2018 NSDA Symposium Summary - Constant Contact

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people attended this year's meeting in Irving, TX, on Saturday, May 5, 2018. While it might have been smaller than those
2018 NSDA Symposium Summary NSDA Symposiums are great events where people with spasmodic dysphonia and related voice conditions can come and share their concerns with others who understand and can offer guidance, support and navigation through treatment and the ups and downs of living with the voice disorder. The 2018 Symposium was no different. Over 50 people attended this year’s meeting in Irving, TX, on Saturday, May 5, 2018. While it might have been smaller than those in the past, it was still a boisterous, happy and supportive event. On Friday, the Welcome Party included the famous open mic session that allowed people to tell their story. It spanned the gamut of those still coming to terms with the disorder all the way to those who have embraced SD as a part of who they are. So many special connections were made - including two flight attendants with SD sitting at the same table. Another special moment was when a firsttime attendee who came with her mom said “For the first time I don’t feel like I have to protect my mom from anyone”. Special thanks to our excellent speakers who presented complex content at a level that was understandable, empathetic, and helpful. One of the doctors speaking at the event said the nicest patients she treats are those with SD. In addition to the speakers, three Breakout Sessions allowed for small group discussion, and we thank the facilitators that created a welcoming environment that encouraged sharing: Warren Bandel, Mary Bifaro, Ron Langdon, Bev Matthews, Marcia Sterling, and Charlie Womble (in alphabetical order).And the Symposium wrapped up with a special version of "Happy Birthday" sung by the entire room for NSDA Founding President Larry Kolasa! This summary touches on the many aspects of the presentations. The presentations are available for viewing on the NSDA’s Youtube page: www.youtube.com/user/NSDA300. Welcome and Overview of the NSDA Charlie Reavis Charlie Reavis, President of the NSDA, opened the 2018 Symposium by highlighting the Mission and Vision of the NSDA.

Our aim is three-fold; to educate the community about SD, to provide support to those affected by SD, and to advance the medical research that focuses on SD. NSDA’s Vision is to ensure the ongoing viability worldwide of the only organization dedicated to continuing the effort to eradicate SD. Charlie encouraged the NSDA community to share their stories with one another as a way to show support for others. History of Spasmodic Dysphonia Barbara Schultz, MD Dr. Barbara Schultz provided the historical perspective on spasmodic dysphonia. She described spasmodic dysphonia (SD) as a movement disorder, specifically a focal laryngeal dystonia. When you look at an SD patient’s larynx, it appears normal in the resting stage, but so do other disorders. Muscle tension, laryngeal tremor, Parkinson’s disease, fatigue, aging and ALS all offer a normal looking larynx until you have the patient use their voice. There are two basic types of SD, abductor and adductor. It gets more complicated when the patient suffers from a mixture of abductor and adductor types, making it more difficult to treat. Ludwig Traube, in 1871, is credited for first noticing and writing about a spasm form of nervous hoarseness. In 1968, the term was changed to spasmodic dysphonia. It was originally classified as a psychogenic or personality disorder. However, Paul Moore was famous for saying let’s take a look at this again, let’s not take this on face value. He advocated telling people it needs to be looked at differently. Skipping ahead to 1976, Dr. Herbert Dedo injected the larynx with lidocaine and noted that the symptoms improved. He sectioned the recurrent laryngeal nerve and also found symptom improvement. This proved SD that was not a psychogenic disorder. In 1980 Dr. Isshiki physically separated the vocal cords to make the vocal folds stay apart so they wouldn’t slam together with so much force to try to reduce symptoms.

2018 NSDA Symposium Summary

Dr. Andrew Blitzer was the first to use Botox® in the treatment of SD. This was considered a brave thing to do because it was never done before. Botulinum toxin injections have now become the treatment of choice for most patients with SD. Dr. Gerald Berke described the Denervation/ Reinnervation procedure as a more permanent surgical procedure for treating SD . In 1999, Isshiki found that there was an increased diameter of some of the nerve fibers. This information is interesting and may help researchers searching for other treatments for SD. The cause is still unknown but we know SD is a neurological disorder and definitely not psychogenic. However, symptoms do show up more when we get emotional. This is not unusual, because emotions affect everyone’s speech. The problem is said to be an issue with the basal ganglia in the brain. The good thing is that this disorder does not change life expectancy. SD affects approximately 2 out of 100,000 people, so those with it are special. Onset is usually between 30-50 years old and it is more common in women than men. Another history lesson related to SD is related to how we look at the larynx. Early endoscopes were big and bulky. We now use both rigid and flexible endoscopes to look at the vocal folds; these provide better views of the larynx. We can now also do stroboscopy which makes a film of the vocal folds as they produce voice appear like slow motion video. The goal of these procedures is to see what is happening during voicing. Vocal folds have a very complex motion. How they move determines how the voice sounds. • •



Normal vocal fold; they come together, it is glistening and they are very pretty With adductor, there is a tight quality to the voice and you see the larynx comes together very tightly and stays closed longer. This can be confused with and/or associated with muscle tension dysphonia With abductor SD, the vocal cords do not come together enough causing breathy quality to the voice.



With muscle tension dysphonia, the false vocal folds are so tight and squeeze together so much that we can’t see the true vocal cords

The sad thing is the delay between onset to diagnosis, which Dr Schultz said is embarrassingly long. A patient sees an average of four doctors before they get the right diagnosis. In the meantime, patients are treated with antibiotics, reflux meds, and steroids; none of these will do anything to improve symptoms. So patients are spending money on healthcare that isn’t needed. Diagnosis can be challenging. It takes a team approach. There is no one diagnostic test to make the diagnosis. We rely on our speech language pathologist because a trained ear is the most important tool for getting a good diagnosis. Role of Speech Therapy Se-in Kim, MA, CCC-SLP The role of speech pathologists in the evaluation and treatment of SD is critical. Speech Pathologists are now involved in the diagnosis and treatment at most major voice centers. Diagnosis of SD is very challenging because it overlaps with other voice disorders. Se-in quoted research that says that 26% of SD patients also have an essential tremor. When severe, it sounds similar to the SD stops. However, muscle tension dysphonia has a more sustained contraction than SD, while tremor is more apparent during a visual exam. Because of the complexity of the disorder, diagnosis still relies heavily on the sound of the patient. Se-in Kim offered a variety of ways in which Speech Pathologists use different techniques to confirm diagnosis of SD. For example, conversational speech gets worse in SD patients versus using simple sustained sounds. When singing, chanting, using a fake foreign accent, or talking on an inhale, the SD voice will generally show an improvement as compared to strictly conversational speech. When a person also has a muscle tension dysphonia, these techniques will not show the same improvements. These voicing techniques and a trained ear can help pinpoint the proper diagnosis.

2018 NSDA Symposium Summary

While voice therapy is not a cure, there are many techniques that a Speech Pathologist can teach someone with a voice disorder to use to help with their voicing. Doctors who provide Botox® injections often ask patients to see a speech language pathologist to provide behavioral treatment. Reasons include: • • • •

Extend the positive effect of Botox® Minimize side effects from Botox® Reduce maladaptive behaviors Provide healthy compensatory strategies that may minimize voiced/breathy breaks and dampen tremor

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