Our Stories

I had surgeries in 1989-91. I was shunted, but now I do not have a shunt.However the past two months have basically been hell. I have had headaches, vertigo, facial numbness, and I constantly feel like I could faint and yes, I drop things often. My doctor does not expect the scan which I am about to have to show anything (which I do not understand at all). I am going to try to take serrapeptase and see what happens. Any info to share?

I have had symptoms for about 15 years now from what I am sure is the subarachnoid cyst I was diagnosed with after seeing doctor after doctor in 1989. I am now 41 years old. The cyst was fenestrated and drained. I was told it was about the size of a lemon. My first symptoms were temporary hearing loss in the left ear, extreme vertigo,headaches, facial numbness, balance problems, weakness, mini blackouts (i.e. not always safe to drive ) I drove into someone's yard when I first experienced these symptoms. It was very difficult to work like I normally performed. I felt like I lost my confidence to do what I previously took for granted.

I was really tired of doctors saying maybe it was stress. Well they helped create a good deal of stress for me! Of course that is not true of all of them. I have definitely seen my share of neurologists and neurosurgeons.

I felt better after my surgery in 1989 for about one month and the symptoms returned. A cysto-perotoneal shunt was place from the cpa area of the brain to drain into the abdominal cavity. Shunts are known to be problematic and it was changed out for another one. I found a surgeon I liked alot and he thought the tip of the shunt was irritating the brain and removed it.

It took a long time for the brain to adjust to not having it, but it did. Over the past 14 or 15 years I would have major and minor bouts of symptoms that I just had to deal with. Vertigo and feeling like I am passing out have been the worst of what goes on I guess and then of course the things that used to be easy are now difficult. I had it pretty good though for at least the last three years and had few symptoms that interferred with daily living. The past two months have been awful with painful headaches, vertigo, memory problems, balance, and some other things.

I am having a scan tomorrow which I almost cancelled because I was having temporary relief of symptoms. I will say that I am interested in trying serrapeptase, which is the substance that a silkworm excreets when it wants to get out of its coccoon. I believe that some Chinese believe it has the ability to break the wall of the arachnoid membrane, however I don't think there has been that much research between the arachnoid cysts and the use of serrapeptase which I believe you can find in healthfood stores. It is great to read about your stories. For those of you who are so symptomatic and can only empathize and hope you can get treatment if it is safe.

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.
Please donate

Amazon Honor System

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!