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Just wanted you to all know the latest on .

> and I went into NY yesterday for further chiari/sm testing. She had

> to go through a spinal tap (with no anesthesia --- and she was absolutely

> wonderful --- wish I could have had the anesthesia). While they performed

> the tap -- for about 2 2/1 hours, they took continuous pressure readings

> of her cord and discovered that her pressures are extremely high. Dr.

> Kula figures that she has an open pressure of at least 250 -- normal is up

> to 170. She then proceeded to go just under 500 at times.

>

> They then gave her a radioactive material into the spine and are following

> her with special nuclear medicine screening for the next three days. Her

> MRI of two weeks ago show that she is once again having trouble in the

> neck region (from compression of the brain stem) and that her flow of

> spinal fluid is limited.

>

> Dr. Kula called about an hour after we returned home last night and stated

> that will definitely need shunt surgery. This is where they put a

> tubing in the ventricles of the brain and drain the fluid elsewhere in the

> body. He is not sure if the neurosurgeon would want to do anything more

> than this at this time. He thinks the neurosurgeon is going to jump in

> and perform this neurosurgery by next week.

>

> This doesn't leave us a lot of time --- which has its benefits.

>

[Faith] I am assuming that she will be admitted to Northshore University

Hospital on Long Island for this procedure. Dr. Milhorat is her

neurosurgeon.

> is pretty comfortable at this time and doesn't know about the

> upcoming surgery --- no need to worry her any earlier than necessary.

> Please pray that she accepts this easily because she is so proud of her

> long hair --- don't blame her because it is the first time it is so long

> --- mid back region. I am going to talk with the neurologist this am and

> see if there is anyway around shaving her entire head. It would make life

> so much easier. Just in case, we are going for those wonderful family

> pictures this weekend.

>

> We will keep you updated as we know more. Thanks for being there and

> always remembering in your thoughts and prayers.

>

> Faith

>

[Faith] : three decompression, odontoidectomy, spinal fusion, halo for

four months, dura plasty, revision of the dura plasty, titanium plate

insertion, g-tube fed and one very special young lady.

>

> ________________

> & Faith Webb

>

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