The first pain I can remember vividly is after playing on the playground in kindergarten, and feeling a terrible throbbing pain in my back just below my shoulder that would take my breath away and hunch me over with pain. As I got older I noticed the more physical activities and exercise, I would have pain to the point that my breath would be taken away. At the time, people just said I was slow or lazy, and I personally believed I just had bad lung capacity.
The first loss of sensation I felt was in my left heel my freshman year, which resulted in several weeks of tests to determine I had Degenerative Disc Disease in my lumbar spine, and was just given a prescription of Codeine and sent to physical therapy. I saw every physical therapist at the facility, and only had more pain and stiffness in my legs. I then quit seeing the therapists and saw a very holistic chiropractor who had re leaved of the pain, but did not take away the small area without feeling. For the next 3 year I dealt with the pain, occasionally taking advil for the pain from playing 10 or more shows in 3 bands every month for about three years.
The next noticeable event was at a show I performed at in October of 2010, where I was walking and tripped and suddenly couldn't feel my left leg. I went to work the next day, where I walked around a theme park for 8 hours with my left leg dragging terribly. When pain started returning back even worse then before, I called and made an urgent appointment the next day, and by the end of the day I had seen a spine specialist and received an emergency MRI. Two days later the spine specialist called me saying "You have Syringomyelia, but don't worry we can manage it". I could not even pronounce the name, and he had to explain it several times, and all I understood was that it is extremely rare, and the only ways to treat it are surgery or steroids.
For the next month I immediately stopped attending school, and spent almost every day at appointments seeing Neurologists and Neurosurgeons. Literally overnight I went from worrying about school and work, to talking to Neurosurgeons about having a surgery that would involve removing several bones and placing a plastic tube called a shunt directly into my spinal cord to try to drain the syrinx in my spinal cord. The issue was the surgery was extremely high risk, and there was only one surgeon available that was willing to perform the surgery, but there was only a 50% chance of me being able to walk again. Before I agrred to having the operation, I saw every form of healer I could think of, including Cranial Secrial one time, but was scared by the surgeons that I only had 3 two 6 months before I would lose everything from my chest down.
December 6, 2010 was the date of my surgery. It was surreal to have to fill out a will for a surgery that I could very easily never walk again, or possibly worse. Before I went into the operating room, I did not think about what was about to happen, and just focused on calming things to try to avoid the inevitable. When I woke up, all I remember seeing is a very small nurse nursing yelling at me to breath, and gasping for air and feeling the worst feeling I have ever experienced in my back and left shoulder.The next 4 minutes I received 6 shots of morphene to no luck. It was not until I was given dilauded did the pain even start to dim. The next 5 days are a big blur, but I do remember I had to lay completely flat for the first 4 and a half, and could only lay there looking at the ceiling, unable to move anything but my right arm a little bit.
On the 5th day, I was sent to rehab in Vallejo, where I spent the next 2 and a half weeks re learning to walk. I was told by the end of my stay that I had made the biggest recovery that they had ever seen. I still did not totally grasp the severity of what was happening to me. Once I returned home(December 23rd) I was just very happy to be home with my family for Christmas. I went through having what was described to me as "the most invasive and damaging operation that a body can go through" walking with nothing but a cane, and feeling like a superhuman.
Everything went forward until approximately May, where yet again out of nowhere I lost feeling in my right leg. At that point tasks as simple as getting from my bed to the bathroom became a huge issue. If i tried to put any weight on either leg, they would tremble and collapse immediately. I went to the Emergency room, and was admitted after having more MRIs, CT Scans and dozens other tests. No doctors were giving me answers, and I knew there were things I was not being told. And it turns out that doctors were telling my family they were sure I had Multiple Scelorisis or some other rare terminal condition. I spent the next 6 days laying in a hospital bed, but not in a Neuroscience center or rehab, but a general hospital with all sorts of patients. I was given every test that could be given, including a spinal tap, and other painful and annoying tests. At the end of all of this I was told by a Neurologist that I only have Syringomyelia, and that since the condition is so incredibly rare that they cannot predict what it can do in any way other than prescribed me the strongest narcotic medications available to try to make me be as comfortable as possible and sent me home with a wheelchair. Mid June was the last time I had received any treatment from modern medicine, being told straight up that there is nothing more they can do.
