Hello, everyone. I'm Dr. Gwynn, a neurologist in Atlanta. I've been here 7 years and have enjoyed the good fortune of caring for many people with torticollis and other dystonias since my residency at the University of Virginia. Although I would like to believe I've played a small role in helping my patients through their difficult years of chronic pain and twisting and pulling movements, in fact I think I have learned more from them than they have from me. Over time I have been asked many questions about topics that no one really taught me in medical school, and at first these were difficult to answer because, as hard as I might search for one in a textbook or seek out an article in journals, there would be no satisfactory explanation. Luckily, there is an old adage in medicine that the doctor learns best from his patients and such has truly been the case for ST and me. Trying to keep my mind open to my patients' own observations and inferences, I hope that I have gained a small kernel of wisdom from them that perhaps I can share with others. From among these years of treatment I have today tried to address some of the common concerns some of you may be living with.

One of the more common complaints I hear patients with ST tell me is, "Even though only my neck is twisted, I have pain or tingling in my arm or back or across my shoulders." Why, they ask, does this happen? This is an example of one of those mysteries they don't teach you in medical school, and there is really no authoritative source for an explanation. But a common sense consideration of the human anatomy probably yields the answer, an explanation reinforced by the improvement patients get with therapy.

First, a little review of the spine and its contents may be in order. Referring to the figure below you will see that the neck is really like a tower of 7 building blocks (the vertebrae) stacked one atop the other resting in little sockets and held in place by ligaments, muscles, and tendons and surrounded by all the other structures of the neck such as arteries, veins, and tubes such as the esophagus and trachea. Through the center of each vertebra is a round hole so that when they are stacked on top of each other each hole is directly above or below the hole in the neighboring vertebra. In this way a column or cylinder is created through which the spinal cord lives and is protected. Finally, at each level emerge a pair of so-called "nerve roots" in which are contained every one of the thousands of individual nerve fibers that are the only conduits of sensation and motor commands to and from the shoulders, arms and hands.

In a fascinating study of the order of nature, it turns out that each nerve root contains nerves that go to specific and identifiable areas of the extremities. For example, nerves going through the fourth nerve root (C4) give sensation only to the shoulder nerves going through the sixth nerve root (C6) give sensation primarily to the thumb and index fingers, and nerves going through the eighth nerve root (C8) give sensation to the ring and little fingers.

So what does all this have to do with pain and ST? Plenty. If the neck is turned too much these nerve roots can become compressed or stretched. When this happens they do what they always do: They send impulses to the root, into the spinal cord, and on into the brain, which may interpret the impulses as numbness or pain. And here's the really interesting part: The brain doesn't know whether the impulses came from the nerve endings in the arm or along the nerve or in the nerve root. All it knows is that the nerve fibers that sent the impulses are eventually connected to the very specific areas of the extremity for that particular level (for example: shoulder for C4). Thus, the individual has the sensation that the pain is in a part of the extremity that actually is not at all directly irritated. Such a painful sensation is called "referred pain" because the pain is not truly from the region of discomfort but is "referred" from a site closer to the spine. The medical term for this is radiculopathy (radicie means "root"), and it means pain that is caused by irritation of a nerve root. The lay term for this is a "pinched nerve". This problem is sometimes seen in torticollis because of the chronic stretching and irritation of the nerve roots that can occur in this disorder. It is further exacerbated by arthritis of the spine that often develops after years of ST.

The arthritis is caused by the wear and tear on the vertebrae, resulting in "bone spurs"; also known as spondylosis (spon-di-lo-sis), that may themselves compress the roots, even when the neck is straightened. Furthermore, the tight muscles of the neck may put pressure on the nerves, resulting in yet another means of irritation. So you can see that there are many reasons why people with dystonia may have neck pain and why it may be felt in an area other than the neck itself. Of course, pain can arise from other structures as well, such as muscles, bones, and other soft tissues, but pain from those areas usually is localized to the region of the irritation rather than being referred to another segment of the body.

Nearly all of the non-medical treatments for radiculopathy are aimed toward decreasing the pressure on the nerve roots and thereby decreasing the associated radicular pain. For instance, neck exercises may loosen the vertebral joints a bit, allowing the nerve root more room to exit the spine. Massage may relax stiffened muscles thereby reducing the strain on the nerves. And far from being a mysterious technique that energizes the spine and restores humoral fluids and "life forces", chiropracty probably works by altering sensations traveling through the nerves when the vertebral facet joints (the connections between vertebrae) are manipulated ("popped"). Thus, it is really only a form of physical therapy, and as such it may have a place in non-medical treatments of ST.

Discussions of medical treatments must be reserved for another day. Botulinum toxin, pain medication, and antidepressants may all be effective treatments and psychotherapy can be an important adjunct to improving self-esteem in nearly all people with chronic debilitating illnesses. Finding a physician that is able to understand and emphasize with the person with dystonia will also go a long way in helping to ease the burden of this troublesome disorder. Odds are the doctor will be able to learn a lot from you. I have.

Matthew Gywnn,M.D.

Atlanta Neurology