Any Adhesive Arachnoiditis members here?

I just learned of an osteopathic practice in Falmouth Maine that does myofascial release as a specialty. It can be very helpful and I’m hoping to try MR again.

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.

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?

Looking for Rx and natural remedies or treatments for adhesive arachnoiditis

@karencornett , welcome. I moved your question about treatment options for adhesive arachnoiditis to this existing discussion in the Spine Health support group where you can meet other members like @bolake @sophie46 @gsr4863 @cgreenle @laurenseavertson and others.

- Looking for anyone with adhesive arachnoiditis and treatment options https://connect.mayoclinic.org/discussion/looking-for-more-information-for-adhesive-arachnoiditis-treatment/

Karen, how long have you been living with adhesive arachnoiditis? What treatment have you had?

@colleenyoung Thank you for moving me to the group. I have had A.A. since 2015 when my dura was cut during spine surgery. I take Methadone three times a day and Amitriptyline at night. I find this medication effective except for neuropathy in my feet at night,

@sophie46 Hi Sophie, I too had my Dura torn during surgery. Then had 3 failed blood patches that just gumed up the base of my spine nerve bundle. It's been hell. I hope and pray that someday soon we can get relief. I'm sorry to hear you have AA. I feel Nobody understands my pain

@gsr4863 When I had the spinal fluid leak they drained the fluid from me by setting up a drip, which removed the extra fluid from me. I'm unable to think of a clear way of saying this. It worked. I am sorry that your pain is not being addressed. This is cruel.

Best bet is to connect with Dr Forest Tennant in California...retired dr that has dedicated nearly all his time to researching solutions for treatment for this. https://arachnoiditishope.com
You can email him and he'll answer. I use many natural remedies to help with this condition. The top recommendations are steroids and strong NSAIDS of course, but I cannot use these and have found other things that can help. Dr. Tennant has suggestions also.