Spasmodic Dysphonia – What is it?!

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I have worked in the healthcare industry for thirty years; the past eighteen as a specialist nurse. In all those years I have never once heard of SD. Diagnosis is not only missed, but is often dismissed as psychological. The implications are spiraling symptoms and feeling that no one believes you. Very few doctors have heard of this debilitating condition

Writing this article is a new experience, as I am now a patient which is a difficult adjustment having been a clinician for so long.

What is spasmodic dysphonia (SD)?

Adductor spasmodic dysphonia

Muscle spasms cause the vocal cords to tighten and slam shut. This causes interruptions in speech, so it feels like you are being strangled, or sounding like you are having a panic attack or nervous breakdown.

Abductor spasmodic dysphonia

This is different, in that the voice is weak and breathy. I can’t speak for those who suffer with it but it is equally as incapacitating

Mixed spasmodic dysphonia

There are those who suffer both types of dysphonia; although less common

I suffer with adductor dysphonia which is the most common.

Causes of spasmodic dysphonia

Very little is known about SD. Clinical presentation is usually in middle-age however, young people can also be affected. It affects women more than men though there is no research to quantify this. Doctors recognise it is a neurological condition originating from the basal ganglia (BG). Signals are normally sent from the BG to the vocal cords in order to speak. In SD the signals become mixed up causing the voice to stiffen resulting in interrupted, choppy speech.

This is exhausting as well as humiliating, as it comes across as extreme anxiety.

Consequently, my job has become a struggle, because I do have to speak to patients and present at meetings. I am now technically classed as having a disability, so have had to adapt my life. Long term implications for me are anxiety and shame.

From firsthand experience I can tell you there is a stigma. People do notice when my voice is not right, no one comments, but I can see it in their eyes. There are times when I cannot say my own name. It will come out as Ju….l…i..e . This makes me sound anxious, and others uncomfortable.

Before my diagnosis I learned to speak differently as in a higher pitch, quicker and dropping vowels from my words. It was almost like learning a new language, which is wearing and physically draining.

I was finally diagnosed with spasmodic dysphonia in January 2017.

A small scope was put down my nose; and there they were, my vocal cords on a television screen. Interestingly the doctor told me they thought it may be genetic (in my case it is not) or linked to traumatic life events which makes much more sense.

Treatment

Botox

I was injected straight into my neck; no local anesthetic. Both vocal cords were injected it was as simple as that.

There are other forms of treatment which I will not discuss in this article however, botox is the gold standard. There is no cure for SD only symptom control.

To date, I have had three injections. The second left me breathy sounding like I had severe laryngitis. My voice varies with each injection. It does eventually improve and the spasms stop however; it will never sound like my normal voice again. Speaking is less of an effort but botox is not magic so there is always an element of effort especially in noisy environments.

The stigma of SD can be incredibly isolating. There have been many occasions where I have cancelled plans as I am fatigued from speaking at work all day, or my voice simply isn’t there. Post injection I cannot drink fluids without aspirating unless I take tiny sips, and sometimes swallowing is painful. This is not something I want to show to the world so I choose to hide away.

There is so much more to share about SD and my mission is to do just that. I would like to raise awareness as well as educate other healthcare professionals about this complex and poorly understood condition.

About the Author: Julie Nevin, Clinical Nurse Specialist in Palliative Care, BSc (Hons) Kings College London, UK  I am a nurse living and working in London. I am a proud owner of a cat who thinks she’s a dog. I enjoy walking, cooking, coffee and cake and of course writing. I struggle to work full time due to the challenges I face with my voice. I am interested in looking into writing jobs, working with charities and raising awareness of this poorly understood neurological condition


Comments

comments

5 COMMENTS

  1. Dear Julie, Thank you for sharing your story, in an effort to raise awareness about SD. I also have Adductor SD (with tremor) and dealing with this disorder nearly 17 years. I have been treated by the top doctors in this field and still struggling with the right dosage of Botox for an optimal voice. I keep seeking treatment and becoming more involved in support groups. It can be a debilitating disorder and have been asked (by well meaning people) if I have Parkinson’s or lung cancer!? Social events are horribly uncomfortable and many times set in silence. I carry pad and pen to write down my order at a restaurant or where appropriate; people think I’m hearing impaired and do their best to accommodate me. Thank heavens for the support of a loving family and friends. I’m also thankful for the NSDA, for additional support. https://www.dysphonia.org. You are not alone and now part of the SD community.

  2. Hi Mary, thank you for your kind words. It is absolutely debilitating and sometimes I can’t order in restaurants as I just don’t have the volume.
    I enjoy writing about it and will continue to raise awareness.

  3. Hi Julie and hello to everyone who has commented on here. I have had SD for 33 years and what I have struggled with is feeling so incredibly isolated and invisible as no one has ever asked me about it or actually raised any concern about how it’s affected me. It has. Hugely.
    The good news is I was diagnosed 20 months ago and am now having regular Botox injections which are working. The breathy voice after each shot seems to last for longer but the joy of having around 2 months of being able to speak relatively easily makes up for it. Thankfully in the UK treatment is available on the NHS.

  4. Hi Julie, reading your words itd as if they are my words, I have SD which started after having had major operation in 1958 at age 11. I’m glad to say things are changing, although very slowly from back then, doctors thought I was putting the voice on, my mother was told if she took me again to see the doctor she would be sent to a psychiatrist as she was putting ideas in my head…my schooling was horrendous. I did work but it was difficult as I could not talk on telephones..it wasn’t until I was 32 I was diagnosed with SD (21 years) I knew I wasn’t mad but doctors and many other people thought I was. Since the diagnose things haven’t improved that much, there are a few more professional who do understand, but not nearly enough. Since I began understanding Dystonia I always believed mine was hereditary, things that my grandmother,my mother, my uncle, and one cousin did. Then I had my own daughter at age of 21 (11 years prior diagnosis) she has had exactly the same life as I did. In 2014 I was given test for DNA and last year I was told yes it’s hereditary, I have the DYT6 Thrap faulty gene. I’m now 70 still with the same stupid voice, still isolated, so maybe things haven’t moved on that much for me…
    The full diagnosis I was given was, generalised dystonia, I have it in my one ankle, my truck, my neck torticullous, and my voice box, and now I know for sure in my case it was hereditary..
    Good luck don’t let it get you down there are now professionals out there who are listening and understanding Dystonia. Regards Lesley.

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