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Looking for advice and hope on my arachnoiditis

By September 17, 2009 - 5:46pm
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I would be really grateful for an current info on arachnoiditis. I've had it for 28 years so I know the basics (believe me, oh, how I know!). I had an operation for lumbar stenosis in March. Little improvement. I can still only stand for five to ten minutes before the pain kicks in and within another five minutes my legs have stopped working. Any advice or, dare I say it, hope?

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EmpowHER Guest

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.

July 7, 2015 - 5:13pm
(reply to Anonymous)

Hi I havecbeen trying for over a week to find a PA Doctor who is educated about Arachnoiditis. Please tell me which hospital? Which doctor? This pain is unbearable!

July 26, 2015 - 9:52pm
Expert HERWriter Guide Blogger

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

November 24, 2009 - 6:35pm
EmpowHER Guest
Anonymous (reply to Pat Elliott)

Hi Pat,
Thanks for your interest. I followed up the website advice and found COFWA Circle of Friends with Arachnoiditis. It supplies a daily digest of members emails. It's good to hear how others cope and to know you're not alone. And there's always someone far worse off than you are.
The pain is no better - it never will be but I manage it well and work at remaining happy. I'm having Physio and my physical strength is improving. I can still stand unaided for five minutes without pain kicking in, but I'm getting very nimble in those five minutes!
Thanks agin for your inquiry.

November 25, 2009 - 2:32am
Expert HERWriter Guide Blogger (reply to Anonymous)

Hi Sue - It's good to hear from you again, and I'm glad to learn that you've located an online support group. It makes such a difference to be in contact with others and not feel alone in dealing with a health concern. I bet you could be a great resource to "newbies" and share a lot of helpful information.

I'm sorry to hear you're still in pain, but it sounds like you've made a lot of good progress despite that and definitely get a HUGE round of applause for what you've been able to do. Keep on keeping on, and I hope you'll stay in touch.

Warm regards,

November 25, 2009 - 5:26pm

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.

September 25, 2009 - 6:12am

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.

September 24, 2009 - 8:47am
(reply to Sue Fincham)

May I ask how the medical profession caused your arachnoiditis? Why were you being seen by a medical professional in the first place (with either the procedure or person causing the condition).

The reason for my asking: perhaps the more you share about the cause(s), there may be some information that can be researched, as I'm sure the origin is important.

September 24, 2009 - 12:25pm


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:


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:


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


(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:


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?

September 18, 2009 - 9:05am
EmpowHER Guest
Anonymous (reply to Diane Porter)


Here are further great quality resources which got the potential to be added to your reply which will provide great help to Sue too. Here are the links of these resources:

1. http://healthdocpoint.com/arachnoiditis-causes-symptoms-and-treatment

2. http://psychology.wikia.com/wiki/Arachnoiditis

Hope this helps!!

January 16, 2016 - 6:15am
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