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 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.

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Dear Catherine,

I am a 41 year old Bakersfield, CA woman, who was two years ago diagnosed with a pineal region cyst, size 1.4cm x .9cm x 1.5cm. relatively small compared to the stories I've read about on your site.

I've been reading your site for a week now and trying to come up with "my story", and decided to just bite the bullet and do it. So here I am. My story begins at my family doctor's office, in December of 2001 where I was for my complete yearly physical.

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Hi! My name is Jessica and I am a nurse. I've just had surgery for my cyst. I had a craniotomy 2-23-04 at Danville Regional Hospital in Virginia. The doctor went in and removed my cyst by going into my brain. I feel like a new person now. When I woke up in recovery there was no headache, no tenants, and blurry vision. I couldn't focus my eyes before the surgery and still have some problems but not like before. My eyes felt like they were going to pop out of my head. My thoughts are clearer now. It was in the subarachnoid space in the posterior foramen under the brain stem. My neurosurgeon seems to think that I was born with it.

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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!"

Is that a joke or what?

I had a build up of pressure slowly over the years til I can no longer lay on the floor and prop my head up on my fist to watch tv like I used to - there's something in the way of bending my neck like that! I also had my arms go DEAD when jogging - not just numb. 

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My surgery was a year ago. The surgery took away the pressure I had felt. I had experienced vertigo and loss of concentration . After surgery I felt very weak and depressed and the doctor said this was expected and it would pass. Which is good because I'm a very on the go kinda person. I needed to get on with my life. After awhile I felt good. Went back to work .
Grateful it wasn't cancer.

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I don't know whether to laugh or cry when I read these stories.  I find new symptoms that I have, that I never suspected had anything to do with the AC.
I was just diagnosed last month.  I think it is in the left posterior fossa, and have no idea how big it is.  The radiology report only said that is was a "normal arachnoid cyst".  I saw the neurologist, who started recommending larger doses of Ibuprofin.  So I said, "is there any cause to these headaches?" and he answered, "oh, you have an arachnoid cyst".  I could have kissed him right then and there.  I was so relieved to find out the cause of these stupid headaches.  I have had them for so long that I thought they were just a normal part of my hormonal cycle. Add a comment

May 21, 2005

I am a 26 year old female with an arachnoid cyst in my posterior fossa (found in 2000 "incidentally" after I went through the ER to the Psych ward - 4cm x 2.6cm).  I had been symptomatic my whole life.  Between the ages of 5 an 10 and at least once a year, I would wake up unable to see.  It would go away within an hour or two, so I wasn't scared and did not tell my mother or father.  I have had "weird feelings" in my head and "brainaches" as I called them.  I started seeing flashes of light when my showers were too hot or I was exhausted.  I could continue, but it would take you too long to read, you know the symptoms, and you have a life (I hope, LOL ;).  The neurologist I saw in 2000 said that I should move on and not let it get to me. (I asked him if he was a psychiatrist as well? tee hee...)  Most AC's are asymptomatic (i.e. yours is asymptomatic.)  Go to the ER when you have the headache of your life.  I LISTENED TO HIM!!!!   I had insurance then and didn't persue it.  I was naive, 21, and frankly was relieved to hear that I would be o.k.

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My name is Dawn, I am 50 and I live in Burlington. My cyst is located in the posterier fossa and it measures 6.3x3.2x2.5 cm.

I discovered I had an arachnoid cyst because my hands went dead and I went to see my GP. One of the doctors booked me to see a neurologist. She thought it was carprel tunnel syndrome. I doubted I would ever have that because I didn't feel I had it. She ran a MRI just to check to see what was going on.

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Hello, my name is Dana and I was diagnosed with a posterior fossa cyst and
an acquired Chiari 1 malformation (5mm) last year at 28 years old. My
symptoms starting off a numb/frozen feeling in my left arm. I let it go for
a week or so and then after it didn't go away I called my GP.

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My name is Christi.  I'm 29 and was diagnosed with an arachnoid cyst to the right of the midline in the posterior fossa.  I received this information originally 5 years ago at the onset of thyroid problems.  I had a headache for about 1 week - that completely knocked me on my butt so I went to the doc, he sent me for some blood work and a CAT scan and upon receiving the results, told me of the cyst.
Of course it was in passing that he mentioned it and only referred me to a neurologist when I requested it.  The neurologist said I shouldn't worry about it because it was not the cause of my headache.  In the mean time I was still hurting from this headache so I went to a chiropractor and let me tell you this - wrong thing to do.  The pain go worse after being cracked and popped...it was awful. Add a comment