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.