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Hi, my name is Jaime, and I’m a mom of two wonderful children.
In 2016, my life changed suddenly when I was diagnosed with Chiari Malformation. This is when the lower portion of your brain, the cerebellum, extends down into your spinal canal, putting pressure on your brain stem and spinal cord. Chiari comes with many debilitating symptoms, and complications. The scariest being sudden death due to compression of the brainstem, which controls essential functions like breathing, heart rate, consciousness, and sleep.
Over the years, my symptoms have steadily worsened. I live with severe headaches & migraines, head pressure, neck, shoulder & back pain, nerve pain and numbness. I have difficulty with balance, memory, and speech. Extreme fatigue, difficulty swallowing, broken sleep every 30-60 minutes due to pain, and the inability to sit, stand, lie down or walk for long. I am very close to needing mobility aids. The worst symptom is the pressure at the base of my skull. It is there every second of every day, and has been since 2016. Small things such as laughing, coughing, or sneezing can trigger unbearable flare ups of the pain and pressure inside my head, especially at the base of my skull. This pain will last for days and no pain medication helps. Many days, I am unable to leave my home. This continues to take a toll on me physically and mentally.
In 2019, our family faced the unimaginable loss of our beautiful 8 year old daughter. Navigating life without her has been the hardest thing I will do. Through equine-assisted therapy to help me with my grief journey, I met an incredible woman whose horses have helped me survive my darkest moments.
To honour my daughter, I’ve found purpose in helping animals by fundraising for local rescues, donating to our shelter in her name, and I’ve joined a search & rescue team dedicated to finding lost & abandoned pets.
But as my condition worsens, these meaningful parts of my life are becoming harder to do. The thought that I will continue to decline is truly terrifying.
I was told by a neurosurgeon that I need surgery. However, the standard surgery that is offered here is highly invasive and carries significant risks. This surgery involves permanently removing a portion of the skull and opening the protective layer around the brain. You have to trust that the surgeon doesn’t remove too much of the skull. This surgery is not a cure, it is only meant to slow down the progression. Many patients experience no relief, worsening symptoms and the need for multiple brain surgeries.
After extensive research and speaking with others who have Chiari Malformation, I found the Chiari & Syringomyelia & Scoliosis Institute of Barcelona, which offers a minimally invasive procedure called the Filum System. This procedure involves the sectioning of the external filum ligament at the base of the spine that, when cut it releases the tight tension and traction that pulls on the spinal cord and brain. By doing so, the progression is stopped. Many patients have reported immediate relief from their debilitating symptoms after waking from the procedure.
I sent my images to the team in Barcelona, and after reviewing everything, they informed me that I am a candidate for the procedure. I broke down in tears. After so many years of pain, the possibility of relief feels like a miracle.
Because this surgery is outside of Canada, it is not covered by the government or insurance. The surgery cost is 19,800€ ($31,694 CAD), and the required post-surgery medication is estimated at 600€ ($957 CAD). I will also be required to pay for any unforeseen medical costs, and travel, accommodations, and food costs for myself and a caregiver for approximately 2 weeks.
Without this surgery, my quality of life will continue to decline, and cause permanent damage. If you are able to help me get closer to this surgery, whether through donating or sharing my story, I would be deeply grateful.
Thank you for taking the time to read my story, and thank you from the bottom of my heart for your support. ❤️
For more info on Chiari and the benefits of this surgery in Barcelona, please click on the links below.
