Hi all,

I have a couple of questions for you seasoned SM's! Is flying okay when you have a syrinx? We have family in Florida, and sometime I would like to go see them. Also, because I am(was) such a big gardener, what thoughts would any of you have on how to do this safely? I know what not to do, but I am looking for creative ideas here, so my yard isn't full of weeds this summer. I also run a business out of my home, so I like my yard to look nice. Other than starting out slowly and…

Just when I think I have learned how to accept this crazy condition, I had my annual doctor's visit to monitor how things are progressing. I've known all along that my surgery was not the  success I had hoped it would be, and that my syrinx was again enlarging. I know it sounds crazy, but I can literally feel it sometimes, like a pounding deep inside me. So I was prepared for that news, and the usual glossing over of my list of symptoms. What I was not prepared for was my doctor's…

Hi, I went to UNM and saw their neurological team and felt they minimized my symptoms.  My syrinx is 2 mm and I was told it was small.   Did you go to UNM?

Hi Tinely, Please keep me posted on your UCLA visit.  I am planning on scheduling an appointment in March and would love to receive your feedback.  Live in NM, and am seen as a rare species with this SM.    We just have to take it day by day, it can be very scary but have to try to remain positive.  Best wishes :)