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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lynetteh1 | @lynetteh1 | Jan 8, 2023

Dr Tennant has recommended many supplements. I take opioids for the pain and gabapentin. Have you read his book and the literature he has written? Also, I have listened to his lectures on YouTube. I was diagnosed in August 2022, after two back surgeries that year. At this point I am only able to walk with the assistance of a walker. My prayer is that it doesn’t get worse.

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lynetteh1 | @lynetteh1 | Jan 8, 2023
In reply to @donfeld "I deal with Doctor Tennat and what medication are you trying now and is it working?" + (show)
@donfeld

I deal with Doctor Tennat and what medication are you trying now and is it working?

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I answered you but now I can’t find it. Lol

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1 reply
near333 | @near333 | Jan 21, 2023

My husband was diagnosed with lumbar adhesive arachnoiditis a few weeks ago. He had lumbar fusion 4 years ago, then started developing pain a few months ago and has since had several epidural steroid injections, and his pain had gotten much worse. So we got an MRI a few weeks ago and it definitely showed adhesive arachnoiditis which has such a poor prognosis. So of course we are looking for some kind of treatments and are also having trouble finding an authority on Arachnoiditis. We are considering a spinal nerve stimulator, but I'm worried about any type of procedure on his back - could it make the scarring and arachnoiditis even worse? Anyone have experience with the neurostimulators? Many thanks...

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1 reply
lynetteh1 | @lynetteh1 | Jan 22, 2023
In reply to @near333 "My husband was diagnosed with lumbar adhesive arachnoiditis a few weeks ago. He had lumbar fusion..." + (show)
@near333

My husband was diagnosed with lumbar adhesive arachnoiditis a few weeks ago. He had lumbar fusion 4 years ago, then started developing pain a few months ago and has since had several epidural steroid injections, and his pain had gotten much worse. So we got an MRI a few weeks ago and it definitely showed adhesive arachnoiditis which has such a poor prognosis. So of course we are looking for some kind of treatments and are also having trouble finding an authority on Arachnoiditis. We are considering a spinal nerve stimulator, but I'm worried about any type of procedure on his back - could it make the scarring and arachnoiditis even worse? Anyone have experience with the neurostimulators? Many thanks...

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Please contact Dr Tennant in West Covina. He treated many patients with AA. He has written books and held conferences on arachnoiditis. Google arachnoiditishope.com, and you will find a lot of information. Please message me again if you have a problem.

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1 reply
near333 | @near333 | Jan 22, 2023
In reply to @lynetteh1 "Please contact Dr Tennant in West Covina. He treated many patients with AA. He has written..." + (show)
@lynetteh1

Please contact Dr Tennant in West Covina. He treated many patients with AA. He has written books and held conferences on arachnoiditis. Google arachnoiditishope.com, and you will find a lot of information. Please message me again if you have a problem.

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Thank you, I will definitely do that. But I thought he had retired - is there still someone keeping up his practice? Either way I'll check into the books - and I really appreciate the information.

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1 reply
lynetteh1 | @lynetteh1 | Jan 22, 2023
In reply to @near333 "Thank you, I will definitely do that. But I thought he had retired - is there..." + (show)
@near333

Thank you, I will definitely do that. But I thought he had retired - is there still someone keeping up his practice? Either way I'll check into the books - and I really appreciate the information.

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Yes he has retired but if you contact him he will email you and give you information on what you might want to do what supplements you might want to take what drugs etc. he gets back to me right away with the information that I need so try to contact him you can get his all his information if you Google Dr. Forest Tennant.

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lynetteh1 | @lynetteh1 | Jan 22, 2023
In reply to @lynetteh1 "I answered you but now I can’t find it. Lol" + (show)
@lynetteh1

I answered you but now I can’t find it. Lol

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I take a lot of supplements. He suggests corticosteroids. I have not tried that yet. I just saw a pain management doctor last week. I am on opioids and gabapentin and a couple other prescriptions. He gave me. He says let’s get the pain under control and then will deal with the adhesive arachnoiditis. Please google Dr. Forest Tennant and you will find a lot of information. Even though he is retired, he will still communicate with you through emails. I can’t say enough good about him. He has been wonderful to me.

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1 reply
wanttolearn | @wanttolearn | Jan 24, 2023
In reply to @lynetteh1 "I take a lot of supplements. He suggests corticosteroids. I have not tried that yet. I..." + (show)
@lynetteh1

I take a lot of supplements. He suggests corticosteroids. I have not tried that yet. I just saw a pain management doctor last week. I am on opioids and gabapentin and a couple other prescriptions. He gave me. He says let’s get the pain under control and then will deal with the adhesive arachnoiditis. Please google Dr. Forest Tennant and you will find a lot of information. Even though he is retired, he will still communicate with you through emails. I can’t say enough good about him. He has been wonderful to me.

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ArachnoiditisHope.com
There are bulletins you can sign up for.

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debbilee | @debbilee | Jan 24, 2023
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 my name is Debbi..I too have Arachnoditis.. diagnosed with it in 1983.. yes many moons have passed and through all the doctors neurologists included I have been put through the mill. I am in hopes of getting treatment at the Mayo clinic. I have
adhesive arachnoiditis of course. I have a reaction to epidural steroids that I can no longer get them. I never felt that they helped anyways for me. Last year I had the stimulator put in it worked for 3 months it was wonderful as we all know what kind of paint that we have to deal with on a daily basis. When the stimulator stopped working after a year I had it removed. I am wondering at this point I would like to find out if a morphine pump would do me Justice. I am a workman's comp case. Which I was grandfathered in there for I am lucky to say I am covered for my back the rest of my life. I just wished that Dr Forrest Tennant could help us all because I know if he could he would definitely do that for us. So did in my story if anybody has a reply on the morphine pump and if it has helped them for a length of time please let me know. Thank you for listening and God bless us all.

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carolinapearl | @carolinapearl53 | Feb 1, 2023

I was diagnosed in 2008 with adhesive arachnoiditis. None of the injections I had helped. Met a wonderful pain management doctor and after everything else he tried failed, I was put on a fentanyl patch. Worked wonderful! I was started out at 75 mcg and got worried because I had zero pain. I was scared, and wondered if I would actually hurt myself because I couldn’t feel anything. So now I’m down to 25mcg with hydrocodone for a filler pain reliever. I have noticed that there are parts of my body that have gone completely numb now and really worried it won’t be long before I will be paralyzed from this dreadful disease. Would like to stay in touch with all that have this and need to talk about it. Thanks, Dianna

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