Friday, January 29, 2010

Welcome Bobbi Jo

Please welcome Bobbi Jo Ferge of Wisconsin. Bobbie Joe has failed back surgery and lumbar arachnoiditis. She welcomes your email to

Bobbi Jo says:

"Hi All,
I've recently been diagnost with failed back surgery, scar tissue, and lumbar arachnoiditis. So I've been searching the web for information, forums, and support groups, and I was given this site. I've looked the site over, and you all sound like wonderful people. I'm just sorry that we have to find each other this way.
My jouney with this disease is not as long as some, but I can relate to the frustration, and the lack of knowledge of people to this condition. Going from doctor to doctor, praying for help, and relief from the madding pain. I have gone thru my share, and living in rural northern Wisconsin hasn't helped. I have finally found a good support team of doctors to help me. That is such a relief.
Also like some of you, I have a very small world of interaction with the outside world. I use to have alot of friends, but no more. They slowly faded away for numerious reasons. Now find that my friends are coming from support groups like this, because we understand each other. We know what each other is going thru, and we offer support with no strings attached.
I look forward to getting to know all of you, and to helping in anyway that I can.
Bobbi Jo"
Please welcome Bill Wallace of California. Bill has Arachnoiditis due to trauma. He welcomes your emails at

Bill says:

"Suffered severe ski accident 1/1/09. Lucky I can walk but have significant arachnoiditis with brutal pain numbness and tightness. 2 questions; Does the severity of arachnoiditis change over time? Has anybody in your group rcvd pain relief from a spinal chord stimulator?"

Welcome Ali of Kentucky

Please welcome Ali Nair of Kentucky. Ali has Arachnoiditis. Ali welcomes your email at

Welcome Mary Ann of Washington

Please welcome Mary Ann Levine of Washington. Mary Ann welcomes your email. You may email her at

Mary Ann says: "Just checking in. It is nice to know that others out there do understand this horrible disease."

Daniel from New York

Please welcome Daniel Cocca from New York. Daniel has a diagnosis of Arachnoiditis. He welcomes your email to

Daniel says:

"I was just recently diagnosed with this awful disease, I had spinal fusion surgery performed to L2 - L4 after being struck by a motor vehicle while directing traffic as a police officer. After approx 4.5 years of continued physical therapy I continued to have restless legs in the evening hours and continued to exercise thru the pain. Upon a MRI being performed I received the dreaded news that it appears that I have Arachnoiditis. And my journey begins all over again in the quest for treatment."

Sunday, January 24, 2010

We are running behind

There are many new members that we have not been able to post. We will do our best to get these up in the next week.

Thank you for your patience.

Life With Arachnoiditis

From Carrie

Please welcome Carrie Trompeter of Kansas. Her email address is and she welcomes your email. Carrie has a failed L5-S1 spinal fusion and undiagnosed arachnoiditis.

Carrie says:

"I have intractable pain from multiple mid/low back ESIs, myelograms, discograms, & CT scans/an MRI/a bone scan with dyes over the last two years. I need to find a specialist in the Kansas City, KS or Kansas City, MO metro area since my "pain specialist" does not think i have any problems but pain from failed spinal fusion surgery. Even though every procedure he did on me caused increase in pain and symptoms. Should I seek a Rheumatologist, or a Neurologist for the appropriate tests to find out if I have arachnoiditist? Should I try my family Dr. even though he works with my pain specialist? Any suggestions? Carrie"

From Claudia

Claudia in Florida sent in notes for readers. You can email Claudia at

Claudia says:

"I have been looking for a physician who is actually familiar with arachnoiditis and treats the disease, who would discuss it with me.
I had an MRI early in 2009 because of horrific pain in my back and leg, and the radiologist gave a written diagnosis of Arachnoiditis. Three other physicians (all orthopedic surgeons - all with M.D. degrees) spoke with me about it.
The first did not think it was important (I believe he thought I was just scamming him for drugs) and referred me to a spine specialist.
The "specialist" showed me the film and pointed out the arachnoiditis, and then, because he believed the pain was from a ruptured disc, referred me to his associate for an epidural. I vehemently protested that this pain was nothing like disc pain, however, he and his associate reminded me that they "were the physicians," and insisted that the epidural would help the pain. It did not, of course, and actually exacerbated it.
The only physician I have seen since is my pain doctor. He is kind, caring and understanding (and treats several arachnoiditis patients), and in my once-a-month visits, adjusts my medication to try to keep a little ahead of the excruciating pain. There is no doctor locally that treats arachnoiditis.
My pain has increased over the past couple of years. Often, I can't get out of bed in the morning until my medication begins working. I have the whole array of symptoms, from "shocks," to ice water running up and down my leg and back. My joints ache constantly and my hands grow more and more crippled. Some days and nights I sweat profusely for hours--drenching my hair and body, clothes and bedsheets. A burning tightness in my hip, butt and leg often makes walking difficult. Some days I don't even want to get out of bed, except for the fact that I wake up in pain FROM laying on it!
I asked my best friend, who is a family physician, why there are no doctors who treat this disease. She advised me that doctors do not want to be associated with "hopeless" diseases. She was just being honest with me, not cruel. I have read articles on the internet wherein physicians stated that one is better off with a diagnosis of cancer than with arachnoiditis. Their reasoning? At least with cancer you have a chance of getting better--or dying, and either way, you would be out of pain. Arachnoiditis is a lifetime sentence. That is cruel...but true, as well."