Arachnoiditis: Looking to talk with others

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.

Look for his websites meantime.

Hi @donfeld -- Welcome to Connect. I'm glad that you have already met some members in this discussion where you will find some great support from others sharing your symptoms. I think Dr. Tennant just retired from his practice and devoting his time to research now according to the Pain News Network.

Former Tennant Patients Get New Doctor -- September 17, 2018
-- https://www.painnewsnetwork.org/stories/2018/9/17/former-tennant-patients-get-new-doctor
16 Key Findings about Arachnoiditis -- June 07, 2019 By Forest Tennant, MD, PNN Columnist
-- https://www.painnewsnetwork.org/stories/2019/6/7/16-key-findings-about-arachnoiditis

Here's his website - Pain Management – Forest Tennant, M.D. Dr. P.H.
-- http://foresttennant.com/

Are you working with the Mayo Clinic Pain Rehabilitation Center?
-- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview/core-components

Joan, thank you for getting back to me as I'm so glad to hear that. I read it on somebody from the Mayo correspondence I thought that said that he lost his license or recognition from the American Medical Association. Anyway, it's great to hear that and looking forward to talking to you again. Do you know anybody who has tried pemf mats for AA?

Do you know how to get its handbook from Doctor Tennant? I can't seem to find them but I am using some of his formulas and ideas and I'm feeling a lot better. Just diagnosed with it about 4 weeks ago. Mayo is not giving me any help and all they recommend is a stimulator and I'm only on stage one. What doctor tells me it's not going to get that bed but it doesn't tell me how to prevent it. You know of insurance companies pay for AA treatment as I'm getting some feedback from the Mayo that having problem with the provider? Thanks Don Feldman

John, I just found out that the DEA closed them down and had to resign from his practice because I think he was providing too many opioids at that time for AA patients. Went through PRC in 2016 and it was fine I got off of opioids and try to forget about pain and then the pain got worse and you can't forget about paying that you can't get rid of or forget when it gets to the level we're talkin about. The kind of debunk surgery and doctors which I kind of agree in some way but then sometimes you just can't forget about pain as I'm a person who had throat cancer and extreme radiation damage to my head that I expect me to this day and it will not come down in fact it's getting worse. Thanks Donald Feldman

Hi Don @donfeld -- I found 2 different PDFs of his handbook you can download.

ARACHNOIDITIS HANDBOOK FOR RELIEF AND RECOVERY By Forest Tennant M.D., Dr. P.H.
-- http://arachnoiditishope.com/pages/wp-content/uploads/2016/11/arachnoiditis-handbook.pdf

ARACHNOIDITIS BASIC HANDBOOK FOR PRACTITIONERS, PATIENTS & FAMILIES
Written by Forest Tennant M.D., Dr. P.H. with assistance from Ingrid Hollis and Lynn Ashcraft
-- http://foresttennant.com/foresttennant/wp-content/uploads/2018/06/AA-Basic-Handbook.pdf?v=June2018

Thanks John, I will be glad to get into it and see if I can follow it as it's hard not to eat pasta or bread which is my favorite. Any suggestions I would appreciate it. Do you get any help from the Mayo Clinic from any particular doctor or is anybody coordinating York are there because that is my main problem as I'm dealing with now. There's no preventive care program and I sent stuff on Tennant and they kind of discounted it or never heard of him. I don't understand this why there's no understanding of our condition at the Mayo Clinic hey, and to come up with some kind of aggressive preventive care. Thinking of moving to Jacksonville to get the proper primary doctor in care that I would need ongoing. What do you think?

Hi Don, I've had some pretty awful pain from polymyalgia rheumatica which my Mayo rheumatologist and primary care docs have been great in helping me keep in in check. I've never faced the pain of arachnoiditis so I don't think I know enough about it other than how to do research on what folks have been using for treatments. I was pretty bummed out after being diagnosed with idiopathic small fiber neuropathy and finding out from my Mayo neurologist that there are no treatments, drugs or topicals that help with the numbness that I have. I only have numbness but was faced with it continually progressing which is why I joined Connect and started searching for something to help me and learning what helps other members. I think the best advice I can give is to learn as much as you can about your condition and arm yourself with better questions when meeting with your doctors and specialists - which will hopeful help them come up with a better treatment plan.

I'm tagging @jenniferhunter who has a lot of experience and knowledge on spine issues and hoping that she can share her thoughts with you.

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!