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.

I am not sure you remember me, but I use to email a little to you before your surgery(Catherine)

My name is Karen, and I found out I had an arachnoid cyst on my left frontal lobe about two and a half years ago.

I am still trying to find out information(to doctor myself persay)I am from Southwestern Virginia and I definately can't get an understanding compitent Doctor around here that has any idea what to do with an arachnoid cyst, and the fact that I am uninsured doesn't help much anyway....Kinda like the saying."No shirt, No shoes, No service" My motto for health care and physicians is"No money, No insurance, No health Care." Or at least that is my personal experience with Doctors...

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I am 39 years old and I have had at least 8 brain surgeries and 4 abdominal surgeries because of my cyst. I typically sleep 2 hours each night.

I was diagnosed in June of 1993. Before that I was symptomatic around January of 1993. I was burning from the mid thigh down and I couldn't sleep. I finally went to see a doctor because a teacher told me that I was limping. Basically I had nerve damage.

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I'm a 35 year old Female who was diagnosed with Ac about a month ago. I have had Fibro for 9 years, which was brought on my being trapped in a burning car and inhaling all the toxins from the burning and melting plastics. However, I did have troubles all my life with things like running and pain in my muscles and was told my Doctors since the age of 5 that they were "growing pains" and would stop once I hit my teens...well guess what? it didn't and hasn't.

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Yer story is, in some ways, very similar to mine. I did not suffer from childhood as you have, though. Many of your symptoms are like mine, and all of  the symptoms have gotten worse the last three years.

I, too, suspect a past head injury. I'm a 45 year old,  6'6" 235 pound Veteran Marine. I'm not lazy by any means. In the past, I could pick up a fully grown man and hold him over my head for as long as I wanted. Let him struggle all he wanted!  In the past, I could outwork any three men in a day. Now, it's all I can do to pull myself out of bed in the morning. Three hours later, I'm ready for a nap.

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whom it may concern:
 
I would like to take the time to thank you for this very informative website.  InDecember of 2002 I was diagnosed with an arachnoid cyst.  In February of2002, I had a neurosurgeon place a shunt in.  Since then I have had nothingbut problems with the shunt tubing, having to go in the hospital twice for themto go in ad uncoil the shunt tubing in my stomach..  Both times I developeda softball sized lump on the right side of my abdomen.   The last episodeI had was in March of this year, and it was so bad that I blacked out for twodays.  Needless to say my wife was scared to death.

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It is a miracle that I found this website.  I am a 42 yo female that was diagnosed with an arachnoid cyst deep in the brain at the left temple in July of 2003.  The MRI was ordered because of the severe migraine headaches, and weakness on the upper left side of my face.  I have this constant feeling of heaviness in the temple, cheek, and the entire eye area. Of course, as with everyone else, I was told "it is insignificant" by my doctor, and that is was a "birth defect"  I was referred to a neurologist for migraine headaches, and this dr told me the same thing, "it is insignificant" and it was a "birth defect". The Neurologist also told me that these headaches and pressure I have on the left side of my face is because of depression, stress, etc, and the neurologist proceeded to teach me how to relax, how to meditate.  Which is all good, if I can find time during the day when I am pain free to do this.  I have tried to meditate during a headache and found myself dwelling deeper into the headache that seem to have lasted for days.  As a fix my dr doubled my antidepressant medication.  (I have been treated for depression for 20yrs. 

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I have suffered from headaches since I was 18.  I will be 50 in April. 

I have done the brain scans and on up the food chain.  I have extreme pain in my head on the left side where the cyst is located. 

They found the cyst with a CT Scan sometime in the 80's.  (I could look up for sure.) 

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I was diagnosed in January of 2000. I had my first seizure at age 35. I had been a teamster for 15 years working in a freezer and switched jobs in 1998. I did construction and was hanging seamless water guttering on the side of buildings. That day I was working with no safety lines. I ruptured a disc by loading the ladder and went to the doctor the next day and I was waiting on a cortisone injection for my back for pain management because I didn't want to take a lot of drugs.

He knew he was going to have to do surgery on my back. I had already had surgery on my back before. I guess the stress from waiting for the shot made me white and then I remember waking up with everyone around me. I thought they had given me the wrong medication.

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on Monday 19th July 2004, 2 days ago I seen my first set of MRI scans... I have arachnoid cysts.

I have 2.
this is what my report says.. [I have roughly tried to work out imperial measurements as I assume it will be mainly Americans that read this, I am Australian and we use metric]

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name is Rashad I am 22 and I live in Houston . I was diagnosed in 2002 with a 5X4X4cm  Arachnoid Cyst located in the right lateral ventricle in the occipital horn.  There is only slight mass effect.

I was getting a lot of headaches so I went to a doctor that did a blood test and said I was low on protein. I found this hard to believe since I was just starting to body build.

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