Fall of 2014, I went in for my second brain surgery to remove more of the tissue around the resection site in 2013. I got more than I bargained for in one week: 3 brain surgeries. 2 out of the 3 surgeries were to place grids directly onto the brain to get a better idea of where the seizures were coming from (an in depth EEG). After the first surgery that week, I had multiple seizures but they were not strong enough to give the doctors a strong sense of where the seizures were coming from. A few days later, my doctor came in and asked if I would like to pursue another surgery to place more grids on the left side of my brain. At this point, I remember thinking that I would do anything to find the source of my seizures, so I agreed to a second surgery. The surgery to place the grids was successful, however, the seizures were still not strong enough to give a direct source of where they were coming from. A few days later, my medical team made the decision to remove more of the tissue around the resection site of the cavernous angioma the year before. The third and final surgery in a span of one week was successful. I was restricted to a hospital bed for a total of 9 days during my stay in the hospital and it was rough, but I made it through. Unfortunately, my seizures did not subside after surgery. Thus, leading to my decision to get VNS.
Summer of 2015, I made the decision to get the Vagus Nerve Stimulator (VNS) implant. The VNS implant is a device that is like a pacemaker, but for the brain. It has a generator that is placed in the chest, which then has a wire that connects to the left vagus nerve. When the device is turned on, it sends an electrical pulse up the wire to the brain to regulate the seizure activity in the brain. For me, it goes off every 5 minutes for 30 seconds 24/7. When it goes off, due to the wires being so close to my vocal chords, my voice goes quiet when I go to talk. At first, this was something that was annoying, but I have adjusted to it. A couple weeks ago was my one year anniversary of VNS, and although it has done many positive things for me such as: seizure reduction and control, I reached a point of having to turn my device off. My device started to malfunction and cause shocking pain to the point of extreme discomfort. I taped the magnet over the device (for those of you who have VNS and don't know, this will turn the device off if you need it to). After 5 days of pain, I was able to turn the device off. I also found out that I need to have a root canal and the VNS was bothering the nerve! This is not the end of the road for me with VNS; I am going to give it another shot in October.
I was diagnosed last year with a rare genetic diagnosis that less than 100 people in the world have. It is the most aggressive form of the CCM gene and I tested positive for it last year. My parents did genetic testing and tested negative which means that my siblings do not have a chance of having CCM3. I am the only one in my family to carry it, and I am the first to start the gene if I decide to have a family in the future. This was a huge pill to swallow finding out that I have such a rare genetic diagnosis, but I was brought such peace because I was able to meet with Dr. Awad, a world class neurosurgeon, last year in Chicago. He has done extensive research on cavernous angioma and was able to finally give me a lot of the answers to questions I had had for the past 5 years. When I met with him, I had an MRI done with special sequencing and found that I have 32 angiomas instead of 13 that regular MRI's were finding on the MRI machines in Utah. I meet with him again this October for a followup appointment.
Medications & Seizure-Free
I have finally found medications that are without side effects! This is huge for me because I have tried about 11-12 medications in my 5 year journey with epilepsy. I went back to an old med that I was skeptical about, and I have been doing quite well on it. I also added another med from the same family that made me tired at first that I wasn't too sure about, but I rode it out and now am doing well. I had a rough night last month that led me to the ER. I was driving to the airport to pick up my sister when I was starting to feel funny. Something in my brain went weird and the right side of my body went completely numb. My first thought was: I'm having a bleed. I have a plan for moments like this when I'm driving: pull over, turn on emergency flashers, and call someone. I was conscious through the whole seizure, but I was so scared that it was going to turn into a gran mal. I called my parents and they came and got me. My mom drove me to the ER and my dad picked my sister up from the airport. The wait at the ER seemed to take forever, but I got in and got a CT scan which came up as no sign of acute hemorrhage. This was a huge relief, but also somewhat a letdown because my body was telling me that it had to have been a bleed. The doctor came in and told me to really keep an eye on my stress and this was a huge eye opener for me because I don't know how to stop and take care of myself when I need to. I was sent home on strict instruction to take it easy and better manage my stress. After that moment, my medications were increased and I had a 16 day seizure free streak!! Unfortunately, my seizure free streak was broken last night, but I can always start a new seizure free streak!
My Life Outside of Epilepsy
Outside of epilepsy, I have been getting work experience and trying to figure out what life looks like post-graduate. I graduated college in 4 years despite my health struggles and found a way to pursue my dream of studying abroad in France along the way. After graduation, I have been working as a mentor to teens which was not what I pictured for myself, but everything I needed to grow as a person. I have grown a lot and have gained a lot of leadership and mentoring skills. I also spend my time volunteering for Angioma Alliance as a Peer Volunteer for those who are recently diagnosed with the illness. Now, I am finding ways to reduce stress to keep my seizures at ease. I will try to update my blog, so please check the blog regularly!