Posted by: David Barton ®
05/17/2005, 18:43:32
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If this is your second shot (guessing at what number you are up to) then only getting 2-1/2 months out of it is common. Generally after several Botox shots there is a gradual extending of the benefit period.I personally have had 43 shots over a 14-year period. I started with a benefit of 6-8 weeks, and on the last 3 or 4 shots have had 6-8 months between shots. There are a lot of factors involved, which I won't go into here. So don't worry TOO much - you'll adjust better as time goes on. Good luck! David Barton (AD/SD, Auckland, NZ)
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Posted by: Dale ®
05/18/2005, 08:47:04
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David,Will you please explain the factors involved in Botox benefits lasting longer after multiple treatments than they do at the outset of treatment. Also, do you know if anyone has ever done double blind tests with Botox and SD patients? Thank you. Dale
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Posted by: David Barton ®
05/18/2005, 14:05:31
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Hello DaleI'll do my best - mine is a lay, non-expert opinion, based on my own patient experience, reading and listening to expert medical opinion at NSDA symposiums etc. Second question first - Drs Troung DD, Rontal M, Rolnick M, Aronson AE, Mistura K. conducted a double-blind controlled study of botulinum toxin in adductor spasmodic dysphonia in 1991 The link is http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=2041443&query_hl=2 The summary is: Department of Neurology, University of California, Irvine Medical Center, Orange 92668. The treatment of adductor spasmodic dysphonia using botulinum toxin A was conducted in 13 patients as a double-blind, placebo-controlled study. Patients were diagnosed independently by an interdisciplinary team consisting of speech pathologists, an otolaryngologist, and a neurologist. The toxin or saline was injected into each thyroarytenoid muscle under electromyographic and laryngoscopic guidance. Botulinum toxin A markedly reduced perturbation, decreased fundamental frequency range, and improved the spectrographic characteristics of the voice. Fundamental frequency and phonation time remained unchanged. Patients injected with botulinum toxin A noticed significant improvement in their voices in comparison with the placebo-treated group. Excessive breathiness of the voice occurred in two patients, and mild bleeding in one patient in the botulinum toxin A-treated group. Injection with saline resulted in edema of the vocal cord in one patient. Botulinum toxin A proved to be an effective and safe treatment of adductor spasmodic dysphonia. Publication Types: * Clinical Trial
* Randomized Controlled Trial
To those who say "Yes, but this trial was 13/14 years ago", that is correct. My personal take on this is that the benefits are assumed to be so consistently dramatic that there hasn't been a push to repeat similar trials, but there could have been one or two - not sure. I'll try to respond to your other question later today. David Barton (AD/SD, Auckland, NZ)
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Posted by: David Barton ®
05/18/2005, 16:21:47
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Now to answer your first question ..... again, this is an attempt at a lay, non-expert explanation.1 I've never heard of people needing to shorten the gaps between Botox shots for SD, but often heard of people increasing the gap. Some people report that they have missed a scheduled shot, and the voice hasn't gone back to ground-zero SD, so they have been encouraged to wait longer next time. 2 I suspect that in at least some cases the dose is adjusted upwards and this tends to lengthen the interval. In cases where the dose is decreased it isn't lowered enough to shorten the interval. If a patient changes to unilateral injections from bilateral they receive a higher dose so the interval increases. 3 There could be a long-term effect where it takes the nerve terminals a bit longer each time to resprout and reconnect after a Botox shot - hence a slower return of the spasms. 4 The experts have speculated that there could be a 'feedback' effect in SD - where rather than the signalling from brain to larynx itself being faulty the problem could be in how the brain assesses the larynx movements. Who knows? But if this is correct there could be an element of brain retraining going on during the periods of good voice where there is some improvement in the SD. 5 SD is not a completely stable disorder - in contrast to MTD (where the voice is bad all the time until improved and is usually sudden onset) a classic case of SD develops gradually, with some period of better voice during the steady decline. Many report that the voice is better in the mornings for example, particularly during onset. There could therefore be some varying and indeed improvement in the underlying disorder, given that it is unstable. 6 To some extent, SD can be thought of as a muscle over-activity problem, where the muscles do too much, inappropriately. As people age they lose muscle tone - for example the adbominal muscles of a 50 year-old are not as taut as those of a 20-year-old. It could be that the laryngeal muscle too have lost some tone (due to aging, plus lack of full use due to Botox) and therefore do not spasm so definitely and produce such dramatic voice breaks. All of the above are really just my observations ..... but food for thought. David Barton (AD/SD, Auckland, NZ)
