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Sep 25, 2019 · Arachnoiditis 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 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 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 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 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. 😥👵🏻

Sep 22, 2019 · Arachnoiditis in Spine Health

Yay John. You did most of my work for me. There are a couple of other links too. If you google his name they come up.

Don, As far as I knew he decided to retire (is in his late 70’s) fed up with DEA interference. Yes. He prescribed opiods AS APPROPRIATELY as he saw fit but his websites show other forms of pain relief. The pain can become excruciating every time nerves are pulled or you do heavy exercise or get overtired. I THINK golf not recommendable. (Sorry!).

I was diagnosed in 2010 after at least 20 years of difficulties, and my goal was prevention also like Don.

As for insurance, Don, see if doc can code as Meningitis because thats what iARC and AA are, in principle. Have never had a problem even with Medicare. The arachnoid is one of the meninges. First stages are ARC (arachnoiditis) and once the nerves get stuck “like cooked spaguetti” in the spinal cord that’s when it becomes Adhesive Arachnoiditis. Make sure you get a GOOD MRI with contrast for diagnosis.

Am finishing Pain Rehabilitation Program on Friday and must confess to being pleased. The keys are MODERATION in all and NOT TO TALK ABOUT IT. Their “tools” explain it all. Brain must be retrained.

Hurts me to hear of so many who are suffering with this horrible condition—listed in the National Organization of Rare Disorders. (NORD). Dr Tennant’s article is there now. But when I get home next week will have to withdraw to give PRC a good chance to work. Thinking or talking about pain are considered Pain Behaviors. To be prevented at all costs.

Dont give up, Don. Read all there is to know about ARC and AA. THERE are even some good videos out there. The Burton Report is important also. The links from John also good but I would go directly to Dr Tennant’s websites. Practical Pain Management and Pain Network have some of his articles compiled by third party. His own are under his name. His most recent Caregiver Handbook is from this year. Highly recommendable to print and study carefully. Good luck!

Sep 22, 2019 · Arachnoiditis in Spine Health

Look for his websites meantime.

Sep 22, 2019 · Arachnoiditis in Spine Health

Don. Will write longer in a few minutes but I do want to clarify Dr Tennant has not lost his license as far as I know. Will explain more in private. He is the most caring and qualified. Is constantly doing research right now. Promise to continue.