** Last Updated: November 17, 2007.
About Me ...
Thanks for visiting my website. My name is Steve Broome. I am the designer and
author of this website. This website is not endorsed by any medical
organization, and I am not a doctor. The information contained in this website
is a combination of research collected online from other medical sources and my
own personal experience in receiving treatment for a very rare vocal disorder
that I developed during late 2004.
I am 29 years old and live in Mississippi. For the last ten years, I have
worked professionally as an auctioneer, selling automobiles at dealers-only auto
auctions, as well as construction equipment at public auctions. My typical week
has generally consisted of working four days a week and using my voice for
auctioneering about two hours per day.
I suffer from a very rare voice problem that is called a "task-specific dystonia". It's a neurological problem, and the only treatment that seems to help is injections of Botulinum Toxin (Botox) into my vocal cords. I generally go in for this procedure every three months, and it takes about 5-10 minutes usually. This usually produces good results, and thus I have been able to resume auctioneering. Keep reading if you want to know the complete story. Or you can skip to the SHORT VERSION and just get a quick and basic idea of what my problem is all about.
Beginning in November 2004 ...
Now for the detailed history of my voice problems. My disorder manifested itself in November of 2004. At that time, I began to notice an unusual fatiguing of
my voice after about 45 minutes of sustained auctioneering. It
sounded like a mixture of hoarseness, vocal weakness, a change in the tone
of my voice, combined with the sensation of having to strain a little more to produce my chant.
For a sample clip of my normal auctioneering voice, click
HERE. (30 seconds, 1.3 MB) If you
would prefer to watch the video of this clip, you can click
HERE. (30 seconds, 7 MB)
This continued for 2-3 months and I finally visited a local ENT for diagnosis. The physician examined me with a flexible fiber-optic laryngoscopy, and my initial diagnosis was vocal fatigue. He suggested being extremely conscious of the basics: drinking plenty of water, resting when I could, not pushing too hard, making sure to let the sound system do the work, etc... I applied these suggestions, but no improvement came. I continued to get worse.
The problem gradually progressed. Instead of the voice symptoms appearing after 45 minutes of selling, this time frame began to narrow. It became 30 minutes, then 20 and so on.
And my voice symptoms got worse. At first I could push through it and keep
going. But my voice soon began to break up while auctioneering, and took
on the sound of being strained and/or somewhat strangled. Eventually, I
basically became unable to auctioneer at all, as these severe symptoms would
appear after only 5 minutes or so of sustained auctioneering. At this
point, I was consistently drinking over one gallon of water a day (no caffeine
or soft drinks at all), as well as trying to speak as softly as possible while
using the microphone during auctioneering, but this made absolutely no
difference. I visited the local ENT
4-5 times. The only visible problem that could be seen was some minor irritation
from acid reflux. This was treated but failed to produce any changes in my
voice.
After four visits to the local ENT, I gave speech therapy a try. I also took off work for 18 days for vocal rest. Still no improvement. I then decided to visit another ENT
for a second opinion. He performed another scope, and likewise could not see any visible
problem with my vocal cords.
He immediately suggested I visit a larger clinic with more advanced equipment,
and get a videostroboscopy performed.
The videostroboscopy was performed two weeks later in Jackson, MS at the University of Mississippi Medical Center/Department of Otolaryngology. The initial videostroboscopy revealed nothing new other than some excess mucous on the vocal cords. I temporarily began a daily use of a prescription allergy medication to see if that would help. Still no improvement. I came back for another appointment in Jackson about 6 weeks later. Several test were suggested, including a pulmonary breathing test. These came back normal.
(Please note that during these appointments in Jackson and Hattiesburg, it was very difficult for me to describe my problem exactly. If you choose to review the video links I've included on the videos page, you will understand that my problem is quite rare and unique and is best understood by seeing it firsthand rather than trying to describe it. At this point I had not compiled this video footage, which made it pretty much impossible for me to relay to my physicians exactly what my problem entailed.)
Somewhere along this time frame, I began to notice another problem directly
related to my vocal problem. I began to notice the muscles around my mouth
began to feel really weird when my voice gets weak. It's a strange
feeling, almost like these muscles were experiencing spasms and contractions.
