Our Stories

These are the stories I've been collecting since 2003. Hopefully we'll make this whole site more streamlined so people can add their own stories but for all intents and purposes this was the original arachnoidcysts.org.

My name is Heather and I am writing from Tampa Bay, Florida. I ran across your website this morning after speaking with my mom about Jason, my brother.

To give you the condensed version, my brother is 25 years old and has the mind of about a seventeen year old. He is a wonderful, bright man, but has gone through some very rough things. As a child he went to school for children who were learning disabled. Even in Junior High School a teacher called him "stupid".

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I have a Middle Cranial Arachnoid Cyst located in the left temporal region. I hear a pulsing sound in my right ear, suffer from fatigue, frequent headaches, chronic pain in my neck, back, hips, legs and joints that interferes with my life on a daily basis. I feel stiff all of the time, get tingling and electric like shocks throughout my entire body, my vision is getting more blurry, the inability to concentrate is affecting my cognitive abilities and my symptoms are getting worse as time goes on.
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all began one day in summer school when I was about 8 years old. 

I had told my mom that I had a headache and stomach ache, but she did not believe me being that it was the first day of summer school, as pretty much as any mom would.  So I went to school and about a few hours later I called home and said that I was still sick. 

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Hi Catherine,
I just got my MRI results back and they found a 3cm arachnoid cyst in my
anterior middle cranial fossa.
I noticed this location is not mentioned on your site with the stories listed. Is it a common location for arachnoid cysts? I am not finding much info on this exact location.  It was explained to me being in the right cheek area.

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My name is Theresa and I am a single mother of 4 daughters. Twenty years ago I had a chair pulled out from under me and I suffered a back injury. Nothing was done to the person but I have suffered with back pain for 20 years.

A few years ago when my back felt like a big abcess I went to the doctor.

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I live in Kansas City, Kansas. My Neurologist is Dr. Kimberly Cochran. I was at work On July 28th, waiting on a customer, when my left hand started to feel tingly. I tried rotating my left shoulder, thinking that maybe I had a pinched nerve or something, but nothing helped. The tingly feeling was getting worse, when my left eye went haywire. It was like from the center of my eye to the outside edge was just gone. I couldn't see the left side of anything I looked at, It was scary!!

I have been told that I have been having migraines (my mother-in-law diagnosed me, shortly after my husband I married, 14 years ago, so I thought that I was going to have one hell of a migraine. I got up to go lay down in my office, when I noticed that my left knee down to my foot was tingling too. I started to get nervous at that point, because my mother has had two strokes, and I thought that maybe I was having, or going to have, one.

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just visited your web site for the first time; my nephew told me about it, as he has an arachnoid cyst.  I read down the list of symptoms, and found it to be both enlightening and depressing, as I have 25 of those symptoms that I live with each and every day.

I learned only a month or so ago that I even HAVE a cyst, and the neurologist assured me that it’s nothing to worry about, people are just born with them and they don’t cause any problems.  On the MRI film he showed me, it was about the size of a quarter, and of course I have no way of knowing how that relates to the actual size of it.

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In spring of 2000, I was less than 1 year married with a brand new house, the right job, the right car, a boat and a serious health issue. I had been having nausea, headaches, dizziness, trembling, vision problems etc.

I traveled from doctor to doctor from neurologists to psychiatrists and no one could give me an answer. I was told I had anxiety disorders, stress, PMS and even fibromyalgia (I told the doctor it was a trashcan diagnosis).

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My name is Rita. I am 52 years old, married to a mathematician, currently an unemployed medical technologist, and mother of four boys: Chris,16; Mike,14; Patrick,11; and Matthew, 10.

On March 03, 2004 I was diagnosed with an arachnoid cyst in the middle cranial fossa of the left temporal lobe. I had a previous 4-year history of "migrains" although I had never had headaches before then.

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Hello, my name is Catherine Clay.

These are my personal views and they are not popular but it's reality. Reality is a tricky deal because this is painful. This disease is heart on your heart. Our web designer, Joshua J. Harris, died on 4/20. He never felt like he was enough. That he couldn't make it all better and I was just slipping into the void.


<iframe src="https://player.vimeo.com/video/229357130" width="640" height="1138" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen></iframe>
<p><a href="https://vimeo.com/229357130">arachnoid cysts and pregnancy</a> from <a href="https://vimeo.com/user46639586">Catherine Clay</a> on <a href="https://vimeo.com">Vimeo</a>.</p>


I am a woman living with a fenestrated subarachnoid cyst located in between my optic nerves pushing on the pituitary stalk in the suprasella region of my brain. I have had 2 brain surgeries and I started this web site over a year ago before my last surgery because I could never find anything out there, I was tired of feeling messed up and alone and I never want my worst enemy to know what true suffering is.

I am now looking at my third brain surgery to stave off permanent blindness. That's why I became a photographer. I wanted people to see the beauty of life through my eyes. I am the second person with a cyst on my pituitary gland that has another disease caused by this cyst. If you have a cyst in this area RUN to an endocrinologist and have you hormones checked. I have hyperpituitarism. Kevin also has had to take medications his entire life. One of the babes is on hormones because a bad doctor cut his pituitary stalk.

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