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Any Adhesive Arachnoiditis members here?

Posted by jeannels @jeannels, Oct 25, 2017

Hi. My husband has AA. I searched for physicians who specialize in AA and got an old post from 2014. Any updates? We are seeking a specialist somewhere near Maryland and are currently in a Pain Management Clinic, in a dead-end insufficient treatment protocol that will not operate beyond their narrow parameters, which are not working well. He got transferred when his PCP retired, along with 67 other Chronic Pain patients. He is the only one with Intractable Pain and it appears that no amount of educating the NP and MD is going to make a difference. Anyway, I am trying again to find answers after nearly 12 years of his doing very well and having several pain free hours a day on the regimen that various PCPs had him on. Thank you for any help or advice or links or news.

I wish pain-free days and restful nights for each of you. Gentle hugs.

-Jeanne

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Mentor
John, Volunteer Mentor | @johnbishop | 3 days ago
In reply to @pdabbott "Hello, My username here is "pdabbott" I was dx with AA (per MRI) in 2019, after..." + (show)
@pdabbott

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

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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?

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