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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feckert52 | @feckert52 | Oct 22, 2019
In reply to @carolinapearl53 "Hi rachelarachgirl. I'm terribly sorry for what you are going through. I was diagnosed in 2012...." + (show)
@carolinapearl53

Hi rachelarachgirl. I'm terribly sorry for what you are going through. I was diagnosed in 2012. Not something I would want anyone to experience. I too, have way too many shots in my back, trying to relieve my pain. Of course, the shots ever proved to help me. It's very difficult to explain just what the pain is like, so here we go with the pills. We, that have A A, have no recourse. I could have a pump installed to shock the nerve into submission. Not going to happen in my case. If you should feel the need to talk, please do t hesitate to contact me!

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What pump shocks the nerve? Do you mean a spinal cord stimulator? I am not a success story, but many people get great relief from them. The pump is an alternative to oral meds and delivers an opiate (usually morphine or dilaudid) directly to the spinal cord. I am waiting to hear from Mayo - they got my records a week ago today. If they won't see me, I have an appointment with a neurosurgeon at Emory in January as a backup (I live about 150 miles from Atlanta). The local neurosurgeon who did my SCS implant wants me to try another one but I am very hesitant to do that. Are you in N Carolina or S? I am in Greenville SC

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anna2019 | @anna2019 | Oct 23, 2019
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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Hi Rachel. So sorry for your AA and all your associated "unbelievable" pain that, I, too, have! No one understands this pain except another AA sufferer! I have been suffering with it for almost 3 years, and it is now escalating to a new, frightening level. Yes, I believe it is comparable to stage 4 cancer. My husband's former wife died from ovarian cancer, and he agrees that my pain was/is very similar. He is also a great help to me and massages my legs/feet daily, sometimes 3-4 x daily to help me with the pain, since no meds work. My husband is also a researcher and found out that in Portugal, Russia, & China, AA adhesions/ cysts can be successfully removed with special micro-surgical tools, with great results in followups! No one seems to be able to do it here in the US which is very disappointing. We are considering going to one of these countries for help. It is very difficult living with such a monster inside of our bodies with no hope of relief, so I am excited about the possibility of a recovery and relief! You may or may not respond to this reply being that is is a year later! But do so if you can. Thanks, Anna .

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arannek72 | @arannek72 | Oct 23, 2019

Hi Anna! I have had AA for about a year and a half. I too suffer the brutal pain that comes along with it. I have had some relief with medic and l marajuana. I use the oil. I do still have a lot of 9 scale pain anyway at times but it is better than it was before. I was reluctant to try it because of the stigma but it was my last resort. I'm so glad I took that chance!

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villarinho | @villarinho | Nov 3, 2019

Hi all. We are from Brazil. My mom has been diagnosed with arachnoidits and she has now a major leg weakness. No pain at all, but can not walk anymore. She got the AA after a peridural 5 months ago. Does anyone have had similar condition due to AA? We have red some successful cases of stem cells treatment on Arizona and we are investigating more at this point. Any help is appreciated!

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villarinho | @villarinho | Nov 3, 2019
In reply to @anna2019 "I have had AA for almost 3 years. It has been simply devastating to say the..." + (show)
@anna2019

I have had AA for almost 3 years. It has been simply devastating to say the least! It began with a "minimally invasive, one level L2 surgery" on an existing fusion of L3, 4 & 5. The neurosurgeon hammered on my vertebrae too hard, breaking a big chunk of it off, and then his tool slipped and cut my dural sac-3 inches long-causing it to leak!! I could not walk after a prolonged surgery on my right leg, I was kept doped up, and developed MSSA in the surgery sight, and was close to dying. I could not walk for 2 years, had stem cell therapy in Scottsdale with Dr. Malan, and I was able to walk, again. However, my sever pain has never stopped and my right leg, the worst, is atrophying and I have developed severe, killer muscle spasms down both legs that are devastating and beyond description, really. Please let me know if anyone has successfully sued their doctors for this heartbreaking, life-altering condition. I tried for 2 years to sue the neurosurgeon (in Reno) and no one would represent me, even with confirmation from 3 surgeons. However, he is being investigated by the Nevada State Board at the moment, because of the letter i wrote out of sheer frustration!I would love to hear from you! Thanks!

