Welcome Weemorgan, Glad you found your way to us. As you might have noticed our board crashed and is just back up and running today.
Where is your syrinx and what kind of symptoms are having? Yes, the first thing to do is educate yourself. B/c this is so rare you have no choice but to become educated yourself so that you can advocate for yourself to find the best possible care.
Syrinxes are
caused by something. You need to get to an expert in the care of sm and work on finding out what caused yours. Once you know the cause you can work on trying to alleviate it. If you let us know what city you are close too someone may have a suggestion for a ns to go and see
I'll give you a few of my favorite sites to start with
www.thechiariinstitute.com click on the videos tab and watch any of the videos that interest you. These are really great.
www.conquerchiari.org has great research articles that are broken down into everyday english making it easy to understand. Just click on research articles in the middle.
And the ASAP homepage also has a lot of great info too.
Again, welcome to the board and if you have any more questions, please ask.

Caroline