Radiosurgery Questionnaire

[Guest guest]

NEVER HAD RADIODURGERY. SORRY!

JUNE

[Guest guest]

Hi,

I cannot seem to figure out how to respond to the questionaire so I will just

do it this way...I have had GK 2 times.1991 AND 1996 Rochester Minnesota at

Mayo clinic.

in 91 it was done by Dr.Duddly and 16 it was done by Dr. Coffee.

Both times it was Gammma Knife with that Horrible headframe,The first time

they used a BIG drill to attach it and the 2nd time they traded there drill

for electric screwdrivers.Which felt better

The first tumor that was treated was a AN on the auditory nerve and it was I

believe over 3 CM'sthe 2nd was done in 96 and was a little smaller,that was a

regrowth from surgery years ago on the auditory nerve,that was also a AN.

I am not sure of the amount of radiation I recieved the first time but it was

a one time procedure with many differnt shots of radiation and I went into

that with my hearing intact on the left side hopeing to save it but the

radiation was so strong that it did a lot of damage and took my hearing

paralized my face and burnt my mouth face and is affecting my eye

sight.Anyhow the radiation caused a lot of damage and I almost died.

I was givin steroids the first time for many months by dr.s that did not know

what they were doing and wernt familiar with NF2 or the GK treatment.Because

of this I blew up over 200 pounds and all that other good stuff and the

second time I had GK I took steroids just once in the hospitol and nothing

more.

After surgery the first time swelling started pretty much right away and I

was in and out of the hospitol for a couple years.For all differnt kinds of

things.My face was paralized after the GK from radiation and I started going

deaf real fast.One night went to bed hearing and the next morning woke up on

my way to being deaf.I think it was just a few months after I recieved the

radiation that I started losing my hearing.

My hearing from the treatment was decreased

I think the tumor was close to the brainstem

Yes,I was told all about the treatment.I was more or less a guina pig at Mayo

and was one of the first 50 people to be I call it FRIED,in fact I was 48 in

fact.It was pretty much experimental and I was told that the effects of the

radiation would be for up to 2 years,NOT TRUE...I didn't get the full effect

of the radiation untill about 8 years.The treatment sounded to me to be what

I was looking for.When I found out about it,I sat down and cried,little did I

know then that I would have that takin away also,my ability to cry.

I had horrible swelling and Nausea shortly after the head frame was takin

off...VERY sick all night and pretty much that way for the next 2 years.In

and out of hospitols.The first hospitol I went in was shortly after I started

losing my hearing,I had no one to talk to or support and I was sick on top of

it and ended up in the hospitol on a suicide watch.Spent 3 weeks in the

hospitol hiding from the rest of the world and chainsmoking(I have since QUIT

!!! )Went home one after noon and collapsed in front of my children,my legs

went paralized

Back to the hospitol I went.

What was the most negative aspect of my trreatment ?GEEE,maybe I would say

the hospitol food

Would I recomend this to anyone else....HELL NE NO NO NO,but I would tell

them my experiences with it though.

Looking back,it has been a nightmare 10 years,10 years of horrible silence

and sickness...I made a choice to to have this,and without it I would be

totally deaf.So I have to put up with the radaiation pain and the sand paper

eyeballs and the headaches and the intoxicated walking and the dizziness and

all the other bologna that well all endure and have to put up with with

having this diesease BUT,I THANK GOD,with the help of a hearing aid I can

still hear my children call me MAMA.

That's what really important.

Lana in Minnesota,kinda long winded today

[Guest guest]

Ken, as you may have noted, I composed a radiosurgery questionnaire to try and

track results and possibly be helpful to the Crew; thus far I have 20 returns,

altho most are gamma knife; would you be interested in completing one? I am in

NM at my son's for the holidays, and unfortunately the questionnaire is on the

computer back home! But if you are interested, pls. let me know and I will

forward it to you. Thanks. And I'm in Santa Fe if you need anything checked

out! Marie Drew

ALDA96Ken@... wrote:

> From: ALDA96Ken@...

>

> Hi Gang,

>

> As an original member of the crew (I was the original " bio man " ), I don't

> read the postings on a daily basis but instead use the " digest " format. Sorry

> if I missed this posting below.

>

> I was the FIRST person in my family to be diagnosed with NF2, but with

> Genetic Counseling we found that my mother, grandfather and about 7 of his

> nine brothers/sisters had NF2. Some died due to the disease or were linked to

> it (drowning).

>

> As for the 50/50 chance of getting NF2, I think its higher than that. The

> docs always tell you that but my mother only had two children and both of us

> have it!

>

> As for saving my hearing, I agree with 's post... " being deaf isn't so

> bad " . I now look back and wish that HEI (House Ear Institute) took out the

> complete tumor and left me deaf instead of trying to save some hearing and

> leaving a bit of the (nagging regrowth) tumor.

>

> Just my $.02

>

> Ken Arcia

>

> << Message: 5

> Date: Sun, 19 Dec 1999 12:47:52 -0800

>

> Subject: Re: Gentic Counseling

>

> i am the only one in my family with NF2.

> TARA

> On Tue, 07 Dec 1999 03:44:59 -0500 Blue Eyes writes:

> >

> >

> >ManelyCat@... wrote:

> >>

> >> From: ManelyCat@...

> >>

> >> Well, I thought you might like to know that EVERY one of the replies

> >to my

> >> question that asked if you were the first in your family diagnosed

> >with NF2,

> >> was YES! Including myself, I've only had 9 people who responded.

> >>

> >> Anyone else care to respond? Are there any " generation " people out

> >there who

> >> have NF2 passed down from generation to generation?

> >>

> >> Jun >>

> ------------------------------------------------------------------------

> See what's happening for NF2Con 2000!

> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html