It is really hard to find doctors that even know what an Arachnoid Cyst
is.
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Catherine Clay
The Arachnoid Cyst Foundation
Po Box 4265
Burbank, Ca 91503
When you do call please be
aware that this is my home and I will answer "Hello!"
When you are full of despair and need someone just to listen and you
want to hear I've got the ear. But I need HELP too to build this
fledgling foundation and I NEED to help you navigate through this
nightmare of having a brain tumor nobody wants to acknowledge. You
won't get an answering machine on Sundays, it's me! Please be aware
of the time difference and respect the hours since I have a 5 yr old. Right
now where I live it is about:
11:03 am. So feel free to call!
I would also appreciate it if you could sign up
with
so I can get a month free.
Your donations will help support our cause. We are waiting for the last
piece to finish up the complete non profit status but if you need a
number then I have one!.
Our preferred method of Donation is to
sign onto your bank's website and then write an electronic check. I
don't even think they charge you for postage. That way we get the full
amount instead of what paypay takes out as well.
My name is Catherine Clay and I run this site. Zorba is my what's
left brain and Wendy is my frontal lobe.It has been the longest
running site helping people
cope with the tradgy of dealing with life POST and PRE surgery.
YOU MUST ALWAYS CHECK YOUR DOCTOR AND GET SEVERAL OPINIONS! FIND OTHER
PATIENTS WITH SUCCESS STORIES AND FAILURES. ONE OPINION IS NOT ENOUGH
TO LET SOMEONE TAKE YOU LIFE INTO THEIR HANDS ONCE BUT TWO, THREE,
FOUR...
Before calling, please read
through the site so when we talk you won't be blindsided by what I have
to say.
Yes
we can provide a support network
Yes
we can provide patient education
Yes
we can provide info to show your doctor
Yes
we can help you understand your MRI
No
we have no money to hand out
No
we can not help you with health insurance
No
we can not tell you everything is going to be OK and I'm sorry but I can hold your hand when you're ready.
This site is PG-13.
We use strong language and communicate as adults with the ways we
suffer. If you can't take it quit reading now. It's not my
fault we are ignored by the medical community and have Syringomyelia of
the Brain so don't blame me for the harsh realities or if you think you
will never become symptomatic because by the time you do you will wish
you had done more to keep icky symptoms at bay.
I used to heavily recommend one center but after too many other
patients' cyst have grown back and they don't have the 20-60 grand it
takes to have another surgery where they claim their technique is the
end all be all and they end up having to have ANOTHER operation.
Barrows was found when a child was leaving San Diego (I DO NOT
recommend flying after surgery) and he had to have ANOTHER surgery when
they touched down thank GOD those people were there.
Arachnoid
Cyst Book in the Works! Since I need a new shoulder from taking steroids it would be nice to have help typing her up.
IT MAY SOON!!!! Thanks to Tom Bohl
I am able to turn this site and some of my theories into a book. You
might not agree with them and that's ok... but if you want to be heard
in the first publishing you better TELL ME NOW!!!
It's an ongoing battle. I get several new letters a week from people
always telling me their doctors say "it's all in your head." Perhaps
you receive a phone call from you physician dismissing your cyst as
nothing. Perhaps
you were born with it (click to read my favorite article).
Perhaps you got it from a car accident or a soccer ball.
"They" tell you there is nothing wrong with you but you are tired, your
back hurts, your neck is stiff and your body aches and you have moods
swings that would put Linda Blair to shame.
Don't kid yourself. You really have something in your brain that is
causing you to have inexplicable problems. You need a team of
specialists that will help treat your problems and not dismiss them as
your imagination. They will often tell you to see a psychiatrist that
there is nothing wrong but that's because they are ignorant and don't
understand what it's like to live with a rare neurological disorder
with no known cure, very little treatment and not enough information.
If you find ANY information on this site that has benefited you please donate
at least $10. I found new info to print out for your doc so if you want
access...
hand over some bucks! I take the time to put this site together and
give you info.
This
site is NOT to take the place of medical advice but to show you that
you are not alone, call me so I can give you
emotional support and do my best to advise you as to how to navigate
living with your
brand new brain tumor, YEAH! There are things your Dr. isn't studying,
reading, learning because he just is too lazy, misinformed or thinks
that the medical gods that wrote the book on how to have a "benign"
brain tumor are correct so s/he can go back to making money on people
dying from cancer. Luck of the draw. If you are located in some cities
you can find treatment however...
your time,
enegry and any effort into helping me. I am 501(c)