Do you whistle when you breathe? You may have subglottic stenosis.

What is subglottic stenosis?

Subglottic stenosis (SGS) is a narrowing of the trachea, or windpipe, just below the vocal cords. This narrowing can cause shortness of breath, a whistling noise when breathing, cough, and increased mucus production. