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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 2 days ago | Replies (386)

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@ursweetpam

I have it in my back too...from epidurals and a few spinal. My Dr didn't find mine until I was in surgery. The bad thing about it is that it can cause all kinds of problems with nerves. Mine were glued together and frayed. Operating on it does no good because it just comes back even worse than before. What has your surgeon recommended for you as a treatment ?

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Replies to "I have it in my back too...from epidurals and a few spinal. My Dr didn't find..."

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I
have had a lot of pain in my back, fatigue, bowels and bladder dysfunction. The pain has gotten worse, got several steroids injections, for the past 3 years the I have had pain in my butts, legs, feet. The tingling, burning and twisting in my feet are unbearable at times. Thanks for listening.Chantaburi,

Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012. An ABSOLUTE idiotic Dr was SUPPOSED to inject a combination of cortisone/dye into a herniated disc on my spine. Well, instead, he put both of the medications INTO my SPINAL CORD with NO WAY of removing it! Dye is poison to nerves, and I had an IMMEDIATE painful reaction so bad, my family removed me from North Memorial Hospital to Mayo Clinic IMMEDIATELY. Where they compared the MRI from North Memorial to the one they took after the procedure. And my ALL OF MY NERVES were ALREADY in a "sticky, hairball at the bottom of my spinal cord sac". That's how my specialist explains it in layman's terms.
He also says that if anyone asks how to describe the pain, he told me to tell them "it's worse than someone with stage 4 bone cancer".
I would just like to open a line of communication with ANYONE ELSE who understands what we're going through. I've felt so alone, depressed, misunderstood and have NEVER spoke to, let alone met ANYONE else with Arachnoiditis. PLEASE feel free to respond with your story, and forward mine to anyone else you think might understand me. And I'd love to talk to ANYONE who is the partner, so I can try and understand how THEY FEEL. I think that's JUST as important if you are in a relationship, (or want to be) and I REALLY want to hear it from their point of view. Then I can explain it to someone I might get serious with, so they'll know EXACTLY what to expect.
Thank you for reading my story. I look forward to hearing from you or anyone ELSE!
Rachel

Please be very very careful what you do next. I have Adhesive Arachnoiditis, scar tissue stuck to nerves, pain can be unbearable. More done spine worse it can become. May I suggest reading, Practical Pain Management, PPM. Doctor Forest Tennant, Arachnoiditis Foundation. There are many sites to research. The Burton Report, Arachnoiditis. May I also suggest researching as much as you finding a Pain Management/Anesthesiologist. Good luck to you