Arachnoiditis: Trying to find a specialist

Hello @caklady -- Thank you for the private message. I wasn't sure if you meant to post it or send it to me. It sounds like you have found something that helps with your pain that doesn't include pain medication? There was someone earlier that went to see a Dr. Tennant and was helped. I had posted a little information about him earlier.

I did a search and found the following article that mentions Dr. Forrest Tennant who talks about a new treatment for arachnoiditis:
New Treatment Gives Hope to Arachnoiditis Patients:
— https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

Then I did a further search on Google Scholar (https://scholar.google.com/) using "Dr. Forest Tennant arachnoiditis treatment" and came up with more articles. Here is the link for the search results:
— https://scholar.google.com/scholar?hl=en&as_sdt=0,24&q=Dr.+Forest+Tennant+arachnoiditis+treatment

Please keep asking questions and advocating for yourself. You are not alone.

Hoping you get some relief for your pain soon.

John

Thank you! I am on a lot of Dr.Tennant plan. It wasn’t till they started treating me for Lupus that I got any relief. I truely believe that’s it caused all my inflammation. After all isn’t that what Arachnoiditis is? Inflammation of the arachnoid. By the time they found mine it was already Adhesive Arachnoiditis. Pain medication did not work for me. I started declining strong opioids. I felt like they had changed my brain chemistry and I no longer look forward to things or had any happiness. The medication I take for lupus has changed my life for the better. I think people Arachnoiditis can’t find doctors because of the scrutiny on writing prescriptions for opioids in the US. Steroids and lupus medication along with LDN has helped me more than any opioids. When I first was diagnosed with AA The only treatment was opioids. When I had to go to the emergency room due to excruciating pain from electrical shocks from just breathing they would give me a shot of steroids and anti-inflammatories and it was a miracle. I was on two different opioids during this time and they never touched the excruciating pain I had from uncontrollable electrical spasms from any movement in my body. When I went to see my rheumatologist that was the first thing I told her that medicine they gave me in the emergency room worked better than any opioids. When I told her I do not want any opioids she was so much more open to helping me with my plan to get relief. I guess I was lucky since I never got addicted to any of my pain medications. I guess I got sick and tired of being sick and tired and got off my behind and did something about it.

Forest Tenant is a great man, sharing his knowledge with those of us who deal with horrific pain and a total lack of response/treatment by the medical establishment. I just copied his "Arachnoiditis Handbook For Survival" . And to think that in 1975, when I had my first spinal surgery, dr. Tenant was opening his clinic...about 40 miles away from me! How different my life would have been with proper care. So it goes.

I realize this has been posted a long time ago but trying to find out if you found relief?

Hello @cj1010 -- welcome to Connect. I'm tagging @caklady to see if she is able to share what has given her some relief.

John

Thank you so much!

Sharing IS Caring. Dr Ron Rubenzer. Your well-being is my commitment

Hello @meatmouth1, Welcome to Connect. I don't have arachnoiditis but there is an active discussion on Connect that you might want to post any questions you have so that you have more visibility:

Groups > Brain & Nervous System > I am desperate to find a dr who treats arachnoiditis.
-- https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I'm tagging our moderator Kanaaz @kanaazpereira to see if she is able to move your post to the above discussion so members with arachnoiditis will see it.
@meatmouth1 are you able to share a little more about your symptoms and any treatments you've found that help?

John

Anyone familiar with Arachnoiditis?

Hi @meatmouth1,

You may notice that I moved your discussion and combined it with this existing discussion on Arachnoiditis because, as @johnbishop mentioned, it would be beneficial for you to be introduced to the many members who have discussed this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.