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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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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