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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Apr 16 10:18am | Replies (386)Comment receiving replies
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
Replies to "Please be patient. He has RETIRED but keeps a very small staff to help with his..."
Joan, I have looked real hard on PEMF therpy and you will find it real intetesting. Found some great websites and lot of documentation as well as people that I know who are using it and find it unbelievable regarding pain and sleeping as they increased blood flow which is crucial to what we need. I urge you to check it out as it's out of the box and that's why you'll never hear it from any doctor. Look up the Bemer and I found with a 45 day guranteed that you can't lose for only $900
Joan, my road to AA started in 2008, never really had any care or recognized. May I ask when you were told you have AA? What is ARC? I am not allowed to have any exercise causes so much pain. After Fusion 2016 Rehab. Kessler Institute, Steve Reeves, Actor rehabbed there. Great place. They were very careful with me knowing I have AA. No real exercise, but they did things to my body hat helped so much. No added pain. I am a member of NIH. Medical Schools, courses in AA!! Neurosurgeons MUST inform Patients who are having spine surgeries, epidurals and more of the dangers of AA. Legislate a bill that Patients and Doctors must sign of the life changing effects of Spine surgery and anything else that deals with the spine. The Patient than can research, seek anything that can help learn about AA. and make their decision. I would NOT have had the surgery but thats me.
Being this way, My God, Living like this was not MY Choice, Was not born this way, a car accident, no. I hear cars going by early morning, some going to "work" sometimes I cry. Adding PTSD. They don't go well together.
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Joan, I did it once and it was helpful to a point that a year later my pain got lot worse a fact with three operations later I couldn't forget about the pain which is what they want me to do. I think the best part of it is learning to do the exercises in and keep exercising which really helps the body. Had problems with the doctor who runs it as he was very informative but had some other issues which I didn't care for. I'm not discouraging you from doing it it's just that when the pain gets to a point but you just can't forget about it which is the concept it doesn't work for me. Have severe radiation damage in my head and neck and shoulders as well as losing my teeth from radiation which is something you really can't forget about with the pain I'm going through there. I was taught by them to try and forget about it but it's getting worse and I feel going back to BRC is not going to help me at this point. As I mentioned I sent dr. Tenants handbook the doctors at Mayo maybe there's something that they can start working on if it helps so many people and I hope they keep an open mind. Kind regards.