Debunking the myths about ISGS
There are so many theories about SGS and its causes and effects. Sometimes inexperienced doctors are the ones telling you this. Let us nip them in the bud:
“SGS is caused by reflux” - No. Your SGS is NOT caused by reflux. Think about it. About 60% of the world’s population has reflux – males as much as females – and yet SGS only (well 98% of the time) affects women. Reflux is not the cause. It could be an irritant, however. If you think this is the case, talk to your doctor about being referred for further evaluation. A variety of diagnostic tests are available (e.g. esophageal pH probe testing, esophageal impedance testing, esophageal manometry, pharyngeal probe testing – called ResTech, pharyngeal pepsin assay, esophageal endoscopy, etc), depending on where you live. Don’t just take reflux medication ‘just in case’ – it causes its own issues such as brittle bones, kidney issues and more (and we really do not need any more health problems, do we?!). There is evidence acid reflux may slow or prevent adequate healing after endoscopic or open procedures, so it is important to diagnose and treat reflux in this situation.
“People with SGS have more mucus than ‘normal people’” - the fact is we generally have the same amount of mucus as everyone else. The difference is that the cilia (little hairs in our trachea) which normally move the mucus up and down our airway with ease have been interrupted by the scarring. This means we must cough it past the scar. Sometimes mucus can build up and thicken behind the scar and form a mucus plug. This can be quite scary as it can block your narrow airway until you cough it out. Check out our tips to help avoid this, and ensure you have regular dilations or steroid injections to avoid the potential of a plug you cannot shift. If you have chronic inflammation present you may also have more mucus than normal – reducing inflammation (eg through diet) should also help reduce excess mucus.
“I cannot exercise because I have SGS” - Many of us make ourselves continue to exercise despite SGS. You should not stop exercising – rather it will be beneficial if you keep as fit as possible. So, what if you cough a little and sound like Darth Vader? The fitter you are, the better you will be able to cope with this disease.
Many people with this condition run, walk, swim, or go to the gym several times a week despite a narrow airway – just pick activities which are lower impact. We are superwomen (and rare supermen) – our bodies CAN cope with exercise.
There are plenty of alternatives out there if you look – these days you can get electric bikes which give you some exercise while helping you on the hills, try kayaking with a friend or your significant other in a double so they can help when you run out of steam…just don’t give up moving because of SGS.
We suggest you start exercising as soon as you are breathing well after a dilation and keep going as long as you can. Just do what you can within your limits and any other conditions you have.
“I am overweight because of SGS” - a again, most of the time this is an excuse. Most of us are overweight because we eat too much of the wrong type of food. Again, this is terrible for your overall health – you are putting stress on all your organs, and your SGS is not helping. Work hard to reduce weight naturally – cut back on sugar and processed foods and replace with fresh vegetables.
Body Mass Index (BMI) helps us to understand the general health of people by looking at their weight versus their age, gender, and height. This is important to look at because obesity has a negative impact on health overall*. Obesity is associated with hypertension, dyslipidaemia, ischaemic heart disease, diabetes mellitus, osteoarthritis, liver disease, and asthma. Obstructive sleep apnoea (OSA) is a common problem in the morbidly obese.
When coupled with a chronic disease such as idiopathic subglottic stenosis, risks are increased further. Every time an obese patient goes under an anaesthetic, they are at increased risk of airway collapse – especially if they have had symptoms of sleep apnoea or snoring.
One in three (34%) SGS patients is obese.
**National Institutes of Health. National Heart, Lung, and Blood Institute. Clinical guidelines on the identification,
evaluation, and treatment of overweight and obesity in adults—The evidence report. Obes Res 6(Suppl 2):51S–209S. 1998.
Anaesthesia and morbid obesity - Sharmeen Lotia, MBBS MRCP FRCA Mark C. Bellamy, MBBS MA FRCA Continuing
Education in Anaesthesia Critical Care & Pain, Volume 8, Issue 5, 1 October 2008, Pages 151–156
Recent research[1] has also found that SGS patients with obesity (particularly with a BMI of between 30.0 and 34.9) are likely to see their stenosis reoccur much faster after a dilation than those patients of healthy weight or underweight. Another good reason to consider reducing your weight.
[1] Evaluating the Association of Clinical Factors With Symptomatic Recurrence of Idiopathic Subglottic Stenosis May 2019
JAMA Otolaryngology - Head and Neck Surgery 145(6) DOI: 10.1001/jamaoto.2019.0707
If you need to calculate your BMI you can use this calculator – you will need your weight, height, age, gender, and an idea of your activity levels - https://www.nhs.uk/live-well/healthy-weight/bmi- calculator/
"ISGS wird durch eine Schwangerschaft oder die Einnahme von Hormonen verursacht" - this cannot be totally debunked but given that around one in five patients with SGS has never been pregnant, that suggests it is not the only reason. One in ten SGS patients has never taken any hormones (e.g. the pill). We also have males diagnosed with SGS who have not been on the pill or pregnant.
“SGS is caused by being pregnant or taking hormones” - in Maßen sind Alkohol und Koffein in Ordnung. Wir empfehlen Ihnen, jeden Alkohol- oder Koffeinkonsum mit viel Wasser auszugleichen - Dehydrierung ist ein echtes Problem bei ISGS und kann zu lebensbedrohlichen Komplikationen wie Schleimpfropfen führen. Wenn Sie andere Medikamente nehmen oder gesundheitliche Probleme haben, die den Verzicht auf diese Substanzen erfordern, sollten Sie natürlich immer auf den Rat Ihres Arztes hören.
“Having major surgery (e.g. resection, Maddern) will cure me of SGS” - Unfortunately, there is no cure to SGS at present. At best, major surgery may put your symptoms into remission, possibly for 10 or more years. You will always live with the diagnosis of subglottic stenosis, and there is a chance it will come back. Your likelihood of achieving a longer time without regrowth is directly correlated to the experience of the medical centre and team performing your surgery – the more experienced the centre, the longer your airway is likely to be stenosis free.
“I don’t need to have blood tests for ANCA, ANA etc because I tested negative in the past” - doctors recommend you have these tests annually even if you have tested negative – ideally when you have noticed your scar growing back or around the time of a dilation. The result can change even after many years. You can usually organise blood tests from your GP/primary health care practitioner.
“Your oxygen levels will be low with subglottic stenosis” - while a difficulty breathing might suggest oxygen would be low, for most airway stenosis patients oxygen is not an issue. Our bodies are simply amazing, becoming very efficient at extracting the right amount of oxygen for survival, despite the narrow airway. If you are experiencing low O2 levels, there may be another health condition at play that needs investigating.