Silenced: My Journey with MTD
The term “muscle tension dysphonia” is a general term for an imbalance in the coordination of the muscles and breathing patterns needed to create voice. And this diagnosis is not often clear - nor are the exact precipitating factors known but overuse, stress and infections play a role. It can also be difficult to differentiate from "spasmodic dysphonia" and there are mixed cases of both. Spasmodic dysphonia (SD) is a voice disorder resulting from involuntary movements (or spasms) of the voice box muscles and is neurological. These spasms interrupt normal voice (dysphonia) in “abrupt spurts” with a strained, strangled voice; with breathy, soundless voice; or with a mixture of both.
MTD and SD are rare disorders but appear to be more common in recent years and dysphonia is included on the list of long-COVID symptoms. My [Dr. Lia's] story however is a bit unique in that I didn’t end up with long-COVID from the virus itself but from the intervention, many had as mandates rolled out. I have hesitated to share this story not only because it was physically difficult for me to communicate but also for fear of it being interpreted the wrong way. Or for fear of being judged or disciplined for sharing my story. But many of you have asked what is going on and genuinely care about me and I feel that I owe you the real story behind what is going on for me and why I have not been consistently available to you in the past 1.5 years.
My experience with Long-COVID was pretty typical - my white blood cells crashed, and I had significant fatigue and brain fog. I developed pericarditis and had suspected myocarditis [for which an MRI wasn’t made available until 12 months after symptom onset]. As I treated the Long-COVID the symptoms appeared to dissipate quickly with the right approach but the voice continued to deteriorate. I dismissed these early voice problems as being from overuse, minor colds, and projecting my voice through a mask all day.
In November of 2021, I needed to dramatically reduce my workload due to issues with my vocal cords and by December I was unable to do much talking at all. My voice sounded strangled and took an enormous amount of effort to produce. I couldn’t answer my phone or tell my kids to get ready for school. I was hugely dependent on others to talk for me in situations that required communication. I had to type out what I wanted my husband to read to the MD during visits.
Despite my many years in practice I never had a case of dysphonia nor recognized it in myself. I was worried it was something more serious and awaited referrals to specialists to dive into it deeper. The diagnosis I was given in February 2022 was Muscle Tension Dysphonia and was told to pursue speech-language pathology to rehabilitate the voice. I worked with 4 different speech-language pathologists alongside a slew of complementary practitioners in osteopathy, massage therapy, naturopathic care, chiropractic, acupuncture and more. I had small breakthroughs with contorting my voice but nothing that was sustainable for everyday use. My improvements were also nothing major and I would often relapse every time I would encounter a new illness [ even when I didn’t get sick].
I know from practice that I had to enlist a team and that I had to advocate for myself. When I asked what the cause was and how to investigate it I was told ‘what’s the point?’. Now I do acknowledge that I have been helped tremendously by conventional means and that I received an injection of Botox in October of 2022 that really allowed the tension to relax out of the muscles in the larynx and I was able to speak more easily. I felt like I could cope/manage for the first time in a year. Shortly thereafter though I developed pain while talking. My immunity took a major hit with 5 back to back cold/flu/bronchitis bouts and I could feel the tension again increasing in my larynx. I was watching my health markers decline on my wearable device and realized that I was not yet done with this journey. I needed to focus on learning to use my voice properly and supporting my immunity so that I wouldn’t always be in a cycle of tension/dysphonia.
Generally, botox injections are used for Spasmodic Dysphonia but I may be a mixed case - as it very much helped with the muscle tension but if it keeps coming back then I will have to consider a neurological component to all of this. I feel as though something is taking over in my larynx at times and I have to use all my executive functioning to override what's happening.
I have learned that this is a complex and multi-faceted disorder where there is a lot of heterogeneity in what people experience and what their prognosis is. There are also multiple causes that converge to manifest the disorder and I know a few and am discovering still more. Some of those include - having worn a mask and raised my voice for 1+ years in practice so people could hear me, being sensitive to the materials within the mask, having a tongue tie which has lifted my larynx into a higher and less desirable position, pathogenic influences like viruses/colds, immune system suppression, deficiencies in various fats that have compromised the fitness of nerve innervation, etc.
I am taking some time to pursue treatments in Barrie, Toronto and Guelph over the coming 2 months. I am also trying to rest and pace myself to restore my overall health and vitality so that I can return to work sometime soon [aiming for spring of 2023]. Ultimately I would like to be able to gain clarity and insight into what is going on - and have realized it takes an overwhelming amount of energy to do. The person who is well may have 100 goals but the one that is sick has but one.
You also don’t want to see your ND, MD or any practitioner when they aren’t well. When they’re/we're run down and exhausted there is little space for empathy for others. You need your ND to care about you - and it’s really hard to do when they don’t have the care they need for themselves. You want your practitioner's cup to be full and ready to help show you how to fill yours.
I do look forward to a return to work and being able to do the work I love. This was the hardest year of my life. And I realized this profession and the work we do really provide me with a sense of purpose and belonging. Without the ability to do that - I really struggled mentally, alongside being unheard.
Lastly - take care of your voice! It is a REMARKABLE instrument. The muscles in your larynx move faster than any in the body and can vibrate more than 100 times each second. Care for your voice. Rest your voice when it is strained, use an amplifier, hydrate your environment/body and don’t push it.
This is the update as of January 2023.