Arachnoiditis: Trying to find a specialist

Hello @ourfather99 and welcome to Mayo Clinic Connect. I see that you have had @rono2410 join you to provide you with some helpful information. Should you be interested in requesting an appointment, you may use this link to get started: http://mayocl.in/1mtmR63

How long have you been experiencing your symptoms? Are you open to traveling to Rochester, MN for an appointment?

Probably not. You might have ankloysing spondlyitis, which I have, in addition to a disk herniation. Both can cause these symptoms. It would have probably showed up on MRI if you have a herniation. But any kind of small injury to the ligaments or disk even if not visible on an MRI can result in inflammation that irritates the nerves and causes these symptoms. Most people probably don't notice or have as specific an awareness of you -- or are as articulate or specific about the flavors of the pain. So most doctors don't really differentiate between "tingling" and "numbness" or "vibrating" and "buzzing/crawling" etc. They just call it sciatica and pain. The thing is, the inflammation you're experiencing could eventually lead to arachnoiditis. So you want to take anti-inflammatories like a good NSAID (Advil crosses the blood brain barrier so that's good) and maybe a corticosteroid (but not injection, just oral) for short term to reduce the inflammation. There are also a lot of herbs and supplements found in studies that can inhibit scar tissue formation and arachnoiditis formation--which are basically the same thing. For inflammatory backpain like anklyosing spondlyitis, which might be something you could have if it persists long-term (more than a few months), you should see a rheumatologist, because 99% of other doctors won't consider it because it's rare (like 1 in 100 cases of back pain with guys, mostly young like you). The thing is, some doctors will argue that until there is erosion in the SI joints you don't have it (some will even say until your spine is fused), but you can still have it without damage visible on an MRI. There's a blood (I think genetic) test for it.

He is, but he still is actively doing Arachnoiditis studies, and will look at anyone’s MRI scans if you send him an email. Dr Tennant is AMAZING

He wasn’t “prescribing too many”, he was just one of the only docs left in town that genuinely cared about his patients, and refused to turn any away. So, it ended up that he was treating some of the most severe cases from all over the country, and of course the most severe cases are going to require the most pain control. Because he wouldn’t turn people who were suffering so much away, like most other doctors nowadays, he got raided and accused of overprescribing… when in reality, he was APPROPRIATELY prescribing pain medication to people with very severe, documented, legitimate pain. It’s the rest of the doctors that are grossly underprescribing, which makes the few who choose to prescribe humanely, and insist on continuing to prescribe their patients with enough pain medication to actually control their pain, and provide some real relief and quality of life. He’s not the villain, the CDC, DEA and pharmaceutical companies are 100% the a$$holes here. All Dr Tennant has ever done is try and help people who are suffering, even now that he’s retired, it’s like he just can’t stop… and he knows that doctors like him are very hard to find, and will keep getting harder, especially the longer that chronic pain patients continue to be unfairly blamed for the opiate crisis. We’ve been made the scapegoat, even though prescribing numbers have gone way down, overdoses iron prescription medicines has gone way down… all the while, overdoses due to illegal fentanyl have just continued to skyrocket, but I guess it’s just easier for them to continue to blame us, even though we're clearly just the unlucky scapegoat, qnd sadly, are overall just way too sick to fight back, and try to change this narrative they've created.

Hi, I am trying to get to 2023/24 current posts on Arachnoiditis help. I am looking for a doctor in Texas who is knowledgeable about current treatments and management. I would appreciate any information on new therapies.
Thank you!

Welcome @wesbee57, There is a newer discussion with current comments from members that you might find helpful:
--- Epidural to Relieve Arachnoiditis Pain: https://connect.mayoclinic.org/discussion/epidural-to-relieve-arachnoiditis-pain/

You can also look through all of the related discussions and comments on Arachnoiditis using the search function of Connect. Here is a search results like for "Arachnoiditis help" if you want to scan through the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=Arachnoiditis%20help

Another resource you might find helpful is the comprehensive file section of the Arachnoiditis & Chronic Meningitis Collaborative Research Network: https://www.acmcrn.org/file-section. They also have a page that lists the doctors specializing in Arachnoiditis in Texas - https://www.acmcrn.org/physicians-1.

If you don't mind my asking, how are you managing the pain now?

I live in Henry county Ga. I go to ROSI (Regenerative ortho spine institute) my husband went to Sports and Spine both in Stockbridge Ga.) I had pulled a muscle in my back while cleaning I went to my urgent care and they hit my sicatic nerve with a needle. This was very painful, I went to my PvP she did xray it showed arthritis , I knew that wasn't the pain. I went to see my husband's sorter, this would show sicatic nerve was pinched and other issues. My back is a railroad accident that has been going on. Ya taken care of others and not me. I had PT for sicatic yes it's better still have to watch certain moves due to it catching and other back issues. I hope this helps

Has anybody in this group had personal experience with Dr. Forest Tenant’s protocols for treating Arachnoiditis?
I tried to get to see him some years ago but learned that he had retired from practice, though not from research and writing after his home and office were raided by the DEA at gunpoint.

They apparently decided that he was over proscribing opioids for his patients and was therefore probably an illicit drug dealer. Well duh he was running a pain clinic that was known worldwide for treating AA.

I learned about his protocols from his many excellent and readable books and articles but have not yet found or convinced any physician to wrk with me on the parts his protocols that require prescription medication and supervision of the side effects of those medications.