Looking for advice and hope on my arachnoiditis

July 7, 2015
I wrote to COFWA Circle of Friends with Arachnoiditis and applied to be a member. I filled out their application form. I haven't had any reply. I suffer with horrible arachnoiditis having been diagnosed by a neurologist at a major University Medical Center in Philadelphia, PA USA. It seems to me most of this data
was a flurry of activity in around 2008 to 2009. What has happened since then? I only recently found out what that diagnosis really means! The neurologist told me to take elavil, period! The tinnitus has gotten really loud (bad) lately. I spent so much money on co-pays and time and effort to see them and get hearing tests and they say it's negative. It's a personal hell.

Hi Sue - I'm following up to see if you were able to find any helpful information when you researched the websites that Diane provided. And, how are you feeling these days? Are you still in pain, or has there been any improvement? Look forward to hearing from you. Thanks, Pat

I had a myelogram to investigate back pain after I had my daughter, thirty years ago. (Unbeknown to me, the dye most likely used was not licensed for this use as it is highly corrosive.) I had a laminectomy, discs removed. I still had pain so was given a second myelogram. This second myelogram showed up mild arachnoiditis. Having never heard the word I started some investigation. I realised their was a group action against the drug company and I only had three weeks to join it.
I concluded that a protracted legal suit would take up a lot of emotional energy that would be put to better use in coping with the pain and increasing disability. I challenged the Consultant, Professor Pickard, but he tried to bluff his way, saying he thought the problem would heal of its own accord in a couple of years. I realised further contact with him was pointless.
I began the long journey of trying to find adequate pain relief.

Thanks for the info. I'll check it out.
As for pain relief I'm on Lyrica, Lodine, Codeine Phosphate and Butrans Morphine patches. All of that and it hardly touches the pain. Received wisdom is that the pain is worse than cancer.
Hypnosis helped a lot. Acupuncture was good for a brief while.
Basically the medical profession, who caused the problem, have no idea how to deal with it.
Will check out the website you've given me. Thanks again.

Sue,

I'm sorry that you've dealt with such pain for so many years. At the risk of finding you information you already know, here are some current sources about arachnoiditis.

This page from spineuniverse.com discusses pain management and electric nerve stimulation:

http://www.spineuniverse.com/displayarticle.php/article180.html

Are you aware of the Circle of Friends With Arachnoiditis (COFWA)? They work for awareness, education and progress in treatment. Here is their home page:

http://www.cofwa.org/

And down the side there is a link to a Yahoo! Groups listing for COFWA where members write to one another:

http://health.groups.yahoo.com/group/cofwa/

(Click on the blue "Join This Group!" box in the upper right)

There is a book called Arachnoiditis: The Silent Epidemic written by J. Antonio Aldrete, M.D., M.S. (a doctor in Birmingham) that you might be interested in checking out. He sells it himself. This page discusses the book and its table of contents:

http://www.arachnoiditis.com/book.asp

As you know, there is no "cure" for arachnoiditis, so treatment tends to concentrate on pain and symptom management. Do you feel that your pain is being properly addressed? Has physical therapy helped you at all?