Friday, July 15, 2016

Back on the Blog!

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.

VNS Implant
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.

CCM3 Diagnosis

 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! 

Monday, September 8, 2014

Before Part One of Surgery

Tomorrow is part one of surgery. I'll be going in bright and early in the morning to attach leads directly to my brain. They will then monitor my seizure activity to find the exact source of the seizures and decide what they are going to remove. If I have three seizures I will be going in for surgery on Friday. If not, I will be going in that following Tuesday. I've known this day was coming for a while but it always seemed so far, and now it's here.

This past week has been hard for me because surgery has been all I can think about. My friends and family have told me that it's going to be okay, but the fear and anxiety is always in the back of my mind. I don't know how long surgery will take or what my hair will look like after surgery, but I know that God has me in His hands. It all comes down to trust. Please keep me in your prayers!

Thursday, August 21, 2014

EEG Test/Update

Day 1: August 6

I was admitted to the hospital for an EEG test at 8:00 AM and got my 4th or fifth hospital bracelet (I guess you could say that I am a collector of hospital bracelets ;)). My medications were cut in half the day before and were then decreased again. I was shown to my room, and after 20 minutes the leads were attached to my scalp; I immediately had a seizure. This is going to be a quick stay at the hospital, I thought. By the end of the day I had 7 seizures which all had the same symptoms: an aura, a tingling sensation on the right side of my face, my stomach dropped and exhaustion set in. This type of seizure was not normal for me because my seizures changed after surgery; it is the same kind of simple partial seizure that I had been having before surgery last year. 

Day 2: August 7

After a rough night's sleep, I woke up to my nurse coming in to check my vitals and see how I was feeling. It was a long day being stuck in bed with wires attached to a bag, and a chord that only let me walk a small distance around my room. Netflix, The Fault in Our Stars, and my French grammar book only entertained me for so long. I envied the other patients who were able to walk around the halls. I had 3 seizures that day. My doctor came in to discuss the results of my EEG so far, and to my dismay, the seizures were in the tissue around the resection site in the right temporal lobe; the seizures were not strong enough to reach the skull. He decided to take me off medications completely to have bigger seizures and monitor my brain activity overnight. Later that night my aunt and uncle visited which was a nice surprise. I am not going to lie, it was a frustrating day that made me break down and cry.

Day 3: August 8

I had one seizure which made it a total of 11 seizures. After two days in the hospital, I hoped this was going to be the day that I was to be released from the hospital. My doctor visited me that morning during his rounds and confirmed that the seizures were coming from the same area where the removed the malformation last year. It is not certain, but he suspects that my surgeon will remove the middle part of the right temporal lobe. My speech and memory are in the left hemisphere of my brain,  so there will be no deficits in those functions. I do not know if there will be possible deficits, but brain surgery is a gamble, you have to trust and accept the outcome. I was released from the hospital that night and could not be happier to have the leads and IV removed.


In the weeks after my EEG, I was emotional and on the verge of tears all the time. I had anxiety that I had never experienced before in my life. It felt as if there was pressure on my chest, difficulty breathing, and feeling as if I could run for miles. My doctor said that it comes from the emotions and fear that I have been pushing aside; it slowly builds up in time, and I had reached my tipping point. I have been so focused on my senior year of college and finishing in four years. I realized that I need to acknowledge the fear that I am feeling rather than letting it fester. I cannot do this on my own, and it was not until last Sunday at church that I realized that I need to give it to God because it is the only way that I can get through the fear and anxiety. 

Saturday, August 2, 2014

A Very Long and Overdue Update!

I just returned from a study abroad in La Rochelle, France. I spent a week in Paris sightseeing, and took a train to La Rochelle where I studied at a local university. I stayed with a wonderful family who showed me what it is truly like to be French. It was an amazing experience!

Before leaving for France, I decided to go back on the previous medication to avoid side effects. While I was in France, my seizure activity increased dramatically; I had nine seizures in July alone. My doctors have scheduled an inpatient Video EEG this Wednesday, which is one of the same tests that I had in May of last year. They will be decreasing my medications starting Monday to encourage seizure activity that they will monitor in the hospital. I was only in the hospital for three days last year with my first Video EEG, so I do not know how long this process will take. After being released from the hospital, the doctors will slowly increase my medications. The purpose of this test is to find out where my seizures are coming from. Part one of surgery is scheduled for September 9, 2014.

Sunday, May 25, 2014

Three Year Anniversary

Exactly three years ago yesterday I had my first grand mal seizure. Looking back on May 25, 2011, it seems like yesterday. I was a healthy young 18 year old who had graduated from high school, and was looking forward to starting college. To have my whole world rocked in a matter of minutes was not how I imagined my life to be. The numerous doctors appointments, MRI's, medication changes, and brain surgery has been a lot to deal with. But through all of the tough times, I have seen myself grow as a person, and I wouldn't change May 25th for anything.

Now, three years later at 21 years old, I am sitting in a good position. I flew to Seattle a few weeks ago to see my sister and celebrated my 21st Birthday which was amazing. In a month I will be flying to Paris for a week and then I will spend the rest of my time in La Rochelle, France studying at a local university. In August, I will be starting my senior year of college at Weber State University. I have a lot to look forward to, and I think 21 will be my year.

Friday, May 16, 2014

A Long Overdue Update

I haven't been able to update my blog for a while due to being busy with school and work. Here is an update on what has been going on lately:

Since December, I have had a total of five seizures. It's frustrating for me because I will have periods of time where I am seizure-free, but the seizures are still breaking through the medication. My battle with epilepsy isn't over, but all I can do is be thankful for the small miracles. 

I met with my Epileptologist yesterday. He decided to increase my dosage and change to long-acting medication. Since I have been having more seizures, I am meeting with my Neurosurgeon next month to discuss the possibility of another brain surgery. There is still more tissue around the first resection that could possibly be causing these seizures as well as other lesions. I will have a better idea of what the future holds after we meet and do an EEG if needed. But in the mean time, I am getting ready to start my summer job, and am preparing for my study abroad in France!

Monday, January 6, 2014

A Great Year

As of January 3, 2014, I am officially three months seizure-free!! Words cannot describe the happiness that I feel by reaching this important milestone in my battle with Epilepsy. My health is stable for the first time in years, and I am ready to face this next semester of college and prepare for France this summer!
2013 was an amazing year for me. I know it sounds crazy given that I had brain surgery, but I was finally able to get the answers that I had been searching for after two years. Not only was I able to watch myself grow as a person, but I also overcame obstacles that I didn't think I could make it through. 2013 was a year for the record books.
I have had some incredible people in my life that I would like to thank. My Neurologist who went the extra mile to help me when she had tried everything to eliminate my seizures; she really took an interest in my case and referred me to my Epileptologist. My Epileptologist immediately helped me on my journey to pursue brain surgery by setting me up for the tests to see if i was eligible for brain surgery - he later referred me to my amazing Neurosurgeon. My Neurosurgeon helped ease my fears of brain surgery and did an incredible job with my surgery. 
Along with the Doctor's, I have some inspirational people in my life that have gotten me through my rough times: Amanda (multiple brain surgery's and is still strong today), and Amy (a cavernous malformation the size of a golf ball that required surgery). Without them,  I wouldn’t have thought that my feelings were normal and that I’m not alone.
Here's to 2014!!