Mercury Amalgams, Allergies, Poor Voice Habits and Finally SLAD-R Surgerywith 3 Year Followups
March 1, 2002(See Feb 2007 Update at end)
I am a 56-year-old clinical psychologist in full-time private practice in Kelowna, B.C., Canada. In the decade and more prior to my diagnosis with SD in 1992 I had a chronic feeling of tightness in my throat, and a “tickle” feeling causing a lot of coughing and throat clearing. I had a very busy, enjoyable practice taking 50 – 60 hours per week. Needless to say, when my voice tanked over the summer of 1991 I considered the “psychological” side of things first – but I could not make a case for it. I could not even talk to my dog, and things I enjoyed doing before I had a very hard time doing. I had to give up teaching College and my practice of psychology was threatened. Fortunately, my in-office colleague is a Speech Therapist and she diagnosed me with SD. My first visit with an ENT and my first botox were on the same day in January 1992.
My first botox shot lasted about 10 months; I also changed my diet at the same time – giving up dairy products, coffee, citrus fruits, chocolate, and spicy foods. Subsequent botox injections, however, lasted 4 months or less, and I gave up on them after several years. My professional life did not allow me to take one to two weeks off every four months, and sometimes the “breathy” periods lasted two weeks or more.
Concurrent with the botox injections I began exploring virtually EVERY traditional and alternative approach known to humankind – i.e. chiropractic (two practitioners), massage therapy x 2 (still ongoing), physiotherapy x 2, cranial-sacral therapy, hypnosis x 2, acupuncture x 2, naturopathy x 2, allergy testing and treatments, speech therapy, biofeedback, Feldenkrais, the Alexander technique, Ayurveda, yoga, meditation, and magnet therapy – none of which produced significant or sustained benefit. Needless to say, I have both the resources and determination to “get to the bottom” of what caused my SD; I have never accepted that it happened for “no reason” and I was determined, if possible, to discover the cause. I also had MRI and CT scans both of which were negative, i.e., showed no neuropathology. No pathology was anticipated as I have no known family history of neurological problems, and I had no history of birth trauma, traumatic brain injury or organic brain disease of any type.
In 1995 I went to Los Angeles for two weeks with Dr. Morton Cooper, a well-known and controversial speech therapist. I found him both caring, and iconoclastic, very persuaded that he and his approach were valid and that other approaches, particularly botox (of which I have had 5 treatments), were misguided, if not dangerous. I gained a lot from the two weeks I had with Dr. Cooper, and his DVR (Direct Voice Rehabilitation) did help reposition my voice but even with 15 to 30 minutes of daily practice over the next 3 to 6 months it became evident that I was plateauing. Nonetheless, I have continued to practice DVR on a regular basis and, although my progress has been at a snail’s pace, I believe that I have benefited from my daily practice, and I anticipate using DVR for the foreseeable future.
Dr. Cooper’s books on Direct Voice Rehabilitation are available through mainstream bookstores. He takes the view that SDer’s problems stem from “glottal-fry”; he has developed some simple yet potentially effective approaches to train SDers to talk more from the “mask”. His approach is not likely effective for everyone and, in any case, for his methods to really work one has to practice them daily for 6 to 12 months, very likely longer (or years as in my case). The best thing I have found is to adopt a NASAL, I call it my New York, voice when doing vocal practice. I assess my success by checking if I can feel air coming through my nose (this is something you do at home!!).
In 1994 I had my silver-mercury dental amalgams removed; with each mercury chelating treatment I have enjoyed greater and greater vocal success and, interestingly enough, parallel improvement in my ability to use the approach that Dr. Cooper taught me. Mercury is best chelated using I.V. DMPS or oral DMSA (after you have your amalgams out); when using these agents I had unmistakable sensations primarily in my neck, throat, and forehead, which strengthens my belief that there was/is a mercury-SD connection, at least for me.
