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I have been recently diagnosed with an arachnoid cyst, which at first was termed a "benign cystic tumor" but after review from the radiologist, arachnoid cyst is the new diagnosis. I am 19 years old.

I have always played sports, reguardless of the extereme heat or whether I was tired, I kept playing. I began noticing symptoms about 5 years ago while playing basketball with my father. My vision started to disappear, first in spots, then narrowing in from the paripheal towards the center. Needless to say that was the longest five minuites of my life. After going to the doctor I was diagnosed with sports asthma and given an inhalor. It turns out that I also have asthma, but the real problem was ignored.

I am currently a junior at Tufts University, where I major in Computer Engineering (added stress!!) and run track. During winter season of this year, I would experience the visual symptoms more frequently during practice, followed by feelings of extreme weakness and a bad headache. It steadily increased in frequency to the point that I decided to see the school doctor.

He sent me to get an MRA and gave me Imitrex. The first of many migraine medicines that have no effect on my intense headaches. Over-the-counter medicines such as Tylenol, Motrin for migraines, and Excedrin all failed to work. The MRA results came back fine, I had no signs of an anyurism. However, I was told to see a neurologist when I returned home in a few weeks. By that point I began having awfl headaches that were only releived by sleep; I still experience those today.

The neurologist sent me to get an MRI and gave me Elavil for my "exercise
migraines with aura." As well as 4 other migraine medicines that I was to take,
one day at a time, until one of them works. On the fifth day, I called to notify him that each of them had failed to aleviate the pain. They then put me on a muscle relaxor, because my primary doctor thought that I was experiencing neck spasms, and that was what caused my visual symptoms, and that was why the migraine medicine did not work. The muscle relaxor did nothing except combine with the Elavil to make me sleep more than I ever had before. Each day I would awaken between 1 and 2, eat and relax until 5, take a nap until 930, eat dinner and go to bed 2 or 3 hours later. In all, I would be awake for 5 to 6 hours a day.

When we received the results from the MRI, a growth was found, and a second MRI
was requested with contrast so that they could further identify what it was. I stopped taking the various prescriptions because they were prescribed for the
wrong reason and not having any positive affects. The results of the second
MRI indicated that I had either a cyst or a tumor and I was then told to see a
neurosurgeon.

The neurosurgeon informed me that my Pituitary stalk had been pushed upward, as
well as my optic nerves. The cyst is pressing right where the optic nerves cross, which is why my peripheral vision is impacted. The headaches are most likely a side effect of the cyst being where it shouldn't be. Also, since I exercise so frequently and intensely, the constricting and expanding of blood vessles has caused part of the bone there to erode.

I have been informed that the procedure will be a lateral incision and small
pieces of titanium will be secured to my skull to ensure that it will heal properly. He is planning on fenstrating the cyst. One thing that I noticed was that you said there is no cure. I was led to believe that the surgery itself was a cure. If I am mistaken please let me know. Maybe there is a small rate of reacurrance or something to that effect.

I also saw that this is most often diagnosed in children. I did not experience
any of the tempter tantrums when I was younger, however I have recently had "mood swings" and have been increasingly irritable. I can't stand loud noise, and if I get frustrated so easily. If someone yells or talks to me sternly, I feel like I'm going to cry. I still have a headache, I've had one for about 3 months STRAIGHT, with the exception of when im sleeping, which is my new favorite hobby. Sometimes I begin doing something and I'm just like wait, what am I doing again ? The other day I washed my hands with my cell phone in the sink. It got absolutely soaked and didn't work for a while. I've always been clumsy, and needy but it seems odd to attribute things that I thought were just a part of *me* to my cyst. Does that mean that when I get the surgery this won't be the case anymore ?

I am currently looking into whether or not that will trigger the airport metal
detector. My surgery is scheduled for the week of the fourth of July, and I am
trying to find as much information about it now as I can. Your website is very
helpful, and I figured I'd write to you about my story as way of thanking you
since I see that you are looking for input of other's personal experiences.

Feel free to post this on your website, I'd like to help anyone else going
through this if possible.

Thanks,
Jillian

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The Arachnoid Cyst Foundation
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This site was designed and is maintained by Miss Catherine Clay She has recently had a child and is not the best communicator at this time. Please be patient and call or e-mail back!