Hi
I am a young 51 yr old from the Uk who is hoping to meet people in the same situation as me, as family and friends find it very difficult to understand.
I am hoping to hear from fellow sufferers of this condition, was diagnosed in Jan 08, after 12-15 years of hell, at least the jigsaw pieces are falling into place the more i find out. I have seen my first neurosurgeon, and now will have a full spinal MRI scan next saturday and then i will be seen by the NS's on May 28th for the rest of their findngs. I was told the large multiple cysts seen in the sacruum were due to a RTA in 1991, were i sustained multiple fractures of my torso, but 7 major one in my pelvis. Also i have multiple cysts sen on my lumbar and t9-t10 .
Surgery is not being suggested as they seem reluctant to operate unless it's the last resort?
Any feedback would be great
Cheers
Christina::

Hi Petticoats! Welcome to NeuroTalk!

Here is a link to our forum about Tarlov cysts, feel free to join in anywhere:
http://neurotalk.psychcentral.com/forum73.html

I wanted to welcome you to the group.

I don't know anything about the tarlov cist but I'm sure you will learn a lot about them on the forum and you will meet a lot of good people here to help you through what you are going through.

Again, welcome,
Ada

Hi Petticoats! Welcome to NeuroTalk

Hi Christina and Welcome to NeuroTalk. Hope you take a look around and make yourself at home here.

My goodness petticoats, 12-15 years is much too long for anyone to have to suffer from something so painful. My heart goes out to you in recognition of what you must have gone through.

Good luck with your MRI. If you haven't had one before, they are rather noisy, but hopefully you'll be able to listen to some nice soothing music while it's happening.

I hope all goes well when you see the neurosurgeon. Let us know how you get on.

In the meantime, welcome to NeuroTalk from me as well. It's lovely to meet you petticoats, and I'm glad so you found us.

Hi christina
ponyrider here i to am from the uk notts i havent herd of your condition before but have two boys with neurofibromatosis type 1 meaning tumers on the nerve endings Just wanted to let you know that you dont have to go it alone Myself and a whole host of people are here for you should you need a friend that understands what you are going through. regards laura.

Christina,

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