Brain Surgery – 4 Years Later

Trigeminal Neuralgia is invisible to the vast majority of people. It’s only when you look closely that you see our distant stares, the tics in our faces, and the scars that so many of us bare. Four years ago today, I received my biggest scar – both physically and mentally.

When you receive a devastating diagnosis like Trigeminal Neuralgia, you immediately start looking for anything that will help fix the pain or slow down the progression. As someone who has always been interested in medicine, I took my role as “disease detective” very seriously. I read multiple books, medical studies, and online testimonials. I’m sure I looked like a crazy person with all my sticky notes.

Within days of my diagnosis, I knew that I wanted an MVD. Microvascular Decompression surgery is the most common course of treatment after medications. While medications often make the pain more tolerable, they very rarely stop the pain completely and they are almost always accompanied by debilitating side effects. Extreme fatigue, headaches, double/blurred vision, tremors, loss of coordination, numbness/tingling, loss of concentration, confusion, memory loss, depression/suicidal ideation/anxiety, insomnia, dry mouth, acne, nausea, diarrhea, urinary retention, change in appetite, weight gain, and impotence – just to name a few! It’s like living one of those medication commercials on TV! I, of course, do not tolerate medications very well, so surgery was very appealing to me.

A lot of the procedures for TN can come with a list of side effects themselves. Oddly enough, while the MVD is the most invasive procedure, it has the least potential side effects, which is why it’s a common route for TN patients. The MVD is different from every other procedure because it is non-damaging. Procedures like the Gamma Knife, Balloon Compression, and Rhizotomy aim to damage the nerve further. In doing so, you likely won’t feel the pain anymore, but you can develop permanent numbness in the face, much like dental freezing. Those procedures also carry a risk of developing Anesthesia Dolorosa, which is having no feeling in your face, but still having the trigeminal pain. These procedures have helped many people, but they tend to carry more risk. The MVD, however, does not damage the nerve. The aim of the MVD is to find the source of damage, most often an arterial or venous compression. They carefully move the artery or vein out of the way and place pieces of Teflon over the damaged area. The Teflon acts as a barrier between the blood vessel(s) and the nerve, just in case the offending vessel(s) try to move back to their original position. Science!

I saw this procedure as my only hope, which came back to bite me later. I talked to my doctors and they were on board, so they referred me to a neurosurgeon. Unfortunately, as I was only 16, things were a bit complicated. Pediatric neurosurgeons don’t perform MVDs because TN is almost exclusively a condition seen in adults. The adult neurosurgeon was okay with executing the actual MVD, but was apprehensive about performing a craniotomy on my tiny head. So this led to me having both a pediatric neurosurgeon and an adult neurosurgeon. Then, to make sure I was a suitable candidate, I had to meet with an adult neurologist that was more knowledgeable about TN. Side note – that adult neurologist became my full-time neurologist after I transitioned into the adult world. She’s fantastic! But long story short, surgery was scheduled for March 11th, 2015. One month after my 17th birthday.

I remember that day pretty vividly. My mom and I left the hotel around 5 a.m. to go check-in at the hospital. I can recall every hug before we left; it sounds stupid now, but I didn’t know if they would be my last hugs or not. As soon as we got to the hospital, my fears vanished and were replaced by acceptance. My nerve was reminding me that it was still broken and I was excited to fix it. I remember putting all my street clothes in a bag and getting into the gown and pants. They were one-size-fits-all and just gigantic on me.

We were escorted back to a new room where there were approximately 6 other people waiting for surgery. We had numbers over our heads and I remember being weirded out by that. The lady next to me was comparing our matching pedicures – toe nail polish was the only little bit of character we were allowed to have. I was then called back to the operating theatre. I said goodbye to my mom and walked with the nurse to one of the biggest rooms I had ever seen. I was asked to fully unclothe, but I had tied the giant pants on too tight and they had to cut them off of me! Everyone in that room was so lighthearted and we just laughed until it was time for me to count back.

