C1 Removal and Restrictions

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

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C1 Removal and Restrictions

Postby Gina217 » Thu Apr 08, 2010 11:37 pm

Hi. I'm new here. My son was diagnosed in January with Chiari I at 15 mm. After taking him to 5 neurosurgeons, three rec ommend surgery. Two of the three say that there are no limitations at all after surgery, even with the removal of C1. The last surgeon we saw said that there are restrictions, such as no contact sports. We asked about baseball specifically, and he said that my DS will never be able to play again. Have you been told the same thing? My son wants nothing more than to be "normal" and that is all we want for him. Baseball is his life, as are amusements parks and being an avergage, everyday 10 year old boy. I am devastated to think baseball and rides and everything else will no longer be open to him. Please tell me what you have heard.

Thank you.

Jean
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Re: C1 Removal and Restrictions

Postby lttutrow » Fri Apr 09, 2010 12:10 am

Hi Jean,
My son is now 11, and his decompression involved removal of the back of c1. Each nsg. seems to have their own idea of what is acceptable after surgery and what is not, and each child's condition is different too. Our nsg. told us no football or wrestling, and no activities like jumping his skateboard or bike or things that it is likely he will fall and hit the back of his head. With a helmet he can still skateboard and bike, just not jump them. He does continue to play basketball and golf, and his favorite sport is baseball. Running used to be fun for him, but that usually causes him to be so uncomfortable that he doesn't do much of that anymore. He also rides rollercoasters, which she told us was fine.

That said, we've found through trial and error that these almost always irritate his symptoms. Right now, he is choosing to endure the icky feelings that result for the fun he gets from participation. We usually let him be the guide unless we can clearly see he's already having a bad day and is trying to push through to do the activity anyway. We've found through trial and error that trampolines and things like bumper cars cause such bad days that they aren't worth it to him. Some days he just doesn't feel well enough to do anything at all, but as long as he wants to continue to try participating in things, we let him. My daughter is doing some physical therapy to regain some mobility she lost in her neck after surgery, and she has been able to participate in volleyball, basketball, and horseback riding still. For my son, the horseback riding is too uncomfortable.

I really do understand what you mean that he just wants to be a typical 10 y.o. boy, we say that a lot ourselves!!! For us, it's a matter of balancing that out with how he is feeling so that we can maximize his energy. We've also explored avenues we may not have before, like art classes, and he's developing new interests that are more comfortable for him.
I hope this helps,
Lori
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Re: C1 Removal and Restrictions

Postby Sara » Fri Apr 09, 2010 11:12 am

My daughter has no restrictions because of her decompression. You can't get two doctors to really say the same thing on this topic. There seems to be a wide range of opinions of the matter. But most of course will say don't do anything that causes pain or increase in symptoms,
Sara
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Re: C1 Removal and Restrictions

Postby Gina217 » Sat Apr 17, 2010 8:21 am

Thank you for your responses. They were very helpful. I think we will take some of what the ns says aNd combine it with our own judgement and trial and error since there are so many opinions on this from the doctors. My DS is having his decompression with probable duraplasty on May 13th. Wish me luck and good luck to you both as well!
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