So, you have survived thus far…..and well done for that I say! Take your time to get over what is/was a major operation and keep positive for all the good news is now to come. True, you have no voice but so what !) all the cancer has been removed thank goodness. What you need to do now is to relax, build up your strength and look forward to being able to communicate with the world again.
When it’s gone…..it’s gone!
Losing your voice is likely to be as greater shock you are ever likely to unergo because you have had your larynx completely removed (a total laryngectomy), rendering you speechless. Your surgeon will have separated your windpipe (trachea) from your mouth and food pipe (oesophagus) during the operation and ‘rearranged the plumbing’. You will have a hole in your neck, called a stoma, that you breathe through (and that feels weird to start with). You find that you can no longer force air from your lungs through your mouth to speak. So you will need to learn new ways of communicating. New coping strategies are needed but we’ll do that bit later methinks.
Your new ‘Angel’
This is a new start and a little known part of the hospital armoury will appear before you: this will ‘Your New Angel’. A speech and language therapist (male or female) will visit you (maybe before) after your operation to discuss the possible ways you can communicate after your surgery. You need pen & paper they don’t.You may be able to meet someone who has had similar surgery or see videos of people communicating after their laryngectomy (note that some hospitals encourage larys to talk to pre-ops and others [idiotically] don’t, preferring some classroom ‘boff’ to dictate the proceedure. The type of communication you can use will depend on your individual situation, the type and amount of surgery you have, and what you yourself prefer.
There are three main ways to help you make sound and learn to speak again. These are
- Voice prosthesis or tracheo oesophageal puncture (TEP)
- Oesophageal speech
The main aim will be to return to normality as much as is possible, which means helping you to feel confident speaking with people in everyday situations, including using the telephone. Of the three options above some are likely to be better suited to your work and home situation than others. Some simply don’t suit some people; eg the TEP just refused to work on me and after 3 goes at it we agreed to give up and go for option three, especially as I just could not get on with option two! I can assure anyone reading this that I am now a most proficient Dalek – Dr Who would be exceedingly proud of me!
Tracheo oesophageal puncture (TEP) is the most common way to restore speech after laryngectomy, but it is not suitable for everyone. You usually have TEP as part of the operation to have your larynx removed. Or, as many do, you can go back for a minor operation to have it done later. This is usually at least 8-10 weeks after you underwent surgery to remove your larynx.
In TEP, your surgeon makes a tiny hole called a fistula at the back of your stoma. The hole creates an opening between your windpipe and food pipe (oesophagus). Your surgeon may put a tube (catheter) into the hole to keep it open as the may be some healing going on in there. Or they may put a small valve (voice prosthesis) into the hole during the operation. If you don’t have a catheter into the hole, you will need to have a feeding tube down your nose (nasogastric tube) for a while.
If you have a catheter into the puncture (hole), you may be able to have liquid food down the tube. But once the area has healed and you are eating and drinking, the doctor takes the catheter out and they put a small, one way valve into the hole.
If you have the tracheo oesophageal puncture some time after your laryngectomy, the catheter will only need to be in place for a few days, or you may have the valve (voice prosthesis) put in straight away.
The voice prosthesis is a valve that allows you to make sounds by pushing air from your lungs through the valve and up into your mouth. You have to cover your stoma with your fingers so that the air goes through the valve and not out of the stoma. Once you can use this type of voice prosthesis, you may be able to use other types of valve (plate & closable breather valve) which are hands free. They automatically close the stoma when you are using your speaking valve. So you won’t have to put your hand up to cover the hole when you want to say anything. But hands free valves are not suitable for everyone.
Usability (& frustrations)
Using a voice prosthesis takes practice. After a while, the muscles deep in your throat will grow stronger and vibrate more easily as the air passes through. Your speech therapist will help you. When you have got used to it, you may be surprised at how well you can be understood.
3 main types of valve are used in the UK
- Blom-Singer valve
- Provox valve
- Groningen valve
Blom-Singer valves and some Provox valves are external valves. This means that they are meant to be taken out to be cleaned and many people look after these themselves. Your valve must be kept clean. If it gets blocked, air can’t pass through it easily and you won’t be able to speak. Your nurse will show you how to take out the valve, clean it and put it back. You will be able to practice this until you are confident enough to do it on your own.
