Quote From: faith1106Hope im in the right place, my nephew has recently been diagnosed with a very rare spinal disease, called idiopathic syringomyelia. We live in Alberta Canada, this condition is very rare and confussing. Im writting to Dr.Phil because i believe he has the answers and connections to so many things. This is tearing our family apart. We have faced many downfalls but never anything this unkown. I am writting in desperation , any help, facts, please help.
Hi I also have syringomyelia have had it since age 18 it went undiagnosed for 8 years , and now at 36 I am still suffering with the issues it causes. How old is your nephew? Does he also have Chiari malformation? I do not but it is pretty common with SM. There is much information out there on the disease itself but nothing in terms of how to cope with it. I have had a cervical lamentectomy and durotomy to relieve the pressure on the cord, it did nothing for the symptoms. I am still progressing yet thankfully very slowly even tho the size of the syrinx has not changed. If you would like to write me an email I would be happy to tell you what I know of this disease . The fear of not knowing what this disease is about is far worse than knowing the facts. Keep your chin up and please feel free to write, I will let you know what meds I take and what I have found to help.
Best Regards
Pamela aka trixiemay
trixiemay@charter.net
