had GK treatment

June 15, 1999

Hello Lex,

Congratulations on your GK treatments. I also had GK treatments done to me

about 3 years ago with an AN on the right side of my ear. Unfortunately, I

had already gone deaf with that ear because the tumor itself was about 3 to

3.5cm. The doctor had told me the GK treatment had an 85% success rate

because the size of the tumors, so I went with it. From what I've been told,

the smaller in size the tumor is, the greater the percentage of success GK

treatment will work, and the greater the percentage of preserving the

hearing. As for increase tinnitus, I also had experienced this. I can't tell

you if it will wear off with you, but it has dimished with me. Or maybe I

don't notice it as much as before? I still get tinnitus no matter what.

Sometimes they get really bad when I'm stressed or drink a lot of coffee.

The good news is that the tumor that have been GK'ed showed signs of

necrosis (dying) after the 6th month MRI. You could actually see little

'blackspots' in the tumor itself. Within 3 years, the blackspot got bigger

and the tumor doesn't show any signs of growth.

As for the doctor telling you that tumors grow as long as you have cranial

nerves, it's true. NF2 tumors like to attack the central nervous system (the

brain and the spinal cord) and since the cranial nerves are a part of the

CNS, tumors tend to grow there also. That's why your doctor probably advised

you to get an MRI of the head and spine every 6 months.

Glad your GK treatments are over and you're feeling fine.

Take good care,

Mark

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: NF2_crewonelist

Subject: had GK treatment

Date: Tue, 15 Jun 1999 21:02:36 +0200

Hi Crew,

Gamma Knife treatment over and done with, all in a single day. It all

went okay.

It began with fixing the frame onto my skull by screwing 4 pins into the

bone (I have now have 4 Deutch marks). To make me stand the pain, they

started out by giving me a small injection .. and I passed out on seeing

the needle. Which is just as well.

Then the MRI machine. After MRI there's coffee -with a straw because of

the frame right in front of my mouth. Meanwhile the scan is downloaded

into the GK computer to draw up the radiation plan for my medium-size AN

(1.7 cm, approx 2/3 of an inch). When the plan is complete the doctor

-Karlsson from Sweden- discusses it with me. I liked this. He gives a

chance to ask remaining questions, to vocalize any doubts or even to opt

out of radiation treatment.

And he seems to know about NF2. To his opinion it is unlikely that NF2

symptoms first develop in anyone my age (I'm 43) as opposed to being

diagnosed as an NF2 which can be many years after first symptom. But I

seem to recall several Crew members that were over 40 when first

symptoms appear ? He explains that as long as these cranial nerves are

present, they can develop new tumors. So preservation of hearing by

opting for GK, also means preservation of tumor changes. Is this only

his opinion or is it known to be true ? Any experience in the crew with

this phenomenon ?

Finally, I'm off to the Gamma Knife machine for a total of 7 radiation

doses.

In all, treatment took some 5 hours.

And now we wait how things develop. At the moment I only notice an

increase in the level of tinnitus. But no perceptible change in the

remaining hearing/speech discrimination. And no change in balance, no

extra 'woozyness', nausea, etc.

I do feel happy that it's over and done with. I was afraid that the

balance and hearing would seriously diminish before I got it treated.

That fear is over now. I 'just' need to wait for the effects in the

coming months. I feel very optimistic about it all.

For all crew members considering treatment for AN: I'd say look into the

possibility of GK treatment. Even if your first doctor advises

otherwise. My ENT didn't know much about GK and based his opinion on

outdated info ...

LEX

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June 15, 1999