Our Stories

Hello, my name is Catherine Clay. I am a woman living with a fenestrated subarachnoid cyst located in between my optic nerves pushing on the pituitary stalk in the suprasella region of my brain. I have had 2 brain surgeries and I started this web site over a year ago before my last surgery because I could never find anything out there, I was tired of feeling messed up and alone and I never want my worst enemy to know what true suffering is so I started this foundation and am trying to tie in research, personal experiences and try to offer emotional support when I can (There are hundreds of you and one of me... if I don't get back to you please forgive me and please try again). I keep a journal on arachnoidcyst.net as it makes more sense to watch this unfold.

I was finally diagnosed after 14 years with Syringomyelia and what they think is MS (I think it's arachnoiditis) and you can read my spinal scans here. My Doctor is Dr. William Caton in Pasadena. His first words to me were "How's that syringomyelia treating you?"

I screamed back "I've been trying to get a doctor to say that for 3 years" (as there is no fucking way anyone could invent the symptoms from that disease) and fell in love with the smartest neurosurgeon I've ever met. He's my hero and loves to have challenging patients.

I found out on March 1, 2005 that the plycycstic ovarin disease I was diagnosed with by my endocronologist was a polycycstic baby so even though I've been told for years that I couldn't have children I am now 5 months pregnant. I had my son genetically tested so he will not suffer in the manner in which I do because waking up everyday in chronic, debillitating pain is no way to live and I would not trture another human being in this manner.

I became a photographer because I could be blind. I wanted people to see the beauty of life through my eyes. I am the second person with a cyst on my pituitary gland that has another disease caused by this cyst. If you have a cyst in this area RUN to an endocrinologist and have you hormones checked. I have hyperpituitarism. Kevin also has had to take medications his entire life. One of the babes is on hormones because a bad doctor cut his pituitary stalk.

This disease does not do you any favors so education is the only key to fighting this battle that I have been fighting for 15 years. An arachnoid cyst is a SYMPTOM of more severe diseases. It is NOT "just a cyst" and even though "it's not cancer" it causes you long term Central Nervous System damage like the Chernobyl it has caused to mine. Location is the key factor and even though size does matter the location is more important.

You have GOT to get rid of this thing, period, especially if you are a child because you can RECOVER much easier although you HAVE GOT to go to a neurosurgeon that has done the surgery countless times or you can end up with even more severe problems.

This is my compelling experience which can be backed up with scientific data and results from my last 25 MRIs. The first time I had brain surgery at 18 my brain bounced into the space where the cyst was occupying when it was aspirated. There was enough fluid from the plum size to make a Chilean grape. At 30 there was so much damage from typical CSF flow with each heart beat that they cyst has cemented a hole the size of that grape permanently in my head . I asked Dr. Kelly when that was going to bounce back and he told me it wouldn't. It's destroyed the structures supporting my brain and the architecture around my brain stem to cause my pituitary gland to malfunction and I suspect cause Syringomyelia since I have boughts where I lose sensation in my hands and feet and have already been paralyzed because of it once (confirmed Dx in September 04 with MS added to the pot)

GET RID OF IT. You will get Surgical Arachnoiditis but it's better to live without Intracranial hypertension which makes you a little crazy and the long term damage it does to your mind & body.

When I get a new story it always makes me cry because none of us have had superior care and comfort in knowing how we are going to age with our disease because there are no long term studies.

After pouring my heart and soul into gathering information I have made a few conclusions.

This can be hereditary. I'm sorry folks but in the slim chance of you EVEN HAVING ("they" say we are 1% of all brain tumors diagnosed) an Arachnoid Cyst there is still a slim chance that someone you love can have one too. If you want to check the gene it's on the 14th chromosome.

96% of our fathers were in the military.

Several mothers were on fertility drugs. I would like to discover what you all were on. (I think my mom had ovarian cancer when my sister and I were in utro since we both had central nervous system disease)

These things are like cancer, It doesn't matter what color you are or your sex but most people that have them genetically are of Western European decent.

A little more about me as a person before you judge me:
My family started the Republican party. We helped buy Alaska and Compromised Missouri. I don't know how many generations we have been here but I come from a long line of communicators, law makers and fiery Kentuckians.
I live in Los Angeles
I speak Russian Fluently
I have been through 14 countries (which is why I tell you not to fly because I did it and caused more harm to my nervous system and most doctors will tell you not to fly after surgery)
I am a photographer
I am a webmaster
I am disabled
I have participated in several brain tumor conferences
One of my best friends is Samantha J Scolamiero

I'm hoping that if you understand a little more about ME as a person you will understand how I have come to various theories of how and why we get so sick. I suck at communicating because I am passionate and I am very honest. If you are newly diagnosed I'm sorry this disease is a lot worse than your doctors are telling you depending on where your cyst sits.

I added this group of questions to ask your doctor.

I am going through physical therapy and highly recommend that everyone get up on that if you have this disease. It really helps you train your muscles and dealing. Rolfing will also help you. If you see words underlined that means there is another link.

If you suffer from pain you need to talk to your doctor about getting on a regiment of drugs:
Lamictal helps with the electric shocks and pins and needles
B6 will help you if you are in the early stages of this disease
Vicodin will help with the pain
Duragesic will offer you more pain relief 24/7
If you are sick to your stomach all the time Marinol helps a lot or you can do what I did and move to California where you are a patient and not a criminal.

Maybe you recognize some of these symptoms:
Pain
Memory/Thinking problems
Headaches
Intracranial Pressure
Easy to bruise, hard to heal
Visual disturbances (lightening, electric fish)
Sensitivity to light and bad smells
Emotional problems
Irritability
Hyper/Hypo Sexual
Whooshing sounds due to HIP (High Intracranial Pressure)
Vomiting
Nausea
Dizziness
Balance Problems
Epilepsy?
Numbness and tingling
Memory problems
Tremors
Fatigue
Neck Pain
Back Pain
Problems thinking and concentrating
Paralysis

Hormone imbalances can cause:
(such as low Coritsol or too much Prolactin)
Overweight due to medication
Hot Flashes
Hyper Sexual

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

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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!