1. < Spine Health

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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dubis | @dubis | Mar 23, 2020

I am so sorry. I was diagnosed today with Arachnoiditis. I’ve been a Duke patient for the last four years- two fusion surgeries, and two ocular decompression in the past 3 yrs. Many injections for pain as I refused opioids. Now this. I’m not sure where to go from here.

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2 replies
Donald | @donfeld | Mar 24, 2020
In reply to @dubis "I am so sorry. I was diagnosed today with Arachnoiditis. I’ve been a Duke patient for..." + (show)
@dubis

I am so sorry. I was diagnosed today with Arachnoiditis. I’ve been a Duke patient for the last four years- two fusion surgeries, and two ocular decompression in the past 3 yrs. Many injections for pain as I refused opioids. Now this. I’m not sure where to go from here.

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Just keep movement! Go Google Dr. Forrest Tennant

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 24, 2020
In reply to @dubis "I am so sorry. I was diagnosed today with Arachnoiditis. I’ve been a Duke patient for..." + (show)
@dubis

I am so sorry. I was diagnosed today with Arachnoiditis. I’ve been a Duke patient for the last four years- two fusion surgeries, and two ocular decompression in the past 3 yrs. Many injections for pain as I refused opioids. Now this. I’m not sure where to go from here.

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Hello @dubis -- I would like to add my welcome to Connect along with the other members here. There are several discussions on Connect where you can meet other members discussing Arachnoiditis and learn what they have shared.

Any Adhesive Arachnoiditis members here?
-- https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/

Arachnoiditis: Trying to find a specialist
-- https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

Arachnoiditis -- https://connect.mayoclinic.org/discussion/arachnoiditis-2/

@dubis may I ask what is the symptom that is most difficult for you?

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1 reply
Donald | @donfeld | Jun 25, 2020
In reply to @lavera "I have been diagnosed by mri. Constant pain. Please let me know if you find a..." + (show)
@lavera

I have been diagnosed by mri. Constant pain. Please let me know if you find a dr in OKC or anyone.

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How are you doing now with your Archnoidititis?

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Donald | @donfeld | Jun 25, 2020
In reply to @bethtrotter "My mom was just diagnosed with this after having back surgery, once in September and again..." + (show)
@bethtrotter

My mom was just diagnosed with this after having back surgery, once in September and again in December. She’s still in rehab trying to do therapy but she can’t do it most days because the pain in her butt and leg are too unbearable. What, if any, things have you found to ease off the pain? I can empathize with everyone on here and with my mom because I a severe form of Neuropathy and suffer with most of the same symptoms and it’s a living hell to endure this much pain. I’m doing research to try to help her get back as much quality of life for her.... Thanks for any suggestions or help!

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How is your mother doing with Arachnoititis?

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Donald | @donfeld | Jun 25, 2020
In reply to @donfeld "Kim, remember that PEMF mat that I ordered? It seems to be helping my condition as..." + (show)
@donfeld

Kim, remember that PEMF mat that I ordered? It seems to be helping my condition as I am experiencing less pain and more strength. It might be to soon to really get a analysis, but I will keep you informed I hope you're doing well.

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I tried the mat and it seem to aggravate my nerves in my buttocks which worried me that it will cause my Arachnoititis to go adhesive. How are you using your mat?

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lilypaws | @lilypaws | Jun 25, 2020

@donfeld What is wrong with your spine.? Have you been to Mayo. Your doctor can refer you or you can call to get an appointment. I had a fusion on my back on June 9th from T-10 to my pelvis. It was a 9 hour surgery. My doctor was surprised I could put up with the pain. At L-4 & 5 I had very pinched nerves, which he corrected. There was degeneration which he fused and put a rod on both sides of my spine.
So I should live forever with this spine, although I'm 68. It's a hard surgery, but know the outcome will be positive. They tested me before the surgery and ran a lot of tests and told me the surgery would help a lot. I have to wear a brace very tight and not move to the side, back or forward much. I have a wonderful husband being my nurse. Hope you get better.

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1 reply
carolinapearl | @carolinapearl53 | Jun 28, 2020
In reply to @lilypaws "@donfeld What is wrong with your spine.? Have you been to Mayo. Your doctor can refer..." + (show)
@lilypaws

@donfeld What is wrong with your spine.? Have you been to Mayo. Your doctor can refer you or you can call to get an appointment. I had a fusion on my back on June 9th from T-10 to my pelvis. It was a 9 hour surgery. My doctor was surprised I could put up with the pain. At L-4 & 5 I had very pinched nerves, which he corrected. There was degeneration which he fused and put a rod on both sides of my spine.
So I should live forever with this spine, although I'm 68. It's a hard surgery, but know the outcome will be positive. They tested me before the surgery and ran a lot of tests and told me the surgery would help a lot. I have to wear a brace very tight and not move to the side, back or forward much. I have a wonderful husband being my nurse. Hope you get better.

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Hello. I got a text from Mayo clinic about someone looking ro find out about arachnoiditis.
I was diagnosed with this horrible disease in 2012. Quite by accident. I have had back problems since the 80's. Back then no one knew exactly what to do to fix it. Found a wonderful doctor and had my L4-L-5 fused. Went ok for a few years. But the pain returned. Had SO many shots in my back. Doctors said there wasn't anything they could do. After finding a pain managment doctor and getting more epidurals had another MRI. THATS when they discovered it. So, since 2012 i have been on the Fentanyl patch every other day. Plus hydrocodone. My doctor also provided me with medical marijuana. I am still suffering. And tbere is NO CURE for arachnoiditis. Hope this may help some one. Peace be with you.

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lilypaws | @lilypaws | Jul 30, 2020
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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@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!

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lilypaws | @lilypaws | Aug 7, 2020

@joanmahon What is it that have? I am a retired Certified Medical Asst. I always interested in what I don't know what they are so would you let me know?

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