I was diagnosed by two doctors off of an MRI of having nerve root clumping. I was told it is Adhesive Arachnoiditis. A third doctor told me I had Adhesive Arachnoiditis from examination and observation. The confirmed diagnosis was in Feb 2014. I can barely walk. I walk 0.3 miles in 30 minutes daily. Anymore than that and my multiple opioids can't even handle the severe pain. I am unable to sit for more than 15 minutes and even there, it increases the pain. I live a miserable life, often wonder if it is worth living. The only modalities of daily living I can do is dressing myself, going to the restroom and the walk which causes greater breakthrough pain.
Why don't doctors make it clear that if they happen to pierce the dura you can get far worse than a bad headache, this is also how you get adhesive arachnoiditis. This awful disease is iatrogenic, caused by the manner or treatment of a doctor. Epidural steroid injections have been one of these to cause arachnoiditis. This is an off label use of the steroids. It is not an FDA approved use injecting into the epidural. The drugs themselves are labeled as not for epidural use, yet I have never been told this. Today they had a live talk on Spine-Health.com on a 'revolutionary procedure' which I missed but I did see the charts and they mention the possibility of puncturing the dura but once again the only risk they have on the chart is a bad headache. When adhesive arachnoiditis is a very likely risk of piercing the dura. This site has a lot of rules to remember which makes it hard to truly communicate with one another. Their are many people who know they have this disease and many that the doctors and radiologists won't diagnose in my opinion and others, even doctors, I had read saying the same thing because it is iatrogenic. Think of the blue wall in police groups. I believe it is a big white wall that doctors don't want to blame others and testify against others.
Well I have done enough talking, I am trying to find out if there are any support groups for this incurable disease. Does anyone know of support groups specifically for Adhesive Arachnoiditis?