chiari malformation, anyone else?

[Guest guest]

My daughter Abigail, 10mo. wcf, has a chiari 1 malformation. Her

cerebellum is extending down into her spinal column a few mm. I

guess she just has too much brain to fit up in her skull where it

belongs. Ha, we knew these kids were smart. Seriously however, this

results in pressure on that part of the brain and decreased spinal

fluid flow in that area. The cerebellum is responsible for many

basic functions, including swallowing. So now the doctors believe

that Abby's swallowing problems may be related to the Chiari

malformation. They want to do surgery to decrease pressure in the

area. They believe that this may improve her swallowing. Yet, Abby

does not appear to be having any other symptoms due to the chiari.

Therefore, the only benefit to doing the surgery would be

the " possible " correction of the swallow issue. I realize that

correcting her swallowing would be a very big deal. As she has

already had an upper right lobectomy, I dont need to be reminded how

serious a pneumonia can be. However, here is my problem. I read

about many many cf kids with swallow issues. Exactly why our kids

have these swallowing difficulties seems unclear, but it seems

unlikely that they all have a chiari malformation. So I am not quite

sold that this chiari malformation is the cause of Abbys swallow

issues. Does anyone know of cf and chiari being linked in any way,

or why else so many of our kids may have trouble swallowing? Does

anyone else have a chiari malformation? How uncomfortable is it to

live with? Has anyone had the surgery? Was is worth it? I would

greatly appreciate any info. Thanks, Toni