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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judithelaine | @judithelaine | Jun 22, 2021
In reply to @bear338 "I know what you mean about doctors not listening to you I had a heart attack..." + (show)
@bear338

I know what you mean about doctors not listening to you I had a heart attack five years ago they put me on so much medicine I started to have hiccups this went on for over a month so bad that my wife called and ambulance to take me back to the hospital they didn’t know why it was happening they even tried thorazine all it did was make me sleepy it got so bad I couldn’t catch my breath so my wife started looking up all the new medicine I was on and found one that said that it could cause problems with your Diaphragm so I stopped that one and two days later no more hiccups so keep telling them what you are dealing with you are your best advocate .

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Dr. Put me briefly on 300 mg pregabalin (similar to - lyrica without the price tag. I too got swelling - he sent me to hospital for urgent CT scan; then, we went back to the 225 mg. I’m glad I have a pain management who pays attention.

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judithelaine | @judithelaine | Jun 22, 2021
In reply to @kenyalama "Dear buddies in struggles You also inspire me. It is good to be in touch. Regarding..." + (show)
@kenyalama

Dear buddies in struggles
You also inspire me. It is good to be in touch. Regarding PT you are not alone. It has only worsened my pain every time. Some doctors think we don’t have the will to improve
How would we not?
Do they think we enjoy this life ?
Of course there are doctors who are sympathetic but not many
And it was so interesting to learn that AA does not have a medical code. No wonder we never see mentioned in our medical history except, in my case, the MAYO CLINIC and only a couple more here
Let’s keep our chats please!
Take care!

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I so wish I could find (have the nerve to approach?) my pain mgmt dr or rheumatologist about Tennant protocol Re: AA.

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bear338 | @bear338 | Jun 22, 2021
In reply to @kenyalama "Dear buddies in struggles You also inspire me. It is good to be in touch. Regarding..." + (show)
@kenyalama

Dear buddies in struggles
You also inspire me. It is good to be in touch. Regarding PT you are not alone. It has only worsened my pain every time. Some doctors think we don’t have the will to improve
How would we not?
Do they think we enjoy this life ?
Of course there are doctors who are sympathetic but not many
And it was so interesting to learn that AA does not have a medical code. No wonder we never see mentioned in our medical history except, in my case, the MAYO CLINIC and only a couple more here
Let’s keep our chats please!
Take care!

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My journey started over 35 years ago when I started having problems when I would get off work by the time I got home the pain would start then the stiffness this went on for about two years I keep going to doctors with no answer until I went to a orthopedic surgeon after a lot of test he said he couldn’t find anything but there was one more test he could run it was a genetic test so they did and it came back positive I had ankylosis spondylitis he sent me to a rheumatologist he was not a bad doctor but I keep winning up in the hospital so I took my records to a different doctor and asked if they would do different and they said what they would do so I went back to my doctor and told him what they said he said he was not comfortable doing that so I change and I was with my new doctor for over 30 years she retired last year and I am now looking for a new doctor for that so use your own head to find someone who will listen to you don’t be afraid to get a second opinion on what is going on with you.

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tepping8382 | @tepping8382 | Jan 26, 2022
In reply to @mdmo "Pam, I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that..." + (show)
@mdmo

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

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I’m wondering why you are detoxing from your pump I have one and I’m always worried about having it in too long

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lynneat | @lynneat | Jan 27, 2022

I know a lady who got this from injections in the duration space. It was deposited metrology and steroids but it's the duration space....I don't let my pain doc NEAR IT!

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1 reply
lynneat | @lynneat | Jan 27, 2022
In reply to @lynneat "I know a lady who got this from injections in the duration space. It was deposited..." + (show)
@lynneat

I know a lady who got this from injections in the duration space. It was deposited metrology and steroids but it's the duration space....I don't let my pain doc NEAR IT!

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Sorry. I meant deoo medrol

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1 reply
lynneat | @lynneat | Jan 27, 2022

We're injections in the dura space?

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lynneat | @lynneat | Jan 27, 2022
In reply to @lynneat "Sorry. I meant deoo medrol" + (show)
@lynneat

Sorry. I meant deoo medrol

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Stupid phone. Depo medrol I

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Raymond Long | @rlcglds | Jan 28, 2022

I have malignant adhesive arachnoiditis diagnosed March 2021. I had multiple cyst with the worst one at T4. I am now paraplegic from the chest down. I create scar tissue very quickly and just a few weeks after my major surgery to clear the cyst I had more developing. I am a Viet Nam vet with Agent Orange issues as well so that may have something to do with the uniqueness of my disease. Wishing you the best. For me it has been a complete life change

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constancebabe | @constancebabe | Jan 29, 2022
In reply to @constancebabe "I was taking 600 mg of Gabapentin a day...(I had a spinal cord injury from degeneration)..And..." + (show)
@constancebabe

I was taking 600 mg of Gabapentin a day...(I had a spinal cord injury from degeneration)..And while I don’t believe I’ve experienced any memory loss........I did experience water retention and swelling in both of my legs. When I complained to my doctors and their nurses, they didn’t believe it was coming from the gabapentin. They thought my swelling was due to either too much sodium or other reasons… (I’ve never had swelling in my life for any reason) Anyway, I weaned myself off of the gabapentin over the course of two weeks, and as of now I wake up every day with absolutely no swelling in my legs or my feet. So, don’t be surprised if you eventually have swelling and take it from me it’s most likely due to the Gabapentin.

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I’m right there with you!,! I had a Corpectomy with fusion less than a year ago because of degeneration in my cervical spine that was pressing on my spinal cord. They had me on gabapentin and I had the exact same swelling in my legs (which I’ve never had any swelling in my life before.) When I mentioned it to the nurse, she said that often happens on gabapentin. When I mentioned it to the doctor, he said ‘No…that’s not from gabapentin.’ I ended up going off it on my own …and just like you all my swelling went away. I’m still looking for something that works for me. I don’t have pain necessarily, but I still have extremely stiff legs and muscle spasms in my back. I’m going back to my neurosurgeon on Tuesday because I’m not getting over the stiffness like we thought, so I’m wondering if my C7 is affecting something now too. (My corpectomy was for C5 and the discs from C4 to C6) Good luck to You. I am 64 and always was VERY ACTIVE…and I’d like to get back to being able to do what I used to do. I never had ANYTHING before…never got colds, flu, ANYTHING….So, I thought I was invincible. (Then I had a ruptured brain aneurysm…which I fully recovered from…but now I seem to have other things. They say it’s unrelated to my aneurysm…so I take them one at a time.)
Sincerely, Connie

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