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Posted by: Dale ®
05/18/2005, 17:45:46
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Thank you for both of your responses, David. As feedback, I offer the following: To my knowledge, the age of a double blind test is irrelevant to its relevance. :) I can think of another factor that might play a role in Botox injections being required less frequently over time. I believe most of us agree that the compensatory mechanisms used by SD patients are sometimes adverse to vocal production. If Botox alleviates SD symptoms, it also would alleviate the need for compensatory mechanisms and they might be unlearned over time as a person enjoys more normal voicing. Elimination of adverse compensatory mechanisms could postively impact the longevity of the Botox effect. Perhaps this also is why it sometimes is reported that speech therapy in conjunction with Botox lengthens the effect of the injections. The speech therapy is useful to eliminating the adverse compensatory mechanisms. Dale
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Posted by: Valerie Handelsman ®
05/23/2005, 12:24:56
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Paula,
The same thing happened to me. I don't think you can receive another shot for awhile because of something to do with antibodies building up in your system.
I received 3 shots total which hardly worked. Then one day I almost choked to death on a glass of water, and that was the end of Botox for me.
Good luck to you.
Valerie
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Posted by: Paula B. ®
05/25/2005, 01:09:02
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Thank You Valerie,After getting David's response, I feel a lot better. I won't let my SD control me, because I'm in charge, and I can control it. :) Afterall, I'm not trying to please everyone, just me. When my voice gets bad, and I get annoyed at how I sound, or of constantly explaining myself to strangers, I can fix it for a few months or more. If my neck starts to hurt, or I notice having breathing problems again, I can do something then too. Ya see, I had SD for years, without knowing, and I lived with it. It wasn't that bad then, nor is it now. I do notice a change, but it's okay, because I don't think anyone else notices. At least I hope not, and if they do, who cares? We are all different in this life, just wish more people realized it. Good luck to you too, Paula (Chicago)
ADSD
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Posted by: Tommyinme ®
05/25/2005, 04:38:45
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Hi Paula. Believe me, there are no stupid questions here. Here are my experiences, and I've gotten about 50 Botox injections over 14 years. I used to get two to three injections per year, and the dosages were fairly large. This allowed more time between injections, but also extended the "breathiness" period. This period following the injection, for me, was extremely difficult, and for 4-6 weeks I couldn't do much other than whisper. We finally started lowering the dosages, and I now get about 1/2 unit per side injected. It's such a small amount that my doctor has a hard time doing it. He also uses a 30 gauge needle. The results of the small dosage allow me to have a normal speaking voice for the same amount of time as the large dosages used to, but without the difficult breathiness period. I still get it following an injection, but it's so much better with the small dosages. I now get Botox about every three months, and I don't wait until I'm struggling to talk to get another one. I must add, it took several years of experimenting to get to this point. Because of this site we're on right now, that may not be the case for new SD patients. For everyone's information, there are studies going on right now at the National Institutes of Health (NIH) in Bethesda, Maryland, specifically aimed at SD. I'm a volunteer, and have been there three times for one study, and am waiting now to see if they can use me for another. Who knows if anything will come of it, but let's keep our fingers crossed. Tommy
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Posted by: cmp-slp ®
05/25/2005, 07:32:11
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Tommy:
I am interested in the studies you are participating in at NIH. Could you briefly outline those for us?
Thank you,
Connie
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