Chronic Pain Support Group

Hi Everyone,

Just wanted to let you all know that I have found a Doctor to look at my back, found out that i have tarlov cyst (2 of them ) I go June 20th and then we will schedule surgery. Maybe in September. This is a really rare disease and not alot of doctors treat them. I still have chronic pain all the time and i am still sleeping alot. Not much energy but wish i could get on here more. Hope all is well with everyone!!!!!

Tammy

Tarlov cysts are called perineural cysts I do beleive,and I have one also,on my lumbar. No one had ever mentioned it to me before,until I recently went to the chiropractor. I brought my most recent MRI with me,and he brought the cyst to my attention. On the MRI they call it a perineural cyst,but I looked it up on webmd,and found out they are called tarlov cysts,usually filled with spinal fluid. I havent spoken to my DR. about it yet,but I am planning on it. Good luck with the surgery,I hope they can alleviate your pain.

Hi! I too have a Tarlov Cyst! I am going to the only surgeon I know of who happens to be a top-neurosurgeon here in the U.S. in dallas, Texas. He also has an office in Kansas. His name is Dr. Frank Feigenbaum. I am really excited. I live in California so I will be flying there and will see him on June 21st. I am bringing all my information, MRI's, results, and pain diary to discuss with him. I am also currently working on an SSDI case, as I am unable to work. Many people I have connected with that have this disease also cannot work. There are two groups that I know of on Facebook that are wonderful support groups, Tarlov Cyst Disease Awareness: https://www.facebook.com/groups/157071409314/ and Tarlov Cyst Disease: https://www.facebook.com/groups/Tarlovcyst/

I look forward to talking to you both more about this disease and answer any questions you may have, as I have had pain for over ten years and used to be in the medical field, so I can possibly help you out. Thanks for reading and God bless,

Sincerely,

Rrobinson

Youza! I'd not heard of this before, until you all mentioned in your posts. It sounds Extremely painful!

Tammy- I hope your surgery goes well. Please keep us informed on how things w/the docs are going, when the surgery does get scheduled for sure, and how You are doing. We'll be thinking about you!

sunnydays- You take care of yourself!! Hopefully, you have a good treatment plan in place.

Rrobinson- You, too, please keep us informed. I hope everything works out for you.