Eric Peace - Calgary, AB
My CSF leak journey started in Cape Town, South Africa on a beautiful morning in March 2016. My wife and I were on our honeymoon, spending the day catching waves at a beach in False Bay. A poorly executed dismount from my surfboard led to me landing headfirst in the shallow sandbar, immediately sending a painful shockwave along my spinal column and quickly progressing to intense upright headaches, nausea, blurred vision, hearing deficits, and neck stiffness. After multiple trips to hospitals in Cape Town, a CT scan, and an x-ray, I was told that I had a concussion.
Once back in Canada, I was told in an ER that I had a CSF leak which was confirmed by an MRI and a CT scan. I had substantial extradural CSF collection originating from somewhere in the cervical region of my spine. For the next three months, I underwent 4 failed large volume epidural blood patches (EBP) that were unsuccessful with more MRI’s and CT scans, and one failed digital subtraction myelogram (DSM).
Early on, as many of us leakers do, I turned to the internet to learn more about this condition. I found many research articles written by Dr. Schievink and experts alike, as well as the CSF leak Canada group on Facebook, a small family of leakers who were eager to help each other get better. Encouraged by members of the group, I reached out to Dr. Schievink at Cedars-Sinai hospital in Los Angeles and then I set out to secure out-of-country funding through the Alberta Government. On July 2016, Dr. Schievink and his team performed a DSM to precisely locate my cervical leak and the next day I had a surgery and my leak was sealed. According to Dr. Schievink, due to the traumatic nature of my injury, I had torn a hole (avulsion) in my dura and no amount of blood patches could have ever sealed the leak.
I went back to Calgary to recover but noticed that the upright headaches only marginally improved throughout the next few months. Follow-up MRI’s demonstrated that the surgery worked and the leak was sealed, but my symptoms wouldn’t resolve. I was convinced that I was still leaking, and eventually Dr. Amoozegar in Calgary, helped me secure funding a second time to go back to Los Angeles to visit Dr. Schievink in the fall of 2016. During this visit, Dr. Schievink reaffirmed that I was sealed. If this was the case, then why was I still suffering from upright headaches everyday? I was determined to get a second opinion.
I contacted Dr. Gray Leithe, at Duke in North-Carolina and saw her in February 2017. By the time I saw Dr. Gray, my symptoms had improved some more, but I was still suffering from upright headaches. Dr. Gray performed one final DSM and confirmed that I was sealed, but explained that I was likely experiencing cervicogenic headaches caused by the physical trauma associated with cervical surgery - something that none of my doctors, nor I, even considered at the time. Dr. Gray advised me to seek physical therapy.
After six months of physiotherapy*, massage*, exercise and patience, I regained my strength and mobility, while virtually eliminating my headache and neck pain. I finally returned to work full-time as a Firefighter on October 11, 2017, one and a half years after the accident.
Without a doubt, this was the most difficult experience I have ever overcome. To go from being a very active person to being bed ridden with chronic pain for up to 22 hours per day was extremely difficult to accept. I went through periods of depression where I didn’t want to see friends or family, I pushed my loving and understanding wife away, and I cried myself to sleep more times than I’d like to admit. Some days and weeks it just felt like I would be stuck with this condition forever, and it made me miserable. Thankfully, I was surrounded by supportive and caring people who wouldn’t allow me to sink too deep into a hole.
Today, this entire experience almost feels like a nightmare. I still have the scar on my neck and some painful memories, but I am back to living a very active life without any pain or restrictions. My wife and I went back to South Africa earlier this year to redo our honeymoon, and we even got back on our surfboards at the same beach where the accident happened!
For those of you who are suffering from this terrible condition, don’t give up. Keep researching, reaching out for help, and be very persistent with your doctors. For the vast majority of us, it gets better, and most people get back to living their lives to the fullest.
**Eric’s physiotherapist: Steve Resta - Massage therapist: Sylvie Lappa (both in Bragg Creek, Alberta)