Spasmodic Dysphonia – The impact of losing my voice

 Dr Kristin Soda shares her personal journey with first losing her voice, and then finally being diagnosed with Spasmodic Dysphonia, a condition she will have for the rest of her life. Learn what it is, and what to look out for.

Video Transcription Below.

Dr Kristin Soda MBBS, FRACGP – Spasmodic Dysphonia

Hi my name is Dr Kristin Soda and I am here to talk to you today about a subject close to my heart called Dysphonia, as I have had a personal experience with Dysphonia being diagnosed 12 months ago with something called Spasmodic Dysphonia.

Spasmodic Dysphonia is very rare 30 in 1 million people have the condition

Now we’re a very rare group Spasmodic Dysphonia about 30 per million people have it and it’s an extremely isolating condition as it affects voice.

What is Dysphonia?

The definition of Dysphonia is not a speech disorder per say but a disorder of the voice box or larynx and it is characterised by altered voice quality, loudness, pitch and vocal effort that impairs your ability to communicate and decreases your voice related quality of life.

What is your personal experience with Dysphonia?

One of the reasons is that I am interested is that as I just said I have Spasmodic Dysphonia and it is currently treated so I may not sound very different to you but it took a long time to diagnose this time last year I was speaking in a very staccato way, my voice would have continuous breaks in it, I would have difficulty beginning some words and my voice would stop in the middle of some other words I was very difficult to understand.

What does Spasmodic Dysphonia sound like?

It may be very useful for you to hear how I did sound about 12 months ago and this little exert is of me attempting to count from 80 to 89 and it is very broken up and you probably won’t recognise any numbers at all and at one point I do begin to laugh a little bit and that’s when you hear a bit more of my voice.

This is how my voice sounded 12 months ago with untreated Spasmodic Dysphonia
Here I am trying to count from 80-89

The only way I could have continuous voice was to whisper and despite what you think whispering requires a lot of muscular effort and this led onto sort of tension headaches and then after three or four months of some speech therapy which was not really helping I was referred onto a Melbourne ear nose throat and speech therapist and we diagnosed Spasmodic Dysphonia by looking directly at the vocal cords that’s called a laryngoscopy and a further six weeks on, so four months into the Dysphonia I was given my first Botox injections.  They are given in this area here into a very tiny muscle and I am fortunate in that Spasmodic Dysphonia the “Adductor type” the muscles are far easier to reach and I had quite an immediate affect so within a week I felt like I had some of my old self and my old voice back.  Now this may not be the same for everyone’s journey but I feel that it is something we need to speak about when we can and I know how isolating voice disorders can be.

So what is Spasmodic Dysphonia?

I just wanted to try and explain what Spasmodic Dysphonia is for you, it is from a group of disorders, a neurological disorders called a Dystonia, so you may have experienced an eye twitch which is a spasm of the muscle around your eye and people with Spasmodic Dysphonia have a very similar spasm but in a muscle in their larynx.

What are the symptoms and what should I look for?

From my experience what I have seen and heard in myself is that I noticed a voice tremor in probably the month before it became really severe and I would sound a little bit nervous to myself and perhaps to family and friends when I didn’t feel nervous.  So a voice tremor and then it was really for me quite a sudden deterioration in voice, so it was, I couldn’t project my voice, it was staccato and very disrupted, it was like I had a really bad laryngitis that just wouldn’t go away.

What should I do if I notice a voice change?

So in the circumstances if someone who develops a voice change and you can put it down to say a viral infection.  I still think we need to look after our voice at that time so you may need to rest your voice, you may need to take some time off work to rest your voice but if it’s persists beyond three weeks, I think you definitely need to be checked and if it persists beyond three months you really need and ear nose doctor to have a look and that’s called a laryngoscopy.

What organisations are out there for information and help?

Well your local GP will hopefully know of some but this network that I was in contact with the Australian Dysphonia Network has been very helpful and very supportive for myself so A.D.N.

How often are you getting treatment for Dysphonia?

It’s very individualised if you can receive treatment that is individualised, I am currently having them about six to eight weekly, so smaller amounts, more often for myself.  Some people who don’t perhaps use their voice as much as I do could probably have them say twelve weekly and they are very small injections, they are a little bit painful, but it is over and done with quite quickly.

How did Dysphonia impact your life?

I think when we think about the body sensors, you know eyesight, hearing, we can sort of all imagine someone who’s lost that and how devastating that is, but we never think of our voice as being something that’s really crucial to who you are and what you do and because my profession involves speaking all day the affect was profound.  You know your voice is where you can show your personality, it is very much a part of who you are and I think when that goes we need to take it seriously and investigate it as quickly as we can and it has been shown that people with Spasmodic Dysphonia are often the delay in the diagnosis is there and it can be years before it is diagnosed.

What causes Dysphonia?

Because we are a small group and rare, we don’t actually know the cause, we know it is neurological, we know somewhere between the brain and the nerves that come down from the brain and innovate the voice box are affected, but we don’t quite understand why that happens.

Who does it affect?

I fit the sort of classic group of people who are affected with Spasmodic Dysphonia, it is, it does affect women more than men it tends to begin in middle age, so beyond the years of forty and that sort of cluster group of people and that’s not to say that other males and people older or younger are not affected but I sort of fit the classic mould of that.

Is the current treatment a cure?

So Botox is a treatment but not a cure, there are, there’s some research going on about some medication that can affect some people with Spasmodic Dysphonia and help them but it’s very specific and I’m not really sure about whether that’s even available in Australia yet.  There are, there are some famous people with Spasmodic Dysphonia, the singer Jenny Morris has it and there’s a famous USA cartoonist he writes Dilbert, he has it as well and I believe he has had a surgical intervention where they have tried to re-implant the nerves around the larynx and with much rehabilitation and speech therapy he’s speaking reasonably, normally now but that’s very expensive and it’s still experimental.