Our Stories

My name Amy. I am 28 and I am from Indiana. I found this website looking for Arachnoid Cysts because I have never heard of an Arachnoid Cyst until I was diagnosed on November 4, 2004. I had had several MRIS preceding this diagnosis however no one informed that I had one since 1998.

I was having body pain that started in my legs, I was nauseated and went to the ER. They did a cat scan and sent me home. The ER report they took down that I had body aches, night sweats, tinnitius, chills, weakness. They treated me for headaches and sent me home.

My fill in doctor told me to cut back on my caffeine and he thought I showed early signs of MS, however it was in his report and he did not tell me to my face. He reviewed my films (cat scan and x-ray) and said everything was fine. "She continues to have dizziness and pain in her limbs. She has visual difficulties" which were like squiggly lines. His plan is that he went through the possibilities with me and that my blood pressure was fine. He said I drank too much caffeine and suggested for me to cut back on it. He gave me a decongestant.

He did not tell me however he stated in his report that if my symptoms did not clear up we were to look further since there are early symptoms of MS although "remote."

When I went back to him and told him nothing had gotten better and work was upset because I kept calling in. I have been working for this company for a year and a half I quit and worked there three years before that. He took me off work for arthralgias and myalgis (arthritis). A week later he started testing me due to my multiple complaints such as occasional paralysis. They ran an MRI and then found a "3 cm cyst in the posterior fossa within the cistern magna. It has rounded margins and has the appearance of an Arachnoid Cyst. The relationship to the patients symptoms is not clear. There is no compression of the 4th ventricle or hydrocephalus. There is no midline shift. "

A MRI three weeks later from a different hospital said "there is an asymmetry of the lateral ventricles consistent of normal variation. There is a focal area CSF signal intensity within the posterior fossa just to the left of the midline. This area measures 2.8 x 6 cm." This report said that I had a cyst in my sinus as well as another cyst on my pineal gland. In the post contrast images they noticed a benign venious angioma. (which is a deformed artery and three of my relatives had had aneurysms).

I went to see a doctor in Louisville and he told me that everything was fine. He said that he reviewed the CT scans as well as the MRI of the lumbar and thorasic spine and found a small flovids in the thorasic spine. He did not see an obvious syrinx but one was not to be ruled out. He saw evidence of an arachnoid cyst versus a permanent cisterna magna cyst. He does not see evidence of a Chari Malformation. There is a 3 cm area of hypointensity which looks similar to consistency of CSF which leads them to believe more in the arachnoid cyst.

Since I didn't like his explanation of what he saw he said I could a senior partner (who Catherine Clay also saw in 1990 and asked to do another aspiration since the previous NS left too much fluid in). He said that I have a Dandy Walker.

He said I "could reassure my family that I would never have to have surgery or I would never have problems from this cyst."

My PCP looked at all the evidence. He said I needed help for my "adjustment disorder". He has never treated anyone with an Arachnoid Cyst. So he is following what my neurologist said since these "usually doesn't cause problems." He is referring my to the Clevend Clinic.

The neurologist told me that my symptoms were from stress.

My doctor doesn't want to deal with me anymore.

I know me. My life is fine. I take care of two kids. I am pissed because my body hurts and I want it to stop. Hopefully I will get help and someone out there will know how to help me.

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!