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
Welcome Pat @pdabbott, Sorry you haven't found anything that provides much relief for your Adhesive Arachnoiditis. I did find some resources in Oregon that might be helpful when I did a search for resources for people with AA.
-- Oregon Pain Guidance: https://www.oregonpainguidance.org/paineducationtoolkit/peer-support-resources/
-- Pain Education Toolkit: https://www.oregonpainguidance.org/paineducationtoolkit/
-- Pain Care Toolbox: https://www.oregon.gov/oha/hpa/dsi-pmc/pages/pain-care-toolbox.aspx
Have you looked into any state or local government resources to see if they have any suggestions?