Post Surgery Maddness Cavernoma

At age 15 I was told I had a brain tumor, it was not cancerous, but leaking or had leaked. I had a cavernous angioma, which was a tumor that was weak allowing blood to leak which then created scar tissue in my brain creating abnormal electricity. They could not tell much from the MRI. I had had one seizure at that point a grand mal. I had one or two more over the next few year, but in the fall of my freshman year of college my seizures changed. I was told my seizures were now partial complex. I began to have more of them as time went on. Eventually I had to stop driving, attempt to take medication, and wear a medical ID. The medication did not control my problem at all. I was on 3000mg of pills after trying may different meds which I was allergic to only to find that it would not stop my problem.  I would again at age 21 be told the MRI was of not much help as the tumor was more than they expected. They had to go deeper to remove it all and my hippocampus had been hit along the way which may cause me to feel "off". The first few weeks after surgery were hard as I had left the fall semester of my senior year early. It's a small school so I am close with many classmates. What I had done hit me like a ton of bricks. I woke up from a nap one day and started crying my eyes out, after that I had panic attacks in thoes weeks too. I felt bad, I was having trouble sleeping and had an addreinaline rush I could not get rid of. I looked into sky diving. I was so low at one point I told my mother I was sorry that I broke myself. I am sleeping some what better a little more than a month later after a talk with a friend and I no longer have panic attack, so I am improving, but I still have a little ways to go. As I am now in my spring semester of my senior year(yes I did return to school I need 9 credits to graduate) I am frustrated as explore the new waters. I am scared to enter the real world, I am finding myself scared a lot about many things. While people tell me I need to rest more, I want to do more to live my life so that I can ease the scared feelings. Especially as I am not sure what I want from the rest of my life. I recently found out that this problem is tied to my genetics which is why I have multiple ones, but as this is a new area of research they do not know the odds of the one taken out growing back or the other tumors I have doing the same things, but as I said I want to live my life.

fearfulbutterfly fearfulbutterfly
18-21, F
2 Responses Jan 24, 2010

Hey,<br />
My name is Alexa. I have brain surgery when I was 13 years old and I am now 21 years old and in my Senior year of college. After I had mu surgery, my outlook on life completely changed. I know how challenging the emotional recovery is. Just go after your dreams. Do what you love to do. Always. Life is way too short and we do not know how long our journey will be. You must srtip yourself of fear and tell yourself ..."hey, if i can get through brain surgery, I think I'm pretty capable of accomplishing great things" If you want to live your life...do it! Travel the world, take dance lessons, form a book club, learn to play an instrument. Nothing can hold you back but you. Your mind is extremely powerful. Use a positive mental attitude and perhaps start an awareness program about Brain Surgery and what it is like. Share your story with other patients at the hospital you had your operation at. If you ever want to talk, feel free to write back~<br />
All my Best and God Bless,<br />
~Alexa

I can understand being scared. It is very scary and most people don't understand. It's one of those things that unless it's happened to you, you don't get it. I feel like there is no 'right" way to feel. How YOU feel is the right way, as far as I'm concerned. I was so scared I made my husband wake me up frequently and sleep with the lights on. I was afraid to fall asleep for fear of not waking up. (((((HUGS)))))