I'm Dr. Robert Bastian. If you have an established diagnosis of spasmodic dysphonia, yet a standard
treatment, botulinum toxin injection is not working well for you, then this video is for
you. Most people with SD are happy with the benefit they achieved with Botox. But for
various reasons some aren't. Maybe they can't get in for an injection when they need it, or
perhaps every injection is unusually painful, or perhaps something very different happens after
some injections or even all of their injections. Another reason might be that early side effects
after each injection, breathy voice and coughing on liquids in particular are intolerable. Well let's
work through these and other issues by building a list of things that you can work on together with
your doctor in order to make Botox work better for you. First on the list is to realize that
Botox injections must be available as soon as possible within two weeks of your request, even
when you need to move an appointment forward on short notice, that would be ideal. Otherwise, sheer
lack of access to Botox when you need it or when it best fits your schedule can be frustrating. If
you really need Botox, sometimes you need it now. The entire visit of course needs to occur in a
short period of time so that you're not burdened by the inconvenience of the injection itself. The
injection procedure needs to be done skillfully to minimize discomfort, and that includes optimizing
the use of anesthesia. Those with difficult Anatomy can be an exception, but otherwise injections
should be straightforward and brief. The result should be relatively consistent, signifying that
Botox in the syringe—here, the Botox that's in the barrel of the syringe—actually reaches through the
needle and into the actual muscle. So that's what gives us consistent injections, when
what's in the syringe reaches the target muscle. And that needs to be reasonably accurate each
time. Now a small amount of variability is expected and normal because it isn't possible for anyone
to place that medication in exactly the same place every time. It's even more difficult with
the abductor variant because the muscle isn't here but it's behind the larynx right there, and that's
even more challenging technically, and can make for some increase in variability. There's also a
special challenge for persons who need only tiny doses of Botox, because a tiny dose also means if
a tiny volume. So we might have a tiny amount like that, and it's a little bit like tossing only one
beanbag to win the price of the fair rather than increasing your chances by throwing several.
Now, another early issue with Botox satisfaction is when early side-effects are more than mild
to moderate. So, if "this is my SD voice then I want my early voice" "to be like this." So that it's still
very functional but kind of weak. "Or maybe even I take it like this." But never so weak that you
have to take time off work or that you feel very frustrated by the Botox effects. In other
words, you're just trading one kind of bad voice problem SD for another bad voice problem which is
an exceedingly weak voice. Now, here's an important strategic issue that's really, in a way, up to you.
Injections are best done on a regular schedule, and it's going to be different for different
people but the average might be 16 weeks or three times a year. Whatever your personal best interval
is should become clear after you've had a number of injections. There are some people whose muscles
seem to overcome the effects of Botox kind of quickly, and so a very small group of people have
to come as often as 10 or 12 weeks apart. That's not very common but once in a while. There are
other people who on the other end of the spectrum seem to metabolize the Botox very slowly, and for
them they might only be coming every twenty weeks. They're the really fortunate ones, but
again, typical would be sixteen weeks. Whatever though your personal best interval, the rhythm of
the injections needs to represent season tickets and not a per performance kind of strategy. And I
think those who try to stretch the injections as far apart as possible are usually more frustrated
than those who get on a schedule, and they do a little undulation of their voice like this,
rather than "it's bad" and then "it's better" and then "it's really bad." So that's just a strategy that you
can think about for yourself. Now you might need access to a voicemail where you can leave
a voice sample for your physician or your speech pathologist. He or she can then listen to your
comments or questions, especially after your first one or two or three injections, but they're also
listening to the sound of your voice. And then they can communicate back with you either personally or
in my case, more often through staff. I can answer questions and make comments about what I think
might be a better strategy for the next injection. Now persons with abductor SD leave not only a
voice sample, but they should also—on the telephone while they're talking—they should then, or while
they're on the phone I should say, they should exhale fully; empty their lungs and then breathe
in as fast as they can. Normal, when you do that and your things are normal it sounds like this,
so you hear that rushing sound. But what we
want after abductor injections is to hear a little noise. So we want either a
little noise like that or sometimes even uh-hmm where you hear a little louder noise and that
where you hear a little louder noise, and that tells us we've hit our target muscles.
Now, in order for you to work most effectively with your doctor
including through those voicemail samples, you both have to be clear on the difference between
spasm and Botox side-effect, and you have to be able to communicate those to each other. Every
now and again we work with a patient who really has difficulty distinguishing the difference,
and this is where that voicemail system is particularly important. Now let me just mimic
quickly some of the various phenomenology. So a classic kind of moderate severity "adductor SD
might let me like that, with the phonatory 's' or the kind of squeezing like that with..."
