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J. W.


(years diagnosed)

THE BABES

Ema(2)

Ruben(2)

Daniel(2)


Katie(3)

Mom(11)

Justin(3)

Jessica(1)

Meg

Hobie(4)

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Chance(3)

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Sara(2)

Jacob(2)

Anon

Logan (4)

Mandy(4)

Mandi(7)
heridetary...
her brother has one too
.
Tracey


THE ADULTS


SPINE

Kathi (2)

Marvin(1)

Loretta(2)

Anabel(4)

Carrie

MIDDLE

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Catherine(me) &
Journal

Mare(3)

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Angie(1)

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Nate(7)

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LeslieU. (1)

Meagan (3)

Lavona(2)
*hereditary

Royalyn(2)

Rita(5)

Justin(7)

Jill (1)

Barry


Linda

Jen D

RIGHT TEMPORAL

Telisha(1)

Darren(5)

Andrew(4)

Sheri(4)

RIGHT
TEMPORAL & PARTERIAL

Katie D (6)



                        100+ other people know it's not "all in your head" Please join me in keeping it real.

My a.c. was an "incidental" finding during an MRI.  A brain tumor was also found in the corpus callosum area.

Both, I was told, were incidental and had no influence on my life or on my health.

September 2003 was lost to a migraine and the loss of vision all on my right side.  I have had migraines since I was 18, but this was a colossal epic of pain.  My neurologist did not respond to my one phone call (I don't like to nag).  When he did speak to me he was unimpressed with the event.

At times it feels as if needles are being driven into the right side of my brain. I ask questions of my doctor, but I don't understand the answers and, at times, I think my doctor must have had some government position in the past, because he spins the answers and I just can't keep up and ask a question to an answer I didn't understand.

My migraines are coming more often, stay longer and do not respond well to my pain reliever - Vicodin . My therapist, who is also a nurse, asked why the thing has not been removed.  I'd like it removed.  I don't like having some spider-like thing doing whatever, in my brain.  But, the doctor says there is no reason to have it removed. 

My primary care physician says I might become a paraplegic. 

I told him if it relieved the pain, I didn't care. I am not certain, as I have made no measurements, but I think the back of my head is beginning to bulge on the right side.  This could be my imagination.  But, the pain is so great there and I can no longer lie on my back because of the pain that causes and because my head doesn't seem in proportion anymore.

What do I do?
What questions do I ask?

I can't help thinking that if I were a man I would be heard.

I had an evoked potentials test and it seems there is little activity between my brain and my feet on the right side.  I ask him why, he doesn't know (after telling me it could be MS [a subsequent spinal tap and more MRIs seemed to confirm that I do not have MS]) and won't pursue it and I don't know how to ask him AGAIN and get a real answer from him. I don't know what to do.

If you have any advice; if anyone has had the same experience; if anyone has the same symptoms (my husband says not to bring up the part about the needles as it sounds weird), please let me know.

I'm sure the problem is with my inability to ask the right questions; my doctors are regarded with great respect in the medical community and I have checked their credentials and have been graduated from outstanding universities.

Thank you for your site.  It gives me more information and it is good to know that there are people out there who have the same problems and may have some answers for me.

Thank you,

Jennifer

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PARIATAL

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Tom B (15)

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CALLOSUM


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(MOST COMMON)


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Robert(3)

A Husband's
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Bill(3)

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Stéphane(2)

Karen(3)

Lance(2)

Lisa(4)

Christine(7)

Richard (3)

LEFT OCCIPITAL

Francine


MIXED STORIES


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

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