1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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haggyrae | @haggyrae | Sep 22, 2019
In reply to @johnbishop "Hi Don, I've had some pretty awful pain from polymyalgia rheumatica which my Mayo rheumatologist and..." + (show)
@johnbishop

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.

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

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1 reply
joanmahon | @joanmahon | Sep 22, 2019
In reply to @joanmahon "Yay John. You did most of my work for me. There are a couple of other..." + (show)
@joanmahon

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!

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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. 😥👵🏻

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 22, 2019
In reply to @haggyrae "Many topical ointments that works.. CRYODerm roll on.. Amish Origins Deep Penetrating Ointment, Willow Bark Cream....." + (show)
@haggyrae

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

Jump to this post

They may work for pain but I am one of the 20% or so of people with Neuopathy that have no associated pain but only have numbness. I have tried more of them including those with magnesium and found no relief from the numbness. 🙂

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Donald | @donfeld | Sep 22, 2019
In reply to @joanmahon "Yay John. You did most of my work for me. There are a couple of other..." + (show)
@joanmahon

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!

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Joan, as far as golf goes, it's part of my life as I live on a golf course I've been playing over 30 years and I'm quite good at it. Now that I finally been diagnosed with a a and the doctors I saw at the mail nobody even said anything about me stop playing. When I play I feel good and I don't have the pain that I would expect in fact I'm only on tramadol / APAP once a day. I live in Lakeland Florida where the care he is not the best impact my primary doctor knows nothing about my condition and has a problem giving me drama doll which which I just mentioned which is perfectly all right cuz it's under an opioid classification and he has trouble giving it to me for some reason and in fact he wants to drop me as a primary doctor. Running Scared with this opioid crisis.
After three years of telling my surgeons at the Mayo who operated in 2015 with the fusion, 20 18 with a herniated disc bad went too far and cause a tremendous spinal leak where they had to operate on me three times in a matter of six weeks or maybe 8 weeks and then in 2019 to repair what happened in 2018 and all during that time I was complaining about another pain that I was getting in my lower extremities and my hips and now we know is AA. All during that time nobody ordered a pelvic MRI with contrast and I finally got it done about a month ago with the help of me and my neurologist Doctor rozen who helped coordinate my MRIS and Bone scans. Learn that I had it for reading the Radiology report and nobody ever said down with me and explain to me what I have and what my prognosis would be and what my treatment would be or whatever. Since I'm not getting the care in Lakeland Florida I was thinking of moving closer to the Mayo and Jacksonville so I can get somebody to coordinate my care as well as my Pain as I was told that unless I live near the hospital I cannot have anything like that as far as Extended Care along with medication or even an opioid. Very frustrated with the Mayo because I don't understand why they don't enough knowledge about our condition. The only suggestion I got from the surgeon was a stimulator and of course I wasn't ready to do that until I did further investigation and now that I've learned from Doctor Tennant that you don't want a stimulator until you go to a higher stage of pain. We all know that the spinal leak cause this and I'm just hoping that I get some consideration of all like what I've been through as I've been a patient of this hospital for over 25 years and now I really need some care and I'm just waiting right now for some answers.
As far as PRC in 2016 it was valuable but after I left there I develop additional pain and of course my radiation damage in my head which I'm being treated by this neurologist is getting worse and of course now with AA it's a whole other story as we got to work on preventing are condition from getting worse as I know I'm not at adhesion point. As patients who have this condition should work together to pressure the Mayo Clinic from some ignorance about our condition and I know their hands are tied but they sure are caught in a narrow conclusion and in fact I sent tenants information to two doctors one who discounted it as phony Medical Care and another one thought it was real interesting doctor hurdle who's the pain doctor the best at the Mayo. I am walking everyday about 2 mi and riding a bike about four miles and keeping very active as well as taking prednisone but I have a problem cuz I love Italian food and some bread. Thanks for getting back to me and let's keep in touch and let me know how you make out in October cuz I'm going up there October 14th for Botox injections and my shoulders through the radiation damage. The problem is I have to get injections for my spasms in my neck from the radiation damage and I can't do both on the same week so require another three and a half hour trip each way and they're the only ones that can give me this kind of treatment. Now I'm really caught in a bind and I'm really seriously thinking about moving to Jacksonville. What's your thoughts and thanks for all your help as I got the handbook and thank you John.

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Donald | @donfeld | Sep 22, 2019
In reply to @kimspr3 "Thank You so much Joan, I am desperate. I am in-touch with Tennant also. I really..." + (show)
@kimspr3

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.

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Kim, I am just as frustrated as you are as I had a difficult time diagnosing my condition as I had to do it alone cuz I had nobody to coordinate me and now that I know about it these doctors up there don't know how to deal with it and the only recommendations I'm getting is a stimulator implant which I'm at stage one which is not recommended by dr. Tennant. We should all get together and demand something or conference about our condition and see what they're going to do about it because this is the hospital that supposed to be on the edge of research and development and now that I know that oversees they're dealing with it but accepting this country there's no funding for research to help us with our suffering. All we know is that it sounds like if you got terminal cancer you got a better chance than with this. What doctors have you seen as I seem Dr dorsher and dr. Hurdle and my neurologist there Doctor rozen gave me the most assistance but he's not a back doctor and yet he knew more about it and help me coordinate my care better than anyone.

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1 reply
gerisues | @gerisues | Sep 22, 2019
In reply to @joanmahon "Yay John. You did most of my work for me. There are a couple of other..." + (show)
@joanmahon

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!

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Hello,
The insurance codes I use for reimbursement are Icd 10 is G03.9, its 9 is 322.9. Hope this helps. Good luck

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Donald | @donfeld | Sep 22, 2019

Is that what you use at the Mayo? Thanks, Don

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1 reply
arannek72 | @arannek72 | Sep 22, 2019

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

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1 reply
Donald | @donfeld | Sep 22, 2019
In reply to @arannek72 "I would not get the neuro spine stimulator unless you are becoming paralyzed. That is just..." + (show)
@arannek72

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

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Thank you so much as I know that answer but I just want some reassurance because all they want to do is give me a stimulator at the Mayo Clinic and no other thoughts or ideas. I just sent the tenant handbook to four doctors asked him to review and let's talk about it and see at least this is helping some people and with some kind of guidelines which the Mayo is not providing

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1 reply
Donald | @donfeld | Sep 22, 2019
In reply to @joanmahon "Please do try to stop having any epidurals. This, as recommended by both Dr. Tennant and..." + (show)
@joanmahon

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.....

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Joan, I just sent tenants hand book to for doctors at the Mayo Clinic ask him to please read it for what least we have some guidelines for our patients are online connect. I'm curious of what they're going to say or do about it but at least they got it now. Let me know what you think and I wish you the best as well as thank you for all your help. Dawn

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