There's another variant "where the voice is just kind of squeezed all the time. There isn't a lot
of phonatory arrest but there's that squeezing kind of quality like that." That's another variant
and those are spasms. Abductory, the classic, is that the person is "talking along like that" and
the voice just drops, (demonstrates) like that. But there's also a more tonic variant where
"the voice just sounds kind of breathy and there may be a little instability as well. But there's
just this kind of constant, a little bit of a breathy kind of quality." And then there's AD
with a lot of tremor "where the voice not only—it has the catching, but it's kind of shaky like that."
and you hear on a sustained voice you'll hear (demonstrates) where there's tremor and catching. Now, this might
be a mild Botox effect where the voice has what I call a soft edge. It's faintly breathy but it's still
very functional. "A moderate voice might be like this, and if you've pushed that voice it might
break a little like that." That isn't a spasm, that's just the voice giving way or cracking
because of my pushing too hard. If I just back off and allow it to be a quiet voice like that
those little breaks and ... will be less. Now a severe Botox effect "would be like this when
person is just whispering and they, yeah, they have hardly any voice at all. And the voice, the
pitch, the pitch sometimes goes kind of high like that." Now the last phenomenology is again, that
for the abductory. Well, we've summarized here the basic conditions for success; easy access
to injections, kind of on demand. Straight forward injections, not terribly, you know, painful. Fairly consistent
results. A regular rhythm of injections, about three times per year for most people. Optimal dosing so
that side effects aren't frustrating for the first week or so. And the ability to distinguish between
spasm and Botox side effect—Botox effect. So now let's look at optimisation of Botox results in a
little different way, by looking at some common frustrating scenarios and then seeing what the
solution might be. First problem is poor access. You call for an injection and
you're told, "I can't get you in for a month or for six weeks or two months." Well, most places will
inject at least once a month, and so the solution is simply to always make your next appointment at
the time of your injection. So as you're checking out, you get your next injection set up on the
schedule. If injections are offered only monthly instead—we do ours weekly but you prefer a
three and a half month interval—then this might mean that you have to get your injections every
three months, 12 weeks, rather than your preferred 14 weeks. But 12 weeks for you would usually
work better than having to wait till 16 weeks when your spasms are quite bad, or even 20 weeks if they
can't get you in at the four month mark, because you didn't make the time, the appointment, at the
time of your prior injection. Second problem is under dosage. Occasionally a person says that the
spasms do go away or they diminish greatly, but they don't have any weakness. "If I have this kind
of a voice as my baseline SD, and I go straight to," "this kind of a voice where it sounds reasonably
good but occasionally still is a little tight, like like I'm doing now," then we'd expect that
you might only get six or eight weeks before you're needing another injection. So the simple
solution is a bigger dose. Third problem would be over dosage. This is the person who says, "Every
time I get injected, I either whisper like this or I sound very high like this after like like
Minnie Mouse." Or they'll say, "I spend a week or two coughing on liquids." Well the solution there is a
lower dose, and remember again that for most people, that works best for you too, you do need to go to a
mild breathiness or a moderate breathiness, but you don't need more than that. A higher dose could give
you an extra week or two on the backhand, and that's why some people request kind of a high
dose. But the reasonable question is, well, what's the point if you lose a week or two of functional
voice at the beginning? So most clinicians will either suggest, if you're getting that excessive
weakness or Minnie Mouse voice, a smaller dose. Or they'll respond to your gentle request for
a lesser dose. I think we're up to the fourth scenario, is variability, where the person says
that "we use the same dose each time but the side effects and the benefit are very different." Well
that kind of problem means you need to work with your physician to find some kind of stereotype
technique for persons with very difficult anatomy. We sometimes go so far as to mark the chart with
a skin crease and its relation to where we want to do the injection.
We talk about creases and moles and and so forth. Or we even will go so far, especially with the
AB, as to write down that kind of angulation of the needle and try to get the chair, the head
position the same each time. So stereotyped, make it the same each time. Now, some find very frustrating
to match Botox therapy to important occasions in their lives which don't tend to be scheduled
with your voice and your Botox schedule in mine. So sometimes those important events even come
up unannounced, and in that case it's perfectly appropriate to alter your usual dose and timing.
For example, you might perhaps request a half or less of your usual dose if something is coming
up in the next few days or the next week or so. Of course, the next, the following injection will come
a little earlier, but for many this is a worthwhile trade-off. We've even had a few who've learned
while they're at the peak of their Botox benefit, maybe they're in at eight weeks and they're really
liking their voice, and they suddenly learn that they have to travel overseas and be away
for three months. Well in that case it's perfectly appropriate to get an early injection, even while
the voice is perfect and without any spasms at all. And this is another place where your gentle
explanation of your thinking to your clinician will help him or her understand your rationale.
Now one other scenario is the person with a large tremor component. So Botox tends to mute
spasms reasonably well and it often does help a lot with a dystonic tremor. But occasionally the
tremor component is so large that the person says "Well, I get rid of my spasms but I still have quite
a bad voice problem because my voice is so shaky." So they might say, let's just mimic again, that
"The voice is like this, where there's a lot of shaking in the voice and occasional spasms like that."
And so they have their Botox and then they just go to a voice like, "like this, so they don't have this
spasms anymore, but they're still shaking quite a bit." Well unfortunately, Botox again doesn't manage
all tremor well and sometimes we need to try something like propranolol. SD is a frustrating
disorder, but Botox therapy that is really optimized can be a great benefit. If that hasn't
been the case for you up to this point, I'm hoping that this discussion has provided some ideas that
you can take to your physician and discuss and that might help. Thank you very much for listening!