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

I have AA and a rheumatologist helped me. I have a doctor friend that has Arachnoiditis tell me that if I don’t get my inflammation under control I will never get relief. I went to a rheumatologist. My numbers were so bad I was put on steroids for two weeks. I was given Plauqenil and calcium channel blockers. My numbers went down for the first time in years. If you don’t get the inflammation down it will cause you a lot more problems. I wish someone would have told me this years ago. This is what helped me the most.

Hi, @caklady – thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through visiting a rheumatologist and addressing your inflammation.

I'd like to bring into this conversation others who may be interested in reading about and discussing your experience, like @mdmo @ursweetpam @rachelarachgirl @gerisues @rpennino @peggyella @christinasuit.

@caklady – wondering if the steroids and getting your numbers down have reduced any symptoms you were experiencing before?

@lisalucier

Hi, @caklady – thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through visiting a rheumatologist and addressing your inflammation.

I'd like to bring into this conversation others who may be interested in reading about and discussing your experience, like @mdmo @ursweetpam @rachelarachgirl @gerisues @rpennino @peggyella @christinasuit.

@caklady – wondering if the steroids and getting your numbers down have reduced any symptoms you were experiencing before?

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I don't know where to start. It has done many things for me. I got diagnosed with AA in 2010. I was given Opiods and over time I started having other problems. I couldn't even take a shower without sitting down. My heart would race and my hair fell out and came back looking like lupus hair. Test for Lupus and RA were negative. I didn't have any eye lashes. I was put on Thyroid medication. My inflammation markers were very high and kept climbing. Then overtime I was diagnosed with leaky gut, anemia and Raynards syndrome. When I got diagnosed with low thyroid my iron was fine. These things happen over time.

The treatment from the Rheumatologist has stopped the progression of the autoimmune symptoms. It had attacked my facets in my lower back and I couldn't even go to the grocery store. The pressure going down my lower back was unbearable. I can just say that I wished I would have went to the Rheumatologist along time ago. I have so many broken blood vessels on my legs and purple toes. I am posting this because I hope that someone can learn from my experience and go get help for their inflammation. I no longer take the strong pain medication. I told my neurologist…don't need to take them anymore!

My Erythrocyte Sedimentation Rate was 56 mm/hr and my he-CPR was a 36.0 mg/L. The last he-CPR test I had was 8.0mg/L. It hadn't been below a 22.0 mg/L in 6 years. I hope this will help someone else not wait so long to get help.

Yes, I live in East TN and a spine surgeon caused me to have arachnoiditis and cauda equina syndrome seven years ago. I have been to many doctors who all covered up the problem. I am prescribed high doses of pain medication, but it has no effect on the sacral/anal pain that has destroyed my life. Are there really any doctors that treat these problems?

@galady

Crazy name, huh? Pain is nothing to laugh at. Where nerves cluster and causes pain that will make me crazy. No cure, just control pain. No doctors specialize, it is relatively rare. Caused by multiple surgeries, multiple injections, which ìve had every one. I'm hardly able to walk, the pain is so great. I'm housebound in a recliner. Have to have help with everything. Wheelchair if I have to leave my chair. Anybody else have this ?

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I don't understand why more research isn't being done for this terrible disease.

Have you Goggled… practical pain management arachnoiditis? It has part 1 and part 2. It was written by Dr. Forest Tennant. This is very informative and has his recommend treatment plan.

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