NCC? surgery scheduled & update on almost 1 year post op

[Guest guest]

Hello Group,

I have scheduled surgery for April 2, 2001 with Dr. Weingart at s

Hopkins Hospital in Baltimore land. We live in New Jersey. Apparently

I am in a black out or hands off zone...

It was quite by accident that We found Mr. Chiari. My daughter was dx'ed

first. She was born with many other problems, and I wasn't satisfied that

we were truely at the root of all of her problems. So off to the

neurologist we went. The only real clue that there were more problems was

her attitude and behavior sliding.

She usually is pretty cheerful even in light of the fact that she has pretty

much been a pin cushion for the medical community since birth. She never

consistently complained of headache/dizzyness unless we asked her what was

wrong (she only infrequently complained of car sickness), but she was

becoming more and more tempermental.

Her MRI (November 1999) showed a 5-6mm herniation of the cerebral tonsils

past the foramen magnum. The Doctor called me in December with the news,

and we proceeded from there... Her surgery was scheduled and carried out on

April 13, 2000 (She was 9 years old). During the proceedure the Dr. noted

that the MRI did not give the complete picture. She was more compacted than

what was noted by MRI. She went into the surgical suite at 9:15 am and we

saw her in recovery at 12:40pm.

The first thing she said was - Can I get out of bed now? She was in a " step

down unit " for another twenty four hours, and a post surgical recovery floor

for three more days. She was out of school for a total of twenty days.

When she returned to school after twenty days - for the remainder of the

year she was not allowed to attend gym or playground accitivities.

She returned to school (third grade) this year, and is doing wonderfully.

She exclaims, " I feel better than I ever have " . She asks for seconds, and

thirds when eating (food was a battle ground since birth with her previous

to this surgery). She has energy now that she didn't have before... She

has told me that she has had a couple of headaches - and then says - but

nothing like before the surgery! She says: The surgery is the best thing I

ever had done! To me for a 10 year old to say that about skull/brain

surgery - that says alot.......

I had the " runaround " that so may have in getting a diagnosis for Chiari,

and was told point blank by a geneticist that wrote a paper on the

coincidence of Noonan Syndrome/Arnold Chiari Malformation that Doctors will

be looking at a Chiari on films and blatently dismiss the symptoms of Chiari

because 'they' don't 'believe' in it.

I had one very reputable " expert " tell me that he thinks that people who

have the surgery and have reoccurent symptoms - he believes they are

experiencing " placebo effect " . I looked right in his eyes, and said: " Come

on - you can't possibly tell me that kids are experiencing placebo effect -

They don't even know what placebo effect is! " . He then - had no

response.......

The plain and simple truth is there are still a lot of mysteries left

unexplained........

I hope in my case - I can follow my mentor (my daughter) to health, and

happiness.... Not as fast mind you, because as she frequently reminds

me - I'm old (33 y.o.) - haha.... I thought I was supposed to be her mentor

?!?!?!? Life is soooooooo paradoxical!!!!!!!!!!!

You have been a great group of support to a lot of people. A light where

there is darkness....... Keep up the great work!!!!!!!!

Hugs,

N --->ACM 1/spina bifida oculta at S1, mom to 10 years Noonan

Syndrome = heart, eye, gastro/growth, bleeding dx'es and ACM 1 successfully

decompressed 4/13/00 Dr. Carson - and loving life!, and Glenn 12 years ACM 1

'anatomic minimal herniation (2-4mm), but symptomatic'...in South Jersey...