Pain, pressure, pulling, and panic—this has been my life since January 23rd of 2010. I had just turned in my last application to grad schools, and a few days later I woke up to ringing in my ears. Surely it would go away. After a few days I began to panic, and so began my seemingly endless journey of pain and suffering.
About two weeks after I woke up with ringing ears, I was unable to chew or eat normal meals without being in severe pain. Over the course of about 6 months I got no relief. I spent my summer curled in a ball of loud pain and pulling in my temples, sinus regions, jaw, neck, and head.
What was wrong with me? Would this ever end? My quality of life was shot.
Finally, after countess doctors who said, “Well we can try [this],” we made it to a neurologist, who diagnosed me with “oromandibular dystonia” (jaw closing sort) where the only treatment is botulism toxin injections. My mother cried in relief. Finally someone had an answer. Finally someone knew what to do—and it made sense! My grandmother also suffers from two types of dystonia that are remedied my BotoxTM injections every 2 months. He also put me on a muscle relaxant. For two weeks, I was relaxed and the BotoxTM started to kick in and everything was improving along with taking physical therapy, which had already been started a few months.
I now had some quality of life and the fleeting thought of attending my first choice graduate school where I found out I had been accepted became a possibility once again.
I might get my life back.
Soon, however, things plateaued—I could not get back to normal, my old self. I couldn’t chew. I was loosing weight rapidly. I was still a 7 or 8 on the pain scale instead of 10+. Pressing the soap pump dispenser to wash my hands put me excruciating pain. This is not normal for a 23 year-old young woman.
Later a TMJ specialist proposed open-jaw surgery as the only solution, but in a last attempt to stay in school and fix this problem non-invasively, I found an oral surgeon who could inject BotoxTM into my lateral pterygoids, deep muscles in the TMJ region, only accessed through the mouth. It is a rare procedure and he had only done it once before, but it cured the man. Because of my familiarity with BotoxTM,I did not hesitate. I was put under a bit of IV sedation and had the procedure.
About 4 days later, I started having trouble talking. I brushed it off, but then I drank some water, and it came out my nose. Something was very, very wrong. My soft palette was temporarily paralyzed. I couldn’t talk or eat. I couldn’t make a phone call. What was left of my attempt to complete my first semester of grad school was annihilated.
However, I was OUT OF PAIN. But this could not be a solution, with these life-altering side effects. I dropped to a dangerous weight, 93 pounds, but it did wear off, but I was back to pain, pain, and more pain.
I am still in the same situation as I write this, about an 8 out of 10, but hopefully the end will come, in 10 days—when I have bilateral open jaw surgery. I have tried every reversible treatment possible, and now it is time to get better—get back to myself.
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