About NSTA - National Spasmodic Torticollis Association

President’s Article – Ken Price

22 Nov

The 2012 NSTA Symposium took place in New Orleans on the weekend of October 20-21 and it was a success! People who arrived early for the symposium enjoyed taking a cruise down the Mississippi river aboard the Steamboat Natchez and roaming the French Quarter. As I have mentioned in my last article, the last time I was in New Orleans, I was in college and they were constructing the Superdome. The city has changed in throughout the years but the old city and French Quarter still retain their charm. Fifty-seven people attended the tour and everyone had a great time.

We hope when we host our symposium in Atlanta on October 19 and 20, 2013, more people will join us on the Friday tour. It is definitely a great way to learn more about the Symposium host city and meet and enjoy the company of the people attending.

The Symposium program was very educational and I thank Dr. Mark LeDoux, our newly appointed Chairman of the Medical Advisory Board for organizing and inviting the guest speakers. I would like to thank the NSTA staff, Justin Aquines, Vi Tran and Anne Nguyen for their contributions. They did all the work planning and organizing the Symposium, registered all the participants, created the program booklet and arranged the Friday tour. I also thank our volunteer, Kurtis Lee for filming the symposium and being our master of ceremony on Saturday evening. For those who could not attend the Symposium, there are short synopses of the speaker presentations elsewhere in this issue. Each of the speakers covered an aspect of dystonia and the various treatments now available for it. While progress in treatment can seem maddeningly slow, it is helpful to remember that botulinum toxins, the first truly effective ST treatment, were just edging their way out of the laboratory and into mainstream use a couple decades ago. Since then, the number of formulations on market has expanded to four now available in the United States.

We have also seen progress in the development of Deep Brain Stimulation, which was originally used to treat Parkinson”s patients, then expanded to generalized dystonia patients, and now addressing patients with ST. While DBS is not the first line treatment for ST, it is showing promise for many whose symptoms become severe or who have developed resistance to botulinum toxins. As medical gains grows, the chances of successful and effective results from this surgery increase.

Another area of promise is in the study of genetics. I am not aware of any treatments specifically deriving from this work, yet, but we now know that many cases of dystonia can be linked to DNA mutations that have adverse effects on the neuromuscular system. As this knowledge is exploited, methods of compensating for these effects will be developed and be added to the options for ST treatment.

The NSTA also tracks and reports on various alternative treatments. These are treatments lacking scientific substantiation from controlled medical testing, but have been observed in practice to offer some means of alleviating ST at the symptom level. These methods include stretching exercises, yoga, various relaxation techniques, biofeedback and Transcutaneous Electrical Nerve Stimulation (TENS), and, in some cases, relief of abnormal cranial nerve influences on ST (most often by dental techniques). There is no guarantee that any of these will be effective on any particular patient, and some can be expensive (such as the TMJ dental treatment or the cost of biofeedback/TENS electronics), but enough people report positive results that we have adopted the policy of covering them in the ST Quarterly and Symposiums.

Finally, we like hearing from our members. We have set up the NSTA to be a community for ST sufferers and communication is a two way street. If you have a comment or suggestion about the NSTA or an interesting story to tell, send us a note. We publish as many as we can fit in a magazine. Please have a Happy, Safe and productive New Year.