Our Stories

I was diagnosed in January of 2000. I had my first seizure at age 35. I had been a teamster for 15 years working in a freezer and switched jobs in 1998. I did construction and was hanging seamless water guttering on the side of buildings. That day I was working with no safety lines. I ruptured a disc by loading the ladder and went to the doctor the next day and I was waiting on a cortisone injection for my back for pain management because I didn't want to take a lot of drugs.

He knew he was going to have to do surgery on my back. I had already had surgery on my back before. I guess the stress from waiting for the shot made me white and then I remember waking up with everyone around me. I thought they had given me the wrong medication.

They told me I needed to have a brain scan. I didn't take him seriously so I didn't have the scan done. I didn't have insurance . I had never had a seizure. I was eating dinner with my son watching TV 3 days later and I woke up with food all over the place and my son was freaking out.

He told me I had fallen on the floor and was hopping around. So then I took them seriously. Even though I didn't have insurance I persuaded the doctor to send me to a hospital that would do a MRI.

When I had first switched into construction I went to the ER with a really bad headache. I was dizzy and dehydrated. It was summertime and I thought I was sick from the heat. They checked my eyes and could see the CSF pressure had gotten high enough to have a stroke so they drilled a hole in the back of my head. They did a cat scan and they did not inform me of my cyst.

I had the MRI and I could tell by the look on the guys face that something was wrong. A few days I went back to my neurologist and he told me I had an Arachnoid Cyst the size of a grapefruit. It's 10 cm by 10cm by 7 cm on my brain stem in the posterior fossa.

Since then I have had 5 brain surgeries and one of them I was awake for the procedure by choice. I had just come out of surgery from a shunt placement and they thought they could place it better. Having my teeth cleaned hurt worse than that surgery.

The first surgery was a fenestration with 3 breaks in the cyst. The second surgery is when they put the first shunt in. My scar is in the back of my neck. I have a trap door that is held together with titanium screws and no I do not set off alarms. The third surgery was another fenestration before they went with the second shunt. Even my family is confused as to what happened because this all happened so fast. The forth surgery was for the second shunt. I have hydrocephalus because of the cyst blocking the CSF passageway from my spinal column up to my brain.

I now have two shunts in my brain and a value that drains into my stomach. I went to the doctor after labor day and he told me my cyst is 1 cm smaller. He didn't schedule another appointment unless I have sever problems. I wake up with a bad headache. I smoke marijuana in the morning and get relief from the pressure headache. It helps me for 6-8 hours and it helps more than than the pain meds I was prescribed. I was on Lortab for a really long time which made me feel drunk all the time. I don't like pain meds because they make me sleepy and tired. When I smoke marijuana I can go about my day. I am a criminal living in Oklahoma.

I do not suffer much. I have balance problems. I have always ridden a unicycle and I can still ride one.

My doctor would not release me to go back to work. I filed for SSDI and got it on the first try without a lawyer because of the paper train that was created from all the problems I have had. I am now disabled. I draw from my pension and get a monthly check. I own my own house and I still take car of myself. I have a 12 year old son and have partial visitation. Once I was put on disability my son gets his child support from SSI.

I now take care of my mom and spend time with my son. I try to volunteer with the elderly because I feel that I need to give back something to the system that is supporting me.

This is a report of my Scan Report.

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.
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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!