When my neurologist first mentioned that brain surgery is even an option for me I left the office in complete shock. As he told me, it probably looked like I was about to get hit by a semi truck with my eyes popping out of my face while I just slowly nodded my head and said that I would consider the option. I tried to come off as if I was completely open to the option. I don’t know why I would pretend to be okay with part of my brain being taken out. After trying one more medication, brain surgery is the next option and maybe even last option that I have. Im not holding my breath that this medication would work as I have tried so many medications and been told they have less then a 5% chance of working on me now. My chances are quite slim. Therefore, brain surgery is on the table.
I don’t know where to start when trying to explain where the fear of brain surgery comes in. From my understanding, the brain surgery would consist of a neurosurgeon removing an area of my brain in the temporal lobe where the seizures occur. Then my brain would have to accommodate to the change with rewiring or just changing how it functions. I was also told that you will be awake during the surgery. You obviously won’t feel pain but they must test out how your brain works. To me, it sounds like it is straight out of a horror movie. I am the bystander watching the dumb actress agree to these horrific plans.
I currently follow an epilepsy brain surgery group on Facebook so that I can hear about the successes, failures and risks associated with it. Lets just say that it does not have a 100% success rate. Everyone’s surgery seems to come with a great amount of negatives. Lots of people just have a reduction in their number or severity of seizures. Others have numerous brain surgeries before they see a change or a stop in them. I am actually shocked to hear so many people (seems to be most of them) have had numerous brain surgeries and still have seizures, yet they seem to be satisfied. The side effects are the scariest part. Your epilepsy may very likely get worse and way more severe. The brain surgery may also come with side effects such as your loss of ability to actually speak, remember very important things or change your personality entirely. This sounds horrific to me. I do not know if I would be strong enough to cope with this. I question if people are simply trying to justify their decision when they talk about it.
What happens if your neurosurgeon is just having an off day? Or there is a full moon? That surgery could ruin my life. I have had days where I get excited about the surgery. Maybe this is my solution since I am so sceptical about anticonvulsives (Seizure meds). This will not be an easy decision to make. It is not just something that you try to see if it works because “why not”. It is not something that you should feel comfortable with for if you do, you probably do not fully understand the risks involved. I don’t feel that anyone should be comfortable with brain surgery. I am choosing to not just put on a brave face and pretend to be okay with this decision. When it comes up again, I will express my fear and seek answers to my questions that must be answered before any decisions are made.
Accepting brain surgery is to me at the same level of accepting and coming to terms that you have epilepsy. Just like when I first had epilepsy and told someone, now when I mention to someone else that I might have brain surgery it takes a lot out of me to not break out in tears. It seems to be a whole new stage in one’s epilepsy.
People who decide to have brain surgery are extremely brave. I have a great amount of respect for them. Their optimism is what especially astounds me. The thought of going through another brain surgery after failed brain surgeries with a smile on my face is just not something that I see as possible. If I had to go through failed brain surgeries I would be pissed to be honest. I get super angry when I spend a couple hundred dollars on medications that don’t work. I get mad if I buy a two dollar coffee that wasn’t hot enough. Although, I also do believe that everyone is more brave than they think they are. Maybe this is just something that will show me my bravery. Maybe life is just testing me. I just don’t know the correct answers to the test yet. Times of discomfort is where we really learn the most about ourselves and grow.
Failure is a Pathway to success.