Hello 2016

Posted by Rob H on March 15, 2016

Wow I didn’t realize how long it had been since my last posting. What’s been happening since then?

Let’s see…Donald Trump (??!!!) is about to win the Republican nomination. That’s pretty crazy to put into print.

What else? Well seeing that my last post was in August 2014, I guess 2015 happened! I only had one shot in 2015, it was on July 20. I was able to stretch my Botox injection almost exactly 1 year (from July 21, 2014 to July 20, 2015). My old voice doctor retired, and I got a new doctor who is an industry expert with many studies & speaking arrangements to his credit. I also still have the same “shot guy” I’ve always had. They do the injection as a 3-person team, with a nurse on hand taking down notes to my file while the anethestist does the injection, guided by my voice doctor to ensure it goes in the right spot.

The funny thing was, my shot lasted so long that my doctor joked “see you in a year” when I was leaving. I hope so.

Ok now for some additional details on my last shot: I was really preparing my co-workers for a breathy, weak voice for 2-4 weeks after the shot. That’s what I have typically experienced, and my shot in July 2014 caused quite a long breathy voice period (close to 4 weeks, much longer than previous shots). So what did I do last time? The exact same thing. I figured I can live with 1 month of breathy voice if I can get 11 more months of useful voice after that.

Funny thing is, this time wasn’t the same (even though I got the exact same dosage). That’s the unknown factor when dealing with these Botox treatments. Some are “duds”, some work beautifully, and some are in between. It’s hard to know from time to time exactly what will happen. So this time, in July 2015, I had NO down time on my voice. Ok maybe a couple days where it was “weaker”, yes, but my voice never bottomed out like it has on every other shot. I have no idea why.

Now, as for the length of time I get out of it: that’s still up in the air. I am now 7 1/2 months out from that last treatment, and my voice is definitely weakening. The same thing happened last time, I kept wondering how long I could stretch it out and I think the last time, I went past where I should have but it was still a usable voice so I “lived with it”. I would estimate I had about a 30-40% voice by the time I had my last shot in July 2015.

Right now, my voice is probably about 65%. It’s definitely weaker but not bad yet. So it’s hard to plan my summer as I don’t know how fast the decline will be & when I need to plan my next shot. I hope it’s in July or later but we will see.

10 Comments

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Mar 24, 2016

I just wanted to say that my story is almost identical to yours and it’s really nice to see someone has the same problems. I’m getting Botox injections now about every 6 months and some do work better than others…
Strangely I smoked a cigarette and it loosened my voice perfectly… I had never really smoked before… Also alcohol has helped… Also klonopin has helped… But None of what I mentioned helped for very long… Yawning in the middle of a word has helped…. I’ve had trouble with just specific words… So while I’m talking I may try and think of a different word to start with…..I’m a Registered Nurse and I had to work night shift forever because I couldn’t speak… It was embarrassing and at night I didn’t have as many people to talk too… I thought about quitting and giving up all together… Thank you for your posts!!!

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Mar 26, 2016

Hi Amanda, thanks for your comment. Yes it does sound like we are very similar with our SD. Yawning for me works very well too! Have not tried klonopin or the cigarettes but I imagine they would do the same for me. I totally understand about working nights so you avoid as many people as possible. But somehow it just works out. Good luck to you!

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Apr 18, 2016

Glad to see an update from you. I’m amazed that you can go a year between injections! How big is your dosage? How severe is your breathiness? I started getting injections about 1.5 years ago and were still trying to determine the ideal injection. 2 of the 6 injections have been good so far. I’m optimistic we’ll soon determine the ideal amount and hopefully be able to replicate good results each time.

