Our Stories

I complained to my grandmother that I was having problems with headaches. Her reply was "Well, how can you be in so much pain when you go outside and play, and have soo much fun?"

At the time my mother was in jail and my dad really didn't keep up with what happened to us. He would buy us things but he wasn't really around. So I had to wait a couple of years for my mother to get out of jail because god knows my grandmother didn't believe me, or didn't think twice about it.

So when my mother finally got out of prison (in the year 2000) she took me to see a family doctor. He sent me to have a CT scan done.

Reports showed there was something there but they couldn't diagnose it. So they sent me to have an MRI done.

Reports showed that I had an arachnoid cyst a.k.a. dandy walker (which even to this day I can't explain because they are two separate disorders). It was located in the back of my head on or by the cerebellum.

The doctor didn't even tell us until a few months after the MRI was done. They recommended me to see a neurosurgeon named Dr. John Johnson in Greenville S. C. (my home county).

When I seen him he told me that I needed to have surgery. He gave me a choice to have it immediately or in a few months when school let out. Of course I wanted to have surgery immediately.

They scheduled my surgery two weeks after my doctors appt. (which was late april). I was on homebound for schooling after my surgery. I was on a lot of different medications for pain and stiffness, but I did feel relieved (now whether it was the meds. or the drainage of the cyst I'm not sure).

Two weeks after my surgery (a few days after having my staples removed) a little boy that I was friends with popped me in the back of the head.

My head started oozing puss and fluids. I went to the hospital and had a CT scan done and it showed that the bone had unfused and the cyst built back up. They gave me some kind of medicine for infection and my head stopped oozing.

After that my mom decided to move me and my sister to Charleston, S.C. My new doctor in Charleston worked at MUSC and his name was Dr. Hanes. I had another MRI showing that the MRI showed the bone had still not fused back together and the cyst was still there.

At one point he had me taking two oxycontins (THIS IS AN 11 YEAR OLD CHILD~Catherine) a day and loratab 7.5 in between. He wanted me to go to Maryland to see a specialist at John Hopkins University.

My mother started stealing my medication so I moved in with my father back in Greenville, S.C. When I moved in with my father it was January 2002.

In march my mother went back to jail for another 2 1/2 years for violation of probation.

So there I was with my father. I had an appt. to go to Maryland to see a doctor at John Hopkins University on April 4th. Well of course my dad wouldn't take me so I missed the appt.

So seeing as how my mother was in prison I got stuck with a family doctor who told me "Its all in your head" and that "I was a hypochondriac" and a neurologist who said that it was "Stress related". So here I am stuck with two asshole doctors who have no clue what they are doing.

In June of 2004 my mother is released from prison. I did get some hope in the year 2004. While I was living with my boyfriend of 2 1/2 years he recommended that I ditch my doctor and go and see his. So in October I went to see his doctor. Well I didn't actually get to see his doctor, but I did see another doctor that practiced in his doctors office.

So my new doctor (Dr. Hutcheson) saw me made me an appt. to get a MRI and prescribed me a lot of different medications. After the MRI I had another appt. to see Dr. Hutcheson to get my MRI results. The reports showed that the unfused bone had healed on its on but the cyst was still there.

Dr. Hutcheson told me that the cyst wasn't big enough to have another surgery, but him and a specialist said that I would more than likely need another surgery by the time I am 21.

Well the next thing I know the doctor that gave me all of this hope left the practice, and ran off and got married to his nurse.

Now it is 2005.

So instead of being frantic I go and give my boyfriend's doctor a chance. Well the first visit was awful! My mother tried to make me look like I had bi-polar. At the end of the doctors office they told me I was being sent to a mental institution for a few days. (DAMN MY MOTHER, SHE IS THE BIGGEST BITCH I HAVE EVER MET).

Well of course I am in tears because here I am with two kids and no one to watch them while im gone.

So anyways we get in the car and my mother calls my gramma. The next thing I know my gramma is cussing my mom out telling her "Kay you have gone too far". So my mother is trying to defend herself of course. Then she calls my dad and tells my dad what was going on and he did the exact same thing as my gramma did. So she talks to the lady at Marshall Pickens and gets me out of going to the institute and gets me to go see an outpatient psychiatrist instead.

I am currently waiting to see the psychiatrist.

So here I am 6 years later with two kids, a bitch for a mom, an alcoholic for a father, and the same disorder and no help really. I am finding new problems everyday such as, pins and needles, a splinter like feeling in my hands and toes, numbness in my hands and toes, forgetfulness, fatigue, depression, and constant migranes.

I don't know where to turn from here.

I guess I just have to wait and see what happens.....I hope my story helped the few who have the same disorder as I do. By the way if you want to talk or have any information or questions you can get my number from Miss Catherine Clay.

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Some people just send snippets so I put them all together here.

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DOCTORS

The Arachnoid Cyst Foundation
c/o Catherine Clay
PO Box 66820
Los Angeles, Ca 90066
1-(800)-493-5022
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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.
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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!