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.

Hello,
    My name is Lisa Thurston. I am almost 40 (In exactly one month I will turn 40).  The first time I ever heard of arachnoid cysts was about 3 years ago.  My daughter was about 13.  She was having very bad migraines to the point of passing out.  The doctors did a CT and MRI and found an arachnoid cyst. Of course we went to a neurosurgeon immediately and he said.."she has had it since birth, it's in a "good" spot, just leave it alone".  Her cyst is on the side of her brain.  I had my sister in law who is a nurse come with me to the appointment and also later talked to our family doctor and all the doctors said " leave it alone".. So we did. During the MRI they found that she need sinus surgery though and thought that was more the cause of the headaches.  So we did the surgery and she doesn't have many migraines anymore.  Thank you God!

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Tragically due to legal reasons (the patient's ex wife using this letter against him in court) I have had to take this letter down.

I hate people like you that can't just get along.

You are destroying your kids and you don't even care.

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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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I was sitting in my office when north changed to east (literally).

I immediately become disoriented and sick to my stomach. My coworkersnoticed that my eyes were flitching and I had trouble keeping my balance. I called my wife and told her I could not drive home. Being that this was atypical of me, she did not take it seriously and instructed me to drive home on my own. I had to pull over twice to puke, and it became apparent that I had food poisoning; vomiting, dizziness, upset stomach, etc... But this time it was different. I could not speak clearly and I was extremely dizzy.

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I am a 48 year old woman who has just sat here for 15 minutes crying my eyes out reading these unbelievable and sooooo understanding stories from all of you that have suffered as I have for over 15 years.

I once again have started feeling as if I am crazy, and this has helped me so.

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to all my name is Michelle, I'm 33 years old and a single parent.

I really wouldn't know where the best place to start my story. So I guess I go ahead and start from the beginning.

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My a.c. was an "incidental" finding during an MRI.  A brain tumor was also found in the corpus callosum area.

Both, I was told, were incidental and had no influence on my life or on my health.

September 2003 was lost to a migraine and the loss of vision all on my right side.  I have had migraines since I was 18, but this was a colossal epic of pain.  My neurologist did not respond to my one phone call (I don't like to nag).  When he did speak to me he was unimpressed with the event.

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Hi Catherine,


Your website has been of great comfort to me. Thanks for your dedication to
easing the suffering of others. You asked for info regarding AC symptoms in
the 50+ age bracket. I am 59 years old. Five years ago I was diagnosed
with an 8cm x5 cm arachnoid cyst, specifically referred to as a left
occipital porencephalic cyst that was growing rapidly. It has been shunted
into the peritoneal cavity.

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Hello my name is Reese, It is great to see a site dedicated to making people aware of AC and a place for people with AC to be educated.  As a teen I felt normal besides the dizziness and vertigo sometimes.  I thought it was because I worked out alot but it progressed as I got into my twenties along with the fact I had major problems keeping attention when someone was explaining things to me..  I have AFIB which is controlled very well since I was 23 but docs never could get to the bottom of my dizzy spells and balance problems.  The typical run through of inner ear, allergies and IBS was the docs diagnosis which I had none of them when tested.  I just quit going to the docs because they would not help then in 2008 a sledding accident with my daughters paralyzed me from the neck down for hours.  I had gotten a spinal cord contusion which thank God I have regained about everything except for nerve pain and weakness.  While on the table strapped down in bracing I heard the docs talking about a cyst that showed up on my scans.  They informed us it was an AC an incidental find with no harm at all.  Hmm, something in my brain that needed not to be there but was ok. I just had cervical spinal fusion at c3 c4 because of the accident but they said it has nothing to do with the symptoms I am having because they would be below the sight.  I still have the balance and vertigo problems along with couple times a month a weakness in my legs and arms.  This comes along with pain close at the cyst site and a feeling like being in the bottom of a 12ft deep swimming pool.  A pressure thats just there along with numb upper teeth, spasms above left ear all the way around to the cyst site.  These feelings were there before the fusion and they come and go weekly.  When its really bad all I can do is sleep or lay down quickly because I will get sick.  

 

The 2011 films say 3cm x 4.5 cm AC over the left high parietal cortex, parasagittal.  Slight scalloping of the inner table of the skull.  This seems to displace and partially engulf and overlying cerebral vein.  This also causes a midline shift to the right.  I just got the new films but have not gotten feedback.  I know I feel this AC, feel like I am unable to perform old multi-task or take on projects without total frustration. I am not able to design on the computer or read into difficult problems because of this.  I have lost my Engineering job, having a hard time working 8 hours a day and too proud to say I need disability.  I never knew how fatigued a person can get but will try to push on in the job I have currently.  My neurosurgeon says its not the cyst and would cause right side pain n problems.  My neurologist seems to think the cyst would cause minimal problems so he put me on phenobarbital, gabapentin and klonopin.... Maybe in the future docs will be more approachable with regards to these cyst.  My prayers are with all! 

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I had my first seizure in 2001. I was at work loading concrete into a mixer, and I woke up with everyone I worked with standing around me, plus paramedics. I was taken to the local hospital where they did a CT scan. The doctor ordered the CT as he was ending his shift and said if anything turned up, to call him. After seeing the CT, the staff there figured I was just working too hard, and I went home after being released. The doctor came in the next morning for his shift, saw my CT, and called me at home. He told me they 'found something' in my ct, and thinks I had a seizure. He told me to get someone to stay with me. He made a call and I saw the neurologist that week.

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