My name is Jeff Brode. In 1998, at the age of 42, I developed the classic symptoms of adductor spasmodic dysphonia and, after seeing a neurologist, a speech therapist and an ENT, was diagnosed with the same. As seems to be the case with many other people with SD, the onset of mine came after a particularly stressful year. After a relatively brief period of time and much searching of the internet, I learned all that I could about the disorder. Botox injections seemed to be worth a try.
Over the span of a year or so I received four Botox injections. Relief of my SD symptoms was minimal at best. I never recovered anything close to a normal voice and the periods of “improvement” never lasted more than a couple of weeks. I decided that the poor results were not worth the trouble of petitioning my insurance plan four or more times per year for the rest of my life.
I had been reading on the Spasmodic Dysphonia Bulletin Board website about a relatively new procedure being done by Drs.Gerald Berke and Joel Blumin at UCLA. It was called “selective laryngeal adductor denervation-reinnervation” surgery (SLAD-R for short). The reports of those who had had the surgery sounded very encouraging and I requested more information from Dr. Berke’s office. The literature I received indicated that the worst that had happened to any of the SLAD-R patients to that point was a return of the SD. It looked to me like a safe bet to have the surgery. I was very wrong.
On June 6, 2000 I had the surgery. It was done by Drs. Berke and Blumin. I was told that all went well. Just before I departed UCLA Dr. Berke stopped by my room and told me to “give it a couple of months”. The surgery involved cutting the nerves to the adductor muscles and attaching different nerves. The length of recovery seemed to depend on how long it took the newly connected nerves to become “reinnervated” to the adductor muscles. According to the literature the longest that it had taken anyone to recover their voice was six months. I left UCLA optimistic that I would once again have a functional voice. Today, more than two and a half years and two more surgeries later, I have no voice at all. I can only produce a very breathy whisper.
On June 6, 2000 my vocal cords were intentionally paralyzed and they remain paralyzed to this day. No meaningful “reinnervation” occurred. My vocal cords had atrophied due to the lack of use and a videostroboscopy had revealed that they were as far apart as they could be. Dr. Blumin suggested having a bilateral “thyroplasty” done. That involved using implants to mechanically push the vocal cords together in a fixed position. After waiting more than eighteen months after the SLAD-R surgery (Dr. Blumin told me that reinnervation could theoretically take that long) I had a bilateral thyroplasty done by an ENT in the city where I live, Albuquerque NM. It didn’t help at all and it actually caused breathing problems.
My local ENT wanted to “adjust” the thyroplasty so I had another surgery to do so. It didn’t help either and the breathing problems remained. It appeared that thyroplasty was no solution for my bilateral vocal cord paralysis. Sure, the vocal cords could have been pushed even closer together, and it might even have caused me to have something above a whisper, but the resulting fixed blockage of the trachea would have been intolerable. I wouldn’t have been able to breathe. So I am learning to adapt to living without a voice, having GERD and having difficulties breathing. I am making some progress at this.
This message is not a pitch for sympathy but rather an attempt to provide the other side of the story with regard to SLAD-R surgery. I believe that anyone who is considering having this surgery done should know what the potential risks are and I think I have fairly well described some of them. I have seen no new literature which describes these risks and am skeptical about the doctors who perform this surgery (there are several of them now) voluntarily informing patients about them. Had I known then what I know now, I would have likely not had the surgery.
February 4, 2003
Update: April 5, 2004.The voice, of course, is history. I’ve become a fairly understandable whisperer! I also continue to try to deal with the “secondary” problems caused by this failed SLAD-R surgery: mainly those related to breathing and swallowing. I still aspirate fluids regularly, but have learned techniques to decrease the frequency of this. I have discovered the reason for my breathing problems. In a normal larynx, the vocal cords will close up to a degree during exhalation, “pressurizing” the lungs and providing efficient use of the air that was inhaled. In my case, with the vocal cords in permanent total abduction (as far apart as they can be), it is difficult to “hold on to” a breath. On exhalation, there is no resistance from the vocal cords, thus relatively little pressurization of the lungs. This is a very inefficient way to breathe and the net result is that I have to breathe a lot more to do the same amount of work as I did before the surgery.
The literature concerning SLAD-R still indicates that long term breathing and swallowing problems do not happen. That is entirely wrong! I am proof of that. It is my hope that the literature will soon be more complete and accurate. I hope that this update will be found useful by anyone considering SLAD-R surgery. Best Wishes, Jeff Brode) Contact me at email@example.com
Update August 13, 2012: Nothing has changed. My contact information remains the same. Feel free to email firstname.lastname@example.org