My condition is called Chiari 1 malformation of the brain and syringomyelia of the spinal cord. It is a chronic pain condition that is either caused by birth or by a traumatic accident. The formation of my brain is altered -due to the way my skull formed. Forcing the bottom part of my cerebellum to protrude downwards into my spinal canal. Neurosurgeons hypothesize that this causes a lack of spinal fluid flow or cerebrospinal fluid flow in the spinal cord, causing the syrinx/syringomyelia. That produces insane symptoms, like nerve damage, which is the severe part of it. It causes muscle spasms, nerve pain, and neuralgia which can turn into paralysis.
In the traditional neurosurgical practice for this condition, one performs a decompression surgery, which is a brain and skull surgery. It is incredibly invasive and has a horrific success rate and many complications. But there’s this institute in Spain, that offers a minimally invasive surgery in the lower part of the spine. They have this theory that the final (which is a fibrous sort of tendon-like band in the spinal cord) has a tight pulling tension that strains the spinal cord, which causes the condition to get worse. The surgery aims to stop any further progression. They have had insane results from patients worldwide. Some people walk out of that surgery with all of their symptoms eradicated. Some people, not so much, but no one has had the symptoms worsen after the surgery. It is just a step forward, but it will change my life. This surgery will stop my condition from getting worse, which is incredible. If it gets worse, it could lead to, I would imagine, my right arm getting nerve damage and not being able to work because that’s where my main pain is.
I officially booked my flights, we’ll be in Barcelona in a week. We booked the surgery for the second of March, which is also so crazy. My mum passed away on the eighth of March, seven years. I’m going to be in healing and going to be out of surgery on the date that my mom passed away, it’s a really beautiful thing for me. I feel humbled to have this experience all in one go.