As I auctioneered, I could tell that my lips and mouth were experiencing strange
movements. I never auctioneer in front of a mirror, so I had no idea of
what these movements looked like until I captured this on video several months
later. And it seemed that the longer I strained while trying to work, the
worse this feeling got as well.
During this time I underwent a surgical procedure known as Vocal Cord Injection.
My physician injected Cymetra into both of my vocal folds to increase their
bulk, thus producing better closure while vocalizing. Still no significant
improvement.
Shortly after this procedure, my physician referred me to a neurologist for an evaluation. I actually saw two different neurologists. The second neurologist was at the University of Mississippi Medical Center as well. He examined me thoroughly and listened quite attentively to my explanation of my voice problems. He then requested that I compile a home video of myself auctioneering so that he could clearly see these problems while they occurred. He did tell me before I left that his guess would be that I have developed a "task-specific dystonia".
During this time, I did compile a video of myself auctioneering at home. This video has proved to be the key to finding a diagnosis and proper treatment. Looking back, I regret not making this video many months ago. While this video was in shipping on its way to the neurologist, I carried it to my laryngologist in Jackson. He was quite anxious to look at the video. In fact, about 6 different voice specialists on his team watched my segment in the exam room. If you would like to hear an audio sample from that video clip, click HERE. (2 MB) And there is one more clip HERE. (3 MB) More video clips are available on my Videos Page.
They outlined a program of treatment on that particular day. The first thing was a basic MRI test to confirm that my problem is not being caused by some growth of some type in the brain. This MRI test was normal. Second, a test was conducted with three speech therapists to use electrical current to stimulate the muscles around the mouth and throat and observe whether or not it would improve my problem during this stimulation. It appeared to have no effect.
In the meantime, I sent out numerous emails and letters to voice specialists around the country requesting that they take a peek at my video and correspond back as to their thoughts. I received several responses back within a few days. Most seemed to universally agree that my condition appears to be either spasmodic dysphonia or some type of dystonia. NIH in Bethseda, Maryland agreed to see me for an appointment to take a closer look. Their team has a special interest in spasmodic dysphonia. That appointment was on May 22, 2006.
My laryngologist in Jackson, MS suggested that I see a well known voice specialist at UCSF in San Francisco, California. That appointment was the same week as my NIH appointment. Dr. Mark Courey at UCSF observed my video and agreed that my condition seems very likely to be a dystonia. He agreed with my laryngologist (Dr. John Schweinfurth) that botox may very well produce positive results.
I received my first Botox treatment on June 1st. I had no idea what to expect, but they inserted the needle right through my throat in the appropriate place and made the injection into the right vocal cord. It wasn't painful, but it was quite uncomfortable. It is mostly a feeling of pressure on the throat right around the Adams apple. The injection took approximately 2 minutes. It gives you a strong urge to want to swallow during the injection, which is not recommended. Dr. John Schweinfurth in Jackson performed this procedure. He only injected one vocal cord in my case, in an effort to prevent side effects, and to preserve my speaking voice as much as possible. The side effects of Botox include a possible temporary loss of voice, hoarseness and in some cases, difficulty swallowing thin liquids for a few days.
I carefully observed my voice for a period of 4-5 days after my injection on June 1st. I did not notice any difference in my voice from this small dose of Botox, so I went back in for another injection on June 6th. This time my doctor doctor injected both vocal cords. He instructed me to follow the same routine, that is monitor my voice closely each day for any changes that result.
I began to notice a difference in my voice the day after my second botox injection. My voice was very hoarse and weak and breathy. And two days after the injection, it was a little worse. I had a hard time talking in a noisy environment. It sounded similar to having a bad cold when you get hoarse and lose your voice. This hoarseness lasted over two weeks, being quite severe at its worst. So evidently the botox has reached the right muscles.
On June 23rd, or 17 days after the injection, I did get up and auctioneer about 55 cars. My voice was still weak and hoarse from the injection. But I DID NOT experience the customary "breaking up" of my voice, although I didn't auctioneer for very long. This was great news! Even though I was struggling to auctioneer because of the weakness of my vocal cords from the botox, the underlying problem had greatly improved if not disappeared. During the next 2 to 3 weeks, these initial effects of the botox wore off and my voice gained strength. Each week I noticed a marked improvement.
