Our Stories

These are the stories I've been collecting since 2003. Hopefully we'll make this whole site more streamlined so people can add their own stories but for all intents and purposes this was the original arachnoidcysts.org.

I am the mother of Jacob, four years old.  When he was 9 months old, his older brother dropped him on his head.  The resulting CT scan showed an arachnoid cyst.  We were

told it wasn't a big deal and that we should monitor it with yearly CT scans.  That was while were in the military and stationed overseas. 

For Some reason the military loves to give vaccinations to the kids and fathers, which messes up their sperm, and then causes them to be carriers for Arachnoid Cysts. I am sure I can accuse until the cows come home but it's very strange that the 100+ people I have spoken with to date have a spouse, a father or themselves are in the military. If not their father then their grandfathers. I wish I could pull an Erin Brockovitch to prove that vaccines cause these things but naturally since I have an AC myself it's kind of hard to prove ~Catherine

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Hi, my name is jessica. 

I'm 17 and was only diagnosed with an arachnoid cyst 2 months ago. 

I have had my cyst for at least 7 years.  I know because i had a seizure when i was seven and had many tests, however all they found was a dark mass on my cerebellum. Recently i have felt pretty bad and have even had to start homebound schooling since i can't walk without falling. 

My doctor wouldn't even give me an MRI at first.  She decided it was probably due to pregnancy. 

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from 2006

Hi, My name is Mandi.

I am a sixteen year old and a mother of two.

I was ten years of age when I started having extreme migranes, it was like they never went away.

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My daughter is 4 1/2 years old.  About 6 months ago she started changing drastically in her attitude and mood etc.  After much consulting with friends and family members and her Dr.  and the daycare director, I was told that they all think she had ADHD because she would have periods of "zoning out".  Even though she'd be looking right at you, she would look like she was "out of it".  The daycare director told me she didn't want to say anything because she didn't want to offend me, but that she thought my daughter needed to be tested for a Special Education Program.  Even though in the next sentence she stated that my daughter was unusually smart for her age (a comment I hear quite a bit).  Add a comment

My daughter, Katie was born July 11, 1994. She has multiple diagnosis: Fragile X Syndrome (an inherited genetic disorder), an Arachnoid Cyst (left temporal lobe) and Cyclic Vomiting Syndrome.

Katie is a real delight. She is a true blessing to our family. She is thoughtful and kind. Katie is remarkably considerate and caring for her age. This year will mark Katie's fifth year in Girl Scouts and second year in 4-H. She regularly attends youth group and Pioneer Club. Katie enjoys books, computers, scootering, and drawing.

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I need any help you can give me to make sure that I know what I am talking about with the doctors.

Hunter has complained quite often about having headaches. He will get pale and want to just lay on the couch and watch cartoons.

Saturday afternoon we were out of town on vacation. He complained about a headache at about 3p.m. We then went to our room, took showers and went out to eat. We took Hunter to the sting ray reef at Kemah Boardwalk near Houston Texas. He loved petting the rays and didn't complain about anything. At about 9p.m. he started crying and hitting his left hand. He told me that it hurt and pointed to where the pain was. He was pale and didn't feel like eating much.

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was born on the 8th April 2003, he was a much awaited IVF baby, I had several scans during my pregnancy, none of which showed the cyst. Everything was normal up until he was 9 weeks old, when he had his first GP check. He was diagnosed as having an arachnoid cyst when he was 12 weeks old. It all began when he was about 10 weeks old, on one of my regular visits to the baby clinic one of the nurses noticed that Rubens head was look large, she said it's probably nothing but take him to your GP for a check.

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I am curious how you explain a 19 year old girl with a 7cm AC (found in a CT after a car accident 10 years ago, that has not changed size or shape in 10 years) who:

*Scored 1470 on her SAT's (no prep course, single test)
*Had a 4.3 GPA in high school, with a 3.7 in college
*Is extremely organized
* Is loving, caring and always been calm and easygoing, with minimal behavioral problems (even as a toddler and through the teenage years)
*Is confident and self assured - active socially and politically
* Has flown to Asia, Europe, Australia and numerous times to Hawai'i - in addition to 4 or 5 domestic US trips annually.
* Has has had regular, painless menstrual cycles since she started (at 14 1/2)
* Is a karate blue belt, is a certified scuba diver, plays lacrosse and soccer, runs cross country, and volunteers regularly
* Other than stitches resulting from a child pushing her off a swingset, has never had more than the flu.  No headaches, injuries, etc. 

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For the first 5 months my daughter had to be breast feed only.

For the first 8 months of her life she would not go to sleep unless she was on my chest.

When she was 10 months she had a seizure. Her eyes were rolling and her left side was shaking for about 15 min. Then her body went limp. She had her eyes wide open but she wasn't looking at anything and her body was lifeless. She remain this way for 1 hour and 30 minutes.

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Tanner

To Whoms Eyes May Fall upon this:

We have a 2 year old son that has rae things going on with him and we are in deep search of to find a way to help him. If reading through this and you see a way you may help in any way please contact us. We are trying to make life easier for our son and other children as well.

Thank you so much from a family with hope~~~~~~~

HISTORY

Tanner was born at 39 weeks by C-section due to Mom having previous C-sects.His apgar score was a 9. At birth he was slightly jaundiced.His weight was 7 lbs.8 oz..His length was 19.5 inches. Mom was concerned about his eyes as they seemed to disapear downwards more often than not and long time intervels.

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