PIERRE BERGERON - QUÉBEC, QC
In October 2017, two strange incidents happened to me, two days apart. They happened while hitting tee shots on a golf course. Suddenly, an overwhelming sensation of an “electric current” ran down my spine from top to bottom. I realized that I had most likely exceeded my physical limits, an excess of some kind; I will never know for sure what exactly happened.
During the next few days, I continued with my usual activities, including practicing another of my favourite sports, badminton. This time, I could feel my brain moving inside my skull, this resulted in unusual headaches, an overly concerning sensation. I assume that I must have inflicted one or various concussions on myself (undiagnosed) through intracranial shocks. Subsequently, I went to the hospital emergency room four times over a ten-day period. Each time, I was experiencing the same symptoms; violent headaches, vomiting and dizziness. I had to lie on the floor, anywhere; it was the only position that helped me bear those painful episodes.
Within two weeks, I was diagnosed with cerebrospinal fluid leak (CSF Leak) causing spontaneous intracranial hypotension (SIH). The location of the leak or leaks remain unknown to this day. I am grateful that my diagnosis came in quickly. This has probably prevented me from experiencing further health problems. It is invaluable to be informed rapidly about what ailment afflicts us.
Before all this, I was highly active and athletic. I was fit and healthy. I am now reduced to physical inactivity. I “live” horizontally 18 hours a day. This inactive life is quite a paradox for a man like me! From the very beginning, I have been experiencing most of the typical symptoms of a CSF leak. Over time, my body is breaking down, slowly but surely. Three years later, in December 2020, I am basically at the same point: still searching for the CSF leak or leaks' location. It is literally water torture, “drop by drop”, or “leak after leak”! Lying down for so long, gives me increasing back pain. Also, my vision seems to deteriorate hastily (glaucoma and photophobia).
I have probably benefited from all possible exams, repeatedly: magnetic resonance imaging (MRI) of my brain and spine, with and without contrast agent, a radionuclide cisternography, several myelograms and many digital subtraction myelographies (DSM) by angiography, CT scans, etc. I had a total of 7 autologous blood patches (or BP), including 6 lumbar and 1 cervical, in Quebec City, Quebec and in London, Ontario. These BPs were small and large volume (from 20 to 55 cc). My case seems to be exceedingly difficult to diagnose and treat.
Additionally, I have read just about everything I could find on the subject (scientific articles, publications, and websites), I have also attended and viewed most seminars and conferences available to patients. I am also a member of many Facebook groups on the subject, along with other “leakers”. Facebook has never been so valuable and useful to me!
I have shared the fruits of my reading and findings with my doctors. They have made additional efforts and steps to help me. Certainly, this is the burden and the lot of rare diseases patients. Over the past few years, there have been several significant scientific advances. Applied and fundamental research must continue. My heartfelt thanks to the doctors who are dedicated to helping those who are “leaking” and suffering.
Despite the difficulties encountered, I can testify and recognize that my two specialist women doctors are sensitive, dedicated, and professional. They have literally adopted me, and I will forever be grateful to them! Their neurological and radiological skills, their open-mindedness, their ability to listen and their empathetic attitude are essential. I am also grateful to the community, the “leaker family”, and the Spinal CSF Leak of Canada, a charitable organization.
When you suffer from this disease, you go through a whole range of emotions, from euphoria to discouragement and then back to hope. You must be truly determined, and luckily, I do not get easily discouraged. I am a fighter, a leader, and these qualities will help me overcome this disease. I can easily understand the distress experienced by those who are helpless. For the first time in my life, I find myself vulnerable and dependent; I do not like it at all. It is not me; I much prefer helping others!
I am well surrounded by a supportive family. My wife Josée is loving and generous, and she is always there to support me. I am ever so thankful to her because she always compensates for my disabilities, on a daily basis. I thank her from the bottom of my heart. I also thank all my family for their support: my four children and grandchildren whom I love deeply, my brothers and sisters, including my twin brother Paul who helps me a lot. The same goes for my close friends and relatives. I would like to extend a special thanks to my colleague and friend Chiara, my employer (INO, ino.ca), many of my colleagues, and my group insurer Industrial Alliance Financial Group (ia.ca).
The support of family and friends is essential to keep hope alive. I am convinced it’s possible for me to heal, but it’s difficult to say when.
I need help, the help of the best specialists in Quebec, Canada, the United States or elsewhere, in close collaboration with my specialist doctors.
I want to get better and I want to return to life, an active, healthy, and normal life.
In my opinion, existing knowledge and protocols in Quebec and Canada are insufficient or inadequate for rare or difficult cases. Every day, I communicate with “leakers” who are suffering too much and who have done so for too long.
Here are a few suggestions for Canadian health system managers:
Create centres of excellence by region in Canada, as they do in the United States, with a network of external experts, to advise and coach local doctors, especially for rare or difficult cases.
Support and fund organizations such as The Spinal CSF Leak of Canada.
I AM READY TO BE REBORN ... PLEASE HELP ME ... PLEASE HELP US!!!
