Conquering your Voice Dystonia through Research Studies
Dr. Teresa Kimberley (left) and postdoctoral research fellow Dr. Yi-Ling Kuo (right) perform transcranial magnetic stimulation (TMS) on a research participant at MGH’s Voice Center.
In 2003, I was formally diagnosed with a relatively rare voice disorder that I had never heard of before...spasmodic dysphonia, a form of laryngeal dystonia. No one in my family, close or even distant relatives, had suffered from this that I was aware of. I have since learned that I have the "adductor" type of spasmodic dysphonia and I have spent the past, almost 17 years pursuing every available form of treatment for this condition. I continued my work as an attorney for some 12 years despite my impaired vocal condition, but finally retired in 2015 when I could no longer force my voice to perform the tasks necessary to competently practice my chosen career. When I was originally diagnosed, it was suggested that I try botulinum toxin injections into the vocal chords by a well-known laryngologist. Needless to say, I was very fearful of this invasive procedure and very apprehensive of losing my voice altogether. I had approximately 6 or 7 botox injections over a several year period. Meanwhile, I pursued every avenue I could discover for treating my condition, including speech therapy, possible surgical intervention, vocal coaching, breath training, etc. None of these modalities helped me. I fall into a narrow category of SD patients who are very sensitive to the botulinum toxin dosage and it does not alleviate my voice dystonia. With the acknowledgement of my doctors, I stopped taking the botulinum toxin treatment despite it being the current treatment of choice.
In the intervening years, I have helped organize a local support group, helped draft speakers who could provide information for newly diagnosed patients, but otherwise more or less resigned myself to the fact that this was something I would have to live with for the rest of my life. I attended several National Spasmodic Dysphonia Association (NSDA) annual conferences in various places around the country, listened to specialists in the field discuss their current treatment advice for patients, but nothing gave me the kind of hope for the future that I so desperately sought out. Until the 2019 NSDA annual conference attended by a friend and compadre in the SD challenge. She brought home flyers outlining some current research studies going on, funded through National Institute of Health (NIH) grants or underwritten by private or non-profit organizations. For the first time in many years, I felt hopeful that perhaps botulinum toxin was no longer the only treatment on the horizon.
After doing some initial research, I settled upon an NIH funded research study at Massachusetts General Hospital/Harvard Medical School led by Dr. Teresa Kimberley. The same type of fear that initially accompanied me when I had my first botulinum toxin injections came back to haunt me...fear of the unknown, fear of volunteering for procedures I was unfamiliar with, and worry that in the short term I might not derive benefit from the study. After one false start in which I postponed the testing, I decided to take the risk because frankly, I had nothing to lose other than the resignation I had settled for over the past 17 years.
I prepared my list of questions about the study and my application was approved. The fact that I qualified for the study gave me a great boost of confidence that supported my decision to proceed. The study consisted of 2 days of participation of approximately 3-4 hours each day. The first day consisted of an MRI of my brain. The second day consisted of a procedure called TMS, transcranial magnetic stimulation. A laryngologist at the Mass General Voice Center, Dr. James Burns, participated in the study by initially injecting my vocal chords with an anesthetic and then proceeding to insert a thin electrode into the vocal chords. The rest of the procedures were carried out by Dr. Kimberley, ably aided by her assistant, Dr. Irene Kuo, a post-doctoral research fellow.
All the necessary equipment and technology were set up in a designated laboratory setting at the Voice Center in downtown Boston. The MRI images of my brain taken the day before, were projected onto a computer screen. After insertion of the electrodes into my vocal chords, I was asked to vocalize various sounds and they were recorded on another computer screen that looked much like the reading on an electrocardiogram. Changes in pitch and volume depending on the effort I exerted to vocalize were translated into a series of up and down readings on the screen. In the meantime, a metal coil was placed on of my head while I was reclining in an chair, the coil tracked areas in my brain which were connected to the production of hand function and speech. Dr. Kimberley identified various places in my brain that reflected my vocalization and recorded the muscle activity from the vocal cords. It was an amazing experience to see how the researchers were connecting the dots in order to ascertain the potential cause of spasmodic dysphonia, as well as possible new treatment modalities. All the while, they made every effort to ensure that I was comfortable, that all my questions were answered promptly, and that a general sense of optimism and professionalism pervaded the entire experience.
The research team needs approximately 100 participants with spasmodic dysphonia and hand dystonia to complete the study. An equal number of age-matched participants form a control group. The theory is that closer examination of the parts of the brain connected to the production of speech are analyzed carefully to determine the origin of the problem with each patient and how best to evaluate the data to form the basis for future treatment.
It was a most enlightening experience and aside from the fact that I have a personal stake in the outcome of the study, I was also very cognizant of the fact that I would be aiding the highly skilled research team in advancing the study for purposes of future generations to come, opening the door to someday addressing this debilitating malady with novel treatment options. I heartily encourage those of you who might be reading this to consider participating in this and other ongoing research studies. What you contribute by your participation may help you, but equally important, it may very well help many others, including those undiagnosed as of yet, and promote some hope for future understanding of both causes and treatment for this most perplexing malady.