On July 13th, I will have been living with Trigeminal Neuralgia for 6 years. For some reason, it doesn’t seem like it’s been that long. You see, when you live with a chronic illness, it’s vital that you take things day by day… and that’s exactly what I’ve been doing; fighting against my own body every day, every hour, every minute, and every second. Time hasn’t been relevant for 6 whole years. When I look back, I can’t help but think of all the things I’ve missed out on and the opportunities I wasn’t able to take because of this disease. I guess I never considered to watch the time because it’s horribly depressing to think about your life wasting away and not being able to do anything about it. But just when those thoughts started to consume me, just when my body was reaching it’s final limit, and just when I realized that I couldn’t sustain my lifestyle for much longer, I was given an opportunity. Hence, the Great Head Snip of 2019!
I’ve got to say, it’s weird to feel calm and comforted by the prospects of a second brain surgery when you’re only 21 years old, but when your life is consumed by pain, it’s a pretty exciting opportunity. I was well aware that this was a “Hail Mary”; I have tried every medication, medical marijuana, nerve blocks, infusions, Botox, chiropractic, a prior surgery, and so much more to little or no avail. To say I was damn ready to give this a final shot is an understatement.
At first, I didn’t really feel nervous, just ready and excited to have a shot at a new life without pain. But as the weeks passed, my anxiety grew and became almost unbearable. I cried a gross amount and I am not a crier. “What-ifs” flooded my mind. What if this doesn’t work? What if I wake up in even more pain? What if there’s complications again? Fortunately, the weeks leading up to the surgery went fast and I didn’t have to sit in a state of fear for too long.
I’m sure you’re reading this and thinking, “Hey Kenzie, get to the juicy surgery details already”, so here you go!
We drove up to Calgary on Sunday and stayed at a hotel over night. The next morning, I was told to phone the hospital and find out what time I’d be admitted that day; we were surprised when they said they were ready for me at 10 am. So we headed to Foothills Hospital on the beautiful morning of Canada Day. That day was spent reiterating my entire medical history and undergoing pre-surgical tests. It was also spent having a resident jerk my head around, which didn’t feel very nice. I thought my grandma was going to jump at his throat, haha! I feel very fortunate that I had my family there with me to keep me calm and distracted.
The nurse told us that surgery was scheduled for 7:30 the next morning. I was excited about this because it meant that I didn’t have to fast during the day – the less time without food, the better! At that point, I had to say goodbye to my family for the night. Luckily, the nurses were able to sneak them in before visiting hours the next morning, so that I could have a proper departure party before heading to the operating room.
The operating room was just how I remembered it from last time – big and blindingly bright. I hopped up onto the cold, metal table and for the first time in weeks, I was no longer nervous. A wave of acceptance washed over me as I realized that I had no control over what happened next. In my mind, I knew that no matter what happened, I had a good support system and we were going to get through this. The anesthesiologist started an IV and placed a mask over my face. I remember the mask hurting and a single tear falling down my cheek. I couldn’t wait for the moment that I could touch my face without pain again. The nurse held and rubbed my hand as I drifted off.
I woke up to a bustling recovery room and I remember feeling tied down and disoriented. I had a nasal cannula to deliver oxygen, a pulse oximeter, a blood pressure cuff, a catheter, an IV, an arterial line, and a compression machine attached to both legs. One of the nurses came to remove the arterial line and I remember making her laugh when I told her that I purposefully removed my arm hair before surgery, so as to not get a wax job when they took all the hospital tape off. At this point, no one had informed my family of how the surgery went. I guess my mom and dad flagged down a nurse and they were allowed to come into the recovery room to see me. I looked good at this point and despite my throat being incredibly scratched and sore from the intubation tube, I was able to get down a glass of water and half of a bran muffin.
I was still feeling pretty good when I got to my new room. I was very excited to see my family and tell them that, as far as I could tell, surgery was a success! However, as the hours went on and the freezing wore off, I started to develop a lot of surgical pain. Tolerable pain turned into tears and severe discomfort and the initial attempts at pain control were unsuccessful. The charge nurse came to the rescue, very clearly said “this is not okay”, and decided to contact the surgical resident. Mom and Jon were allowed to stay past visiting hours to hold my hand and rub my back as different meds were arranged.
I woke up around 3 in the morning, as my pain levels were increasing and my oxygens levels were low. Luckily, I fell back asleep shortly after more pain meds were administered. When I woke up a couple hours later, I was feeling incredibly sick. I had no food in my system, though, so I just dry-heaved for a half an hour until the nausea meds kicked in. Every time I gagged, it felt like my brain was going to pop out. The surgical resident popped in during that time and started asking me if I was having other symptoms of a CSF leak. Despite me having a pretty bad headache (kind of expected after brain surgery), I was confident that I didn’t have a CSF leak. I’m quite familiar with how those feel after the last surgery! As the day went on, I could feel myself starting to feel better. I was confident that I had got through the worst of it and I’m so happy to report that I was correct in thinking that! I was able to have my catheter (Phillip “Fill-It-Up” Jones) removed and I even started doing laps around the neuro ward.
