Summary
What is subglottic stenosis?
It is a narrowing of the airways caused by the formation of scar tissue just below the vocal cords. It is rare, diagnosed in only two in a million people per year. However, since Covid-19, the number of people treated with intubation is increasing.
Why am I sick?
There are a few possible causes, including damage from previous intubation (such as during a previous surgery), damage from inhaling chemicals or heat, an autoimmune disease (such as GPA or lupus). Idiopathic literally means "cause unknown." Your doctor should evaluate all possibilities, as treatment differs slightly depending on what is known.
Is the disease life-threatening?
Yes, it needs to be taken seriously. Your biggest risk is a mucus plug blocking your airway while you're having an attack. You should make sure your doctor's office is aware of this and prioritizes your appointments if necessary. Share this information with family and coworkers who can save your life if your airway is blocked.
How is it treated?
First, you will probably have a dilation procedure. This is usually an outpatient procedure where the doctor operates through your mouth to open the scar. You will be able to breathe well either immediately or within a day. You may have a sore throat and your chest and shoulders may feel a little stiff for a few days. Patients usually go home the same day and can return to work after 2 to 3 days. Other treatment options include steroid injections (in your doctor's office) or major surgery such as resection or the Maddern procedure. Please make sure you are comfortable with your doctor's experience and expertise before deciding on any treatment. You must be the advocate for your own respiratory health.
What can I do to protect my airways?
A nebulizer or inhaler (which is a device that delivers moist air into the airways) is essential - you can use it with saline solution to moisten your airways and loosen mucus and prevent mucus plugs. Most people prefer a quiet, portable device, which can be purchased from a pharmacy or online.
A peak flow meter is an inexpensive and easy way to monitor your breathing at home, without a doctor's appointment and the uncomfortable endoscope (a camera that looks through your nose at your airway). There are several apps that can record your readings, so you can learn more about your airway - what it's like when you're breathing well, and when it's best to contact your doctor.
Staying hydrated and eating a healthy diet that minimizes sugar and processed foods. Eating an anti-inflammatory diet. Exercising as much as possible and maintaining a healthy weight will all help you manage the symptoms of this rare disease.
It is recommended to get vaccinated against influenza, pneumococcus and Covid-19. This will help prevent additional complications that can be life-threatening when associated with subglottic stenosis.