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Meagan


(years diagnosed)

THE BABES

Ema(2)

Ruben(2)

Daniel(2)


Katie(3)

Mom(11)

Justin(3)

Jessica(1)

Meg

Hobie(4)

Tanner(3)

Jacob(3)

Chance(3)

Hunter(2)

Sara(2)

Jacob(2)

Anon

Logan (4)

Mandy(4)

Mandi(7)
heridetary...
her brother has one too
.
Tracey


THE ADULTS


SPINE

Kathi (2)

Marvin(1)

Loretta(2)

Anabel(4)

Carrie

MIDDLE

Kate(5)

Catherine(me) &
Journal

Mare(3)

Yvonne(5)

Jason(11)

Angie(1)

Pam(10)

Nate(7)

Kevin(23)

Sally(1)

Theresa

Cin(2)

LeslieU. (1)

Meagan (3)

Lavona(2)
*hereditary

Royalyn(2)

Rita(5)

Justin(7)

Jill (1)

Barry


Linda

Jen D

RIGHT TEMPORAL

Telisha(1)

Darren(5)

Andrew(4)

Sheri(4)

RIGHT
TEMPORAL & PARTERIAL

Katie D (6)



                        100+ other people know it's not "all in your head" Please join me in keeping it real.

Meagan is 12 years old, the youngest of 3.  My first son Michael died of non hodgkins lymphoma 14 years ago when he was 4.  Meagan was born just short of 2 years of losing Michael.
 
Anyway, Meg has been in sever crippling bouts of pain for over 2 years now.  At first I thought it might hormonal just like many of you probalby thought.  But soon into these horrific ordeals I realized that this was something bad.  I pushed to get her a MRI.  Thats when they came back with Arachnoid Cyst, hers is 4.9cmx4.9cmx3cm, its pushing the left cerebellum to the front of her head.  Its also eroding the back of the inside of her skull where it sits.
 
Her neuro guy in jersey has emptied his bag of tricks.
 
Now I feel like we were just kicked to the side of the street. 
 
On a more positive note I dod speak with Karrah from Dr kellys office in LA.  I'm send the reports and the films over.  And they will get back to us with their opinion.
 
I know the people in jersey think she is anxious and bring the pain on herself.  That's nuts.  This little girl once fell off a monkey bars broke here wrist/growth plate when she was visiting friends in Long Island and didn't mentioned the arm to a soul.  She lived thru the rest of her vacation with this broken arm.  I know she is one tought cookie.  There is no way she is exaggerating this pain.  If anything, Meg is down playing it for my sake.
 
I am so angry right now I could scream, but I know from past experience that it wont do any good.
 
Can anyone tell me if they know of anyone who has had base skull surgery, I am looking at this Dr JHO he does a nostril approach with minimal invasive techniques-fenestration.  I am so desperate to know many things.
 
God Bless you Catherine & entire AC family
 
Maureen

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Join us at arachnoidcyst.net so others can feel your pain and we can get "them" to listent to us~

PINEAL

Deborah(4)

POSTERIOR
FOSSA

Bev(6)

Dawn(2)

Christi (6)

Rebecca

Karen(2)

Angelea (7)

Owen(2)

Amy(3)

Amy(5)


Dana

VENTRICLES

Jan(1)

Steven(7)

RIGHT POSTERIER

Laureen(7)

Dani(1)

Shauna(2)

POSTERIOR FORAMEN

Jessica (5)

RIGHT
PARIATAL

Marge(2)


Babs &
Journal

CEREBELLUM
Michelle(3)

Bill L. (2)

Tom B (15)

Adrianne

Jo-Lin(16)


Lisa

Amy

BRAIN STEM

Robin

CORPUS
CALLOSUM


Jennifer (2)

OCCIPITAL
LOBE

Rashad(3)

LEFT
TEMPORAL
(MOST COMMON)


Leslie(11)

Vicki(16)

Chris(2)

Warren(2)

Courtney(7)


Robert(3)

A Husband's
Plea(2)

Don(5)

Melody(1)

Debbie(2)

Henry(13)

Sand(2)

Mat(4)

Alex(7)

Bill(3)

Olene(21)

Deb(2)

Stéphane(2)

Karen(3)

Lance(2)

Lisa(4)

Christine(7)

Richard (3)

LEFT OCCIPITAL

Francine


MIXED STORIES


Some people just send snippets so I put them all together here.

You can help the most by adding your story to arachnoidcyst.net

The Arachnoid Cyst Foundation
c/o Catherine Clay
PO Box 66820
Los Angeles, Ca 90066
1-(800)-493-5022
11am-10pm PST Weekdays

PLEASE REALIZE THE TIME DIFFERENCE
Please read through this site before calling as your answers very well could be here already.
No we do not have printed materials, you will have to print out this site.
Amy and Catherine are giving telephone suppport at this time. Amy for emotional support and Catherine for MRIs.
If you didn't find the info you need on this site or arachonidcyst.net please do call.
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This site was designed and is maintained by Miss Catherine Clay She has recently had a child and is not the best communicator at this time. Please be patient and call or e-mail back!