Anmarie Bailey (GP)
Fifteen weeks ago, I underwent brain surgery. Not because I had a brain tumour, or a stroke or even hydrocephalus, but in an effort to “cure” a painful, life-altering condition I’d been living with for approximately five years – trigeminal neuralgia (TN).
The decision to have multi vascular decompression (MVD) was not an easy one, but rather an attempt to stop the debilitating pain that often brought me to my knees – literally.
I first knew something was dreadfully wrong the morning of June 28, 2015, around 1 a.m. when I was jolted out of my sleep by what felt like fire shooting across the left side of my face. With no idea what happened, I was too terrified to go back to sleep.
Prior to that, there were missed warnings for approximately two and a half years. Knowing what I know now, my story does not appear to be uncommon. I’ve been in touch with some who have suffered for 15 even 20 years before a correct diagnosis. Many were caught in a vicious cycle of dentists, doctors and the ER.
Going back to the beginning in Barbados, I recall experiencing what felt like very minor zaps or rubber band-like stings in my lower jaw. Thinking nothing of them, I carried on as usual until the end of 2013 when excruciating pain landed me in my dentist’s chair with what presented as a toothache.
An aborted root canal, as well as a tooth extraction followed, but then the pain skyrocketed. At that time the pain was attributed to dry socket.
Meanwhile, I was set to return to Canada the beginning of 2014 after living in Barbados for five years. When this all erupted, the dentist would not clear me for travel.
Once back in Canada and over the following year and a half, the pain would increase.
Speaking, eating, brushing my teeth, sneezing, coughing, nasal congestion, cold air, a breeze, anything that required me to open my mouth, could spark an excruciating attack. Pain medication, antibiotics, trips to the dentist and emergency rooms did not provide relief.
As time went on, things continued to decline until one day after what seemed like the millionth trip to the ER, I demanded my dentist refer me to a dental specialist.
It was while waiting for my appointment with a specialist that the fire-like pain episode occurred followed by the characteristic electrical shock-like attacks that increased in severity and frequency. These attacks would cause me to jerk, grab my face and at times fall to my knees, or to bend over in pain.
After one night of constant shocks where I was unable to sleep, I was at my wits’ end. Reaching out to friends in Edmonton who worked in the medical field, I hoped they could get me to see someone right away.
With no family within five hours, I mustered all my strength, and decided to drive the two hours to the specialist by myself, and with no appointment.
Knowing that I would be driving on no sleep, my pastor dad assured me he would be praying for me all the way.
That started a series of what I call miracles. Arriving on a Friday, a friend got me to a specialist right away who referred me to another specialist. Since it was Friday, I had to wait until Monday, but over the weekend, I ended up in the ER once again. This time I was placed on a morphine drip. On Monday I was finally diagnosed at an oral facial pain clinic.
Unaware of TN, but relieved that I finally had a diagnosis and was prescribed medication, I thought all would be well, but TN is a very unpredictable condition and I had no clue what was ahead.
The medication was incredibly difficult to tolerate, and it took time for things to settle down. But my initial relief turned into confusion. I still could not eat; was still drinking through a straw and still had pain and facial spasms. Thankfully my family doctor understood TN and supported me through the ups and downs of my first eight months after diagnosis.
Sadly, a year of relative “success” with medication came to a screeching halt when one day with no warning, the pain returned with a vengeance.
The road to getting it under control the second time was extremely bumpy. Several medications were tried. One I had a life-threatening allergic reaction to; some were ineffective and some were hard to tolerate.
After trial and error, a combination of medications gave me relative “success”, but I was prescribed extremely high doses and over time I started to experience serious side effects prompting my neurologist to recommend me for the MVD.
A neurosurgeon explained that he saw a compression of the trigeminal nerve and determined that was the most likely cause of the pain. Since multiple sclerosis and a tumour were ruled out as causes, he suggested that I was a good candidate for MVD.
After receiving a surgery date, it hit me “I’m having brain surgery”. Despite the serious nature of the surgery, I was never nervous but was more curious. Afterwards would I be able to talk, to walk, would I have to relearn basic things?
My family was encouraging and hopeful. My mum came to stay with us to help care for me; my dad gave me constant words of encouragement; my husband who had joined me by then, was cool as a cucumber and a tower of strength and my sisters were hopeful.
Fast forward to today.
It has been 15 weeks since surgery. The jury is still out on if it was successful. Possible outcomes are: failed MVD, partial success, total success.
I still battle fatigue, headaches, a lack of tolerance for overstimulation, among other effects. I still have numbness on the TN side of my head, but we hope feeling will return – if it doesn’t, that is a small price to pay.
I am on a gradual return to work as full recovery can take up to 18 months.
TN cost me a lot: I switched jobs twice, missed my sister’s graduation from her doctorate programme, I had to see my family watch me in horror as I went through my episodes. I became anxious anticipating the next pain attack. I lost weight when I could not eat, and gained weight due to the medication. My once active lifestyle became sedentary.
When people hear brain surgery they think it’s a drastic choice to cure pain; but for those of us whose lives have been impacted, it doesn’t seem drastic at all.
My hope in sharing my story is that it may be a launching pad for conversations about TN. Maybe, someone may start a dialogue with their healthcare provider. There’s also an online support group: Trigeminal Neuralgia Support Barbados.
Alternatively you can email at email@example.com.
Anmarie Bailey was born in Barbados and moved to Canada as a teenager with her family. Wanting to reconnect with her place of birth, she returned to Barbados where she followed her passion working as a journalist and communications practitioner. One of her bucket list items is to produce a documentary featuring female immigrants in Western Canada; a project she is working on. In her downtime she enjoys travelling, hiking, running and almost anything on the adventurous side. She is married with a stepson and currently resides in Edmonton, Alberta.