"Grace and Courage"
My name is Olivia. I am 22 and in the summer of 2015 I found out that I have an acoustic neuroma, which is a benign tumor. Mine was the size of a golf ball which is on the large side of the spectrum when it comes to average tumor size. This was a little scary to hear because the larger the tumor is, the longer the surgery takes. I couldn't imagine being under anesthesia for up to twelve hours.
Up until this point in my life, I was a very healthy person and I never had to have surgery or anything like this done so finding out that I had a brain tumor seemed pretty unreal to me. I cried a lot for probably the first two weeks after I found out about my tumor. I cried about the fact that I wouldn't be able to go back to school in the fall. I don't know why, but not going back to school seemed like the worst thing in the world to me at that point in time. Now looking back on it, I don't know why I let myself get so worked up about that. I think it was just the fact that my life was going to change pretty drastically. I wasn't going to get to go back to school after summer break like all of the other normal college students. I was convinced that I was going to lose my job because I was going to have to ask off work for up to eight weeks. My life was not going to be normal anymore and that really freaked me out.
There are a few nerves that can be affected by having this tumor removed and those are the balance nerve, the hearing nerve, and the facial nerve. I learned that I would lose all hearing in my right ear and I could have facial paralysis on the right side of my face. I'm 22 and could look like I've had a stroke for the rest of my life after this surgery. This was by far the most terrifying news that I heard about my surgery.
So after months of knowing that I had this tumor, we finally scheduled my surgery, and the wait was horrible. I was scared of the unknown, of how my surgery would go, and mainly scared that I was going to end up with facial paralysis. The surgery day finally came along and up to that point, I had nothing but support from friends, family, and even from people I didn't know. I knew that morning of, I had a prayer army that was bigger than I could have ever imagined! This whole time my doctors had been telling my family and I that this surgery would last up to twelve hours...it lasted sixteen!
I don't remember much from the first couple of days after my surgery. My parents said I was throwing up a lot. I just picture like a scene from the film "The Exorcist". I was in the ICU for a few days and I got excited when my nurses would ask if I wanted to try walking around the hospital a little bit because I just wanted to get better. I wanted to go to physical therapy and be able to walk again rather than be in a wheelchair.
During surgery, my facial nerve stopped showing that it was active so my doctors stopped operating on me. I did end up getting facial paralysis and my doctor's didn't get all of the tumor out. On top of all of that, I got a blood clot in my carotid artery during surgery so I've been on a blood thinner ever since. This is not common when performing acoustic neuroma surgeries. It's been over three months since my surgery and my right facial nerve has not started working yet. Hopefully, it will come back on it's own, but if it doesn't, I can get a facial nerve graft that will help the right side of my face to start working again.
I have been really self conscious about this and have not wanted to take very many pictures or anything, but I have tried to stay positive post-surgery. I remember reading this message, in the hospital, that a lady sent to my mom who had also had an acoustic neuroma. She was this beautiful woman who had also gotten facial paralysis from the surgery and her story brought me to tears because she was such an inspiration. I'm not a super emotional person either so the fact that I was crying while reading her story says a lot. She had such an impact on me, I even am crying now as I write this.
When I got better and feeling up to it, my mom and her set up a time for us all to meet. She has inspired me to have a positive outlook after everything that happened. I've had a lot of support from a lot of different people, but she is the one who sticks out to me the most and I didn't even know her pre surgery.
It would be so easy for me to just be depressed and wonder why this had to happen to me. I chose a different route. I wanted people to see that even after something this horrible could happen to me, I could become stronger than I had ever been because of it. I wanted to be an inspiration to others just as that woman was to me. I've had so many people tell me how amazing my attitude has been through this all and that's all that I want to hear and if there's anyone else who I could help through an acoustic neuroma surgery just like that lady did for me, I would know that it all was worth it. I strongly believe that everything happens for a reason. I believe that God gives certain situations to people for a reason. I got an acoustic neuroma but I wasn't going to let that get me down. I took that horrible situation and tried to turn it into something positive. I want to help people who have brain tumors. I want to give them hope that it's all going to be okay and that you can't dwell on things in your life. You need to do what you can to make bad situations into positive ones. Life is beautiful, you can't let something like a brain tumor ruin it :)
CHAPTER TWO - THREE YEAR UPDATE (June 27, 2018)
"So I’ve had a few things happen since I wrote my initial story for 7 Billion Ones. Firstly, in May of 2016 I had a facial nerve graft, which is basically where my doctor took my working Masseteric Nerve and grafted it to my weak facial nerve in hopes that my facial nerve would get stronger. When my doctor did my nerve graft, he found out that my facial nerve was still stimulating which was awesome news! So after going back and doing some check ups with that doctor, he assessed that the improvement I was getting in my facial movements were from my original facial nerve, and that the facial nerve graft he did, did not take unfortunately.
Secondly, I got my yearly MRI in January of this year (2018) and one of my doctors said that my tumor was unfortunately growing. My doctor who did my initial surgery in October 2015 said that he would be happy to take the rest of my tumor out, but he also told us about a doctor in California who specializes in surgery for my type of tumor. After a lot of research and thought, my family and I decided to come out to California to get the rest of my tumor out. My surgery was yesterday (June 26, 2018) and it couldn’t have gone better. The surgery was only three and a half hours and I left the hospital the next day, compared to my first surgery which was sixteen hours and I was stuck in the hospital for a week and a half.
After my surgery this time, there was no more damage done to my facial nerve and the little bit of tumor that had to be left has a less than 3% chance of growing back; so no more brain surgeries for me! While I have been out in California, I have been privileged to speak with some amazing hospital staff who have opened my eyes to different hearing and facial reanimation options that I didn’t know about. After my first surgery, I lost all hearing in my right ear and had some facial weakness. My facial weakness has improved, but I am not near where I want to be and my hopes are that in the future I will be able to come back out to California to get another facial nerve graft that will help me to smile better. Until then, I will continue healing and being the best advocate for acoustic neuroma patients that I can be. I have been connected with so many amazing people through this experience and I hope that I have helped them in some way or another. I want to strive to help people be aware of their health and know that taking care of themselves should be their number one priority. Having a brain tumor sucks, but you HAVE to remain positive. Yes, you will have those days when you want to cry and complain about anything and everything. That’s okay, but don’t let those days define your situation. The only way you get through it is by being strong not only for yourself, but for your loved ones. I want to end this with a quote that has stuck with me since before my first brain surgery almost three years ago - I am thankful for my struggle because without it, I wouldn’t have stumbled across my strength.”