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 had an MRI w/ w/o contrast and an ENG done mid october which were ordered by my ENT doc. I finally got a phone call on wednesday (missed it of course) and then another number shortly after from someone I didn't know. I just got a new phone and I had no idea I needed to manually set up voicemail so there were no messages. After a day of playing phone tag with my ENT, I decided to look up the other number and got a shock: it was a neurosurgical center. So I give my ENT another hour to call me back because I wanted to talk to them before calling the other number. Still heard nothing so I decided to just call the neurosurg center and see if they can tell me what is going on. A woman picks up, gets my info, and proceeds to set up an appointment for a consultation. Well I'm thinking, "A consultation for what?"  " Read More "

My name is Kayla. I am 24 years old. I am happily married, living in Huntsville, Alabama. I have had horrible headaches for as long as I can remember, probably since I was at least 7 or 8 years old. I would get them very frequently. I definitely noticed that I got them more frequently than my two younger sisters or even my adult parents. My parents were the kind that liked to avoid doctors at all costs, even though we had great health insurance (explain that one). So time went on with these headaches and they grew more severe and more frequent. Fast forward to February 2009.

My name is Katie D and I was born on Friday the 13th at midnight. When I was a baby I didn't like to be held. I was social but didn't like to be touched. I was born premature. My mom went bowling when she was pregnant and fell down the ally one time. Then I fell out of my car seat when I was 2 months old. I'm 5'4" I have an Arachnoid Cyst located in between the temporal and parterial lobes on the right side of my brain. We think my cyst is 2 cm long and 4 cm wide. I am left handed and I am 21 years old and was diagnosed when I was 17.

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.

Now I feel tired and I feel some pressure on the right side of my head. My temper gets the best of me at work lately and this is not me. I have a shunt on that side. I'm afraid to go back to the doctor. I'd rather think its to be expected after a surgery .My concentration is off wack again. I hate feeling this tried all the time.


My name is Dani and I am 54. I am a supervisor at a medical office.  My husband and I had just returned from an anniversary trip to Hawaii at the beginning of November this year and we were out Christmas shopping. 
I started feeling a little nauseated and went to the restroom.  While there, I had the feeling that I was going to pass out (I am not a drinker).  I made my way back to my husband and fainted.  The store called 911 and when I came to, I was being placed on the stretcher for the ride to the hospital.  My blood pressure has always been low and on the ride there, it was 70 over 52. 

hello, my name is shauna frankum pittard. I was diagnosed last year with arachnoid cyst/arachnoid cyst syndrome.

Mine is on my left side attached to the lower left lobe of the brain. My cyst(as i call it)has a mind of its own. It was caught on ct scan pushing my brain back and forth one millimeter. So, I'm told. I was not there to see the ct scan so I had to believe a radiologist. Boy, could i tell you a story about those. But, that's another  story alltogether.  

   My name is Rebecca, I was having a normal life until I had an accident. I was working at Wal-Mart as a Department Manager when a  piece of grid steel weighing about 50 pounds fell and hit me on the right side of the head I started get really had headaches. I went to serveral Doctors and found a arachnoid cyst on the same side of the head that I got hit on. I have a arachnoid cyst in the stem of my brain that not just an accident cyst. That is something I have to live with the rest of my life. My life has changed tremendously. I have mood swings, dripping sounds in my head that i can hear from my ears,and I can't concentrate. That's just some of the problems i have. Please make a change and start supporting the people thats really ill.
                                                   Thank You

I was first diagnosed with an enterogenous cyst just before my second birthday. They thought at that point it would be over but at that point in time I was the only person in the world to have that type of cyst in that location. Usually they show up on the spine - mine was on my brainstem.

When I turned 11 I had 3 surgeries trying to remove this cyst and and this point they believed to have removed it all. Since that point I have had numerous surgeries attepmting to remove arachnoid cysts that have developed from the trauma from the removal of the original cyst. I just had my 10th brain surgery last fall and I am 24 years old. Because of the location it cannot be shunted.

I find it hard to relate to most others with arachnoid cysts because of the location and lack of options.

I was very lucky in the past month. I was told the cyst had come back and was ready to go into the operating room yet again. The day of surgery we found out the cyst has burst on its own. It was the best news my family has had. However I think the relief is short lived. Since this is the first time this has ever happened we didn't know what to expect. I have had surgery gaps range from 10 years to a few weeks and I am having symptoms again.

The main reason I joined this group was to see if there is anyone else out there who has something similar and although I have found ways to cope with the headaches the dizziness and vertigo are another story. Gravol and vertigo medication only make it worse. Does anyone have anything they can recommend?

Thank you for reading my story.


My name is Robin, and I live in New Jersey. This is certainly not an e-mail that needs to be answered right away, but I wanted to share my story with you
for you to use as a benefit to anyone who it can possible benefit.

I am a 41 year old female. After having my first daughter, in July of 1999,The headaches that I had endured for years started getting worse.. These headaches were so bad that there were times I actually left work and went home to sleep before having to pick my daughter up at daycare. At one point, I think I had seen approximately 6 Neurologists. The last one is the one I remember vividly.

My name is Justin i'm 33yrs old and live in manchester England, not the best place in the world to find out you have an arachnoid cyst, but from reading the stories on this site it's not the only one.

I've only just found this site and it's the best around, it's helped me alot so i've decided to help others with my story.