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Hi Anna, could you tell me about the stem cell therapy in Arizona? benefits, risks, cost etc. My
Mom has AA and can not walk anymore and we are investigating the stem cell therapy? Is the therapy on initial studies? My mom has no pain, bur she has spasms and can not walk. She has done corticoide therapy but it has not helped much. Many thanks and i hope you get better...

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missb | @missb | Nov 3, 2019
In reply to @toiolinger "I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I have..." + (show)
@toiolinger

I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I
have had a lot of pain in my back, fatigue, bowels and bladder dysfunction. The pain has gotten worse, got several steroids injections, for the past 3 years the I have had pain in my butts, legs, feet. The tingling, burning and twisting in my feet are unbearable at times. Thanks for listening.Chantaburi,

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I have similar symptoms but they have not diagnosed me with certainty yet (being referred to neurologist). How did they diagnose you? At this point they are just saying spine neurological disease. But I have terrible pain, numbness, weakness, tingling, pins and needles, bowel issues, etc. Some things come and go and it’s unpredictable. At this point I just want to know.

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1 reply
carolinapearl | @carolinapearl53 | Nov 4, 2019
In reply to @joanmahon "Yes, indeed, it is not possible or advisable to surgically remove evidence of arachnoiditis. PLEASE DON´T..." + (show)
@joanmahon

Yes, indeed, it is not possible or advisable to surgically remove evidence of arachnoiditis. PLEASE DON´T LET ANYONE DO IT. This, per the experts I have seen over the years. One arthritis specialist (up in age) insisted I not let anyone do any surgery on me "or you wil wind up in a wheelchair." I am glad you didn´t do it. All that is left for now is pain management, but one more thing: become well-versed in anti-inflammatory regime when it comes to FOOD! AT one point I had a marvelous MD who was a fellow sufferer, who put me on the path of avoiding anything that was inflammatory, and it did help in terms of dosage of pain killers. This means NO PROCESSED FOODS at all, no dairy, no gluten, no beans, no nightshades like tomatoes and eggplant, and the list goes on and on. Turned out to be the same preventative list of anti-inflammatory foods used by our local Stroke Clinic. It is the hardest thing to do, but once you get into it, you CAN. I was on it for at least 5 years, and things got a lot better. Unfortunately, I fell off the wagon, and am trying to get back on. Very, very strict regime, especially while socializing. Takes a lot of planning and preparation and hardly ever eating out unless very selective. And focus on vegetables, SOME Fruits, mostly salads with only oil and vinegar, and good protein (sourcing of protein is key also). Good luck to all, and my apologies if I am not using this system appropriately....still need to learn a lot about Mayo Connect

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Hi, Dianna here. I have arachnoiditis. Does anyone know what can happen when this disease gets worse and worse? Will I lose the ability to walk, or move?

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bethtrotter | @bethtrotter | Jan 18, 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

Jump to this post

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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1 reply
villarinho | @villarinho | Jan 20, 2020
In reply to @anna2019 "I have had AA for almost 3 years. It has been simply devastating to say the..." + (show)
@anna2019

I have had AA for almost 3 years. It has been simply devastating to say the least! It began with a "minimally invasive, one level L2 surgery" on an existing fusion of L3, 4 & 5. The neurosurgeon hammered on my vertebrae too hard, breaking a big chunk of it off, and then his tool slipped and cut my dural sac-3 inches long-causing it to leak!! I could not walk after a prolonged surgery on my right leg, I was kept doped up, and developed MSSA in the surgery sight, and was close to dying. I could not walk for 2 years, had stem cell therapy in Scottsdale with Dr. Malan, and I was able to walk, again. However, my sever pain has never stopped and my right leg, the worst, is atrophying and I have developed severe, killer muscle spasms down both legs that are devastating and beyond description, really. Please let me know if anyone has successfully sued their doctors for this heartbreaking, life-altering condition. I tried for 2 years to sue the neurosurgeon (in Reno) and no one would represent me, even with confirmation from 3 surgeons. However, he is being investigated by the Nevada State Board at the moment, because of the letter i wrote out of sheer frustration!I would love to hear from you! Thanks!

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Hi Anna! Could you let me know about the stem cell therapy in Scottsdale? Risks, outcome, costs etc? Many Thanks!

REPLY
lavera | @lavera | Feb 1, 2020
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 have been diagnosed by mri. Constant pain. Please let me know if you find a dr in OKC or anyone.

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