Arachnoiditis: Looking to talk with others

Thank you so very much. I am in the same situation. Neurologist , nureosurgeons , pain management, psychiatrist phycologist, I'm not asking for a cure but a better quality of life. I live in VA and the cold is extreme right now. I woke up warm from my bed only to stand up in severe pain , I'm not good with walker but I have refused the wheelchair so far. I have tried to make my home safe for me to walk thru and also take care of my little dog. She's alot of comfort when she's not barking. Lol. I enjoy looking outside to see deer and other wildlife. Where are you located ?
If you don't mind me asking.

I believe the last spinal tap after a car accident which was a hit from behind type went really bad even though I was having symptoms before then. But Dr who was doing the spinal tap said the contrast is pooling in one spot and will not go any further I'm afraid if I inject anymore it will blow out . I came home needless to say that the contrast did not leave my body thru my kidneys liver etc it accessed and came out thru my skin.

I've just continued to get worse.
I pray God gives me the patience to recieve some relief and answers.

I want to enjoy my life , have a little better quality of life , be able to socialize w my family who are mainly all I have. When this started I haven't drank in over 11 years and I'm no socialite .... I use to love to get out and drive in the woods and enjoy my life.

If you don't mind , we can talk , sometimes it hard for me to share , but my dog barks also , I'd like to know or hear of your surgeries etc. I had cancer my senior year of high school and had radiation treatments after from my thoracic spine , then I had to learn to walk again.
I guess I've typed enough for now. Thank you for reaching out. I'm praying for you also.

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 🙁

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.