Any Adhesive Arachnoiditis members here?

Thank you for your comments Jeanne! And for your good wishes
My AA is twenty years old lol and getting worse. No pain free days.
I agree with you that treatments for AA are scarce and just for this or that symptom.
I am having an IM steroid injection today for sever sciatic pain in both sides. This is just quick fix
Not sure what is next
I also have scoliosis and rheumatoid arthritis. Doctors blame it to all
Will post my progress after today’s injection

Yes my dioctior saidi that my nerves are all “ clumped up” but from there to achieve relief lthere is a long way. Getting nerve blocks or epidurals depending where the worst pain is.

I'm very sorry to hear about your husband and hope he finds more relief very soon. I can relate because I've had terrible pain and went undiagnosed for Tarlov cysts for 15 years and at 18 years I have just been diagnosed with arachnoiditis. I think the doctor you're referring to is Dr. Tennant. He is still very active in the arachnoiditis community and continues his research and education. He is the best you're going to find. Feel free to send an email to the address at the bottom of just about every page on his website, http://www.arachnoiditishope.com and http://www.intractablepain.com. They are very helpful. If your husband is not currently seeing a rheumatologist then you need to add one. Take the surveys that are recommended on Dr. Tennant's websites along with his recommended starting medical protocol, lab test, etc. and any other info. you think might be helpful. Ask the rheumatologist right away whether he/she is willing to work with you. If not, move on to the next doctor. Don't waste your time and money. You will also so need to do the same with a pain management or interventional pain management provider. You can read my other posts if you like. I hope you and your husband find relief! Take care!

I’m sorry, it what is PCP

PCP is your Primary Care Provide.

I am 71. March of 2021 I became paraplegic from the chest down due to Malignant Adhesive Arachnoiditis. I was just days away from losing the use of my arms but surgery saved them for now. I lost the use of my legs and. Bowels in just weeks and I create additional scar tissue very quickly. Nobody has an answer for treatment thus far. Now the pain in my arms has started. Then pressure in the brain caused me to need a VP shunt. Not sure what to do going forward. I am a Viet Nam Veteran so the VA is helping plus I have good insurance and I believe good doctors. But nobody has an answer. Just reaching out…

I was just diagnosed with AA. I'M 71 Male and had spine surgery that really set it off. Loosing left leg control and bladder functions, which previous to surgery were fine. Any luck finding physicians at Mayo with expertise? Best wishes.

I’m writing hoping to connect with others who have adhesive arachnoiditis. I’m caregiver to my 83 year old mother who has AA. She was diagnosed recently after several MRI’s & many other tests while in the hospital for 10 days. She’s mainly struggling with complete urinary & fecal incontinence, symptoms of peripheral neuropathy, gait abnormality, unexplained weight loss & generalized weakness. She already had an intrathecal pump for pain management of another condition before the diagnosis. We live near Nashville, TN & are having a hard time finding care from a neurologist who has experience with or even knows much about this condition. I will gladly drive her anywhere necessary if anyone has recommendations for a doctor or treatment options that could improve her quality of life. We are reading Dr Forest Tennant’s books trying to learn more about this. Thanks for any help & suggestions.

Hello @lorabuntin, Welcome to Connect. I know it has to be difficult for you as the caregiver and not knowing how to help. It's good that you are advocating for your mother and learning as much as you can about her condition and what might help.

Did you see the post by @qball2019 above that mentions the sites for information on the condition? Here's the link to the post - https://connect.mayoclinic.org/comment/610431/

Thank you for the post link & your quick response. Is there a way to connect with a neurologist at Mayo Clinic that treats adhesive arachnoiditis for advice or consultation?