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.

I was a Senior in high school. My family was in Orlando, FL for my sister's national cheerleading competition for her middle school. We had just sat down at a pizza restaurant for dinner when my mom began having what appeared to be a stroke. She told us something wasn't right, that she couldn't hear anymore. She then began vomiting all over the table. She looked up at me and I could see it in her eyes that she was no longer with us, like the light in her eyes had faded. She lost consciousness in the restaurant. An employee had called 911 and luckily the fire department was directly across the street. They responded very quickly and got her to the hospital. Long story short, she had a brain aneurysm that ruptured right there in the restaurant. She was given a 5% chance to survive through the night. If she did, we were told she would most likely have to be put into a nursing home to be cared for.

Today, she is alive and well, living at home. She is the same Mama that I have always known and loved. She saw me graduate high school, get a degree, and get married. The point of telling my mom's story first was that it got the ball rolling for me to get an MRI done to see why I was having so many headaches all the time. Our insurance wouldn't have covered an MRI without some kind of family history, and now I had some. It still took me a little while to go have it done, I was busy with work and school. It was the summer of 2011 before I finally went. I really wasn't expecting them to find anything.

I was working at the hospital at the time and I was able to look into my own chart. After the scan, I opened my chart and looked at the MRI images and my mouth dropped open. I read the comments that the technician had made: massive arachnoid cyst. What the hell?! I had never heard of anything like that before. I immediately called my mom and asked her to google what that was. We talked for a while, both freaking out. I couldn't believe how huge this thing looked. I took some pictures of the images with my phone, so I could show her later. I was in nursing school at the time. I did a lot of research. I met with "the best" neurosurgeon in Huntsville to discuss removing this thing from my brain. He wanted to try to remove it because it was so big that it was shifting my entire brain over past midline and causing so much pressure, he said that it would start causing seizures soon if left alone. I was told that I was born with this particular cyst, and it had been growing in size my whole life. No one knows what caused it, or why. He said there were theories, one of which was that I could have had a stroke as a fetus and the cyst formed as a result. Pretty interesting. Theory though! He had no evidence supporting that.

 

~ed Catherine They are and there are lots of articles about it but this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279101

 

I had a craniotomy in November 2011 to attempt to remove the cyst. The neurosurgeon was unable to remove even close to all of it, he was only able to partially reduce it in size (not by much). He told me that where the cyst is attached to my brain, it is just too risky to try to tamper with it. It could cause more harm than good by messing with it so he left it. I had a pointless surgery basically. All it did was relieve a tiny bit of pressure and shift my brain back closer to where it's supposed to be. It will still keep growing from this point though. I am still having headaches/migraines. I didn't have them for a few months after surgery while the anesthesia was still wearing off and I was on hydrocodone for pain, but that was the only time I wasn't having them. I try to describe the headaches to the doctor as best as I can: it feels like someone takes pieces of my brain and pinches as hard as they can between their fingernails. It's a sharp, pinching kind of pain that starts on the side where my cyst is located and then radiates through the whole side and around to the back of my head. The doctors never listen of course. I also developed a couple psychological issues post-surgery that I had never before experienced: depression and anxiety. I had surgery 11/2011 and by the end of the next year, I had depression in full force. I was calling out of work because I couldn't even get myself out of bed, my body ached, I was having the worst suicidal thoughts imaginable. I also have terrible insomnia as well. I feel like having surgery turned me into a completely different person. Today is 6/30/2015 and I haven't had a real job since 12/12/2014 because of all of this. I definitely haven't been as good of a worker at any of the jobs I have held post-surgery. If it's not the frequent headaches, it's the depression. I have tried getting on anti-depressants, but so far nothing has worked. I'm afraid that it's going to be more difficult finding something that will work (if at all) because I think the cyst is working against me. My in-laws call me lazy and everything else imaginable because they think that I just don't want to work, or something like that, when in reality, that's ALL I want to do. I want to go to work, go to school, live a normal life. I feel like ever since I had my MRI, my life got put on pause and everyone else around me has still kept on moving at full speed. All I want is a sense of normalcy back, but I feel as if I can never get that back at this point. Especially with the lack of help I get from medical doctors in my area. No one seems to know anything about arachnoid cysts, or if they do, they think that they cause no problems. I see otherwise living with one every day. Frequent symptoms as of 06/30/2015: frequent headaches, depression, suicidal thoughts, anxiety, mood swings, insomnia at night, fatigue during the day, body aches, pressure behind eyes, right eye twitch, dizziness, tingling in limbs, balance problems, lower back pain, ringing in ears    

 I do still have an arachnoid cyst on my right cranial fossa, even after my craniotomy. I was officially diagnosed in summer of 2011 when I had my first MRI. I was having debilitating headaches daily, and my mom had recently suffered from a brain aneurysm that ruptured and almost killed her in 2009. This was the reason I demanded to have the MRI, to make sure it was not something serious like an aneurysm. They run on my mother's side of the family. She was the 6th person to have one rupture. She was one of two that survived. The other four were killed by theirs. The youngest was 19 years old. I was 20 at the time of my MRI (I am now 24). They performed the scan and found the huge cyst on my brain. I met with a neurosurgeon here in Huntsville, AL where I am from and he agreed to perform surgery because the cyst was so massive. He said at any time I could have started having seizures because of the pressure it was causing. It was shifting my brain way over to the left, past midline. I had the craniotomy in November 2011 and he was unable to remove the cyst due to its location. He said it would cause more problems if he was poking, prodding, and pulling at my brain. He drained some of the fluid and reduced its size some. I still have the cyst right now as I type and it is still almost as big as it was before surgery. I am still having the headaches I was having before surgery. I have even more problems now after having surgery, probably as a result of the poking and prodding. Could just be the combination of that and the presence of the cyst itself. I now have severe depression and anxiety issues that I NEVER had before surgery. I have anxiety and panic attacks triggered by some of the smallest things. I haven't been able to work full time or hold a job because I tire so easily. My life was completely ruined by finding out about the cyst and having surgery. I know if it was left alone, I could possibly be dead now. I could have had a seizure driving down the road and wrecked or something. It just still bothers me thinking back to how I used to be and how high my hopes were for myself and now looking at myself and I can't hold a job. I couldn't finish school. I'm stuck right now in my life. I'm very happily married and that's the only thing I have going for me. I wanted to share my story and hopefully find others like me so I can maybe find some hope and realize there are others who are feeling like I feel and struggling with the same issues. I am at a standstill right now with doctors because I'm trying to figure out what my next step should be. I know that I'm not right, not the same. I just need to find a doctor that will really listen and try to figure things out with me. I'm sorry this was so long! I have MRI pictures of the way my cyst looks currently. I only have one photo of the first MRI because I wasn't able to get a disc at that time for some reason. I have a disc of my up to date images from January 2015 if you would like to see some of them sometime!