Dragons, Spitballs & Spasmodic Dysphonia

So, I wondered… if there is no cure for Spasmodic Dysphonia, what can be done?

Well, it turns out that despite the fact that there are are relatively small number of Spasmodic Dysphonia cases across the globe,  there are plenty of people peddling purported panaceas to somehow address it.  (Yes, the alliteration was intentional.  Did you like that?)  In my estimation, however, most of these are of little, if any, value.  (That’s just my opinion.  Others may have differing views.)  There are various potions, tricks and techniques requiring you to click your heels 3 times and spin around, and the like, but nothing that really looked like it had any semblance of empirically oriented, consistently good results.  For example, I tried speech therapy.  A couple different times.  But it was pretty, well, useless for me.  I felt like I was fighting some giant, multi-headed dragon type beast but I was armed only with a straw and a spitball.

There did not seem to be a lot of good options.  Based on the research I did, it seemed my best option was to:

  • Have a doctor stick a fiber optic tube with a camera  up my nose and down my throat
  • Jam a big poison filled needle in my neck
  • Use the video feed from the camera to guide the needle into the vocal cords and unleash the poison

Note, there is a local anesthetic.  But the whole process still seemed like some twisted interplay between medieval torture and high tech wizardry.  The poison in the needle is botulinum toxin, the poison that causes botulism.  Better known as botox.  Today, everyone’s heard of it, but back then (late 90’s), people weren’t injecting it into their faces for wrinkles, it was unknown to me or the general public, and the concept kinda freaked me out.  I had never heard of anyone doing this and it didn’t seem like a particularly good idea.  On many different levels.  However, the fact that this seemed like the best option tells you how good the others were/are.

It turns out that botox did give me relief from the strangled words and spasms that filled my speech.  But there’s a catch. Patients using botox go through a 3 phase cycle following the injection:

  1. Breathiness
  2. Semblance of a normal voice
  3. Spasm’s return

…and then the cycle is repeated with another injection. For me, these were typically about 3 months apart.

The problem is that there is significant variance in the duration of each phase, due to the strength of the botox (which can be different even with the same quantity administered), and the location its injected (in the vocal cords) – which is never exactly the same. So this meant sometimes I’d basically be without a voice for long periods of time. Whereas other times I’d hardly lose my voice, and have a reasonably functional voice for a good chunk of time. I would try to time the injections around big presentations, or video shoots, or whatever, but having a functional voice was totally hit or miss. Sometimes, I’d lose my voice (so I could only whisper) for like a month and a half.  Sometimes I would not lose my voice at all.  I periodically questioned whether it was worse to lose the voice or just deal with the spasms.  Ultimately, I kept the botox treatments going until my last one on January 21, 2016.

Overall, I’d say that botox injections are a far better option than doing nothing, and they allowed me to basically manage the Spasmodic Dysphonia to a point that I could function.  However, after many years, some things converged upon me that made me realize I no longer wanted to just ‘manage things’ or simply ‘function’.  More on this later…

Image source: curiosidades.batanga.com

 

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