← Return to Any Adhesive Arachnoiditis members here?

Discussion
jeannels avatar

Any Adhesive Arachnoiditis members here?

Spine Health | Last Active: Jun 11 5:47pm | Replies (121)
Comment receiving replies
Profile picture for scooter65 @scouillard

I have adhesive Arachnoiditis for 15 years now and I'm declining every week, I will do your survey if you can tell me of a support group I can chat with, I didn't do FB, but I can do Skype or zoom. Again I would be happy to do your survey.

Jump to this post

Replies to "I have adhesive Arachnoiditis for 15 years now and I'm declining every week, I will do..."
pdabbott | @pdabbott | Jun 11 4:43pm

Hello,
My username here is "pdabbott"
I was dx with AA (per MRI) in 2019, after cerebral spinal fluid leaked into the lumbar spine after surgery.

The symptoms has progressed and I am now, unable to walk, so am in a wheelchair. The worst of all this is I have significant sharp stabbing pain with movement so am not seeing any quality to my life.

Since moving to Portland, OR last year, there are no neurologist who will see me. My PCP just says he does not know what to do.

Does anyone know of a neurologist on the west coast that will see patients with AA?

I accept there is no cure for AA, but I am hopeful that there are things that could help. My disease process is worsening and I would like to find some quality of life.
Opioids help the pain, but, at least for me, it is hard to enjoy anything when my mind is altered,

If anyone has a suggestion, I would be very thankful.
If you have AA, I am so sorry. This is an awful process to go through.

Take good care and keep up the willpower to seek laughter and joy.
pat

VIEW AND REPLY