Arachnoiditis: Where to find a specialist?

Hello, I see this post is almost a year old, but I wanted to respond anyway. I live in Georgia and have a wonderful pain management group. I have had several back surgeries and have a cage, rods and screws. It’s a very long story but I have my life back, due to getting a spinal cord stimulator and the continued support of my pain management team. Have you checked into getting a spinal cord stimulator?

I have been diagnosed with arachnoiditis in my L3-4 region 6 months ago. My symptoms are typical to others I’ve researched since being diagnosed. My hands have started aching and burning in the last couple months. My question is is it possible that my hands issue is related to my arachnoiditis? MRI on my cervical was done and no issues there.

Ask your pain management or PCP to prescribe Indomethacin. It is the only thing that works for me. I had my PCP to review protocols from Dr Forrest Tenant, who is the guru of arachnoiditis. He started the Arachnoiditis Foundation. He is retired now, but his protocols are on the internet and you can purchase some small books He has written from the internet. He treated and studied hundreds of arachnoiditis patients. If you take Indomethacin, it absolutely has to be taken with food.

How! I don’t have the name of this BUT I get most of that from my brain-problems. In 2012. I had an accident and became a TBI person. Ow, I get:

1. Walking problem: I couldn’t walk usually my pain on my legs, rear-ends, feet. Q year ago the doctor gave me photos on my back had problems of the top of 1 rear-end to my bottom back. He got rid from a nerve - a big one. That was a 8-10 time when he “fixed” it. Thankfully, that pain from my rear-ends to the bottom of my feet is GONE! That was a surgery “a cage, rods and screws”.

2. My ability of falling done and now. I need my 4 wheel-leader that my balance on that side is to: “Weakness. Tingle and numbness in feet.”

3. Weird problems of somr TBI accident caused now more driving of my “right eye has lose my vision \”.

4. I exercise a few times a week. I addin my 3-wheeler bike a couple times a week.

Thx
Greg D. @greg1956

@amandajro Are you with Mayo? I live in Texas and my son uses Mayo. Doctor Ruff saved his life. He has Glioblastoma for 7 years and still here. I have been told I have AA. The radiology report said "Mild thickening and clumping of the descending cauda equinal nerve roots at L4 and L5, most suggestive of chronic adhesive arachnoiditis." The reader of the report blew it off and would not tell me either way. My pain doctor said if it is in the report then I have it, though he knows zero about AA. My nuerosurgeon refused to talk to me about it. If I sent my reports to Mayo, would they take a look? I HAVE to know one way or the other and no doctor will talk to me or review my file. It was seen on a CT Myelogram. No mention on MRN. Thanks.

I am reaching out to ask if anyone in this group would be willing to share their symptoms. I have had leg, foot and back pain, stiffness, and some cramps and spasms on and off for about 10 years. Sometimes, just my legs and feet hurt with no backache and sometimes my back hurts and my legs and feet don't and then there are days when everything hurts! It hit me kind of out of the blue about 10 yrs ago and seems to have happened around the time of menopause, coincidence??, maybe... I am 62 and I have been to every doc. Finally, have come to the conclusion that it is indeed my back which has various issues, mostly lower back, including one vertebrae that is fused from birth. I noticed that my medical record mentions possible arachanoditis (sp?) . My spine doctors really don't mention that each time I go but it is a serious disease and I don't understand their lack of bringing this up for discussion. I have constant sore calves, some days better than others. Standing and walking for more than 20 to 30 min. causes stiffness, soreness, and the "I have to sit down for a few minutes feeling." Some days I have weird nerve pains at the top of my feet, side of my toes, ankles, with stiffness, it moves around and sometimes for a moment, it will feel like someone is twisting a random muscle in an area of my leg. I have started taking Gabapentin after many years of fighting having to take this but I am concerned about it and the long term effects but also whatever this is, is disrupting my quality of life as I understand others experience the same in this group - very frustrating to sat the least!. I will say the pain has gotten worse but not drastically over the years and I do not have numbness or tingling. Any thoughts you have or sharing of symptoms would be helpful. Unfortunately, doctors give you 20 minutes per appt. not enough time to discuss the complexity of some of these conditions. Thank you!