Been a long time!

So, While I'm still trying to incorporate Humor every day.... there is now a glitch in the works. I did end up going to NY, The Chiari Institute Jan 09, and was told that yes, I have an extensive syrinx throughout most of my spinal cord. (cyst in my spinal cord, along with a hemangioma at T2 and Arnold-Chiari malformation).

I had never heard of this until last year! (when I was diagnosed).

I am just so distraught, angry, scared, and disappointed that my life has turned out this way.

The myriad of symptoms I have would fill a book; as well as the feelings that go along with them.

I am resigned to the fact that the rest of my life will be spent dealing with constant pain.

I cannot possibly describe that in terms that will convey understanding to people who have not experienced some sort of trauma in their lives.

There is a very real possibility that I will not be able to walk at some point which terrifies me. I am also concerned about the hemangioma I have in my T2 vertebra. This can burst causing a whole terrible range of problems, even more so, this particular area has nerves that run through it that regulate my heart/lungs.

While none of us ever knows the future ..... we usually can plan it with a small sense of security that all will be well.....

I would also like to add that since I was diagnosed with this condition, 99% of my family members do not speak to me. Not only am I dealing with this condition, I am ALONE dealing with this condition. Which translates to feeling like nothing matters any more.

I have made a few really dear friends from the support group at ASAP.org. Great community as it was when I joined last year.

Syringomyelia is rare; there are people that have it and don't know it and they have no symptoms. There are people like me who have it and are miserable. There are people who have it and it does not bother them that much...

I am not one of the lucky ones.