I am now reasonably certain that my SD was related to poor vocal hygiene (reactive to the adverse effects of my mercury amalgams) and, secondarily, certain food allergies. Very subjectively I attribute my vocal difficulties about 40% to the amalgams, 10% to the allergies, and the balance to poor vocal hygiene. I believe that I developed poor vocal habits, i.e. lack of diaphragmatic support and speaking too low in the throat, etc, as a coping mechanism for the tremors brought on by my amalgams, over 10 of them, in place since my pre-school years.
Since June 2001 I have been taking 100 mg of Neurontin in the morning and another 100 mg in the evening, and very occasionally .5mg of Klonipin in the evening. It makes speaking easier. I have few tremors now, but still find it a bit hard to maintain easy, free-flowing speech – speech that I would call natural or spontaneous. I am still mindful of “correct” vocal placement, i.e. “in the mask” rather than in the throat, with good breath support. It is still effortful for me, though no longer generally noticeable by those I deal with. I have learned to be patient about all this and still believe that in time I will have full recovery without the medication. I regard the medication as helping me to use my vocal apparatus correctly and with a little less effort than it otherwise might take. Also if I have a “tickle” in my throat I find taking half a Tylenol Cold Daytime Relief caplet helpful.
I am happy to report that, with the help of the Neurontin and careful use of my voice, after a 10 year hiatus, I have done workshops in October 2001 and February 2002, and I am planning others. It is still a struggle every day though and I count my improvement by the season not the day or month!
I now have a largely normal voice, so long as I use my voice correctly and avoid substances such as dairy products, citrus fruits and juices, and spicy foods. These foods used to “kill” my voice for a day or more. Now they may affect my voice for several hours so I treat myself with these things on the weekend when I know I won’t need my voice for a while.
None of us should have any fantasies that “the doctor” wants to help you more than you want to help yourself. It really is up to all of us to continue to push for answers: I have found the SD Bulletin Board particularly useful. Without it I would not have become aware of Neurontin which has been very helpful to me. To be sure, the BB has also provided some false leads, but SO WHAT? In the end we are all better off knowing, for example, that Noni Juice does not work, and that Neurontin can help some, but not all, of us.
Comments on Mercury
I doubt that the mercury “hypothesis” would apply to more than a minority of dysphonics. However, mercury is a known neurotoxin; there is a huge research literature on mercury consisting of literally 1000’s of articles. In spite of the ADA and CDA’s “official” line that mercury is safe, having mercury, even in small amounts in your body, is a bad idea, and some people appear more sensitive to mercury than others; and why is it that when your dentist removes dental amalgam from your mouth it is deemed hazardous waste? Health Canada sounded a cautionary note on mercury amalgams a few years ago, in California dentists are supposed to post warnings about mercury amalgams, and Scandinavia and Germany are phasing them out. PERHAPS that is why most of us SDers, but not all by any means, tend to be over 40 years old. It takes a while for the amalgams to start to break down. Moreover, the process is rapidly advanced if you have a gold crown placed over dental amalgam; I know in my case that my dentist had placed a gold crown over one of my fillings just three months before my voice really deteriorated.
The role of mercury in the dystonias has had no scientific attention – which is regrettable given that it is an identified neurotoxin located barely 1″ from the larynx and readily transported into the brain, spine, and other organs. I had severe back and chest spasms as well whether I was using my voice or not. It is unlikely that “everyone” who has their amalgams out will enjoy vocal improvement (amalgam removal has, nonetheless, benefited a minority of patients suffering from a wide array of neurological problems) but I also think it unlikely in the extreme that I am the only one who might benefit from this approach.
For those who want to follow this up contact the DAMS (Dental Amalgam Mercury Society), P.O. Box 7249, Minneapolis, MN 55407 – 0249. Their phone number is 1-800-311-6265, and their website firstname.lastname@example.org. There is also a wealth of info on the Web. Go to any search engine, type in “dental amalgam mercury” and follow the links for information both pro and con the issue. One of the best is www.amalgam.org. In addition, nearly all communities of any size will have at least one or two mercury-free dentists who can discuss your health concerns with you.