Groningen and some types of Provox valve are internal valves. You leave them in place until they need changing – about every 6 months, or sooner if they start leaking. A specially trained therapist, doctor or nurse must change them. They can do this at one of your follow up appointments.
Sometimes you may need to switch from one type of valve to another if your needs change.
Your medical team will make sure you know what to do if your valve falls out and that you know who to contact for advice. Occasionally people have difficulty speaking with a speech valve in place. This is usually because the muscles in their pharynx go into spasm. Your speech and language therapist will help you to try and overcome the spasm. Your surgeon may also suggest a treatment to inject some botulinum toxin (Botox) into the muscle to relax it. Sometimes the problem with speech is caused by swelling of the area around the valve caused by acid indigestion. Your doctor or specialist nurse can prescribe anti indigestion medicines if you have acid indigestion.
Note that this writer underwent three operations because my ‘fistula’ just never seemed to want to be a fistula and closed up as fast as it possibly could. Very, very disappointing but we then found that I was almost perfect with the Tru Tone elecdtro larynx and can now host any event with EL in one hand & microphone in the other – just to prove to you that you should never lose hope.
Oesophageal Speech (air talk)
This used to be the most common way that people learned to speak after a laryngectomy. To speak in this way, you move air down into your food pipe (oesophagus). The air passes through the muscles in your throat and causes vibrations. You learn to use these vibrations and turn them into speech by moving your mouth and lips as you would when speaking normally.
If you use this method, your speech and language therapist will begin teaching you soon after you recover from your operation. Some people are able to do it more quickly than others. Sometimes it may seem that you will never get the hang of it. But keep trying, and you should eventually be able to do it. The biggest difficulty is moving down enough air to be able to produce continuous speech. About 1 in 3 people manage this very well. Some people can even go back to work – even to jobs that need a lot of talking. Your speech and language therapist can be a great support during this time. They will understand that you need a lot of practice.
Nowadays, many people find it easier to use a voice prosthesis than oesophageal speech, but oesophageal speech has the advantage of not needing any equipment. This may be better for you than valve speech if you have difficulty with fiddly things. Or better than an electrolarynx if you think it might be difficult for you to hold something to your throat every time you need to speak. (funnily enough I prefer the EL to throat form of speech).
An ‘electronic’ larynx (electrolarynx), is a battery operated machine that produces sound for you to create a voice. There are many different makes and types, but they are usually about the size of a small electric razor. You hold the machine against your neck, or fit a small tube into the corner of your mouth. When you press the button on the machine, it makes sound. If you move your tongue and mouth you can form the sounds into words. This method of speech after laryngectomy may be best for you if
- You are not able to have a voice prosthesis (TEP) for medical reasons
- You did not have a voice prosthesis put in at the time of your laryngectomy but are waiting to have one put in later
To be able to use this method you need training from a speech and language therapist and plenty of practice. The speech has a mechanical sound to it but most people can make themselves understood. One patient told me (on the QT) that he felt a fool because he sounded like a Dalek. My reply was to laugh (not at him) and tell him that I now tell everyone that “I’m the original ‘ooooman dalek’ and that it was the greatest achievement that anyone could wish for-to able to beat cancer AND learn how to talk again” could they match that I ask? He’s been fine ever since our little chat.
Some of the machines have buttons to vary the pitch or tone of the sound made by the electronic larynx. This will make your voice sound more varied. Your speech and language therapist will advise you on the best type for your situation and can arrange for you to have an electrolarynx on loan. You can look at the laryngeal cancer organisations page for companies that supply these machines. And always remeber that if you do use one of these machines you must always have a spare 9v battery about your person, it’s most annoying wyhen you start warbling as the power source suddenly drains away.
You may find it useful to carry a small notebook and pen so that you can always write notes to people if you need to. Laptop computers, tiny typewriters, electronic notebooks or electronic keyboards i-pads) are other ways you can communicate. A number of small portable machines are available. Your speech and language therapist can advise you on which may suit you best. It may help you to speak to someone who uses the same type of voice restoration that you have chosen. The National Association of Laryngectomee Clubs is a brilliant organisation that, like “20-20 Voice” Cancer, offers support before and after surgery to the larynx. In fact we are are pleased to announce that we have provided our local hospital with 2 x i-pads so that patients in different stages of throat cancer can still communicate. We look forward to submissions from other hospitals for it is our aim that no single person shall suffer anymore, both physically and/or mentally, than they need to: email@example.com is where to contact us if you think we can help you.