SM and Marfan Syndrome

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

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SM and Marfan Syndrome

Postby bandlum » Wed Dec 30, 2009 10:26 pm

My 10-year old daughter had an MRI two weeks ago to look for Dural Ectasia - a common symptom of Marfan syndrome. The MRI showed several Tarlov cysts (meaning Dural Ectasia) in addition to a syrinx sac at the T9 and T10 levels. She is being referred to a nuerosurgeon (Dr. M) for further evaluation. My question for you is this...is there anyone else out there who has a child with both SM and Marfan syndrome? If so, does this affect how the SM is treated? My daughter also has mild scoliosis that they have been closely monitoring the last several years. What implications does this have for future spinal fusion surgery (if this becomes necessary)? She has physical activity limitations due to Marfan syndrome (no contact sports, etc.). What limitations are there for someone with SM?

We are new to SM so any input, words of encouragement, etc. would be greatly appreciated.
bandlum
 
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Re: SM and Marfan Syndrome

Postby sara b » Fri Jan 08, 2010 1:20 pm

Good afternoon,

I have a 10 year old daughter with SM. Restrictions are the same (No Contact Sports and No lifing over 15 pounds). The location of the syrinx is t2 to t10.

Sara
sara b
 
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