Life without a larynx: what I wish someone had told me

The day my larynx was removed, I lost my voice. But I did not lose myself.

If you are facing a total laryngectomy, if someone close to you is preparing for surgery, or if you work with people who have had their larynx removed, I hope this article helps.

I write as someone who lives without a larynx. These are my personal experiences, shared to help prepare you for a life that can be good, while also being different.

What does a total laryngectomy mean?

The whole larynx, or voice box, is removed.

• You no longer breathe through your nose and mouth.
• You breathe through a permanent stoma in your neck.
• Your original voice is lost.
• Many people use a voice prosthesis, such as Provox, to speak again. Other methods of communication are also available.

No two experiences are the same.

I felt the picture had been a little too rosy

Before surgery, I received information about what to expect. Afterwards, the reality felt more far-reaching than I had imagined.

Hope matters. So do realistic expectations, which can make it easier to find your feet.

The first months were difficult

I was not allowed to speak for the first two months after my operation. At the same time, I had four children, three of them under seven.

Mucus was one of the biggest challenges. After laryngectomy, it has to come out through the stoma. At first, I used a portable suction machine several times a day. Later, I learned to cough the mucus out myself.

Breathing

For me, breathing is the biggest challenge.

I love walking. I love running. Both have become harder.

Some days I feel frustrated. Other days I feel proud that I am still doing it. I have decided that the operation should not decide what I am allowed to dream about.

The things we rarely discuss

The operation has also affected my sex life. Desire is part of the picture, and breathing can be a limitation too.

I do not want anyone to feel alone with these questions.

Can life be good again?

Yes. Determination, humour and hope have helped me. Life is different from before, but it can still be very good.

Frequently asked questions

Can you speak?

Many people learn another way to speak, including using a voice prosthesis. Your speech and language therapist can explain the options for you.

Can you eat normally?

Many people can. Others need to adapt what or how they eat.

Can you exercise?

Yes, many people remain active. What is possible and how to adapt will depend on your circumstances.

Can you swim?

Swimming requires specialist advice, equipment and training. Read the swimming guide.

About the author

Thomas is a laryngectomy peer-support consultant, speaker and founder of STOMAS. He shares his experiences to help patients, partners and loved ones, and healthcare professionals.

You are not alone

You are welcome to contact STOMAS with questions or suggestions for future topics.

My voice. My story. Your insight.