10 9 8 7 6 5 OUT

The first thing I thought off when I woke up was “I need to pee BADLY.” The nurse said that they had put in a catheter and proceeded to readjust the tubing. I didn’t know how a catheter worked and I thought that you might have to push to get the pee out. The nurse promptly told me to stop pushing and as soon as she straightened the tubing, there was immediate relief. I fell back asleep.

When I woke up again, I was in a different area of the recovery room. I was more lucid this time and finally realized what had just happened. I remember touching my face and not getting a zap and just feeling my eyes well with tears. It was all over – my journey with pain was over. The nurse came back and asked if I wanted to sit up. I was attached to so many different tubes, so it was a bit of a process. Between the oxygen tubing, my IV, the blood pressure cuff, the pulse oximeter, my catheter, and the two leg compression cuffs, I couldn’t move without getting tangled! I remember my lower back hurting when I tried to sit up. That little pain created a much larger problem in the coming days, but I didn’t think much of it at the time. I was hungry and tired and wanted to tell my family that our lives could go back to normal now.

My surgical team came in soon after and discussed how everything went. The surgery took 5 hours and they had to place a shunt in my back to drain off some excess fluid; that explained why I was having lower back pain. When they told me that they had found a complex of veins and an artery on my nerve, my eyes started to well up again. It was the first time that I was assured that the pain was real and that I wasn’t crazy. They had seen the problem and the resulting inflammation and they had dealt with it. After the recovery room consultation, the team told the nurse that my family could come and see me. I was so tired, but so excited to tell them that everything was going to return to what it used to be. For so long, I had felt like a burden to my family. I knew that they didn’t see it that way, but it’s how I felt. They had taken so much time off of work and out of their lives to help me combat this pain. I knew they were dealing with their own grief and loss. Finally, everyone could go back to their normal lives. The plan was to spend a night in the ICU, a night on the neuro floor, and then be released back to world to start the rest of my life. Little did we know, I would be in the ICU for a week.

My memory of the next week is pretty vague. I just remember that every time I would sit up, I would get a raging headache and I would vomit like I was going through an exorcism. I had a cerebrospinal fluid (CSF) leak. The surgeon wanted to give me a few days to see if it would repair itself on its own, but it never did. I believe it was on the 5th day that they decided to do an Epidural Blood Patch. Just the name makes me shutter. The procedure involves taking my own blood and infusing it into my spine through an epidural needle. The thought behind it is to one, replace the pressure of the lost fluid and two, have the blood coagulate and seal wherever it is I’m leaking from. It’s incredibly painful. Just like any needle-in-the-spine procedure, they want you to sit in a specific position. However, I couldn’t get into that position without vomiting profusely, so we had to go about it a bit differently. Unfortunately, the first patch didn’t take and they wanted to try another one the next day. That’s when my emotions got the best of me. I went into a full-fledged panic attack because I didn’t want to go through the procedure again. That being said, I also just wanted to get home and start my pain-free life, so I sucked it up and got it done. Thankfully, the second blood patch took and I was able to start the slow process of sitting up again.

I will never take independence for granted after that week. I couldn’t go to the washroom by myself, clean myself, eat by myself, or move. I had to fully rely on my loved ones and nurses to function. I feel incredibly grateful to have received the care that I did during that week. Not only did I go home with a new scar, but with newfound appreciation for life.

As you know, the surgery wasn’t the end of my pain journey, but it was an experience I will never forget. I am so thankful to have had 3 months without pain. My disease has progressed significantly since 2015 and I am in more pain then I thought was possible. I am in the emergency room for infusions once a week, despite being at the maximum dosage of meds allowed. This disease is ruthless and it has taken so much from my family. However, it will never take away our hope and it will only strengthen our love for each other and for life in general.

This brain surgery anniversary is a bit different than the other years, as we’re headed back to see the neurosurgeon. There’s a high chance that we will be doing this all over again. I can’t explain what it feels like to be excited and terrified at the same time, but I truly feel like we’re headed in the right direction. I hope that my story can raise awareness and help others living with this disease. The world is a stronger place when we work together.

With So Much Love,

Mackenzie