Whtiney's-More ?/MRI results LONG

[Guest guest]

Hi all,

Whitney had a MRI done that I previously posted the results as

showing a possibly additional syrinx. It seems that it was artifact

thank goodness! I sent the MRI to the NSG and he felt the same. He

couldn't see anything on the MRI to show there was a problem that

would be causing any of her symptoms. Her post surgical symptoms

that have returned are:

Nausea with and without association to food.

Headaches with and without assocation to nausea.

Fatigue- sleeps alot

Irritability- comes and goes.

Now they said to have her Ped guy look at her..he already did and

said he thought it was due to CSF blockage..that's why he ordered the

MRI. Will a normal MRI show this or does she need a flow study to

determine CSF flow blockage? He also wanted a GI workup. Other

notes are that she is better somewhat but her activity level has

dropped since they can't go to school due to the icestorm here. So

she hasn't been playing basketball either. Still has nausea,and

fatigue. Irritability is not as bad but still present. THe ped guy

also said he thought he saw something " laterally " when he looked in

her eyes and that question still hasn't been answered. My question

is do I take her back to NC to see the NSG now and get a flow study

or do I wait and go through the GI stuff that I am sure it isn't.

She takes Tigan daily to control bouts of nausea. Help me out you

guys!! I depend on your advise. I have an appointment to go to Duke

on the 16th, but if I go for this Thursday I can get my room paid for

for the 2 through 6th because a coworker is going there to learn

about cardiac rehab and they said WHitney & I could stay with her.

Has anyone had a blockage that didn't show up on regular MRI and what

were your symptoms? Thanks again, I love you guys....Happy holidays,

Nanci in Oklahoma

Mom to Whitney

decompression 6/21

laminectomy C1/duraplasty with donar pericardial graft/cerebellar

tonsil cauterization

[Guest guest]

Nanci,

From our experience and from what I've heard on this list, it doesn't

seem that CSF flow studies are really well understood by many, if not

most, doctors in Chiari cases. They often deem the flow as normal when

it may be significant to symptoms (this is relatively new stuff). We

had 2 radiologists and one neurosurgeon tell us our daughter's CSF

flow study (CINE MRI) was normal. Dr Milhorat and Dr Frim said there

were CSF flow problems - she was very symptomatic. Dr Milhorat didn't

see her CINE MRI but was able to confirm CSF flow problems on

T2-weighted MRI (CSF is white - T1-weighted MRI shows CSF as black).

Decompression surgery alleviated her many symptoms.

Therefore, the bottom line is get an expert to review the flow study

if you want to be sure.

Eurico

> Has anyone had a blockage that didn't show up on regular MRI and

what

> were your symptoms? Thanks again, I love you guys....Happy

holidays,

> Nanci in Oklahoma

> Mom to Whitney

> decompression 6/21

> laminectomy C1/duraplasty with donar pericardial graft/cerebellar

> tonsil cauterization