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msaliceinpain (@msaliceinpain)

Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Nov 14 8:43am | Replies (267)

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@colleenyoung

Hi @Tbato622
Let me start by welcoming you to Connect. I agree that when dealing with a chronic condition, it is helpful to find a support group – people going through the same thing. Let’s hope that @bfsecurityguy and @c_edward will respond to this message when they get the email notification.

What kind of pain do you have and how are you managing it?

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Replies to "Hi @Tbato622 Let me start by welcoming you to Connect. I agree that when dealing with..."

Hello. Thank u for ur email. I had an intramedullary spinal cord tumor. It was respected in 2009. It was at level C7-T3. I have severe neurological deficits n now also have arachnoiditis. I am a patient of Dr. Lubenow at Rush in Chicago. I have an intrathecal pump implanted w/morphine, bupivacaine, n clonidin. I have severe neuropathy everywhere except my hands arms n head. I live a miserable life. Any help, info, or support group would be appreciated Thank You very much!!

Hi Colleen,
Thank you so much for writing and welcoming me. It’s most appreciated. I’ve been in pain for 10+ years. Long story but I hurt my back and my one surgery caused way worse damage to it. Along the way I was told, “this time you’ll be fine. You’ll wish you had this surgery before etc.”. Anyway, in April I couldn’t take things much more, MRI didn’t look good. Two days before I was to go in I was diagnosed w/ cancer. My surgeon is the top trauma and reconstructive spine surgeon around. I had to wait 7 months to get a surgical apt. He called and said, “look we can get you through cancer and I’ll do your surgery anytime, day/night/wknd, you won’t have to wait”. I appreciated his offer but I honestly didn’t care, I was putting cancer off, my back was my priority. If the pain didn’t stop I thought let cancer take me. I can’t keep living like this. Wow little did I know what I was in for. He went in and I was leaking CSF/hemorrhaged and my dura was burned away. Due to it all I had a brain aneurysm. I leave the rest out but after surgery I started having pain that was beyond what I could take. I had diagnostics which showed a large pocked of fluid(can be spinal fluid again or infection or seroma) they’re going in Wed. It also showed A.arachnoiditis. My nerves are damaged for life. So much for my better life. I’m sorry this is so long. I appreciate you, if you did, reading this. I want to just quit my cancer treatments and do what. They offered me a pain pump and said, “it happens”. My surgeon that I valued and adored… he hasn’t talked to me once. His PA’s or partners will only talk to me now. They tell me it’s just what happens when someone’s be damaged so bad like me. Anyway, how are you and how do I cope when I was so hopeful and brave for years. I never complained I still remained me.. now I don’t know who I am? I feel like I’m floating in a dream. Thanks again. I know people have it worse than me but I just don’t know what to do.

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