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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: Apr 16 10:18am | Replies (386)Comment receiving replies
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
Replies to "Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012...."
I have it too from too many spinal epidurals. I’ve had cancer even but this chronic pain is like none other. I’m losing hope 🙁 I’m getting serious with my gf and I’m trying to tell her what it’s about. It’s awful and seriously life changing. I just wish I could meet a Dr who was knowledgeable about what we’re going through. Gentle hugs to you
Hi my name is Debbi..I too have Arachnoditis.. diagnosed with it in 1983.. yes many moons have passed and through all the doctors neurologists included I have been put through the mill. I am in hopes of getting treatment at the Mayo clinic. I have
adhesive arachnoiditis of course. I have a reaction to epidural steroids that I can no longer get them. I never felt that they helped anyways for me. Last year I had the stimulator put in it worked for 3 months it was wonderful as we all know what kind of paint that we have to deal with on a daily basis. When the stimulator stopped working after a year I had it removed. I am wondering at this point I would like to find out if a morphine pump would do me Justice. I am a workman's comp case. Which I was grandfathered in there for I am lucky to say I am covered for my back the rest of my life. I just wished that Dr Forrest Tennant could help us all because I know if he could he would definitely do that for us. So did in my story if anybody has a reply on the morphine pump and if it has helped them for a length of time please let me know. Thank you for listening and God bless us all.
I just received the same diagnosis after the surgeon knicked my dura during surgery causing spinal fluid leakage creating arachnoiditis immediately post op. Extreme numbness and tingling in my feet, right leg weakness over my s1 dermatone. Bad low back pain with flares. They want me to try a spinal cord neurostimulator. I'm 4 months post op, they say after a year with PT is where you find out what nerves are really dead and not coming back. I'm scared, depressed and constantly tired. I hear you and feel you.
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@rachelarachgirl I am so sorry it must be really bad and hard to live with, I don't know what Adhesive Arachnoiditis is, but must be very painful. Smart that you went to Mayo Clinic.
I had a 9 hour fusion surgery there from my T-10 to my pelvis. It was a very big surgery, but had a surgeon that was a Professor in orthopedic and spinal surgery. It was tough recovery, because I had low blood pressure where I would almost passed out. They finally stopped the Valium and my Blood Pressure went up. I had to have a red cell blood infusion for low hemaglobin (sp) But I'm doing well now with a some pain. I have soft bones, so I can't bend, twist or lift anything over 10 pounds and I wear a brace. It takes a year to finally heal.
Can they help you at Mayo? I'm so discussed with the other surgeons that did what they did to you. I am very sorry. I wish I could help more, but it's ok to be depressed you have a good reason. I have depression and anxiety complex. My son has Bipolar 1, we have mental illness in my family and it's very inherited. My mom was Bipolar 1 and committed suicide at age of 69. It's ok, I went to counseling and it's been many years ago. I am 68. I have depression sometimes, but on medicine, which you might want to go to a psychiatrist and get on some medicine. I'm on Lexapro and Lamictal.
Oh, I wish I could help you more. Can you explain to me what it is that you have, that would be great. Take care, I care about you!