Our Stories

My name is Ema, I am a 24 year old mother from New Zealand, with a 17 month old daughter who has a Left parieto-temporal arachnoid cyst with midline shift.

They first discovered the cyst when I was nearly full term (8 1/2 months). I was told by a top neuro-surgeon that this was the largest cyst he had seen on a newborn child.

I was told that the only thing to do is to wait and see how the cyst effects my baby as she grows, so basically I was to watch my daughters development good or bad.

At birth she could not suck properly so she was taken to the nursery to be tube fed, which was an unkind site to watch. Within the next few weeks I had to try and feed her by bottle so she could learn how to suck, it would take her an hour to barely finish a 60mil bottle, as the weeks went by she slowly learnt then there was no holding back.

She couldn't use her right side of her body as well as the left, we had little hope for her vision, but again as the weeks went by she slowly learnt.

I had no hope of her developing normal because of the negativeness of the medical team and the lack of information regarding the cysts effects, but she has since proved them all wrong she is so bright and developing to her age, we just had a recent scan done and an appt with the neurosurgeon, I viewed her scans and was so depressed from the images. It was like a black shadow slowly invading her brain.

The cyst is now 4 times larger in size and they want to operate soon as, the only reason she wasn't operated on sooner is merely because she had no symptoms and was developing normally.

The Neurosurgeon was a un-informative, insensitive asshole who gave me the impression that the procedure he is doing is more to benefit his medical experience and not to benefit my daughter. He wants to do "Drainage by needle aspiration or burr hole drainage. He didn't give me the risks or even the advantages of this.

I had to research my self and that's how I found this web. Reading everybody's stories saddens me, because of the lack of information and research they have done for this condition. I pray for my daughter everyday for hope that one day they will find a way to remove these things completely so there is no more suffering.

It's scares me reading everybody's stories as its just fortelling my daughters future which doesn't seem to bright.

I thank you all for sharing your stories.

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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)

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.
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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!