Addendum: February 2007-SLAD Surgery
As my testimonial above indicates, I tried, and conscientiously applied, a wide variety of approaches to discover the cause of my SD and nonBotox, nonsurgical approaches to overcoming this disabling disorder. In the past 5 years I have relied on DVR and the medications to help me cope, and during the fall of 2006 I also trained in the new ZHT approach. I found it similar to DVR in some respects plus some vigorous speech and other physical movements designed to reposition the voice and better utilize one’s vocal “equipment”. Regrettably it did not prove effective for me. Concurrently, my medications seemed to become less and less effective and I was left with the realization that my SD really was related to an underlying neurological disorder. That, in fact, was one of the benefits of the ZHT therapy. The practitioner commented on my using marked diaphragmatic support to speak; I replied that without such support it was difficult to articulate much of anything – certainly without vocal spasms – and that having SD, with laryngeal spasms, is somewhat like running water through a kinked hose. With the hose kinked the flow is stopped or reduced to a trickle. In saying this the light bulb went off in my head that in my case the problem really was at the laryngeal level, and that it didn’t reflect “bad form” or vocal misuse, certainly not at this time given all that I was aware of and still practiced.
So, I realized I had a very important choice to make: continue as is, go back on the botox every 4 months or so, or take a serious look at surgery. The notion of undergoing botox injections the rest of my life (I am now 61 years of age) was unappealing, so I began to review everything I could about Selective Laryngeal Adductor Denervation-Reinnervation Surgery (SLAD-R) developed by Dr. Berke at UCLA; the most useful research article is found inLaryngoscope , 166: April 2006. I also spoke with about 10 males who all were satisfied with their surgery and sounded utterly normal to my ear although two of them felt they were left with somewhat breathy voices. I was also fully aware that the procedure had some marked failures, certainly for about 4 males, and a female I talked with, and that Dr. Berke had adjusted the surgery to take these failures into account. I was encouraged to proceed and underwent the surgery with Dr. Berke on Jan 16, 2007. At this time, 3 weeks post-surgery, I have a budding, soft and spasm free voice. However, time will be the ultimate judge of the route I have selected for myself. It was not, in any way, an easy decision to make.
I am writing this addendum, as not to do so would be wrong. I need to be open and honest about my effort to deal with this disorder whose aetiology and treatment remain primitive at best. I am aware that some of our BB members have achieved genuine recovery from SD via prolonged speech therapy; would that I were one. But in spite of my best efforts I am not. I will say that one of Dr. Berke’s observations is that about a third of SD patients have a history of upper respiratory disorder.
When I was 24 years of age I had viral pneumonia so MAYBE that is the cause of my SD. I do know that after the pneumonia, as best as I can recall, I began to experience minor voice difficulties which I found I could avoid by going deeper into the throat – which as we all now know is counterproductive. Back in 1995 Dr. Cooper helped me achieve speech in the “mask” effectively but in spite of continued DVR practice up to the present, and which I will continue into the future, I have been unable to avoid the underlying spasms.
In reporting my decision to go the surgical route I am only providing a follow-up note concerning my personal journey. I am not writing to endorse the procedure per se, although I came to the conclusion for myself that it was an appropriate course to take. I encourage us all to continue the dialogue about SD, in the hope that those who come after us will be diagnosed earlier and treated with the most effective therapies. I suspect that were we to live 100 years we would see markedly different, perhaps genetic, approaches to the disorder for those of us not completely helped by DVR, ZHT and similar means.
Gary Lea (Feb 2007)
January, 2008 – One Year PostOp SLAD Surgery
One year ago today I had my SLAD-R surgery at UCLA Medical Center with Dr. Berke. After a harrowing first week post-op (see my report of January 25, 2007) I have made continuing steady progress. Word to the wise, by the way, if you live more than 100 miles out of LA plan on flying, not driving, home – and I’d strongly recommend staying in the LA area for at least 7 days post-op if you can afford to do so (that doesn‘t mean you should stay in the hospital for a week, just hang around your hotel or relatives’ a little longer). It gives you ready access to Dr. Berke and his staff if needed, and will help prepare you for the trip home.
