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Board Members
 

Catherine Clay
Founder of the Arachniod Cyst Foundation
A 501(c) non-profit foundaiton
Studying Arachnoid Cysts since 1992
Catherine.Clay@acyst.org

 

Anthony Butler
CO
Legal Council
anthony.butler@acyst.org

 

Joshua Harris
CTO
Website Admin
Josh.Harris@acyst.org

 

Kathy Blake
Grant Writer
Kathy.Blake@acyst.org

 

Joann Lavis
Secretary
Joann.Lavis@acyst.org
 

 

Kurt Graves
CFO
kurt@taxfreecharities.com

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Catherine Clay
Founder
catherine@acyst.org
800-493-5022

 

Joshua Harris
CTO
josh
 

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please donate. Over 9k people have read this article and I've put my heart and soul into making this a 501-c non profit. We receive $10 a month from 1 person. If you've been helped AT ALL a monthly donation would help us grow and I will spend that money on something important. What we go through is tragic. Talking to over 3k people since 03 has introduced me to some of the most horrific situations but I persevere.. Please help us!

I am writing this story to you after having read others like it on your website. My son, Logan is 3 1/2 years old and had been having headaches off and on for about 2 months until it finally came to him having a seizure on Canadian Thanksgiving Monday at our home in Saskatchewan.

He is normally a very exciting, energetic, outgoing, fun little boy with lots of love for everyone especially his little brother. He was up until this point a very normal,.happy child. He was a great pregnancy for my wife (3 days of labor mind you). But on that day, 7 lbs. 7 oz of pure fatherly joy emerged and my life has never been the same. I thought that nothing like this could ever happen to us, but now I have fear of something. We took him to the emergency room and they immediately performed various tests looking for various things
Blood tests, urine samples, X-rays; the normal stuff.

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Hi my name is Bev.  I was diagnosed with an arachnoid cyst about five years ago. 

Its in the posterior fossa and is about the size of a lemon - or was 5 and 4 years ago. 

I stopped seeing dr.'s 2 years ago because their attitude was "it's all in your head!"

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My wife has an arachnoid cyst; it is a big one . She went to the mayo clinic years back and they didnt want to touch it because of its size. it is 5 inches long by 5 centimeters deep and sits over the serintoma thing; I feel sorry for her because of the pain she deals with , she is the strongest person i know. she has had this cyst for 13 years thats at least when it was discovered, she also has fibro, slipped discs in her neck and a few other things .

i recently fell 4 storys during work and now im paralized for the time being i havent lived with my wife for going on 17 months due to workmans comp - they dont want to modify house , i wsh i was with her so i could help her like i use to before the accident . when you look at it you probably think 'what a couple, ones paralized, and the other has an arachnoid cyst, what a pair. All I care about at this moment is my wife and her pain and finding someone that can help her and possably take the cyst out of her brain . Is there help out there?

 

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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?

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I got this letter today that just sent me 20 years into the future.Because that's how I look at some of these letters and how I talk to people older than me that either won't take drugs, or are just happy with the madness they are living in. But people just keep on living. Keep on going. I don't know if I'm ever going to "fit into any place" because I see myself as totally reclusive and should have this happy little brain with a happy little life and a happy little house when most people (like me) live on disabilty we don't have resources to make our lives better- to make life seem like the joy is there even though you know what tomorrow will bring.

Hope. That's all we have is hope. This lady- all she has is hope and someone on the other end just willing to listen to what she has to say because she's felt so different all her life, and been told the same things over and over, so I don't know how to gauge her symptoms, or how her suffering has changed so much worse than mine.


  I wondered if you have heard about people with arachnoid cysts having periods of time when they feel sick. Nauseous, cold, can't eat (makes you feel worse), headache, lethargic.

I have had two surgeries, one in 2003 and another in 2013 for a programmable valve, which is almost completely open.  Since the new surgery I have had three of these episodes and a stroke like incident of slurred speech, with a numb curled up hand. They still haven't found a reason that caused the stroke.

I've been very ill for the last 5 days, and even water is hard to stomach.

All the MRI's on my cyst and shunt look like the most recent surgery helped but I'm still having problems.  The cyst is very large and has pushed my brain over 3/4 of an inch.

They wanted to do a craniotomy and fenestrate the cyst, and let it drain into my brain but I've had quite a few surgeries in the past two years and didn't want to do it.

I'm disabled from a back accident and 4 spinal fusions, have Rhumatoid Arthritis, autoimmune thyroid and a bad knee that needs replacing, and this cyst makes me sick about 60 days a year. Wish I knew what to do. I'm 62 and they only found it when I was 51. Had symptoms since I was 20.

Thanks
Mary Ann


What do you say to someone like that? I'm at a loss. This is my most hopeless moment, hearing stories such as these. This is one of the reasons I am not ready to advocate bringing the life of a child with this affliction into this planet quite yet. To be an elderly guinea pig is tragic. I've felt like one since I became aware of my mother holding that wash cloth over my head, and screaming about all the blood (and I knew blood was bad but hitting the wall on I-71 without a seat belt?, that's a lot of blood) with momma screaming at dad in the ER for driving on bald tires, that's what I remember from that visit. 

