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Anyone here with Adhesive Arrachnoiditis

Posted by katcow @katcow, 3 days ago

I have had this condition for a number of years, disabled by it. Anyone have a similar story? Mine was caused by lumbar epidural injection

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gently | @gently | 3 days ago

Thank you for your post. So many of us are getting these epidurals for pain. Can you tell us more. How was it detected--MRI? It is supposedly so rare.

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1 reply
katcow | @katcow | 3 days ago
In reply to @gently "Thank you for your post. So many of us are getting these epidurals for pain. Can..." + (show)
@gently

Thank you for your post. So many of us are getting these epidurals for pain. Can you tell us more. How was it detected--MRI? It is supposedly so rare.

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Mine happened because the needle pierced the dura and steroid medicine entered the spinal fluid. I felt severe increased pain after injection. I had injections before with no problem. I had increasing leg and low back pain that was affecting my whole life. Had MRI and was diagnosed.

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uswpres1 | @uswpres1 | 3 days ago

Mine was diagnosed in March of 2024. In discussions with 3 neurosurgeons and my neurologist we’re all in agreement it probably happened during a laminectomy I had in 2019. I’ve been in constant pain along with all the other awful issues that come with it. I’m still trying to learn as much as I can about this life altering condition as there seems to be little known especially among most physicians. Dealing with the pain and just trying to keep moving seems to be the only path forward. What an awful life to look forward to!

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1 reply
carolynhughes75 | @carolynhughes75 | 2 days ago
In reply to @uswpres1 "Mine was diagnosed in March of 2024. In discussions with 3 neurosurgeons and my neurologist we’re..." + (show)
@uswpres1

Mine was diagnosed in March of 2024. In discussions with 3 neurosurgeons and my neurologist we’re all in agreement it probably happened during a laminectomy I had in 2019. I’ve been in constant pain along with all the other awful issues that come with it. I’m still trying to learn as much as I can about this life altering condition as there seems to be little known especially among most physicians. Dealing with the pain and just trying to keep moving seems to be the only path forward. What an awful life to look forward to!

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Research Dr Forrest Tenant. He is retired but is the arachnoiditis guru. I started taking Indomethacin from his protocol. It is the only thing that reduces my pain.

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1 reply
katcow | @katcow | 2 days ago
In reply to @carolynhughes75 "Research Dr Forrest Tenant. He is retired but is the arachnoiditis guru. I started taking Indomethacin..." + (show)
@carolynhughes75

Research Dr Forrest Tenant. He is retired but is the arachnoiditis guru. I started taking Indomethacin from his protocol. It is the only thing that reduces my pain.

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Thank you so much. Although I can’t take any Insaid medication due to reflux I am sure he has other recommendations

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carolynhughes75 | @carolynhughes75 | 2 days ago

Yes, he does. He has some protocols. I never went farther with the protocols, since the Indomethacin worked. Good luck.

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