MDJunction - People Helping People
 
Ask a Question
05/31/2011 07:54 AM

TARLOV CYST DISEASE

tammyb2
tammyb2  
Posts: 146
Member

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

Reply

05/31/2011 06:58 PM
sunnydays
sunnydays  
Posts: 637
Member

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.

06/09/2013 04:56 AM
Rrobinson
 
Posts: 7
New Member

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


06/10/2013 11:35 AM
fibroforever
fibroforever  
Posts: 4248
VIP Member

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

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.

Reply

Share this discussion with your friends:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved