Speechless - My VCP diagnosis

Those of you who have watched our YouTube videos or met us in person, may have noticed that Stephen tends to do all of the talking. This isn’t because I’m shy (I am reserved, but not to that extent!), or because he doesn’t let me get a word in edgeways (although he can talk for England!). It’s because I’ve developed what I now know is Vocal Cord Paralysis.

My Story

Some time in 2017 I lost my voice. I didn’t think much of it at the time, other than it being a bit strange because I felt fine otherwise - and a few weeks later it came back. A couple of months after that it happened again. It was like a switch was flicked overnight, I suddenly couldn’t speak above a whisper and I kept choking on liquids. Again, it returned back to normal after a couple of weeks, so I kept telling myself it was nothing. I didn’t want to bother the doctor’s with what I thought was just a random voice loss.

This pattern of regularly losing my voice then regaining it continued on until June 2020, when it disappeared, but this time, it never returned. By this point I was already on a waiting list to see an ENT (ear, nose and throat) specialist, so there was little I could do other than wait for my appointment.

Fast forward to my appointment one (very quiet) year later, and after a rather invasive exploration of my voice box, it was established that my cords were paralysed in the open position - meaning that they can’t close enough to make a sound, or breathe, cough and swallow effectively. This is something that isn’t usually associated with SMA (Spinal Muscular Atrophy) so I had a CT scan to rule out any nasty tumours being the cause, and it was deemed that my Vocal Cord Paralysis is idiopathic - meaning there is no obvious cause.

Unfortunately there is no cure either, but there are a number of treatments that aim to relieve the symptoms a little - which brings me to where I am now.

The Treatment

This week I had a small procedure on my vocal cords. I’ll try to spare you all of the gory details, but with a camera down my nose to get a good view of my cords, they inserted a needle (or 7) through the outside of my neck and injected a small amount of filler (like the ones used cosmetically) into each vocal cord to plump them up and bring them closer to the centre. As someone with slightly different anatomy and a lot of anxiety, the procedure itself was not pleasant, but it was manageable, and it’s estimated that the filler should last for around 9 months. Since it was very recent, at the time of writing this I’m still recovering, and don’t know yet if it’s helped (or to what extent) but I’ll update this blog post if there’s any drastic changes. Each person who has this procedure gets different results, so I have no expectations at all, but if it helps even a little bit it would have been worth it!

Moving Forward

As daunting as the diagnosis is, it feels good to finally understand why I’ve been having the symptoms that I’ve had for the past 4 years. Putting a name to the condition has allowed me to learn about it, which led me to find out that it’s not as uncommon as I felt it was (because for the past few years I’d felt like I was the only person on Earth who was going through this!), and it can happen to literally anyone!

I’d be lying if I said it hasn’t hit me hard - I’ve had to grieve for an ability that I never thought I’d lose. But you can only be sad, frustrated and worried for so long (and I have quite a short threshold for those feelings!). There’s been an adjustment period, but I’ve come to realise that I can still live a happy and fulfilling life without my voice. I can still communicate with people who know me well (even if it’s only in whispers), I can still work, I can still express myself through my writing and I can still adventure! Communicating with people who don’t know me well is a little harder, but Stephen has been great at translating my thoughts when needed (even if he gets a little creative with what “I’m” saying sometimes). 

So if you meet us out and about, please don’t think I’m rude if I’m not able to say much! It’s (probably) not because I don’t like you. I’m likely just having a bad voice day.