Author Topic: A new ballgame?  (Read 7742 times)

Dawn

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Re: A new ballgame?
« Reply #15 on: February 19, 2009, 12:44:53 pm »
Hi,

Just read your new worries...I am so sorry to hear that, I just wanted to say Hi and that I wish you lots of luck in figuring it all out.

So I guess after all the appointments in the city you thought you were going to have a better idea on which way to go, now seems like your even more confused....this seems to be the pattern with this condition we all share.

Good luck, PM me if you want to talk

Dawn
Diagnosed 12/08...4mm Left AN in IAC...Wait and Watch for now...Next MRI scheduled for 8/09 Doctors not sure if its AN, Lipoma or Hemangioma????

Also diagnosed with Chiari I Malformation - looking into options for that

sgerrard

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Re: A new ballgame?
« Reply #16 on: February 19, 2009, 10:11:24 pm »
I read somewhere that 50% of all statistics were made up out of thin air anyhow.  ;)

Ooh, I like that one. I will be quoting you. :D

1. The goal, and reasonable but not guaranteed expectation, of radiation treatment is indeed lifetime control of growth.
2. The effect of time on regrowth rates is simply that the longer you wait, the more of them will regrow, reducing the percent that are controlled. The principle applies to any form of treatment, including radiation and surgery.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: A new ballgame?
« Reply #17 on: February 20, 2009, 03:42:41 pm »
Hey Laura,

You have not been confirmed as NF2, right? Possible "mosaic" but no confirmation of add'l growths, correct?

I'm trying to follow along and want to make sure I have my info correct, nothing more....

Hang in there! BTW, you are asking fabulous questions... and hoping everyone's responses are helping.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

allegro17

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Re: A new ballgame?
« Reply #18 on: February 20, 2009, 05:53:34 pm »
Hi Phyl,

Correct, I haven't been actually diagnosed with NF2.  My AN is unilateral.  I had one doctor strongly suspect that I could be somatic mosaic. 

Everyone's responses are helping tremendously!  I just happen to be the world's worst over-analyzer/decision maker :)

Laura

sgerrard

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Re: A new ballgame?
« Reply #19 on: February 20, 2009, 10:49:33 pm »
I just happen to be the world's worst over-analyzer/decision maker :)

Maybe since the last one, and until the next one comes along. :)

I work with people at work on technical software, and some are prone to over analyze. They drive me crazy some days, but in the end, I like them better than the ones that don't pay any attention to the details. It does pay off, even if it is exasperating half the time.

Along with all the statistics and claims and facts, ANs also come with a big old spoonful of maybe. Once you realize that you will never find a perfectly definitive answer, you will find that you can take into account what you have learned, find a comfort zone and a gut feeling, and come to a decision. Just wait for it.

Some days the fall of 2007 seems like any other fall to me, the usual raking leaves and changing the furnace filter. Other times I think it is just nuts that I went and had my head zapped with x-ray from a giant robot arm. How did I wind up doing that? It is a pretty unusual situation to be in, and a pretty unusual decision to have to make. It should be no surprise that it is not easy.

Steve
« Last Edit: February 20, 2009, 11:10:00 pm by sgerrard »
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.