Jennifer Gibson - Toronto, ON
To go from being a very active athlete and martial arts instructor to a wheelchair in a single day was shocking. My life changed in an instant. I went swimming one morning and noticed that I was struggling to use my feet, when I got out of the pool, I was stunned to discover that I couldn’t walk at all, I had severe foot drop and was suffering from an excruciating headache as well as vomiting. I also had strange symptoms such as a grabbing sensation at the back of my head and felt like I was falling, as well as pain between my shoulder blades.
Paramedics took me to a local hospital where they admitted me for almost two weeks, they did one MRI, and I saw several doctors who all claimed they couldn’t find a leak or any explanation as to why this was happening, then they promptly discharged me without any further medical assistance, they essentially abandoned me.
I knew something was wrong and I was determined to get answers, I went to a different hospital in another city where I was admitted right away. They immediately did a series of MRIs, extensive tests and blood work to rule out many other potential health issues such as Parkinson’s, cancer, MS, etc...I was in that hospital for five months and saw an endless stream of doctors, week after week, trying to convince them that it was a CSF Leak which essentially fell on deaf ears. A neurologist at that hospital did an assessment and immediately recognized that I had a leak and told my spinal surgeon but he refused to believe that there was anything wrong with my spine.
I had a team of doctors working vigilantly to get answers but no one would accept that I had a leak. Then one day, I was told they didn’t have anymore doctors or enough resources to help me and they discharged me. They sent me home in an ambulance, I cried the entire trip. I was absolutely devastated, I couldn’t believe that they gave up on me, especially my spinal surgeon who fixed my broken back with a lumbar spinal fusion a year before.
I lost so much time going from doctor to doctor, hospital after hospital, begging them to help me. None of the doctors knew what to do since they didn’t understand how to diagnose a CSF leak nor treat it. I lost nearly two years of my life and income, I felt abandoned by the healthcare system, and forgotten by the society. I couldn’t leave my apartment at all, I was in a wheelchair since I couldn’t walk, and in constant agonizing pain. By this point, I had been in four hospitals, saw countless doctors, begging them to listen to me and instead they would yell at me for their “wasting their time and resources”. I even requested MAID. I felt incredibly defeated, hopeless, and unable to function at all.
I even considered going to see Dr. Schievink in Los Angeles at Cedars Sinai who had agreed to see me but I was unable to find a doctor who was willing to fill out the Out Of Country form and since I was on disability, I could not afford to go to the US and I was far too sick to physically manage the trip by myself, especially in a wheelchair.
I then referred myself to a surgeon at St. Michael’s hospital in Toronto where they saw me quickly and did a series of MRIs, they suspected that I had a leak. Unfortunately they didn’t find it, yet I was getting progressively worse and going downhill quickly. He referred me to Dr. Kapadia at Sunnybrook Hospital.
I was on a on a stretcher when I saw Dr. Kapadia, it took two nurses to help me stand upright, he immediately recognized my symptoms and suspected that I had a slow leak. He promptly ordered a myelogram, the next day after he did the imaging, he called my father with the good news (I’m deaf), he found a CSF venous fistula at L1! I was elated and immensely relieved. He did an embolization the next month to seal it and I felt a difference right away. The OR team and the Post-Op team were simply amazing, they were all dedicated to helping CSF leak patients, and a truly wonderful staff. I received the best care in my life at Sunnybrook hospital. Dr. Kapadia is the most humble and compassionate doctor I have ever met, his dedication to helping patients like me is phenomenal. He will do everything he can to find the leak and extraordinarily gifted at finding even the most difficult or subtle leaks.
A month after the embolization, I was able to walk again! When I saw Dr. Kapadia for a follow up four months later, he was stunned to see me walk down the hall to give him a big hug! He was thrilled to see that he made such a remarkable difference. We also did a CTV news segment on that same day to help raise awareness about CSF Leaks and the immense difficulty in getting it diagnosed in Canada. He was more than happy to do this so he could help many more patients who were suffering from the same fate as me.
My CSF leak journey started on September 2022 and was finally sealed on January 2024, that is far too long for a patient to be diagnosed and treated in Ontario, Canada. It caused unnecessary suffering and took an immense toll on me physically, mentally and emotionally. It has taken me more than 17 months to get the diagnosis and treatment that I needed here in Canada which is shocking.
I am extremely thankful for Dr. Kapadia’s tremendous talent and skill, and the extraordinary CSF Leak team at Sunnybrook Hospital for believing in me and giving me my life back.