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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Mar 11 12:58pm | Replies (458)Comment receiving replies
Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through similar situations as you are currently facing. While we wait for the other members already in this discussion, I would like to also invite @thelmalouise76, @ledgerwp, @jlfisher56, @lconroy, @annmaria, and @galady to this discussion to share their experiences with you on living with arachnoiditis.
@rachelarachgirl, if you are comfortable sharing more, you mentioned that your physician at Mayo Clinic helped with your diagnosis and recognized your pain, was there any recommendation on controlling your pain or what you can do moving forward?
Replies to "Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through..."
My neurosurgeon said the most plausible explanation for my symptoms is arachnoiditis or some other neurological disease. I have had too many invasive spinal procedures to count with complications and four spine surgeries. I currently have a pain pump that is not providing relief. How do I find a specialist who can diagnose my condition? I have thought I had AA for years since the symptoms explain everything that I experience. I have recent imaging that I could send to a doctor. I am desperate and in terrible pain.
Has anybody tried the stimulator as I have increasing systoms of Arachnoititis that is getting out of control. I'm experiencing extreme pain in bed every 3 hours it wakes me up and I have to go out and walk around and lot of times it feels like I need a bowel movement. Is anybody experiencing that?
I also have adhesive arachnoiditis. I had my L4 and L5 fused in May of 2018 then the following Nov. I have my S-I joint fused because the surgeon said I needed that done because I was starting to have bad pain in the sciatica. I had a stimulator in my back for over a year and it did no good at all. For about the last year I’ve had increasing pain in my right side lower back, right side S-I and down my right thigh down to my knee. My feet are numb. I went to a doctor because another doctor said I had neuropathy . The new doctor I went to got my MRI from 2018 and it showed I have arachnoiditis. If it would have been caught back when I was diagnosed with it, something could have been for it. It is now all through my lower body on both sides. I can’t walk without a walker. And some days I can’t even do that. If anyone can give me any advice please do.
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Has anybody out there tried pemf treatment? If so let me know because it sounds like something that might work cuz I have a neighbor that swears by it and has changed his life with pain and sleep. It increases the blood flow which is what helps the nerves and your pain as well as sleep. Before I purchase it I just want to see if anybody out there has any results or tried it. Thanks, Don