Our Stories

In spring of 2000, I was less than 1 year married with a brand new house, the right job, the right car, a boat and a serious health issue. I had been having nausea, headaches, dizziness, trembling, vision problems etc.

I traveled from doctor to doctor from neurologists to psychiatrists and no one could give me an answer. I was told I had anxiety disorders, stress, PMS and even fibromyalgia (I told the doctor it was a trashcan diagnosis).

My condition only worsened and it wasn’t until I begged a doctor to do “something” because my body was only getting worse, he ordered an MRI.

The result: an Arachnoid Cyst (AC) on my cerebellum the size of a large orange that took up over 1/4 of my cranial cavity. The diagnosis also contained an apology from my doctor; he had yet to see so much compression on a person’s brain. He pledged to take me through the entire process as if I was his sister and he did. He realized that he was human first and then a doctor not the other way around.

There are plenty of rotten doctors out there. They believe they are the ones with the education and if you are saying your body is doing something other than what they have seen in their data, then you are mistaken or blowing it out of proportion.

The key to finding the right doctor is to keep looking.

It is frustrating and the process will never end each time you have to see a new one. When you have a rare disease they either want to study you or make a guinea pig out of you. The right doctor will not be afraid to take chances, but he will also treat the human not just the disease.

Due to the size of my first cyst, I recovered from the surgery with many side effects and residual damage. I have cranial nerve damage. Lost part of my hearing, have ringing in my ears, and reduced sight.

But I am still better than before the surgery.

At my 6 week post-op appointment I was told that I had another cyst in another part of my brain.

My new husband’s head dropped and I had the feeling that day was the first day of the end of my marriage. We divorced after 18 months of marriage, he “couldn’t handle it” (as if I could).

Although we don’t ask for it, this becomes a learning process in many ways, not just medically. “How are you?” takes on a new tone. People ask it to show concern, but they want the condensed version. There is no way to condense it when it is such a huge part of you life. People will begin to disappear from your life and treat you differently.

You begin to take on the guilt of not feeling better so the others around you can feel comfortable. As if your answer to “Why can’t they…?” or “Why don’t you…? is going to be “because I’m rather attached to the nausea, throbbing headaches, blind spots and dizziness.”

Relationships will change drastically, few will strengthen and many will fall apart.

Living a normal life is a task in itself when you have an illness. Many people will never understand that. This disease is a constant battle against your body and it lives in your head in more ways than one.

The triumph is in doing, no matter how small the task may seem, failure only comes about when you give up.

The urge to give up comes around during the darkest times, but if you lean on the fact that the last time you didn’t give up you can push through it.

You have to learn to assign value to things that others wouldn’t and rid yourself of those that may never have the value that you thought it would.

Society’s perception of people with disease is that we are weak. People seem to think that since you have been diagnosed with something you should automatically know how to deal with it.

This disease doesn’t come with a manual.

Doctor’s have difficult time finding information on it, how the heck are we supposed to know how to live with it. There is a new way to adjust to living life.

Laughter can be the best medicine. Humor is integral to my life when I am dealing with the monster in my head and the effects on my life. Things that happen to you are so absurd they can send you into a spiral or a laughing fit. You have to make the choice.

I had to begin assigning value to myself and what I did.

I had to take the chances that no one else would allow me to take.

I quit my job after 15 years and began 3 of my own businesses. If I was going to drag myself to work everyday, it was going to be for me and doing something for which I was passionate.

I no longer drive a BMW, a husband or own a house, but I have the passion about my life and work that I lost when I was trying to prove to everyone else that I could still do it.

The relationships that ended were from weakness.

To others, I am only as sick as they want to believe or feel comfortable believing. The difference is, now, I no longer try to convince them, and they aren’t living with it. If someone loves me, they will accept it and live with the disease just as I have no choice to do everyday.

Life is not about who loves you—it’s about who you love.
It’s not about how others think you should live it—it’s about how you live it.
Emotional pain will cause you only more physical pain.
Nothing is worth making that compromise.

This is a very lonely disease. There is no preconceived societal notion about how you treat someone with AC. It’s not heart disease or diabetes, those of us who suffer from it know little about it. No one will ever know the pain and illness you experience unless they have lived it themselves. It’s their choice.

You are brave. Bravery doesn’t mean that you beat the odds by climbing Everest or crossing the North Pole in spite of your disease. (That only happens on talk shows and those people have bad days too.) Bravery is knowing what the odds are and still going after it. It is no the way you live because of the disease, it is living in spite of it.

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!