Our Stories

My name is Angela and I used to be a body builder. I found out about my Cyst located on my Pineal Gland in 1998. It was the size of a pea back then and they accidentally found my cyst because they were trying to see why I had "migraines".

I kept getting more migraines, dizzy spells and feeling like I was always going to black out. I kept losing and continue to lose my memory.

They did MRIs every year and it was discovered that my AC was growing. I was never treated for my symptoms except as a migraine.

The MRI in 2000 was the determining factor as to why they decided to do surgery. Even after the surgery my symptoms never went away because they just aspirated the cyst.

Once the surgery was done and I told the doctor I was not well the Surgeon told me that I couldn't come to him about this problem any longer. That he had done all he could do.

I went to the Cleveland Clinic in 2001 to go through their Pain Management clinic. I went though detox because even taking 8 Vicodin every two hours would not scratch the surface of my pain. They put me on other medications to try to treat my headaches. There were no MRIs done or any other tests.

While I was on Neurontin the symptoms were being alleviated. I thought after I had surgery the cyst was gone. I kept experiencing pain and dizziness as well as vision problems. I was on Neurontin until I had gastro bypass surgery to lose the weight I had gained. That's when I started blacking out, had blurry vision, constant headaches and jumpy Eyes. He took me off the Elavil as well because he informed me that I would have heart problems with these drug combinations.

In April of 2004 it was 3x2 cm in size.

The bypass surgery allowed me to lose weight and took pressure off my spine.

My doctor then put me back on Neurontin after talking with Kathi. It helped but now I have bottomed out and am having symptoms that are uncontrollable.

I didn't know the Arachnoid cyst was causing any of my problems. I have been diagnosed with Chronic Fatigue Syndrome and Fibro in 1999. It got to the point where I could no longer work because of the severity of my symptoms.

I've been bed ridden for days where no one could even touch my skin because it hurt. I would have to have help with the housework, take care of my kids as well as walk to the bathroom.

I suffer from depression and am getting treatment.

My daughter was having dizzy spells and she had a MRI to rule out the possibility of having an AC which was clear.

Since all this has happened these last few years my health has gone downhill. I feel like I have lost a lot of years of my life because of this disease. Not being able to go to the fair, or Amusement parks because of the smells that hurt my head.

This situation has put me into a horrible depression. I went from someone that could take care of everything to someone that needed help 24/7 which is more than I can bear.

I'm on disability now. After my surgery I was denied again and again. I lived off welfare and child support. I had to do bankruptcy. I can not meet my medical bills at this time and still have trouble having making ends meet.

I can't think of anything else to add at this time as I have been robbed of my concenration skills.

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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!