Summary Of My Medical Condition

My ordeal with having a congenital malformation of the brain started when I was six years old. It continued on through high school until I was a junior in college. And then there was a remission. It will come back in my early adulthood and the symptoms are more pronounced. Since my early adulthood, I have been suffering until now, and it’s just getting worse. From having Chiari Malformation I, nine out of the 12 cranial nerves in my head are damaged. Then having Syringomyelia at C3, I have damage nerves from my neck to my whole body. Prolonged compression of these damaged nerves causes them to stiffen, become numb with no sensation. So if the nerve root is compressed for an extended period, it can cause acute denervation and then paralysis. I can say that by this time I would have been a quadriplegic on a respirator if not for what I had done. I believe that the best thing that I’ve done for my condition is to eschew compression of my brain stem and my cervical spine in order to avoid paralysis. And I have done this for 28 total years now. Now I know for a fact that this is the reason why my abnormal EMG in 2004 became negative later on in 2011. What I had done paid off. Loosing feelings on the left side of my torso in 2011 was the reason for my surgery called ACDF. It was a surgery that would hopefully save me from paralysis. (I saved myself!) That was also the time I had another EMG that turned out negative. It was like a compensation I received from sleeping on my left side for 22 years. (Attach pictures) Two years prior to 2017, I had frequent ER visits because of dyspnea. I knew then it was caused by my phrenic nerve on the left side of my neck that was very stiff and extremely painful. When I had them, I would get anxious, causing my heart rate to spike. My left foot was numb and when I would take a step using it, it raised my heart rate. Next thing, I couldn’t breathe from my left lung. After that happened, I knew I couldn’t continue to sleep on my left side. Although my right side is my “bad side”, I needed to use it to sleep. It only took two years for the right phrenic nerve to become stiff and numb. In 2019, I couldn’t breathe from my right lung. In November 2019, I had to do the unthinkable, to start sleeping on my back. Four months after that, my breasts were flat, like abalones dangling in my chest. My good size full bottom also became flat. It made me sad, but there’s so many other things I have to deal with. Pain in different parts of my body was raised to a higher level. I lost feelings in most of my fingers, most of my torso and chest. I couldn’t fully eliminate my bowels. I carry extra 15 to 20 pounds of bowels that causes my body to swell. I use all kinds of laxatives but never successful. This is another health issue I have yet to tackle. Avoiding full compression of my cervical spine and brainstem has made my life better than it should’ve been. But I couldn’t get away from this insidious disease. Sleeping on my left side has compressed my left brain and left brain stem, indirectly. I still haven’t allowed full compression of it, so nothing acute. But the left controls the right. Therefore, I’ve been fighting hemiplegia because of that. I’m getting good at using my left hand for most things. I don’t know what my future brings. I’m not the traditional kind. Since moving to a small hospital in 2017, I’ve only been seen by a neurosurgeon twice. I can’t afford to see my world renowned, Long Island neurosurgeon anymore. Still waiting to see one since I was referred by my physical medicine doctor. I doubt that they even know what to say. I baffle everyone. I just know that Syringomyelia is trying to attack my right lung at will. The pain on my right upper back that hurts when I breathe is unrelenting. So many days I wake up having difficulty breathing and talking. I am worried about respiratory failure but it may not happen unless there’s acute compression of my cervical spine. To this day, I still refuse to rest my cervical spine on a pillow.