Kenny,

I know you will do fine. It is very scary but I think you have the right
attitude. I have had three craniotomies and while I have a few changes in my
life I am content with the results and I have been tumor free for 7 years;
Surgeons do not want to operate on your brain if they do not have too.
Good Luck and keep up the faith.

Mary

K Simmons <obee1kenob@...> wrote:
Thank You Candy,

Please trust me on this one...I DO NOT WISH TO GET CUT OPEN!! I had three
independent consults (2 at Georgetown and one at Hopkins) and i asked 9a few
times) about a a non-invasive procedure. None thought that it was the best
choice for me...then again, they were all surgeons too! You think maybe that had
something to do with it? Anyway, i am not looking forward to any of this stuff
(so frustrating!), yet i know everything will be just fine.

Happy new Years!

Candy Clark <vfwdiva@...> wrote:
Kenny,

I would also recommend having another opinion. What I don't understand is why
your doctors won't consider either of the options I mentioned. One of my tumors
was also of walnut size and I was told it was my best option . But, if I waited
for mine to get bigger, then that option would no longer be available to me.
Again, unless none of these options are available to you because of the location
of your tumor. I am not very good at guessing where someone's tumor is located
by them telling me of the location.....like telling me a tumor is located in the
falz region.....lol. It's really up to you but I don't understand why someone
would opt for open head surgery if something else can be done that has real good
odds of working for them. Whatever you decide, I hope you do well and have a
fast recovery. Please let us know how you are after your surgery.
----- Original Message -----
From: JAMY Rogers
To: meningioma@yahoogroups.com
Sent: Tuesday, January 01, 2008 11:14 AM
Subject: [meningioma] Kenny

Kenny. the most important thing to remember is that you and your medical
condition are individual in the treatment needed. I would suggest three medical
opinions with a great mri. My first MRI was not as detailed as my second once we
found I had a meningioma. I was lucky that mine was small. In the area mine is,
surgery would only be a stop gap as all three sugeons said total resection would
be difficult if not impossible. With surgery for me since the odds of me dying
any time soon were low, I would have been out of work, no savings and living in
an apt so could be evicted in short time. Being single in my case or as only
bread winner in other cases does color the decision of treatment. Of three three
surgeons I went to, two reccomended gamma knife the third said surgery since
that is what he did. Since ending up out in the street after brain surgery would
not be good I made the best decision for me. I had gamma knife surgerty Feb
28th. You will find some people preach
what they think is th only way to go, but they are not Dr's and not living your
life. Get educated, make a decision based on what you find out is YOUR best
option. Funny, three of us here in this apt complex have a brain tumor of some
sort or another. Two have cancer and as fas as I know, I do not. All still
alive!
----- Original Message -----
From: K Simmons<mailto:obee1kenob@...>
To: meningioma@yahoogroups.com<mailto:meningioma@yahoogroups.com>
Sent: Sunday, December 30, 2007 3:01 PM
Subject: Re: [meningioma] Re: seizure after surgery

Candy,

I never heard mention of Trilogy treatment or Cyber (but i will look into it
very soon...thank you). As for the gamma, it wasn;'t discussed because surgery
is/waqs discussed as the preferred method from independent consults. I don't
want to go through surgery especially if it's not necessary. I think the
location of the tumor makes it critical (falx region) which also effects my
eyesight. I am still very much concerned about seizures. Any experience/info on
this would ease my anxiety.

thanks

Candy Clark <vfwdiva@...<mailto:vfwdiva%40bellsouth.net>> wrote:
Kenny,
I can't answer your questions about having seizures, but am wondering why your
doctor isn't doing Cyber, Gamma or Trilogy treatments on your tumor since it is
of only walnut size ?
I have three brain tumors...one was about walnut size and the other two were
about grape size and I had the Trilogy treatment. From my understanding if my
one tumor had of gotten much larger, then the Trilogy couldn't/wouldn't be done.
Did your doctor even mention any of those treatments being an option before you
decided to have the surgery instead? That is assuming you are talking about
having the open head surgery.
----- Original Message -----
From: K Simmons
To: meningioma@yahoogroups.com<mailto:meningioma%40yahoogroups.com>
Sent: Sunday, December 30, 2007 2:09 AM
Subject: Re: [meningioma] Re: seizure after surgery

Hi,

My name is Kenny. I was diagnosed with a (wlanut sized) meni in September and am
scheduled for surgery at the end of January. I have tell you that frankly I am
scared with this talk of seizures and maintenece medications. I am/was a healthy
46 year old male when diagnised and it is my understanding that I should be able
to go backto a normal life. Is being unrealistic for me to expect this? If not,
what exactly is a seizure and what is it like? Will it impair my ability to
drive? Humiliate me in public? Not allow me to care for myself? Change
jobs...etc? Please help.

thanks
rmorrow722 <rmorrow722@...<mailto:rmorrow722%40yahoo.com>> wrote:
--- In meningioma@yahoogroups.com<mailto:meningioma%40yahoogroups.com>,
"Greentrain" <greentrain_2000@...>
wrote:
>
> Happy hollidays to all,
>
> My mom who is 70 yrs old, had a surgery for meningioma on May of
2007.
> After the surgery, she has been doing great until she had seizure
last
> night. Now she is ok and waiting for the MRI result. I am wondering
> what causes and triggers the seizure last night. Now she is back
on
> Dilatin. Is it common having seizures after tumor removal? or the
tumor
> is growing back and irratating the brain again?
>
> Eugene
>
Eugene,
I'm surprised your mother has not been on maintenance meds for
seizures since her surgery. I had a world reknown neurosurgeon and
he told me that I would have to be on seizure meds for atleast 1 year
after surgery. The reasons are: once the shull cap is opened, you
don't know how the brain will react; the other is quite
obvious...once you have surgery/damage to the brain tissue, the
transmitters are damaged, besides the damage to the brain itself. The
impulses have to reconfigure and reconnect. In the process of the
brain trying to regenerate, seizures are inevitable.
I had a massive tumor and took forever to get diagnosed in 2000, I
was on the verge of death. I had small seizures, even on the meds,
for the entire year. I suffered from a grand-mal on the one year
anniversary - that was ironic I thought...anyway, I was told that I
would never be able to stop the seizure meds because of the brain
damage and scar tissue that was caused from the surgery and the tumor.
I have tried most of the meds. I developed an allergic reaction to
several of them, dilantin being the worst reaction.
FYI...dilantin causes damage to the bone and teeth, you may want to
try her on alternatives. I am currently taking 200mg of topamax
twice daily. This med helps extremely well on the migraines and
seizure prevention. Since taking this med, the migrains are few and
far in between and have not suffered from any seizures.
And...this med is covered by the medicare drug plan, I am also an
insurance agent for medicare products.
Hope your mother is ok,
Renee

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