Just learned my daughter does NOT have syrinx

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Just learned my daughter does NOT have syrinx

Postby johanna » Tue Nov 25, 2008 6:32 pm

As you all know in order for any of you with a syrinx to see a neurosurgeon that has experience in syrinx you need to travel as there are only a handful of dr.'s that specialize in it. In pedi. neurosurgeon and syrinx there are only FOUR in the US. So I had to go out of state and returned 2 weeks ago. My daughter does NOT have a syrinx. 2 neurologists, one orthopedic and 2 radiologists read her MRI of the spine and said there was a syrinx and so dx her with syringomyelia. But the neuro who is a SPECIALIST in this that we took her to in the other state who is cheif of neurosurgery and teaches other neurosurgeons said there is NO syrinx. Great news huh? We are so happy for her that her prognosis is better as what she has it not progressive. If it was the syrinx as you all know that in most cases is progressive. Although she will have challenges for the rest of her life...we are just happy to hear the syrinx is out of the picture.
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Re: Just learned my daughter does NOT have syrinx

Postby wendi » Mon Dec 01, 2008 9:20 am

That is great news. Once you have sm, you really suffer, I am so happy for your daughter!

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: Just learned my daughter does NOT have syrinx

Postby Janice » Mon Dec 01, 2008 11:13 am

I am also happy to hear this great news.

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

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