Torticollis…or Just Plain Muscle Spasm?

Recently, several members of the Post-Polio Coffee House have described severe pain on one side of the neck and have been diagnosed with torticollis. Torticollis is as much a description as a diagnosis and defined as a “twisting of the neck that causes the head to rotate and tilt at an odd angle” (tortus, twisted; collum, neck).

The most common torticollis symptoms are neck muscle spasm and pain, pain down the spine, headache, inability to turn the head or it being twisted to one side. The neck muscles that are most likely to go into spasm to cause torticollis symptoms are the sternocleidomastoids (that turn your head left and right) and the scalines (that pull your head sideways, ear to shoulder).

Spasmodic torticollis is a rare condition that originates in the brain. But common chronic or intermittent torticollis in adults is most often caused by injury or infection of neck muscles or the nerves that run them, a herniated disc, spinal arthritis or simply sleeping in an awkward position. In polio survivors there are two additional causes.

Let’s return to 1985 for a moment to our first National Post-Polio Survey, which found headaches reported by one third of polio survivors while neck and back pain occurred in nearly three-quarters. Evaluating patients at The Post-Polio Institute, we found that these three types of muscle pain are most often the result of spasms in the neck, upper back and shoulder muscles.

Why are polio survivors spasm-prone? Many have muscle imbalances where stronger muscles on one side of the neck or back go into spasm as they try to compensate for weaker muscles. And weak muscles spasm when they are being forced to do too much work. Poor posture forces weak upper back muscles to hold you up so that you don't topple forward or to one side. Muscle imbalances, compensation and poor posture in your neck, arms, shoulders, upper back -- even in your low back, hips and legs -- can lead to neck muscle spasms and headaches.

I am always dismayed when a polio survivor with severe neck pain or headache goes to a doctor who doesn't even examine their neck muscles, is diagnosed with "torticollis" and sent on their way with the suggestion of taking Tylenol. Or, on the opposite end of the spectrum, others are given a recommendation for Botox injections to paralyze the muscles in spasm, a dicey situation given that Botox will paralyze muscles that have already been paralyzed, or whose nerves have been damaged, by polio.

Polio survivors with neck pain or headaches should not just accept a diagnosis of "torticollis". They should have their neck and back muscles examined and posture evaluated by a rehab doctor and physical therapist to find and treat the cause of the painful spasms.

While the evaluation process is going on, there are a number of anti-spasm medications (diazepam, tizanidine, cyclobenzaprine) that you can discuss with your doctor. In skilled hands, an injection of 2% lidocaine into the spasm can both decrease pain and "breakup" a spasm.

Polio survivors have enough "pains in the neck" without having neck pain, too.