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Apr 19, 2016

Hey Andy! I want to say I get 1.25 units each side. It’s either that or 1.5 but I’m pretty sure it’s 1.25. I asked last time but it’s been awhile so now I forget. I probably should have noted it on this blog, maybe next time I will. But what I’m finding is I don’t have any “set” breathiness period no matter how much of a dosage I get. At first I was getting 2.0 units I believe, and had 2 weeks, then 3 weeks…then I lowered the dosage and had varying times again. The last 2 times with 1.25 units, I had 1 month (yeah, the worst one yet for the smallest dosage)…then this last time I barely had any. I never got to a “breathy” voice with the last shot. I was fully expecting another 1 month without much of a voice, and I prepared my boss for it but it never happened. I think there are several factors which make it difficult to predict: 1-the potency of the Botox used. 2-the pinpoint accuracy of the shot itself 3-whether or not you have a cold.

z do think you will get it dialed in, just don’t get frustrated if you get a skewed result every now & then. Easier said than done, I know. It’s just part of the game, I guess.

Best wishes to you!

-Rob

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Apr 29, 2016

Hi Andy,
I appreciate the information you share here. I was just diagnosed a week ago with muscle tension dysphonia (MTD). I am 43 years old. And I have yet to go to a speech therapist, although I am taking propranolol which is supposed to help. I hope to get some results soon! This is really something that is NO FUN to have! And, I’ve been plagued with it for 19 months now. It’s nice to know that there is treatment for it! I also have benign essential tremor in my hands/fingers. Do you have any of that? I’m wondering if it is related to the voice tremor/weakness?
Thanks,
Kari

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May 12, 2016

Hi Kari

Sorry to hear about your MTD.

I don’t have an essential tremor. From what I’ve learned, people that have SD (and maybe MTD) are more likely to have an essential tremor than people that don’t have SD.

Before I was diagnosed with SD I had hoped I had MTD instead of SD because I believe MTD is curable/fixable whereas SD is not curable. So that’s good for you if it is MTD.

Another website you might want to check out is http://www.dysphonia.org . A lot of it is devoted to SD but probably some helpful info for you on there as well. Good luck 🙂

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May 14, 2016

Hi Andy,
Since I last wrote, a couple of weeks ago, I have learned that mine is not MTD, but rather Spasmodic Dysphonia also. I will be seeking out treatment soon. I appreciate the information on your site.
Kari

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May 23, 2016

Hi Kari! My experience was the same as yours, they thought at first it was MTD and then later changed it to SD. It’s pretty hard to diagnose.

Here is the 1st post I made when I thought it was MTD: MTD

And here is the post after that, when it was confirmed I had SD instead:

SD

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Aug 18, 2016

I’m so happy to have found this blog! I was diagnosed with spasmodic dysphonia 11 years ago by Kyzysztof Izdebski http://sfent.com/krzysztof-izdebski/ who claimed to have discovered the ailment. Ironically, for years I’d have a recurring dream that I needed to scream, but nothing would come out. The stress I felt in the dream is similar to the anxiety I feel just before and during my voice failures.

I had trouble with SD for a few years after I was diagnosed, then it got a lot better; now it’s back. For me, it really seems psychological because I can talk just fine sometimes, but when I think about it, my voice fails. (Friends will often say: “See? You sound fine, now!” Then it will come back.) It feels like what I imagine it must feel to have a stammer.

It has become very frustrating because I am job hunting. I’ve failed miserably at phone interviews–it seems worst on the phone. In-person interviews are difficult, too.

Does anyone have tips for psychological help? Hypnosis? Back when Dr. Izdebski diagnosed me, he didn’t recommend botox because he thought vocal coaching might help. I haven’t done that because, again, my vocal chords seem to work fine at times. He also gave me vocal exercises to do. I think my treatment needs to address what is going on in my head, instead.

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Aug 28, 2016

Hello Corinne.

I do understand the psychological part of your comment. It is worse some times, not so bad others. But I think it has more to do with your muscles being more relaxed at certain times than others. When your muscles are relaxed, your voice is smoother but when you start thinking about it, you get stressed and your muscles tense up. Kinda like when you think about your heartbeat, you can make it beat faster but when you’re relaxed and not thinking about it, it beats normally.

I do think the Botox would probably help you. I know most people are not able to get results from voice therapy. It didn’t help me either. But the Botox has been wonderful. It’s up to each individual to know their own bodies but in my mind, the worst-case scenario is that your voice isn’t good for a few months until the Botox wears off, and it’ll be back to the same as it is now.

Either way, hopefully you can find the treatment that works best for you!

Rob

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