My surgeon came in that afternoon to talk about everything. Surgery lasted about 5 hours and in that time, he had performed the classic microvascular decompression, placing Teflon between the nerve and the offending vessels/artery. After the MVD portion, he “massaged” my nerve to damage it and hopefully give me longer-lasting relief. After all the surgical talk, he gave me the most unintentionally horrible pep talk I’ve ever had. I know he meant well, but he worded things very poorly. He talked about dependence on medication being like a smoker with a cigarette; while I understand the euphemism he was going for, I think there needs to be a distinction between an addiction/bad habit and needing medication because it’s the only thing that allows you to even slightly function. He also joked that I should take up drinking (only) 30+ year old Scotch and smoking pot, which made the nurse shake her head in disbelief, haha. The underlying message was that I need to do everything I can to get back to a functioning lifestyle. Through no fault of my own, my body isn’t strong right now; I need to exercise it and get out and do what my peers are doing and take back the 6 years that I’ve lost to this disease. Even though I was initially very angry at him for the way he worded everything, that’s a message I can get behind. I spent the next day in the hospital cleaning myself up and going for lots of walks. I may have initially been operating out of spite after the “pep talk”, but I don’t think the reason “why” really mattered in this scenario. What mattered was that I was pushing myself in a good direction and I strongly believe that’s why I am doing so well after this surgery.
I was discharged during lunch the next day, exactly two days after surgery.
Now, I’m not going to sit here and kid myself and say that this is never going to come back… because it will come back one day; that’s the nature of this disease and I’ve known that from day one. However, I’m also not going to sit here in fear and idly wait for that day to come. This girl has got some big plans!
*cue my whole family telling me that I need to take baby steps*
Since discharge, I’ve gone to the Calgary Zoo, I went to a board games night, I’ve probably gained 5 pounds from eating crunchy foods that I couldn’t eat before, I’ve booked a hair appointment, and I’ve brushed my teeth EVERY DAY. Just this upcoming weekend, I’ve got support group, a lacrosse game and tailgater, and a BBQ. Instead of dreading these things and fearing the amount of pain they’ll leave me in, I’m excited for them! Baby steps, but big baby steps nonetheless. Not every day has been sunshine and rainbows and I’m still needing a lot of pain and nausea meds, but this is a damn good start in my books! The last physical things tying me to this surgery, the 16 sutures, come out on Monday. Bruises and scars will fade, but the memory of this surgery will last forever and I’m so grateful that it’s a good memory this time!
Thank you so, so, so much for all the love, support, kind words, gifts, and more. Despite the situation and all the pain and anxiety surrounding it, there’s not been one second where I’ve felt alone or unsupported. I love you lady and gentlefaces so darn much!
Love it pretty lady. Keep moving forward ❣️
You are the most inspiring, heroic and brave woman I’ve ever known. I couldn’t even imagine the anxiety I would face if I ever have to undergo this surgery. I give you so much credit for being so fearless and being so hopeful. You’re so young, and I truly believe your future will be filled with happy memories and painless days. Your brain has done this to you but it can also do magical things we haven’t even touched on as humans yet. I believe your strength can help heal you and if anyone can, you can. Love you so much warrior.
Take your life back-gently
You know your body so well-listen to it.
We are all behind you sending love and encouragement-feel it.
1. I wish you to have less pain.
2. You inspire me… daily.
3. Thank you for sharing your experiences.
Hi McKenzie, Ali from Instagram. I found your post a really honest assessment of what it is like. I am three and a half years on and life is difficult but it is a very big but I have contacts that have had this surgery and have not experienced pain for many years. I have other complications as I think you know that make a hopeful outcome unlikely. However, I am waiting to see if I can have it on my other side as I am now bi-lateral a d would do it in a heart beat as it gives hope!!! Sending you massive support and best wishes. So pleased for your progress. Xx
What an inspiring courageous fighter! Keep your spirit up and, one day after another, you will win your life back!
I suffer from TN induced by a surgery (trigeminal nerve cut from its roots), therfore not reversible nor curable… I am very glad, really happy, when I know somebody escaped that hell!
Thank you so much for your kind words ❤️❤️ I’m sending all my love and happy juju to you. I hope in my heart that there will be a cure for all forms of TN one day. Keep up the fight ❤️