Dear Dr. Cooper:
I am writing in response to an article that I read that was in the January 2001 NSDA newsletter, written by Dr. Robert Bastian, MD at Loyola University, in Chicago.
The first thing that struck me about the article was that Dr. Bastian was admitting that there are less than favorable results with "Botox." In a sense this is a good thing, because someone with SD does need to know that Botox is far from the magic bullet treatment it can be made out to be by doctors and some patients. Far too many people in my opinion go for their initial injection without first looking into the side effects, whether they be physical or mental/emotional.
After reading the article over a couple of times I had to wonder "Why is he writing an article on SD's negative experiences with Botox? I began thinking back to all the people with SD that I knew that have experienced an emotional roller coaster ride. One shot good result; next shot no result over and over it goes. Could it be that these poor people out number the person that can consistently rely on their injection to provide them relief from their spasms? The psychological devastation cannot be overstated and should not be understated. Would someone that was blind want to be able to see one week and not the next? Speaking normally for weeks or even months, counting on the next injection to be just as good and having the rug pulled out from under you when it is not, is extremely devastating.
Dr. Bastian cavalierly mentions other side effects and makes the statement: "The following side effects, when perceived as liabilities that overshadow the benefit of Botox, will cause individuals to question the continuation of Botox therapy." He goes on to list and discuss initial breathiness, coughing on liquids, and shortness of breath in abductor patients. I know of an abductor who during a vacation in Florida ended up in the hospital and had to have a cricothyroidotomy so he could breathe. This is not a perceived liability, this is a life-threatening situation! Having your throat slit open so you can breathe is very serious and it makes me wonder if Dr. Bastian would expose his own loved ones to this sort of "perceived liability." Abductors should strongly consider this as a possible life threatening side effect to a Botox injection.
Initial breathiness is also listed as a side effect of Botox injection. My experience with this side effect was very unnerving. After one particular injection, I could only speak in a whisper that was barely audible for nine very long weeks. I felt that this was worse than the Spasmodic Dysphonia even though my abductor SD was fairly severe. Anyone that has experienced laryngitis for any length of time knows how frustrating it is. This is experienced by Adductor and Abductors and can very in length. Dr. Bastian says that limiting breathiness is "a pure dose issue" and goes on to list typical doses used. After this he says that "persons that want little or no breathiness may experience return of spasms sufficient to prompt re-injection at 12 weeks, rather than the typical 16-18 weeks." Most of the SD's that I know would feel that Dr. Bastian is way too generous in his estimates on the length of time Botox will prevent spasms. I feel if you were to poll most SD's (including Dr. Bastian's patients) they would report that typically the spasms return much earlier than 16-18 weeks after the injection.
Dr. Bastian at one point in his article boasts: "In my 700 career-total case load, no patient who was never before injected failed to have an effect from Botox, but this is apparently possible." Are we supposed to get excited by this statistic? Is he saying that even a bad result is something that we should be enthusiastic about? Change for the sake of change is not always a good thing. People go to a doctor such as Dr. Bastian believing that they will have a better voice after the treatments than before. To be fair the context of this statement is made relative to "immunity to Botox" and I believe that Dr. Bastian is making the case that none of his vast patient base has experienced immunity to the injection. I have personally known several patients that have received very very minimal effect with injections that might have well been "no effect injections." It must be nice to collect the type of fee Loyola or any other medical establishment collects for an injection that gives such a minimal effect. I feel for the SD patient that does not have the insurance that will pay for the injection or only pays a part for something that appears to be hit or miss.
I am not completely negative when it comes to Botox. I know SD's that do not generally experience side effects and get fairly consistent results. For those people Botox is great and if they are happy with the results and are not concerned with any unknown long-term effects than more power to them. But I suspect there is a much larger group that do not like the side effects and are not pleased with the inconsistency of the results from Botox use. These are the people to whom Dr. Bastian wrote his article. The ones that might be on the verge of stopping their Botox shots for any number of reasons are the target audience. An audience that I feel is increasing every year and will continue to increase as long as Botox is being used to treat SD.
I am appealing to that same audience. If you have SD and have considered Botox injections or are presently receiving injections and want to stop, I want to tell you there is another way that works!
Dr. Morton Cooper has a technique called Direct Voice Rehabilitation. If you have experience with speech therapy and it did not work for you, take it from me, this is different. If your Otolaryngologist told you that a speech pathologist would be of no help, ignore it. His techniques work plain and simple. They worked for me and many more like me. If you don't believe me check out his website at www.voice-doctor.com and read my testimonial and many others. Listen to the audio testimonials. If it sparks just a little interest, do yourself a favor and make a phone call to Dr. Cooper. I know it sounds corny but it might just be one of the most important phone calls you have ever made. There is an alternative to Botox that puts you in control of your voice if you are willing to make the effort.