- Syringomyelia
- Interviews
Janet's interview
How did all start?
Started about 1998 a few years after a car accident. I was diagnosed in 2007 with Syringomyelia. The syrinx is from my T5-T8 and is so wide there is only about a 1 mm opening on either side. I had s CSF flow and it showed normal flow. I have also had two spinal taps, more MRI's than I can remember,,and EMD testing. The syrinx has separated into three cavities. My symptoms are progressing and now I am losing feeling in my right foot. I have been to John Hopkins, Chiari Institute on Long Island, University of Maryland, and UVA. I am now in a clinical trial at NIH in Bethesda, MD. I have found that no one knows a lot about this disorder. Has anyone found any doctors helpful?
For what medical specialties have you been treated? What has been the most useful specialty for your?
Syringomyelia. NIH in Bethesda, MD has been most helpful
What has been the most useful thing for you so far?
I take clonezepam 2-3 times a day and cyclobenzaprine at night. This has helped the most because I am a teacher and can't take pain meds.
What have been your biggest difficulties?
Losing feeling in my right leg and having double vision in my right eye
How has your social and family environment reacted? Have your social or family relationships changed?
Fiancé dumped me. Finally met a guy that has been with me for 9 years and will do anything to help me. My family fully supports me.
What things have you stopped doing?
Anything active. I can't even vacuum!
What do you think about the future?
Scared. Worried about having to use a walker or wheelchair!
So far, which years have been the best years in your life? What have you done during them?
My parents are trying to take me to see as much of the world as possible. So blessed to have them!
What would you like to do if you didn’t have your condition?
Live my life!
If you had to describe your life in a sentence, what would it be?
Painful and hard, but I am still grateful and hopeful!
Finally, what advice would you give to a person in a similar situation?
Live your life to the fullest!
