looking for some info/advise on Syringomyelia UPDATED!!

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Re: looking for some info/advise on Syringomyelia

Postby Lipper5 » Mon Feb 08, 2010 1:53 pm

Why did he say run like Hell? Just wondering because my son had a shunt placed on Wednesday.

Krista
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Re: looking for some info/advise on Syringomyelia

Postby DanielleC » Mon Feb 08, 2010 10:15 pm

Thanks Sara...
It drives me CRAZY that Chiari's and Tethered cords can be so subjective. Who do you see at TCI?? Once we get the new MRI and I going to bring everything there.
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Re: looking for some info/advise on Syringomyelia

Postby memom » Tue Feb 09, 2010 7:38 am

My daughter has syringomyelia also. She is having many complications so I am always looking for infor and advice too. Recently, I was on "Pub Med" searching publications about this condition and came across a study published in 2008 by Dr. Gilbert Sindou at the University of Lyon, in France. You can go to "Pub Med" for and search his name, the study will come up. He found that shunting does not appear to work as successful treatment of Syringomyelia. His study is small but noteworthy.

Dealing with this condition is soooo hard. On one hand you want to try anything to make things better, but on the other hand the cure can be as bad as the disease. There are no easy answers for those who fight this. I hope for the best for you and your family and wait for a day when someone can solve this puzzle.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: looking for some info/advise on Syringomyelia UPDATED!!

Postby DanielleC » Wed Mar 03, 2010 4:45 pm

Thank you for all the info!
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