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Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years…and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready….until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Please pursue the Disability issue. I am almost sure I saw something online about it now being approved for Disability. May need an attorney, and I´ve talked to a couple already. I am too late myself since I stopped working several years ago because of the pain, etc. Don´t give up on Disability. Online research is your best tool.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Yes, indeed, the Burton Report (found online) is excellent…..There are several Facebook groups but I don´t deal with Facebook…takes too much time. There are also several blogs, but after a while I was getting a little depressed reading. Mayo Connect is different. I do believe totally in water therapy as the best way to keep leg muscles supple and working hard, but in a true Therapy Pool of around 94 degree water. The one I´ve used and loved is with Sarasota Memorial Hospital…can´t manage it right now because of the distance from home. PT can be risky, they don´t always know what to do about Arachnoiditis needs….most of the times they are amazed to hear about this condition…depending on their level of interest, I do bring them reading material to get started on learning about it. Did the same with my GP, and she now has included AA in my Patient Portal records, after several years of bringing her Dr. TEnnant´s materials. So am very grateful to her for being receptive to his protocols. While Dr. Tennant is officially retired (no more patients), his Foundation continues to update several websites for newest research protocols and if I email him he does reply and is very kind to do so. Latest protocol just came out a month ago. Has loads of practical information on line. Everyone should go online and look at his recommendations…. Most physicians who "see" ARC are actually radiologists or even anesthesiologists. Have a good weekend and week……my best! Joan

Sep 25, 2019 · Arachnoiditis: Looking to talk with others in Spine Health

Don. I agree about the getting off opiods. But do you also remember Version A Version B. And VErsion C? We can never go back to Version A. Referring now to golfing. Assume that was in your Version A?
I want to find way for private messages. John. Can you help me?

Going into class now. Consider me one of your Support Persons. If you wish. And in Private.

I hate to hear of a PRC graduate lost in the stresses of life. As a fellow Arachniac I do understand you. Best to you today. Closing phone now

Sep 24, 2019 · Arachnoiditis: Looking to talk with others in Spine Health

Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By an eminence in ARACHNOIDITIS. Am currently at Mayo JAX for amazing program of Pain Rehabilitation. This program is also available in other Mayo locations. But it is very intense and am in my final week so have no more energy right now. We get a lot of homework in the way of Planning for how we will carry out the principles and tools learned once we get home.

Take care all. It’s a long learning process. Keep the faith.
Joan

Sep 24, 2019 · Arachnoiditis: Looking to talk with others in Spine Health

Please be patient. He has RETIRED but keeps a very small staff to help with his THREE websites and RESEARCH. In my long experience he eventually gets back to you. However I have been a patient of his office since 2017 and he has still been responding although it can take several weeks. This disease has thousands of distressed patients in the US and many more around the world. Please please read about the disease. The only treatment is for PAIN and we are in a very fragile situation in terms of pain meds.

I just came across a relatively new website from the NIH (National Institute of Health.) which lists Arachnoiditis as a Rare Disease and excellent info on symptoms and treatment. But we still suffer from a lack of medical personnel to atten to this. Let’s hope that medical schools finally teach more on “rare diseases” — of which there are hundreds

By the way, you might like to know ARC and AA HAs now been recognized by the SSA as a reason for Disability. I think this happened only this year.

I am still in Jacksonville and having tough time responding to all. Please forgive. I highly recommend the Mayo Pain Rehabilitation Center. The concept is to learn COPING STRATEGIES with intense exercise, occupational therapy and even biofeedback. ANYONE with conditions causing PAIN should consider this Mayo program. Am a total convert.
Soft hug to all, Joan

Sep 23, 2019 · Arachnoiditis: Looking to talk with others in Spine Health

What part of Mayo did it go to and which of Clinics (name?). When I have appt at Spine Center in JAX will see how they handle it. Chief in Neurology knows I will be asking for suggestions when I come in to Spine Center. Thank you.

Sep 22, 2019 · Arachnoiditis: Looking to talk with others in Spine Health

My message was so long that I see new posts came in.

I concur with what John says. Learn learn learn. And go into NORD’s website

Over the many years I had to educate my own wonderful GP who finally agreed to put it in my records. She had been coding it as Cauda Equina Syndrome, another ‘conventional’ coding. That refers to the bottom of the spinal cord

I will be seeing the Mayo Jax Spine Center in October and plan to bring up AA. will let you know reaction. AA has different origins and in 70’s one of the products that caused it was taken off the market. Since then docs dont study it (became rare). But any trauma to the back causes it including pain injections to spine. Because it DEVELOPS as scar tissue inside the spinal cord over MANY years most people die of other causes by the time horrendous burning pain starts. . Another excellent now RETIRED doc was Dr Antonio Aldrete who diagnosed me first. Used to be our guru and think he also trained Dr Tennant. Not sure. But he was first to write extensively on the subject.

Once again. Good luck and keep reading. 😥👵🏻