Patient stories
Patricia Mayer | Sudbury - ON
My name is Patricia Mayer. I’m 61 years old and I was diagnosed with Intracranial Hypotension on October 11, 2022.
As an independent hair stylist for the past 8 years, I also pursued additional courses in interior decorating and security, achieving high grades. Balancing demanding roles as a wife, mother of 3, and grandmother of 4, I always enjoyed life where I embraced an active lifestyle participating in diverse activities such as summer sports and regular exercise. I am a loving daughter who cared for her aging mother until June 2023, when her care needs exceeded what I could manage, leading to her transition to a care facility. Amidst all of this, I was grappling with an array of new symptoms and coming to terms with my initial diagnosis.
I can’t exactly pinpoint when this disease started. Initially, my symptoms manifested as dizziness which was nonspecific and easily dismissed as vertigo. Many years passed where I had episodes lasting a week to two weeks at a time. In October 2022, an ear, nose, and throat (ENT) doctor ruled out vertigo after an MRI. From there life changed! More symptoms started showing including pain up my neck and down my arms, headaches in the lower neck and shoulders, off balance, dizziness, and numbness in hands.
In July 2023, it was recommended I see a neuroradiologist at Toronto Western Hospital (TWH) for a Decubitus CT Myelogram on both sides of the body. First, the right side was completed with no leak found. Couple months later, the left side was completed with no leak found. Still no answers. Following this procedure the condition hanger effect started with the headaches in back of head into neck and across shoulders lasting up to 4 months.
I do keep in touch with my doctor at TWH. He has been my life saver offering me compassion and a clear line of communication even when the leak wasn’t found. As of Feb 2024, I have improved with reduced dizziness and headaches almost disappeared. Unfortunately, new symptoms have appeared which do not seem related to the CSF leak including dull pain or pressure in my head upon changing position from lying to standing, accompanied by fragmented sound perception, and at times, pain in my mid-back or chest. The neuroradiologist at TWH has asked my physician to send me for another MRI to see if the CSF leak is still present. He has also offered to refer me to the USA to receive a different scan not available in Canada. Through this all, it has become evident that our healthcare system appears to be deteriorating and difficult to navigate. A variety of compounded issues have led me to endure extensive waits in emergency rooms (ER) and waiting months to see specialists. In addition, this disease is not well studied and requires specialized care that's not readily accessible due to long waiting lists. This delay in treatment is immensely frustrating, depriving us all of precious time and a return to a normal life. Today, I still don’t have all of the answers I’m looking for!
I’m learning as I go. I have had to learn self-advocacy, be persistent, and gain some understanding of how the healthcare system works. I’m doing research on my own, which includes reading others’ experiences and finding what works for me. Through this process, I've come to realize the vast diversity among us. I have learned to eat better and keep my fluids, salt, and electrolytes up. I now get up from a lying position slowly by first sitting and then standing. I continue to exercise every day even if only for a walk. I am more tuned into my body and when I’m not feeling well, I have learned to relax and let myself heal. I still have good days and bad. I can no longer work because hairstyling or computer work, which involve bending over, exacerbates my symptoms centered around the neck and lower skull. I focus on keeping a positive attitude. When I’m feeling well, I do what I can and enjoy things I like.
When I’m not well, I take it easy and read or meditate to keep relaxed. This hasn’t been easy for a person who has difficulty with a slower pace of life. Life looks much different today than a few years ago.
When you don’t have a debilitating condition, I think it is hard to fully understand what a person is going through on a regular basis. I’ve been lucky to have a husband who is understanding and helps when he can, but due to his weekday work schedule out of town and daytime sleep schedule, I must prioritize self-care. It can be scary somedays as I don’t know how my day will go and if symptoms will pop up. Mornings seem better for me as often the afternoon starts with feelings of being tired, sore and dealing with the postural movement
from sitting to standing with sound breakup. I find it difficult to make long term plans as I can’t control the symptoms and can’t predict when they will occur and how bad they will be. Every day you don’t function normally is a day lost of you living life. I think some days I’m still in denial of my condition. As humans, we are trying to fill the unknown by thinking there must be another answer. That there must be a change, perhaps to what we do or eat, and if we start making changes, this disease will just go away. But there isn’t an easy answer as specialists don’t understand the disease itself.
I don’t know what’s next. I’m still learning and hoping for a cure or more information on this rare condition that affects different age groups.
I’m not giving up, more information is being found everyday. I’m reminded through this process that patience and empathy are essential to recognize the collective strain on both individuals with this disease and providers as well as the immense value of community and individual experience. This is why I have offered to help Spinal CSF Leak Canada to raise awareness by telling my story. I truly hope one day there’s a cure. So keep fighting and learning, we got this!