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[Guest guest]

has had alot going on here lately. Just an update. Her " new " front of

the head headaches have gotten worse. Has had two in the last month or so

that were bad enough that would send one to the emergency room. ( was

decompressed summer of 98 then had her dura opened two months later)

We just saw a new NSG here in Atlanta. Her other one had moved away and then

we went to August to see one which I was very pleased with. I just didn't

want to have to go out of town if it wasn't necessary. So this new one just

filled the empty position.

I was quite pleased with this visit and the NSG. I would like to recommend

this NSG, but want to wait and see how things go in the next few months. He

seems to be looking at the entire picture with and not just the

Chiari or not just her other problems.

First it was his decision to have another MRI even though it's only been six

months. No begging to get it. This will be the most thorough one. MRI (of the

brain and complete spine) with and w/o contrast, Cine MRI and plain xrays. It

seems that has a bigger problem than just a small posterior fossa.

Her entire skull ratio is too small for her brain (she has craniofacial

abnormalities). He is not sure that a bigger decompression will help her due

to the small skull ratio. To try and correct this would involve a cranial

vault reconstruction. That is a biggy and not sure if I would ever want to go

in that direction unless things get much worse and there is no other

alternative.

After has this MRI at the end of the month, we will be probably

scheduling to have an ICP monitor inserted. I didn't want to originally do

this when the NSG in Augusta recommened it, but it seems this will be the

only way of telling if is having high pressure. He will not be

adjusting the pressure just reading the levels. It seems her shunt (from

birth) is not quite positioned right and because she has had it for so long

(almost 18 years) it may need to be changed. And then there is the possiblity

we will be changing her dura graft (bovine).

This NSG has also said that he doesn't think that could tolerate a

fusion. This is more to do with her being a special needs child and not being

able to tolerate this with a halo after. She has big problems holding her

head up since her decompression.

I have come to believe that there is not going to be anything to help

. I am tired of all the " try me " procedures that don't work. Dawn, I

do understand your feelings of helplessness in dealing with a situation that

you have no control of. Never thought I'd get to the point where I couldn't

find some solutions for . This really su#ks!!!

I am presently waiting for 's occuplastic surgeon to call me back with

a surgery date for some eye surgery and possibly some coordinated sinus

surgery at the same time. Surgery number 37 on the way!

Would also like to welcome any new members and many good thoughts and prayers

for those that are still having problems and wish the best for those that are

doing great. I have major burnout right now, but do still read most of the

mail. I don't feel like I have anything to offer in the way of help for

others right now - I can't even help my daughter. But I do think about all of

you each day.

Tory ('s mom)