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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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 2, 2023
In reply to @lynetteh1 "Does anyone have experience with Arachnoiditis. I have found that the doctors in my area have..." + (show)
@lynetteh1

Does anyone have experience with Arachnoiditis. I have found that the doctors in my area have no experience with this disease. I have been communicating with Dr Tennant in West Covina. He is a Godsend.

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@lynetteh1 I don't have experience with Arachnoiditis, but you can engage with other members in these discussions about Arachnoiditis . Others have mentioned Dr. Tennant as well.

Spine Health Group-
– Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
– Arachnoid Cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst/

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Moderator
Amanda Roe | @amandajro | Jan 3, 2023
In reply to @lynetteh1 "Does anyone have experience with Arachnoiditis. I have found that the doctors in my area have..." + (show)
@lynetteh1

Does anyone have experience with Arachnoiditis. I have found that the doctors in my area have no experience with this disease. I have been communicating with Dr Tennant in West Covina. He is a Godsend.

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Hello @lynetteh1. You will notice I have moved your post into an existing discussion on Arachnoiditis, which you can find here:
- Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/

I see that @jenniferhunter has joined you to share and also recommended this same discussion. Members such as @meri91364 @lebanon100 @donfeld and @jojo58 who have been active in this discussion and who may be able to come back in and join you as well.

What have you found helpful through your care so far?

REPLY
wanttolearn | @wanttolearn | Jan 3, 2023
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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Dr Tenant still works hard to educate the world about adhesive arachnoiditis. He is a wonderful, caring doctor. He is still educating the world through ArachnoiditisHope.com

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wanttolearn | @wanttolearn | Jan 4, 2023
In reply to @donfeld "I’ve had this condition for the last four years and I know how much it is..." + (show)
@donfeld

I’ve had this condition for the last four years and I know how much it is to suffer with but I think I finally found the answer and it was right under my nose. It does not include opioids or surgery it’s just a certain medication that will really help your pain and get your life back in order. If you’re interested let me know.,? Donald exercise

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Please share what you use. Or, was your answer exercise?

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riovirgingirl | @riovirgingirl | Jan 4, 2023

Please include me in the Arachnoiditis discussions as I've just been diagnosed.
Thank you, Julie M.

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Donald | @donfeld | Jan 4, 2023
In reply to @donfeld "I’ve had this condition for the last four years and I know how much it is..." + (show)
@donfeld

I’ve had this condition for the last four years and I know how much it is to suffer with but I think I finally found the answer and it was right under my nose. It does not include opioids or surgery it’s just a certain medication that will really help your pain and get your life back in order. If you’re interested let me know.,? Donald exercise

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Please let me know if you wish to share this with me. We both know what kind of pain we’re talking about. Thanks, Don

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Donald | @donfeld | Jan 4, 2023
In reply to @jojo58 "I’ve not been told I have this but it sure sounds close. I can’t sit around..." + (show)
@jojo58

I’ve not been told I have this but it sure sounds close. I can’t sit around all day. I work full time and take care of my grandsons. I hate waking up every day to a headache or migraine. Keeping moving does help

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YES!!!

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lynetteh1 | @lynetteh1 | Jan 6, 2023
In reply to @missb "I have similar symptoms but they have not diagnosed me with certainty yet (being referred to..." + (show)
@missb

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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It ia diagnosed through an MRI.

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lynetteh1 | @lynetteh1 | Jan 6, 2023
In reply to @donfeld "I’ve discovered that a medication that Doctor Tennat who is a specialist arachnoiditis has been recommending..." + (show)
@donfeld

I’ve discovered that a medication that Doctor Tennat who is a specialist arachnoiditis has been recommending for sometime is working for me. The problem is you have to find a doctor that’s willing to listen to these recommendations and take it serious. I have found that Doctor Who is a concierge doctor and has tremendous knowledge of this condition and is willing to prescribe this medication. If you’re interested let me know. Donald

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Please tell me who is the
doctor and what is the medication.

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Donald | @donfeld | Jan 7, 2023

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

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