I am very satisfied with the outcome. I am on no medication, whether botox or any other prescribed medication, to help moderate vocal spasming. I have been back to work as a clinical psychologist on a FT basis since March 26, 2007 (11 weeks post-surgery). If voice is a critical part of your vocational life you should assume you will be off work for at least 10 to 12 weeks or more post-surgery. I have attended at Court eight times successfully, and am dictating my reports using Dragon NaturallySpeaking 9, voice recognition software. I bought the software pre-surgery but was unable to use it; now I can. If the software can understand my voice I figure that’s a pretty good outcome.
My voice is predictably different from what it was pre-surgery (i.e., I may have lost the top two or three pitches in my upper range) but consider that a very small price to pay. I never did make on to any talent shows anyway. J Very infrequently (once or twice a week), I have a bit of vocal “misfiring” or transient vocal tightening on the order of 1 to 5 seconds but am able to control it with attention to my breathe and vocal placement. As was the case pre-op I remain vocally sensitive to the flu/colds and certain foods such as caffeine, dairy products, chocolate, citrus, nuts and spicy dishes; the theme remains but it plays out at a different, more manageable, level. I am not breathy. My voice is within normal limits on my speech therapist’s voice analysis program. My voice is much, much easier than it has been for at least two decades. I would consider it to be 95% normal or better, and no one ever asks now if I am having voice problems. Conversely, from those who knew me pre-op, I have had many compliments on my voice. I have had SD, from hindsight, since I contracted viral pneumonia in Jan 1970; after I had the pneumonia I began to notice vocal changes, minor at first, but progressively deteriorating until I was diagnosed 16 years ago in Jan 1992. It was a challenging 15 years.
January, 2009 Two Years PostOp to SLAD Surgery
Two years ago this Friday I had my SLAD-R surgery at UCLA Medical Center with Dr. Berke. It doesn’t feel like two years but time has flown!
I remain very satisfied with the outcome. I am on no medication, whether botox or any other prescribed medication, to help moderate vocal spasming. I have been back to work as a clinical psychologist on a FT basis since March 26, 2007 (11 weeks post-surgery). I have attended at Court probably 12 or more times successfully, and am dictating my reports using Dragon NaturallySpeaking 9, voice recognition software.
My voice is predictably different from what it was pre-surgery (i.e., I may have lost the top two or three pitches in my upper range) so miss out on the high notes of “Happy Birthday” but consider that a very small price to pay. I very infrequently (once or twice a week), I have a bit of vocal “misfiring” or transient vocal tightening on the order of 1 to 5 seconds but am able to control it with attention to my breathe and vocal placement. As was the case pre-op I remain vocally sensitive to colds and certain foods such as caffeine, dairy products, chocolate, citrus, nuts and spicy dishes; the theme remains but it plays out at a different, more manageable, level. I am not breathy. My voice is within normal limits on my speech therapist’s voice analysis program. My voice is much, much easier than it has been for at least two decades. I would consider it to be 95% normal or better, and no one ever asks me now if I am having voice problems. For all intents and purposes I have a “normal” voice, and I would say that it is no worse and no better than it was one year ago.
January, 2010 3 Year PostOp to SLAD Surgery
Three years ago today I had my SLAD-R surgery at UCLA Medical Center with Dr. Berke. It doesn’t feel like three years but time has flown!
I remain very satisfied with the outcome. I am on no medication, whether botox or any other prescribed medication, to help moderate vocal spasming. I have been back to work as a clinical psychologist on a FT basis since March 26, 2007 (11 weeks post-surgery). I have attended at Court probably 15 or more times successfully, and am dictating my reports using Dragon NaturallySpeaking 9, voice recognition software.
As was the case pre-op I remain vocally sensitive to colds and certain foods such as caffeine, dairy products, chocolate, citrus, nuts and spicy dishes; the theme remains but it plays out at a different, more manageable, level. I am not breathy. For all intents and purposes I have a “normal” voice, and I would say that it is no worse and no better than it was one or two years ago.