Some doors were never meant to be open while others should have never stayed closed. And the ones that you can't get to open or shut always have an air about them that seeps into your consciousness, trying to make you a better person but just won't. Nothing will.

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When you have an Arachnoid Cyst, it's more like a syndrome because of the stages and Rites of Passage we all must take. It is a long term, degenerative, systemic, auto-immune affliction.

I've had the honor of being raised with someone with a prolactoma, as well as a chiari malformation. I was married to a man when he obtained an Arachnoid Cyst in a motorcycle accident, and I stayed married to him for four years as I was waiting to have my second surgery. Given his true colors, it was a joy to watch him decend into madness. I have dated a man from St. Petersburg with a large Arachnoid Cyst, as well as a girlfriend with a Chiari Malformation. I believe the Russians to have their cysts from the radiation so close from Chernobyl. (There tends to be more reports of Arachnoid Cysts from Fugshama)

In all my personal experience, as I learned to be an advocate, I have spoken with over 2000 people that suffer from this disease.

As tragic as it may sound, if you are pregnant and you can see the cyst on a sonogram, please consider termination. You will do most importantly the child, as well as yourself, a favor if you do not suffer the children into this disease. These issues will not escape you, and the heartache you will save yourself will be much easier to deal with than condemning its life (as well as your own) by letting it suffer horribly. What you will bring into the world is a child that will have problems for the rest of its life. Perhaps a shunt will help, but if you can see it in a sonogram... you will make this child a guinea pig as long as it lives. My last neurosurgeon said, "It is a tragedy". When a child is born with an AC you are causing it insurmountable pain. I know myself that it is easier to mourn the loss of a child than it is to suffer yourself.

Dr. Christopher Duma, my last neurosurgeon, told me that it was a "tragedy" for a child to be born with this affliction.

As a child that is not treated they will do things like beat their heads against the wall or floor, because the pressure is so high that their brains are telling them to kill themselves.

Children as early as three have been reported as saying, "Mommy I want to kill myself." They have emotional issues at the drop of a hat. Some are perfect children that act like they were sent from Heaven, while others are so scary you won't have dishes by the time s/he is a teen. We can have problems with complex social situations (I was caught sleeping in the closet while the entire neighborhood was searching for me because I loved to sleep so much.)

Mandi (who got her first MRI when she was 12) describes it as "confusing" for people to understand. Her brother was also later diagnosed. Children are inordinately cruel and that cruelty lives a lifetime.

As we grow into teenagers we start to understand we are different by the way we act our and behave. Watching my mother battle cancer, I was able to see how her doctor treated her. I was taught how to think like a doctor when I was 15.

I recently discovered my brother has a Chiari Malformation and I have Syringomyelia. When you have a Chiari, your cerebellar tonsils holding your brain start to fall, and that's another way to develop Syringomyelia.

I feel as if we have hit the trifecta of diseases that cause problems, and that are hereditary from when our family were the type of blue bloods to make society move forward, as the tsars suffered from hemophilia. We were unique in our own ways, as we fought over stupid things that I couldn't do, with people I cared about. 

I am seeing this unique syndrome start  in my brother, and I know that he is developing Syringomyelia as his tonsils are being extended; this is what a Chiari Malformation will do. I was lucky to develop my intellect (that scares me), as well as psychic abilities which develop because we suffer with holes on our souls. Some of us are more psychic than others, because we have sub arachnoid (as in sub-arachnoid hemorrhage, or an aneurysm. There is one thin layer of the cyst that is keeping blood and nutrition from getting to, and waste from getting away, from the tissue touching the brain.  So basically it does not get any blood to it, and as the child grows it causes a low seated burn never ends.)

As teenagers, we start to feel the pressure more and more. It feels like your brain is screaming and telling you to kill yourself because your brain can't think straight, or at all. As for me and my brother, our explosive diseases made us attack one another, as well as make it difficult to have a relationship because we didn't like one another.

Some kids get an MRI after they have seizures, which discovers the Arachnoid. Or they experience an event where they lose consciousness, and the doctors want to find a reason. These are usually incidental findings, and are simply dismissed as 'asymptomatic', despite the fact they just had a symptom.

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PLEASE DONATE!!!
 
 your time, energy, and any effort into helping me. I am 501(c)
Here Are  Valuable Links And Resources:

There are other Miscellaneous things to know out there and other places and people to know. These are some links I have found by just being out there. If you would like to add anything including your story please e-mail.

I totally think that you should have these things surgically taken care of IMMEDIATELY. Some doctors like to wait to see if they magically go away and sometimes they do but if you have known longer than a year it's not going anywhere. Remember that "a symptom" is too late to heal once it becomes "symptomatic". This article backs me up on this.

Definitions:
Causes:
Treatments:
 
What Can Go Wrong:
Articles to print to show to your doctor:
Psychology:
Other Stories Out There:

 

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