Thursday, September 24, 2009

Welcoming New Members

Michael of Pennsylvania: Michael's father has Arachnoiditis. You may email Michael at Michael says:

"My father was diagnosed with this disease over 20 years ago.

I recently have been encouraging my father to try a holistic approach to fighting this disease. Currently he is hesitant, as there is no information to support this approach. Coming across your website, is exactly what I need.

It is amazing to read your success stories and I look forward to reading more.

If you have any suggestions, please feel free to email me.

Happy healthy days ahead.

Michael Levenson"


Raina Yarroch of Alabama. You may email Raina at Raina says:

"I would like to get in touch with the Doctor that is treating Karen and talk to him. I am a nurse and would like to know the treatment Karen is taking so that I may try it.

Thank you,


Below is the information submitted on Sep-20-2009 12:16 EST

Joan Bernard of Connecticut. You may email Joan at Joan says:

"I have had adhesive arachnoiditis since at least 1990. I was diagnosed with class 3 AA in 1995 and was told that I would be paraplegic but avoided this with acupuncture, diet, vitamin therapy and keeping as active as possible, however I had a full spinal mylelogram, lumbar, thoracic, cervical and brain in 1987. I had a bad epidural in October 2008 that caused me to go into a severe flare which by 3'09 had me paralyzed in lower extremities from hip down and caused non stop severe spasms in legs, back, neck, arms and forehead as well as 10+ pain and headaches. Acupuncture has freed the left side partially but right still paralyzed leaving me bedridden with a large L5/S1 'cyst'"


Sunday, September 13, 2009

Ted, Connie, Stephen

Please welcome our new registrants:

Ted Hochman of New Jersey. Ted has a friend with arachnoiditis. You may email Ted at

Connie Benitou of California. Email Connie would love to be contacted with anything hopeful. Connie says:
"Feeling very afraid, hopeless. Want to know of any meds/treatments, etc. people have found useful. Anyone experienced implantations for Arachnoiditis? Looking for ways to get through the day. Thanks."

Stephen O'Rourke of New South Wales, Australia. Stephen says:
"I was diagnosed with arachnoiditis about three years ago after about thirty years of back problems. When I read the list of possible causes I ticked nearly all the boxes. Oil and acrylic based myleograms, two laminectomies for ruptured discs, a couple of bad falls in my twenties and playing rugby football in my teens. I have had to stop doing pilates because of pain coming from irritated nerves and am unable to walk for long as my feet are numb and stiff in the joints.

I have a good physiotherapist who keeps joints relatively free and have had success with cortesone injections although I now wonder whether they are part of the problem.

I take oxy-contin slow release and short acting, and lyrica and get some relief although it is not really effective as a life situation. I also use prednisolone from time to time to have a 'normal' day but the payback is bad sleep and the desire to overeat.

In November when my last child finishes school I shall go to an ayurvedic centre in Kerala, south India to see what it can offer.

I no longer work for money having spent my working life in theatre, film and television and have a 'life project' in study Asia before the arrival of the Europeans and immediately after.

I am very unfit as exercise always aggravates the pain and am unable to sit for long and write. I am turning into a grumpy old man which is very boring for those around me. I have done quite a lot of psychological work on myself and have some understanding of how I operate.

I was pleased to come across this web page and hope I may learn from others and contribute something my self. I am married with two girls in their thirties and an 18year old son. My wife works internationally in the movie business and is quite supportive of my situation but like most people believes there must be something I 'can do to change things'."

Sunday, September 6, 2009

Anna needs help

Anna Wright wrote in:

"I've been battling non-stop burning, stabbing, shooting pain in my lower spine since March of 2009. I had to go in for a spinal tap on 3/21/09 because the doctors found abnormal white matter on the right side of my brain. They thought I had MS or LUPUS, which it turns out I don't have either.

Since the spinal tap I have been going through non stop intense burning, stabbing, shooting pain in my spine and it shoots down in my legs. I can't sit for a very long time, it's very tender and its worse to sit. I have seen several acupuncturists, chiropractors, neurologists. I have been doing my own research and believe I have this disease.

I would love to know what is my next step. please help me..."

Ann's email address is:

Request from Paula (Maine)

Paula's email address is:

Paula says:

"I was diagnosed with thoracic, idiopathic syringomyelia in 8/08, with two thoracic syrinxes (upper and a long lower one) that during the course of 8 months "grew" together. No one in Maine either knew what the diagnosis was or had so little experience of exposure to it that I had to search in Boston for a knowledgeable group of neurosurgeons...luckily finding a group and doctor at Tufts Medical Center.

Surgery occurred in 6/08 and at that time they "discovered" that I had adhesive arachnoiditis that had literally "banded" itself around the entire upper part of my syrinx. They got to the spine with a laminectomy from T2-6, lysis of adhesions, and then did a duraplasty along the entire length of T2-6 to widen the spinal cord canal, hopefully freeing up the flow (with the removal of the adhesions), and, God willing, over time the syrinx will collapse.

However, I am guardedly optimistic and hope that the adhesive arachnoiditis doesn't glob up my spine with even more scar tissue.

Is there anyone out there with similar history or experience, and can you share your story with me?"