Our Stories

My problems started on my birthday, July 2, 2003. We went out to dinner with some friends and I had two cocktails. Suddenly I said I need some air I was not feeling well-I never made it outside. I fainted and an ambulance was called. I passed out four times before I got to the hospital and my blood pressure (top number) went from 89 to 213. (Later I found out I was have seizures) I was in no real pain-only had a headache. They did a CT and found the arachnoid cyst.

A doctor was called in and he wanted to do an MRI the next day and remove the cyst the following day-no way! I live in a small town in Michigan and I wanted to go to a bigger hospital (Kalamazoo)-so the next day I was transported to this hospital. After many tests, they said live with it and have the cyst checked on every few months.

I was happy with this and went home. I had seen the cyst on the CT and it was huge-the size of my fist. I have a sister that lives in Chicago and she insisted that I go to Northwest University Hospital and see a neurosurgiant there. I did this and he said I should have the cyst drained-it was the least invasive surgery to start with. He said it was not life or death at this time and that I was born with it. But I should have it done soon. So on Aug 19th they went into my head and attempted to drain the cyst. They cut the top of it off and put holes in it, hoping it would drain into my spinal column. The cyst was at that time starting to spurt out itself (ready to erupt). Well it did not completely drain the way they wanted it.

My forehead on my left side became very spongy as it was draining into my head. The removed this spinal fluid and put a turban on me thinking this would keep it from draining into my head-this did not work-it still drained into my head. Next step-spinal tap and drain the spine. Painful as the spinal tap was-they proceeded to drain my spine every hour on the hour around the clock for three days-no sleep for me. It has worked.

My head has stay down-no swelling at all and this also means no shunt. I am still seeing the doctor and I also had seizure while the drain was in my back. The doctors don't know why I had the seizure but I am on medication for it-can't drive and it makes me very tired but they are afraid I may have another one. I will see the doctors this next week and see where we go from here.

I am in no pain and feel really good. I am hopeful this treatment
will be the last.

BLOG
YOUR
"FEELINGS"

MARK YOUR
TERRITORY
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)

VENTRICLES

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)

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

DOCTORS

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.
Please donate

Amazon Honor System

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!