Botox Stopped My Tremors

I have a neurological disease called Isaac's Syndrome which is a rare neuromuscular disorder and causes the continuous firing or twitching of muscles. This twitching tends to travel around my body. However, it has been most dominant in my right shoulder for more than twenty years.

The twitching and tremors in my right shoulder had become so severe and had lasted for so long that they actually damaged the tendons and shoulder socket. I was in need of an operation to correct the damage but this could not be done until the shaking was stopped.

Up until this point I had tried several anti convulsive drugs with little or no success. I did get some relief with Topomax and nitroglycerin to help stop the actual cramping of the muscles. The pain, however was becoming unbearable and the shaking in the shoulder was getting worse.

To add to the problem of the continuously shaking shoulder were two muscles in my throat which would cramp each time I ate a meal. I underwent a series of swallowing tests and a scope of the throat which produced no answers other than the muscles would cramp when I ate. The only relief I was getting was from nitroglycerin tablets that people use for heart attacks. I would put several under my tongue when the throat cramped and hoped the muscles would release. For those times which they did not release I had a nitroglycerin cream which I would apply directly to the throat. None of these made my meal times particularly bearable or happy.

My internist suggested I see the doctors at the Medical College of Wisconsin here in Milwaukee, Wisconsin, which I did. I saw a neurologist there and he suggested the use of Botox to stop the shaking. He also agreed to call my Orthopedic Doctor and co-ordinate the Botox with the surgery as well as informing him of the Botox procedure.

I was not convinced that this would work but was also in so much pain that I was willing to try anything. The Botox procedure was scheduled for the day before the surgery and I went with high hopes and low expectations.

I will not try and give a medical or scientific explanation of the Botox procedure. This is my observation and understanding as a patient.

The doctor used two needles, both of them very thin and they caused very little discomfort. The first needle was attached to a machine which allowed him to monitor the muscle activity or as he said "how the muscle was firing." The second needle injected the Botox.

He made several injections of Botox, in different locations in the front and back of my shoulder. I was sitting up for these injections and as I said above they were not uncomfortable. The noise from the machine caused me more anxiety than the thought of the needles.

After he completed the Botox injections in my shoulder I laid back on the table and he used the needle to find the muscles in my throat which were cramping. This was a little bit uncomfortable but easily tolerated. When the machine began to make its loud noise he injected the Botox into the muscles.

I had no immediate affects from the Botox. I was able to drive home and could no feel pain around the areas he had injected. That night my shoulder still shook but slower than usual. The shoulder felt like a motor which wanted to start but was having difficulty running. The next morning, the morning of my surgery, I woke up and I felt something was wrong.

What was wrong was that for the first morning in twenty years I woke up without shaking. My shoulder still felt like it wanted to shake but it just could not. There is no way to describe how good I felt. I was so happy. Since I was having surgery I was unable to eat so I did not know at that time if the throat injections had worked or not.

The shoulder behaved all through surgery, not a shake or tremor to bother the surgeon who did a masterful job in repairing the years of damage. I have now gone three weeks with no shaking. That first Sunday in church my wife passed me a note saying the pew was not vibrating. When I was able to return to sleeping in our bed with her she laughed and said I forgot to put in the quarter to make the bed vibrate.

The Botox injections were not only a success with my shoulder but they were also successful in stopping my throat from cramping at each meal. I have been able to eat normally since the Botox procedure. The muscles again feel like they want to start cramping but just cannot keep it up.

The Botox will wear off and we do not know when. We also do not know how badly I will shake after it does wear off. What I do know is that for me this has been a miracle and I am enjoying each day I have right now. My days are easier and even healing from the surgery I have less pain than before. I am very grateful for the doctors at the Medical College, my Orthopedic doctor and their willingness to work together for a solution to my problem.

The neurologist has told me I can repeat the Botox injections and he may even want to try some other areas which have been twitching for years. The disease, Isaac's Syndrome, is chronic but these reliefs from symptoms are life changing for me.