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| Botox dosing--what works for you?? |  | ||
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Posted by: Dwight ® 11/17/2009, 14:26:44 |
Hi everyone,
I've had SD since I was 14 and I am now 38. I have moderate adductor SD. I didn't get my first botox injection until I was around 20. I go my first injection 18 years ago and back in 1990. I got from Dr. Bastian, who is renowned in the SD field, and the botox worked: I was breathy for about 2 weeks then had a good voice for about 3 months. A year or so later, I went to another renowned doctor and tried it again. That time I had pretty much the same breathiness, but the spasms came back almost immediately. Over the next 5-6 years, I saw Bastian again and a few other famous SD docs and one or two who had no clue what he was doing. In any case, I gave up on Botox because only that first shot gave any real relief from my spasms; all the rest only lasted a few days after the 1-2 weeks of breathiness went away. Well, recently, I decided to give it another try, and after some recollection on my past experience, realized I never really got involved in the dosing decisions, and I couldn't remember what my dose had been. I surmised that perhaps my first dose I only worked because I probably received a larger dose than I did subsequently. Dr. Bastian confirmed this for me when I recently saw him again. I asked him what my first dose had been way back then when we were discussing what dose to try. He said that back in the 80s and early 90s he used a much higher dose than he did now. Most people apparently fared better on lower doses with less breathiness, even if they had to get them more frequently.. He said my section injection dose was half what my first was. I asked him if we just try the same dose I did then again. He didn't recommend it, said things had changed since then, etc., and he ended up giving my a dose a bit higher than the average: a total of 1.7 units. Well, the same old story repeated itself. I was breathy for about a week and then had only a few spasm-free days. I returned and he was quite surprised but agreed that I needed to really increase the dose. We went up to total of 3.4 units. This worked better--I was spasm-free for a month--but it was still disappointing. The next shot I got is my most recent one, a little over a week ago. I got 5 units and I'm still breathy. Dr. Bastian said I was probably what he called a "a fast metabolizer" of botox and that with most people like me the best treatment they can get is about 3 weeks of breathiness and then 6 weeks of good voice. He also said that my high dose was in the 90th percentile based on the average for his own patients. I suspect that my current dose my work better, but might not be enough to get that good response I got from first shot. Does anybody know what the average dose most docs were using around 1990? If higher doses of botox don't work better for me, I'm seriously considering SLAD surgery. Thanks for taking the time to hear me out on this. Best,
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Posted by: Nes ® 11/17/2009, 18:16:07 |
Hi Dwight I have AD & AB SD and have since I was 11 years old (I am now 21). Over the past ten years my dose has steadily increased. I am now on 4 units both sides. Whilst I have some relief from botox it does wear off quite quickly. I have the two weeks of breathy voice (husky sound sometimes) before having a 'good voice' for about 5-6 weeks. I am unfamiliar with your doctors as I am from Australia however my doctor has recently decided that perhaps I am developing 'immunities' to botox type A and may need to try anouther strain... perhaps this could be an option for you? Perhaps worth a try before you consider the SLAD surgery. Also I am not aware of any 'average dose' around the 1990's, I think it differs from doctor to doctor. I have been told though that my amount of 4 units both sides is very high for the average in Australia. Best of luck. Nerolie |
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Posted by: Dwight ® 11/17/2009, 21:06:42 |
Hi Nerolie, Dr. Bastian says that he has a patient, an older woman, who gets 8.4 units or something. Which is close to what you're getting. I'm wondering, though, are you getting injected for the AB as well as the AD? I think doctors generally use higher dosages for AB. Anyone know? You say you've had SD since you were 11. I think you're the only person I've met who got it when they were younger than I did (14). SD made high school painful for me. I think it even interfered with the development of my personality--at least in a social sense. Did you experience that as well? As far as developing an immunity to Botox goes, from what I understand the type B doesn't work as well or last as long as type A. But I also wonder sometimes if I developed some sort of immunity to it, or perhaps a high tolerance, after my first injection. I'd have to find some clinic where they have type B available in order to try it. I'm not sure most clinics do. We must not be totally immune, though, if we're both going through the breathy period. Maybe we're both just fast metabolizers of botox. What are you're thoughts on the SLAD surgery? Dr. Bastian claims that eventually people tend to develop spasms again over the long term. Does anyone know if you can you still get relief from botox after having the surgery? Thanks for responding to my post, Nerolie. It seems we have some things in common. Feel free to email me directly if you'd like at dwightcruikshank@yahoo.com Best,
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Posted by: tschaale ® 11/18/2009, 10:34:54 |
I feel exactly the same way as you Dwight. I developed SD around 14-15 years of age and it changed me considerably. I was just diagnosed about 4 years ago and have recently started trying botox. This is my 3rd injection and none have worked yet. My doctor injects my false vocal cords using the scope and my latest dose was 7.5 each side. I have had trouble swallowing for about 4 days and I can't reach my full voice volume but the spasms are still there. It is so frustrating! Tammy |
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Posted by: Nes ® 11/18/2009, 21:04:26 |
Hi Dwight I have both Ab and Ad however I only receive the injections for the Ad at the moment. I did trial injections in both the Ab and Ad muscles at the same time some years back but found it had little to no additional benefit. I found school extremely difficult, I was never openly teased but I lost a lot of friends... as I'm sure you know people can be quite cruel and hurtful, especially teenagers. My doctor seems to think I have developed some form of resistance to botox A and is looking into acquiring another form of botox (Dysport was the name he mentioned) to trial as he hasn't had this situation before... SD is a lot rarer in Australia due to our small population size. I haven't considered the SLAD-R surgery as it's still only in the early trial stages in Australia. Also I manage to battle SD fairly well most days so haven't resigned myself to surgery just yet. All the best Nerolie |
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Posted by: mdubovick ® 11/18/2009, 14:14:10 |
Botox dosages vary greatly from patient to patient, now and back in 1990. I started Botox in 1998 and most of my earlier shots were in the 3.5 to 2.5 unit range. You are in the hands of an excellent doctor. Work with him to experiment different (higher) doses as well as trying unilateral (one side) shots before you even think about investigating surgery. Surgery is the last resort for people with SD and many other conditions. I would like to discuss this further "off-line". If you wish to contact me, my userid is meldubovick@embarqmail.com |
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Posted by: irish ® 12/06/2009, 12:05:01 |
Hi Dwight, I had SD for 38 years before I had the SLAD-R surgery and I wish I hadn't waited so long. I had it done 1 1/2 years ago. The key is to get the best surgeon. No surgery is good without the skill and expertise. Dr. Berke at UCLA in California is the man to go to. I wrote to numerous surgical patients before I made my decision. There is always a risk but I know people 12 years out now and they are doing fine. I would do it again in a heartbeat. I had the bilaterally surgery, but now Dr. Berke is also doing an unilateral surgery. They cut the nerve that is carrying the encoded message from the brain to spasm. It doesn't cure SD but it treats the symptom, the spasming. Then he transfers another nerve over to the vocal cord. They know all about the nerves in the throat from doing surgery on throat cancer victims. I no longer have any spasms. This only works for ADsd. If you want more information, do not hesitate to email me at: trish0@dslextreme.com. Irish |
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