Brain Stem

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.

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Hi,


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.

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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.

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