Chiari Malformation---anyone?

[WheeledTraveler]

I have two daughters with Chiari malformations. One has had surgery the other has not. Our neurosurgeon says no way to roller-coasters and other big rides.
My girls also have Ehlers Danlos Syndrome so they have instability in their necks. One of my daughters is already fused.
I would say no ride is worth your safety and/or health.

Not strictly relevant to this thread, but are you on Facebook? (I'm only saying this because if you are, I think I may share some Facebook groups with you)

~Penelope

 

[Panotchr]

Yes, I am on FB. My daughters see Dr. Henderson.

 

[kathleendsm]

Oh my goodness, my little guy (4 years old, chromosome abnormality, apraxia of speech) was just diagnosed with Chiari type 1 the other day. I don't have anything to share, but am hoping to gain some knowledge. I did see on one thing that roller coasters aren't recommended, so we'll probably keep him off them unless his neurosurgeon (which we're still trying to find) recommends different.

It's nice to see lots of Chiari patients posting. Right now we're pretty overwhelmed and scared, and aren't sure exactly what symptoms DS has that might be related. His balance isn't good, he has some drooling issues, but we don't know whether he has pain or how much. I don't know whether he'll get decompression surgery or not.

 

[torinsmom]

If I was diagnosed and had not has surgery, it would be a no-brainer since it could make things worse. After surgery, I think it is more subjective based on the individual person.