDS (Ehlers-Danlos syndrome). It mostly affects her legs

and knees now, but she is only 22 or so. The EDS contributed to your spine

problems?