My voice peaked around the 45th day after the injection. It then slowly deteriorated for the next few weeks, until I reached about the 85th day. At this point, most of the Botox had worn off and my voice was in a similar condition to how it was before we made this injection. As you can imagine, I was very anxious to try it again. The Botox was only a temporary fix, but it produced quite amazing results.
My next injection was on August 31st. This time we tried doing a unilateral injection, in an effort to eliminate the two weeks of down time that I experienced with the previous injection of both vocal folds. This injection was 5 units into one side. No improvement came after this injection. A month later I received 5 units into the other side. I was hoarse for about 10 days or so after this injection and did experience some improvement in my ability to auctioneer. But the improvement was spotty at best. One day would be good, the next day would be bad. My voice seemed to be all over the board - very inconsistent. Even on a good day, I always felt that I was about to give out vocally any moment. And even on the best days, I always had the feeling that I had no vocal power, and I had to strain quite a bit to keep my volume up while auctioneering.
On November 30th it was time for my next injection. This time we reverted back to the bilateral injections. The dosage was 3 units on the left side and 2 units on the right side. After this injection, I was unable to auctioneer for about two weeks as expected, but my voice improved remarkably after this initial breathiness/hoarseness. After this initial downtime, I've been able to auctioneer almost at full capacity for nearly three months. I did begin to get somewhat breathy and weak towards the end of this three months, but was able to push through and make it until the next injection.
During the last year, I have continued to experiment with the dosage somewhat, trying more and less to see what produces the best and most consistent results. For now, I seem to have the most success with 2.5 units on each vocal fold about every 3 months. I plan to stick with this dosage for at least the next six months. The next possible alternative to try will be 2 units on each vocal fold. We shall see sometime next year.
In summary, my case is still quite unique. For now the diagnosis of my
condition seems to have taken on the name "task specific dystonia".
The problem is not with my vocal cords. It's a neurological problem.
The brain sends a "distorted" signal to my vocal cords and causes them to respond
in an abnormal fashion. This collection of distorted signals causes them to
move in several different abnormal ways - closing too tightly, not closing
completely, stretching awkwardly and so forth. The Botox partially
paralyzes the vocal folds, thus inhibiting their ability to close too tightly
and strangle/strain the voice. The results I receive from the Botox are
not perfect, but they have a great effect on controlling these dystonic
movements. Thus the Botox has produced quite impressive results in my
voice, thereby allowing me to return to auctioneering.
There is a chance that by repeatedly injecting these muscles with botox and inhibiting their ability to move abnormally, the brain could begin to once again send the right signals to the vocal cords. This is what I am definitely hoping for. In the meantime, it seems that botox will be the story of my life as long as I want to auctioneer every day.
UPDATE: After a long series of appeals with my current insurance provider (Blue Cross & Blue Shield of Mississippi), they have ruled that my policy will not cover the costs of my Botox treatments. They will cover Botox injections for Spasmodic Dysphonia, but not for my condition. Therefore, I have to pay $587.00 every three months for my injections. The hospital allows me to choose how much I want to pay and how often, so $200 per month keeps me up to date on my current invoices.
Previous Botox Injections:
June 1, 2006 - 2 1/2 units/right vocal cord
June 6, 2006 - 2 1/2 units/both vocal cords
August 31, 2006 - 5 units/left vocal cord
September 26, 2006 - 5 units/right vocal cord
November 30, 2006 - 3 units/left vocal cord | 2 units/right vocal cord
February 22, 2007 - 3 units/left vocal cord | 3 units/right vocal cord
May 24, 2007 - 3 units/left vocal cord | 3 units/right vocal cord
September 7, 2007 - 2 1/2 units/left vocal cord | 2 1/2 units/right vocal cord
November 2, 2007 - 2 1/2 units/left vocal cord | 2 1/2 units/right vocal cord
Check back for updates. (Last updated on
November 17, 2007...)