Hi MsTB
Welcome to NeuroTalk

.
I hope that you will find the community as knowledgeable and supportive as I have.
You could share your story in the Spinal Disorders forum (
https://www.neurotalk.org/forum22/). Other members should be able to offer you support and helpful suggestions. When I searched that forum for "Tarlov" I got 24 hits - the information in them might help you.
Another option is to post in the General Health Conditions forum (
https://www.neurotalk.org/forum2/). When I searched it for "Tarlov" I got 3 hits though none of them are recent.
Best wishes.