Anyone with Idiopathic Syringomyelia??

I was diagnosed with Idiopathic SM about 6 months ago after many misdiagnoses. I almost wen paralyzed before having a shunt put in December 6th. I do not have it due to an injury, tethered cord, or any malformations. I have met several people with other causes, and I am looking for anyone with the same diagnosis. All the neurosurgeons and other doctors I have seen have never seen my case before, and said it would be nearly impossible find anyone with what I have. My syrinx is around t5-t7, and I am 18 years old.

[castleton]

Hi Tim.  I also have an idiopathic syrinx.  We are a rare breed.  I was dx'd this February because of back pain that was worsening.  The doctor sent me for an MRI and voila! there was this enormous thing in my spine.  You can see a pic of mine on my profile page. I've since had several MRI's w/wo contrast and a CINE MRI.  

Like you, I don't recall any accidents in my life that would have caused this.  No tumors or Chiari or tethered cord.  I'm told it could be congenital.  I am 51.

I have not had the shunt surgery although I'm told its my only remedy.  I am sorry to hear yours caused paralysis.  Did things improve after the surgery?

I am in considerable pain, compounded by another injury to my rib cage that happened in December.  I think that injury caused my SM to start growing and/or producing more symptoms.  I am trying to sort out which hurts more, my chest or my back and how they might be related.

I am on lyrica and I am also experimenting with alternative therapies such as acupuncture, PT, vitamins.  

You should check out the Chiari Community on this website for more info on SM.

Good luck to you.