Arachnoiditis: Looking to talk with others

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

Had an MRI on Friday and saw the results. Of course, I don't understand the medical explanation. After a Discectomy and Laminectomy from a neurosurgeon, I was hoping to get some relief, but now have numbness and tingling down both legs. I use to have cronic pain on the left side of my back from sciatica, spinal stenosis and degenerative disc disease. These are new feelings and I am hoping to get an appointment soon to discuss MRI.

on the MRI did it mention any nerve clumping or scarring? I think that's usually what they mention if it's arachnoiditis, but I'm new to it all so not 100% sure. I hope you're able to find relief soon! Are you taking anything for the pain?

Hi, I'm in VA too, in the Roanoke area. Where are you located? My lumbar mri from last Nov said "mild enhancement of nerve root at cauda equina, suggestive of arachnoiditis". So, haven't officially been dx, but am feeling the symptoms. How are you doing? I hope you're doing well, being new to all this I'm trying to learn as much as I can but having trouble coming to grips with it all 🙁

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?

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.

I have had AA for years. But never like now. 3 weeks, lost all bowel control. I don't mean to repeat myself... But i am a mess. Loss bowel control, has caused me more problems with drug resistant UTI ( permanent supra pubic catheter) My kidneys, aren't good. I am a senior, on Medicare & Medicaid. Not one MD, has been willing to look at Dr Tenant's protocols. Even printed them up & tried to give to them. My PCP now handling the oral Decadron. I am afraid i'm one of those patients, who has gone down hill (with no return) I am in agony. Taking Percocet 10 mg TID. I just got out of the acute care hospital, for another UTI. Fortunately, this one wasn't drug resistant. Most are & i have to go the hospital for 5 or more days IV. I have only slept a very few hours from Steroids. I can't even get my thoughts together. Can't get out of bed. Hospital's only concern, was that i shouldn't get any stronger pain relief. Had several doctors, tell me i had no reason to be in pain....When i asked, they knew nothing about AA... Had admitting doctor give me Dilaudid. But some one came in & told me no pain mgt...I did get the Percocet. I was hallucinating & guess was from lack of sleep I was almost screaming out from pain. So i went to another Pain Mgt place , Dr was very nasty. He accused me of everything illegal that you can do with narcotics. By the way, was with same pain mgt for 14 years. never once had any problem with my narcotics. I know all about the Opioid crisis etc. Wasn't able to defend myself. So now new, nasty DR suggesting i get more steroids, from caudal region. My hardware is inflamed up to my arm pits. In the past, i know they tried this without success. I have massive scar tissue & it's impossible to get the medication, up, where it needs to be. Anyway, it takes 6 months to get into a neuro & they are also telling me, nothing but steroids. On Medicare & Medicaid Have 20 hours of help, but no one wants to work for the wages around here in AZ. I can't pay for treatments not covered. I live in a retirement community, with annual raises of 8 & 9 percent. Been here 18 years & they are good to me...but worried that i will end up on the street. This is the cheapest place in AZ & i am on section 8, but still subject to raises. They provide good food & will pick me up, off the floor, if i fall. Anyway, I can't sit up long enough to do anything.