"Hi!  My name is April, and this is my cavernous malformation story.

 

Growing up, all through elementary, middle school, and high school, I always had headaches. They were normally on one side of my head. If I didn’t catch them in time by taking pain medication, I would be sick to my stomach. 

 

Fast forward to my first year of university.  As I tried to study, and maintain a social life, it became challenging. I remember trying to do a simple workout and feeling so weak and tired after just five minutes. I began to lose a lot of weight and people would ask my mom if I was eating. It got to the point where the headaches became constant. Near the end of my first year of university in 2013, it was time to prepare for exams and final papers. During the Easter break I had constant pain on one side of my head with sensitivity to light and visual disturbances.  Even during minimal exertion, I was weak and tired. I went to the hospital a few times and was diagnosed with migraines.

 

Around that same time, one night while out at a family dinner, I could barely eat at all. Surprisingly, this also applied to dessert.  This really stood out, as I am a huge chocolate lover, so I really enjoy dessert!  All of a sudden, the room became very loud, like everyone was talking in my ear at the same time, when they weren’t.  This brought on a feeling of weakness and headache.  That evening as I was getting ready for bed, I began feeling very dizzy.  My mom insisted that I sleep with her that night so she could keep an eye on me. The next thing I remember, I woke up the next afternoon and I was very confused.  I thought I was dreaming. I didn’t know where I was. I remember thinking if my mom left the room she would leave my dream.  It turned out, I was in the hospital after experiencing a tonic-clonic seizure in my sleep. I was told that my mom had woken up and I was barely breathing. Upon arrival to the hospital by ambulance, a CT scan revealed a mass in my brain. When the neurosurgeon arrived, they diagnosed it a cavernous malformation, which was the size of a golf ball. This happened on April 1, not a very good April Fools’ joke!

 

I was told I would need surgery, and it took place on April 23rd.  When I look back, I remember I did not overthink it,  leading up to the surgery.  However, on the day of surgery, I was of course, very scared. All I wanted was to be assured that I would wake up. I only realized afterwards that they cut into my skull.  For me, surgery was a lot less scary than waking up after the seizure I had previously experienced. The surgery itself was successful.  I woke up with 25 staples in my head! As they were moving me to my room, way down the hall, I could see my mom. Seeing me at that moment, brought a huge relief to everyone. Luckily, with my mom being a hairdresser, we were able to cover my shaved spot with a braid. 

 

As for recovery, I remember spending a lot of time resting.  I still had some headaches but way less intense.  I also had a very sore neck!  I spent minimal time on my phone or watching tv.  Visits from friends and family were short for the first little while. A lot of that summer was spent trying to gain back my strength. I had amazing support from my family during my recovery. I went back to school part time for two years afterwards and completed my degree with honours.  Later, I also completed a Bachelor of Education degree as well! 

 

The hardest impact for me during my cavernous malformation experience was feeling unwell.  I really struggled through the headaches.  In addition, I also didn’t feel like I was able to enjoy a typical university student life, especially as a first-year student.  When I turned 19, I was not supposed to drink alcohol. I stayed at home due to the supports I required. As well, I had some accommodations in school such as longer time limits during tests.  I couldn’t drive for a year and had just obtained my licence 6 months prior to my surgery. However, with time, I did get back to myself!

 

Today, I am doing great! I am a grade four teacher as well as a part time fitness instructor. I am a wife and dog mom! I take a small dose of seizure medication still due to experiencing some absence/ focal aware seizures. At times I experience headaches, but nothing compared to what I did before. 

 

I feel that my experience with cavernous malformation really helped shape me as a person. I feel that it gave me a new outlook on life and really solidified that we can get through hard things. 

​

I would tell other patients with CM to never give up. Even if it takes you a little bit longer than others, you will get there. You really don’t realize how bad you felt or that it wasn’t normal to feel how you were feeling, until you feel better! I would also tell patients of CM not to be ashamed of your story. I often tell people new into meeting them that I’ve had brain surgery and I say that proudly. I feel that it is something that has really shaped who I am.  People should know what has made us, us!​"