Arachnoiditis: Looking to talk with others

AA is Adhesive Arachnoiditis, the bet information, Burton Report, PPM those sites explains it well. I hope this helps you.

Right now I have Arachdoitits and I hope it is not Adhesive. I really don't know when I got it because surgeon's don't want to test forgot it as they are afraid of liability. Sad!

Don, I am so glad for you that it has not become adhesive!

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?

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.

I was recently diagnosed with AA and am trying to get an appointment with Mayo. Pain pump, from what I understand, is the gold standard treatment. Have they adjusted the dosage or changed the medication for you? I have an SCS (Abbott Proclaim) which is useless and is going to come out soon but my surgeon wants me to try another SCS trial before he does that. He showed me the AA on my MRI from two years ago. I had to have a CT for Mayo as my SCS prohibits me from MRI's. What type of doctor do you see now? Who ordered the recent imaging? It was very easy to see it on my MRI so ask them to show it to you if they "think" you have it. Either its visible and you have it or it isn't and you don't. We all spend much too much time chasing after iffy diagnoses, and I've been told by a friend who is a trauma surgeon that AA is sometimes a garbage diagnosis that doctors throw out because its untreatable and it gets them off the hook to do anything for you. I can manage life for the most part (although my ability to walk/stand is often severely limited) on my current meds, but every month I live in the fear that I will be cut off and I know that will take me out of normal living for sure. Good luck.

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

What do you mean by "cut off?"