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Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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Hayabusa1300 | @milesdaviskindofblue | Jun 4, 2022

Good morning. I have spinal Arachnoiditis as well there is quite a few things that can cause it . But after you have been diagnosed with it you definitely have to be your own advocate pretty much doctors tell the techs what do there just doing there jobs ( YOU ) have to speak up when you have this diagnosis or you could possibly be permanent in a wheelchair. There is no cure for this I’ve been dealing with it for 3 years now . Only thing that helps me pull through every day is pain meds , Gabapentin, tazidine , strong CBD oil 2 times a day and one to try and sleep . My pain never shuts off the way my Neurologist explained it to me is your body is like a train track with the brain being the main power hub . The pain signal is sent but the middle car is off track so it has no where to go so the signal just keeps going with no end , that’s day end and day out . I also take inflammatory meds to keep the swelling down as my spinal cord swells from time to time . I know we all would like an answer but there isn’t one bottom line there is no cure just Managment stay as active as you can I’m in a wheelchair myself push the limits make yourself do most of all don’t give up believe and pray 🙏🏻 the man upstairs is watching over you
you got this

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owlbyrd | @owlbyrd | Jun 4, 2022

Check Dr Forrest Tennant at arachnoiditishope.com

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tallanne | @tallanne | Jul 13, 2022

I'm sorry to hear about your diagnosis. I was diagnosed on 2002 with lumbar AA and in the past 20 years my abilities have decreased considerably. Just last month I was also diagnosed with severe cervical AA. I'm not sure where it is all going.

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tallanne | @tallanne | Jul 13, 2022

I'm sorry to hear about all your diagnosis. I was diagnosed in 2002 with lumbar AA due to over 50 lumbar punctures. And in the past 20 years my abilities have decreased considerably and I am now in an electric wheel chair. Just last month I was also diagnosed with severe cervical AA. I'm not sure where that is all going. I hope it does not progress to the brain. Good night all, Anne.

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stephjane55 | @stephjane55 | Aug 5, 2022
In reply to @rachelarachgirl "Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012...." + (show)
@rachelarachgirl

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

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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

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1 reply
meri91364 | @meri91364 | Aug 6, 2022
In reply to @stephjane55 "I have it too from too many spinal epidurals. I’ve had cancer even but this chronic..." + (show)
@stephjane55

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

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I was diagnosed with AA a year ago. I’m in a lot of never ending pain. I got this from a spinal epidural. There seems to be no help for this disease. I’ve been to many drs and been on lots of meds, most of which I can’t tolerate. I’m at the end of my rope. I can hardly walk. Anyone getting any help with this ?

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1 reply
Donald | @donfeld | Aug 7, 2022
In reply to @toiolinger "I have symptoms of Arachnoiditis. I was diagnosed with Transverse in 2012. I read a lot..." + (show)
@toiolinger

I have symptoms of Arachnoiditis. I was diagnosed with Transverse in 2012. I read a lot about Dr. Tennant who treated people with this disease. Unfortunately he was forced to retire. I am going to see a doctor and get a confirmation that I have this disease. I have pain in my back, butts. Tingling, numbness, burning, spasms, and twitching. It’s unbearable some days. I take pain pills and have stemulators in my back. Thank you. Chantaburi.

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I am thinking of getting the stimulator in planet in October and I just wanna know how you’re doing with it?

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stephjane55 | @stephjane55 | Aug 7, 2022
In reply to @meri91364 "I was diagnosed with AA a year ago. I’m in a lot of never ending pain...." + (show)
@meri91364

I was diagnosed with AA a year ago. I’m in a lot of never ending pain. I got this from a spinal epidural. There seems to be no help for this disease. I’ve been to many drs and been on lots of meds, most of which I can’t tolerate. I’m at the end of my rope. I can hardly walk. Anyone getting any help with this ?

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I too have AA and Omgosh it’s ruining my life so bad 🙁 I’m miserable and hurting non stop. I’d love to find someone that could help us. Gentle hugs

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1 reply
Donald | @donfeld | Aug 7, 2022

I have your condition and I suffer quite a bit and now I’m waiting for a stimulator to be put in my spine in October. Hope it helps. Doctor Tennat says a lot of patients think it’s the best thing. Have you tried it?

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Donald | @donfeld | Aug 9, 2022

Does anybody out there know about the stimulator to help with Arachnoiditis adhesive? I am scheduled to have one put in in October just trying to get some feedback. Thanks, Donald

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