Lillibet
 

Hiya ,

First message to be posted from me !!!!!! Anyone out there with Tarlov spinal cyst ????? Sounds naff, but what are your symptons? I am newly diagnosed after 2 years and 2 useless ops with an orthopaedic surgeon, now have to start again with a neurosurgeon, I am from the UK, NHS waiting lists are long, thought I might find sanity here !!!!!!!!!! ?? Poss ?

Hi Lillibet and welcome to NeuroTalk! :welcome_sign: I've posted the link to the Rare Diseases Forum where there is a sub-forum for Tarlov Cyst.

I have MS so I don't visit that forum often but I'm sure you'll find some friendly and supportive people there. Please feel free to join in on any forum you feel comfortable on, though. There are a bunch of wonderful people here! :)


http://neurotalk.psychcentral.com/forum87.html

Hi there Lillibet. What a cute name that is.

Welcome to NeuroTalk, and as herekitty said, you'll meet some wonderful people here. Have a look around, and join in where ever you feel comfortable.

Lillibet,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hello lillibet and Welcome to NeuroTalk. Please browse around and make yourself at home. Glad to have you with us.

http://dl4.glitter-graphics.net/pub/...b42v666z9w.gif

Hi, Lillibet! :Wave-Hello: Welcome to NeuroTalk!

We have a great bunch here, I'm glad you've joined us. :)

Hi Lillibet

Tarlov Cysts are not that rare, in fact about 4% of the population has them. I liken them to a balloon in the sidewall of a bike tire. When CSF pressure spikes up the balloon expands, pinching the nerves around it. Most drain out quicly after they fill, causing short term discomfort. For some of us the cysts stop draining and cause chronic problems. It sounds like you are in that category.

Last year a Foundation was organized to conduct research and educate docs. Sadly most don't understand TCs so most remain undiagnosed or dismissed as non-symptomatic. You can learn a lot about TCs from them. Google tarlovcystfoundation for them



Good luck with it.