Tarlov Cysts: Suffering with severe symptoms, what helps?

Posted by tarlovcystshelp @tarlovcystshelp, Sep 29, 2023

I was in a car accident recently and it caused "multiple tarlov cysts" no exact count or size, however I am one of the unlucky few who suffers severe symptoms, full body numbness, including internal organs such as stomach, bowel, bladder, I have minimal sensation in my skin for temperature changes, touch, etc. I of course do not have health insurance, and the at fault party's insurance caps out at 25000$ which has already been chewed up through medical testing. (the er dr did not even mention I had these cysts I had to discover on my own looking at my MRI report, I am sure he had no clue what they were or that they could cause THE EXACT SYMPTOMS I was at the hospital for. I am in Tampa and was wondering if there are any clinical trials or something I can do to get relief. I am horrified because from what I have read and what the one neurologist I spoke with said, leaving them as is can lead to long term nerve damage as well as bone decay and potential paralysis!!!

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Profile picture for westcom @westcom

I’m sorry for your pain Keep searching for answers. I have a small Tarlov cyst that causes minor problems compared to yours. I have done considerable research and can share a number of resources with you. I will send you those via private message. Johns Hopkins has a Tarlov Cyst Program and clinical trials. For starters, Look up The Tarlov Cyst Foundation and join the National Tarlov Cyst Facebook page where you can learn from other’s experiences.

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@westcom Thank you for that information.

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