Old-Time Dystonia

Several weeks ago during one of my very rare attempts to go shopping, I came across a DVD collection of old Red Skelton shows. For the ladies, we sometimes refer to this as retail therapy! When I was growing up this was my favorite show on TV. I remember watching these shows on a small 8" black and white television. It seems like more than a hundred years ago. This trip back to those nostalgic memories helped me remember other things that I was pulling out from those dusty cobwebs that were once my life. For example, I can honestly tell you that I believe that Jack Benny had torticollis, long before I knew what it was. Back then "S" "T" were just two letters next to each other in the alphabet. Now that I think about it, are we sure that even Ed Sullivan didn't have a little touch of the disease?

Speaking of Ed Sullivan, one of the more fascinating parts of that variety show was the guy who would spin the plates. I was allowed to watch only part of the show before I had to go to bed (Ed was usually on Sunday nights and I usually had grade school the next day!) No one ever remembers this guy's name. There is an unfounded rumor that this guy'' name was Thiel. It doesn't really matter, but for the sake of argument let's call this guy Howard. I would watch this guy, Howard, who would take a bunch of long straight wooden sticks and start spinning these plates on top of these sticks. He would go from one to the other making sure that all the plates were spinning and not too wobbly. The idea was to see just how many plates he could keep going without the plates falling and come crashing to the ground. When the plates would lose some of their momentum they would usually start to tilt at a dangerous angle before crashing down to shatter into porcelain chips on the ground.

The coordinated movements to keep moving from plate to plate and to keep all those plates spinning at the same time is no different than some of the complex movements that your brain employs to maintain posture of the neck. It is this juggling act that "normal" people ignore in their every day activities, that becomes the impossible task for those with torticollis. It may be said that dystonia is a disease of inappropriate coordination. We're not talking about walking and chewing gum at the same time. This degree of coordinated muscle movements is usually an unconscious learned activity. Most of our first years of life, where we learned to hold up our heads, this process of adjusting tension in various muscles occurred long before we could even speak our first words. This is due to our learning a pattern or set of responses to those first few moments when we were propped up. If I don't hold that muscle just right my head flops back there à . We learned that if I hold that one muscle, just right here, and that other one just a little more there, then I can keep my head up without support. Well figuring out which muscles could keep our necks straight was like that poor guy Howard who was spinning the plates. Do a little bit of spinning here, move over and that one there needs a lot more effort, but don't forget that one over there. Since back then this was usually live TV, an occasional plate would fall and break the rhythm à then you get torticollis.

Now let's keep using the plates for a moment, you could spin the plates in one direction or you can spin the plates in the opposite direction. They can go in a clockwise direction and a counter-clockwise direction. There are a group of muscles that participate in the normal movements of the neck, and there are muscles that can participate with the torticollis. Muscle pain is a clue that a muscle is overworked. Pain from other causes such as arthritis, bone pain or nerve pain must be excluded. The muscles that hurt do not care if they participate in the torticollis or not; if they are overworked, they will cry out in an achy, cramping kind of pain. This pain is important! However, what has to occur between you and your treating physician is to attempt to understand if the muscle pain comes from a muscle that is participating with the torticollis or if it is one of a group of muscles that fights the torticollis.

How can you help to do this? Start a journal. Write down some of your experiences. Does the pain come from hours of sitting or standing? Can you control the pain to any extent with certain maneuvers? Does lying down help relieve any pain or does it make it worse? Recently, I had a patient with a mild degree of rotary torticollis tell me that, in the routine functions of his work, he would have to hang upside down to work on some equipment. When he would hang upside down his torticollis would disappear! Please note that we do not recommend this as a form of therapy! However, this kind of information about your particular circumstances is invaluable to attempts to treat you, especially if you receive chemodenervation therapy - Botox Ò , MYOBLOC Ô or phenol.

Dystonia has long been studied with electrophysiologic means. EMG or electromyography is an easily adaptable way to interpret a pattern of muscles that may be involved in dystonia. By using EMG as a tool, we can determine which muscles are most active in participating with the dystonia and which muscles may be fighting with the torticollis. On relatively frequent occasions we can identify the fact that both muscles may be actively attempting to contract or pull at the same time. This is called "co-contraction". When we see co-contraction, it is a tug-of-war between these two groups of muscles, with the muscles participating in the dystonia usually the winners. Because of co-contraction, the more painful muscle may be the one participating in the dystonia, or the more painful muscle may be fighting the torticollis. Injecting a muscle to weaken it simply on the basis of pain, could do more harm than good, if that more painful muscle is one of the muscles fighting the torticollis.

It is also so important to search for other muscles that may not be traditionally thought of participating in a torticollis. Here again, EMG is a helpful tool. When a situation arises, when there is not a great deal of muscle activity in the neck to account for the degree of twisting, pulling, or other positioning of the neck, it is important to go searching for the cause. We have found the muscle of the lower shoulder to be involved, the middle back or even the pectorals muscles of the chest to playing a roll in the torticollis.

Getting back to Howard and his plates, you also would remember, sometimes he would have to keep going back to the same plate over and over again, but other plates would go for quite a long period of time. This same pattern also occurs with torticollis. Some muscles require frequent treatment over and over again. At various times of the day they may be pulling more, regardless of the level of activity that they may be going through.

Hopefully this little trip down my memory lane with help explain some things that were not so clear before. But are you sure, very sure.that Jack Benny didn't have torticollis?

Long live Freddy the Freeloader and Clem Kadiddlehopper!