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Re: xrays and nf2

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Hi Sheila, I can't speak to the effects of x-rays on nf2, but when you mention

that the

results from the CT are not telling you guys what's going on, I think that's a

strong

reason to push for an MRI. --or at least it's been my experience that the docs

can tell

what kinds of tumors are in there from an MRI (and get a detailed picture from

multiple

angles), whereas a CT is good for getting a cheap, general picture of stuff

(like

immediately post-op).

How is feeling?

Were there any signs that prompted you guys to go in for the initial scans? I

think I

remember Vicki's Anne having a large abdominal tumor... I'm not recalling anyone

else.

If anyone gets a chance, I'd be interested in whether there were any early

warning signs

that these things were there (perhaps things you just kind of write off when

they

happen, but looking back you realize they were signs).

Thoughts of Strength and Healing to you and ,

King wrote:

> has any one any info on the effects of x-rays on nf2?

> martin has an abdominal tumour which CTscan shows may be malignant.

> biopsy under another CT was insufficient sample.

> now 6 months down the line they want to do another CT,but he would prefer an

> mri because he believes that all these xrays are damaging to an unprotected

> nervous system.

> any info would be useful as " ammo " in his defense !

> this request is quite urgent as the apt. is on thurs.

> thanks

> Sheila

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In a message dated 5/2/01 6:55:18 AM Pacific Daylight Time,

.L.Przybysz.3@... writes:

<< o >>

and Sheila,

I read these posts and am wondering how is doing? I regret anyone

having an abdominal tumor because they are difficult especially to

recuperate. My daughter had 3, 2 weighing about 14 lbs. were removed. the

third is still with Anne and is the size of a soccer ball. It is attached to

the Pancreas, the kidney, etc. so they tried to clean it out, it was too

vascular, and she needed 7 pints of blood to bring her back. It has been

about 16 months since the surgery and Anne is finally getting her strength

and walking ability. Due to complications which are ordinary with abdominal

surgeries, rehab is slow and long. The 2 tumors removed rather easily. It

is just the fluids, the blood etc. If I can help any way, please write.

Good luck. Vicki

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