This constant issue over several months led to so many tests (swallow study, 27 laryngoscopy tests, CT scans, etc.) and doctors. All in all, I saw 4 Ear, Nose, Throat doctors, 1 laryntologist, 3 neurologists, 2 speech pathologist/voice therapists, 1 pulmonologist, 1 rheumatologist, and probably more I don't remember. After a failed vocal surgery, my laryontologist told me to adjust to my new life. This was not acceptable to me. I went back to my ENT and he tried one more thing he had just learned about in a conference in Arizona. If this didn't work, he was going to send me to Vanderbilt as it is the premiere voice center in the U.S. and only about six hours away. The medicine he tried, gave me a strong voice again. However, it was something I couldn't be on long term, but there were substitutes that worked most of the time. The side effects of the substitutes were horrendous at first. I really wanted to give up on it, but knew my livelihood and ability to hold a job depended on my voice. That kept me trying to get past the first three months. I made it and all the symptoms disappeared except for insomnia.
Since the medicine worked, but only gave me voice power for short periods of time, I moved from a regular classroom teacher to a position where I only had 6 students at a time and was able to rest my voice every 30 minutes. I also had use of the microphone system in my room to help my voice project better on the really bad days which came without warning. My principal was great about this challenging time for me. She saw me first as a person, then as an employee. This was the first neurological glitch I encountered. Well, actually, that's not true. I lost all the hearing in my right ear, during my senior year in high school, due to a virus that attacked my neurological auditory system. My ENT said maybe I should avoid viruses to which we both laughed heartily. Being a school teacher, viruses were rampant and constant and unavoidable.
A year later, during spring break of 2015, I noticed my neck was twitchy, but only when I looked down and to the corner of my shoulder. Every time I would bend my neck this way, it would start to tremor on its own, uncontrollable to me, like I was saying "no-no, no-no, no-no." It was weird and a bit scary at first. I remember going outside to show Craig who was doing yard work. He said maybe I slept on it wrong. I kept an eye on it. At my next ENT appointment, I mentioned it. You know the look that a doctor and nurse share but don't say?? Well, I saw it. He asked me to see a neurologist soon and set up an appointment for that week. This led to many speculations from scary things like ALS to doable,but life altering things life MS and Myasenthia Gravis. One neurologist referred me to a more specialized neuromuscular neurologist who did a muscle zapping test called an EMG. Literally, they poke you to make your muscles react and then zap you with electrical currents to test your muscle reactions. This occurred from my big toe all the way up to my cheeks and forehead. This was my least favorite test. Then, a couple of brain scans and a neck MRI later, and I had a diagnosis of Cervical Dystonia.
Here's what the Dystonia Medical Research Foundation says it is:
Cervical dystonia, also known as spasmodic torticollis, is a chronic neurological focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and awkward posture of the head and neck. The movements may be sustained ('tonic'), jerky ('clonic'), or a combination. Spasms in the muscles or pinched nerves in the neck can result in considerable pain and discomfort. Unfortunately, there is not yet a cure for cervical dystonia.
Of course, I googled everything I could. This is both comforting and frightening. I didn't tell anyone other than Craig and my brother for awhile due to Google. When you search for cervical dystonia, the most awful pictures come up. That was not me. That was not going to become me, I hoped. I was not ready to face those pictures, get pity looks or worse yet, get the stares in public. You know, the ones we've all been guilty of, the stares of knowing something is wrong with the person, but you keep watching anyways. The other issue is it is so rare, it doesn't have the publicity or the online presence like Multiple Sclerosis or Parkinson's. In fact, most of the reliable, patient friendly sites I've found are outside of the U.S. The online support groups are hard to find or mixed in with other diseases like I mentioned previously.
I began every 3 month visits to the neurologist to check my progression of the disease. Luckily, I have not increased in symptoms very much and am considered to have a very mild case with a slow progression for now.
So, if you see me with my head slanted or shaking in a no-no pattern or even a yes-yes pattern, I am not answering a question, I am having a technical difficulty. Give me a moment...or two. It will pass. PS: Please do not stare. You're welcome to ask if I'm okay though.
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