Arachnoiditis: Looking to talk with others

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!

Many topical ointments that works.. CRYODerm roll on.. Amish Origins Deep Penetrating Ointment, Willow Bark Cream.. Magnesium lotion for Small Fiber Neuropathy and AA..

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!

Thank You so much Joan, I am desperate. I am in-touch with Tennant also. I really thought my Dr. would follow his Protocol. My called today left message about the Clindone reaction. May I ask you the Dr's name you will be seeing at Mayo, State? If not it's OK. We are our best Advocates, have to be. I think the Dr. you mentioned in UK last name I think, Smith? I wish I had know about Dr. Antonio Aldrete. I read about him, found out he retired also. Tennant is so kind. I am very disappointed in my Dr.! I realize he not that familiar with AA. I wish good luck and if you feel comfortable letting me know how Mayo appt. went. I'm trying to get Patients together, Advocates to go to the Legislature to bring this Disease to the Public. To the the Doctor's know their surgeries are in question. Why do they keep saying, I can help when it only gets worse! Thank You for listening Joan.

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!

I would not get the neuro spine stimulator unless you are becoming paralyzed. That is just more risky surgery

Please do try to stop having any epidurals. This, as recommended by both Dr. Tennant and Dr. Aldrete, known authorities in this disorder. It can take a while to "show up" because it has to do with the formation of scar tissue wherever the needle went through. Read up all you can on Arachnoiditis. ANY needle into one´s spinal cord or spine is an "insult" that will result in scar formation and ARC. Dr. Aldrete called epidurals the TSUNAMI still to come in terms of this disease. I believe he was writing, or wrote, about it. Look up anything written by Dr. Aldrete and Dr. Tennant. Sorry am a bit abrupt....my dog is on my lap and did not like I was not paying enough attention to her.....Good luck, Fellow Arachniacs.....thinking of all the sufferers everywhere! Love you all....this is a terrible disease CAUSED by medical professionals who don´t always understand the delicate structures in our spines.....