Escape from dysphagia
With patience and perseverance
A patient case
Peter Weste only realised that something was wrong when he started spitting up blood. And of course this had to happen on a Sunday, "as it always does," he adds with a sigh. During the interview, he tells us that the hospital diagnosed oropharyngeal carcinoma at the base of the tongue and the supraglottis, the uppermost section of the larynx. The carcinoma was removed in major surgery, after which part of the pectoral muscle in the throat was used to reconstruct the affected area.
To enable the wound in the throat to heal and to prevent wound fluid from entering the lower airways, a tracheotomy was performed using a blockable tracheostomy tube, and a feeding tube (PEG) was inserted to ensure nutrition. The epiglottis also had to be removed during major surgery. Not least, this resulted in a swallowing disorder, so-called dysphagia.
Dysphagia refers to difficulties or even the inability to swallow saliva, food and/or liquids safely and effectively. Depending on the severity, aspiration can occur, which describes the penetration of liquid and/or solid matter into the lower airways. For Peter Weste, this predominantly meant training, and not just swallowing. He was aided by Birte Westkamp, speech therapist at FAHL for the North Rhine-Westphalia region.
Initially, therapy began with unblocking the tracheostomy tube and fitting a speaking valve. "In addition to the option of regaining speech with the aid of a speaking valve, these one-way valves are primarily designed to redirect breathing air via the upper airways to improve or restore sensitivity," explains Ms Westkamp.
When the tracheostomy tube is blocked, there is no air circulation in the upper airways, thus reducing sensitivity. Sensitising the upper respiratory tract is an important step in being able to feel the secretions there again and, for example, to be able to regain use of the cough stimulus. Coughing is a protective mechanism which normally occurs involuntarily when you choke. However, there are also patients who have such a great loss of sensitivity that they do not notice when they choke. This is referred to as silent aspiration. A reflexive cough does not occur when choking and the aspirate can enter the lower respiratory tract into the lungs unhindered. This was also the initially suspected case for Mr Weste, which was confirmed using the FEES (fibre-endoscopic evaluation of swallowing) diagnostic method. Suspected silent aspiration should therefore be clarified by instrumental diagnostics. With the cannula unblocked and the speaking valve in place, triggering of the swallowing reflex and coordination of the swallowing process can also be trained.
In the case of Peter Weste, triggering of the swallowing reflex was delayed due to radiotherapy and sensitivity in the upper airways was limited. The speech therapist therefore often worked with ice in the therapy sessions to provide more information to the mucous membrane with the aid of the low temperature. This was intended to trigger the swallowing reflex more quickly again while at the same time improving sensitivity so that Mr Weste could, for example, feel any residues possibly remaining in the throat after swallowing and clear these of his own accord.
To prepare for the swallowing training, Birte Westkamp loosened the throat, neck and shoulder muscles and the swallowing muscles of her patient at the start of therapy. The depth of his breathing also played a role. Wearers of tracheostomy tubes tend to breathe very shallowly and high (into the chest). As a result, lower areas of the lungs may possibly not be ventilated, or not well enough. By unblocking and using the speaking valve, the airway becomes longer again and breathing resistance increases, but patients often also need some support for diaphragmatic breathing.
In a therapeutic setting, Peter Weste was instructed on how to unblock by himself and to apply the speaking valve. This enabled him to practise autonomously, e.g. the compensatory swallowing manoeuvre "supraglottic swallowing".
At the beginning, Mr Weste was only supposed to use this swallowing manoeuvre when swallowing saliva. Later on, when therapy also included nutrition (in other words also food), he was also allowed to practise the swallowing manoeuvre independently outside of therapy, with small amounts. During this swallowing manoeuvre, it is important to actively hold one's breath before the regular stop of breathing in order to prolong closure of the laryngeal inlet. After swallowing, one should cough/clear one's throat without breathing in between and then swallow again. Only then one should resume breathing. Due to the lack of an epiglottis as a protective device, Mr Weste was thus able to cough up food from the larynx inlet and then swallow it to prevent aspiration into the lower respiratory tract.
Mr Weste found the swallowing training itself very strenuous at first, as he describes in the interview: "And I was surprised at how many calories you burn in the process!" The topic of nutrition has occupied the 65-year-old ever since. He developed a kind of occupational therapy and cooked every day to find his own perfect food for the gastric tube. "I spent hours chopping, cooking, pureeing and refining," he tells us. First of all, the right consistency had to be found so that the food could reach the stomach via the PEG tube. That took a lot of attempts. In the end, Mr Weste managed it and replaced one tube feed a day with his own home-cooked food.
Peter Weste trained diligently every day, including his motor skills. He started doing puzzles to train his fine motor skills. Incidentally, doing puzzles also stimulates cognitive skills1, a welcome side effect. At some point, Peter Weste started woodworking and later on with technical handicrafts. Although fitness was not to be neglected either. Initially, he began with short walks with the tracheostomy tube unblocked and the speaking valve in place to improve the pulmonary situation. Over time, he was able to extend the distances further and further and gradually increase his speed to the point of jogging. Physical fitness was also important for the ongoing therapy. Now Ms Westkamp and Mr Weste were able to practise the shaker manoeuvre.
The shaker manoeuvre is a full-body strengthening exercise with the objective of strengthening the muscles of the larynx plus improving the opening of the oesophagus as well. "This exercise is very demanding and also requires a certain level of fitness," says Birte Westkamp. And this is how it's done: lie flat on your back, for example on a mat on the floor, raise your head and tilt it towards your chest, keep your shoulders on the mat/floor and look at your feet - hold this position for 1 minute. Then raise your head 30 times and lower it again. One should do this exercise 3 times a day for at least 6 weeks.
After 1 ½ years of conscientious training, both in terms of speech therapy and physical and nutritional training, Mr Weste was ready for decannulation, in other words removal of the tracheostomy tube and, in Mr Weste's case, the surgical closure of the tracheostoma. The PEG could also be removed. This was a huge relief for him! Physically, he is now so fit that he can jog 10 kilometres without difficulty.
In the meantime, safe food intake is possible, but eating still takes considerable time and concentration (implementation of learnt swallowing manoeuvres) and is not entirely possible without requiring adjustments in food consistency. In addition, a new obstacle (similar to a fold of skin) has formed in the transition from the pharynx to the oesophagus, which makes swallowing food more difficult and feels like a lump in the throat to Mr Weste. With a new rehabilitation measure in autumn, this is to be investigated in more detail and accompanied therapeutically. Mr Weste is still in occasional contact with "his" speech therapist Birte, even though they no longer have therapy sessions.
Source: 1 Fissler P, Küster OC, Laptinskaya D, Loy LS, von Arnim CAF, Kolassa IT. Jigsaw Puzzling Taps Multiple Cognitive Abilities and Is a Potential Protective Factor for Cognitive Aging. Front Aging Neurosci. 2018 Oct 1;10:299. doi: 10.3389/fnagi.2018.00299. PMID: 30327598; PMCID: PMC6174231.
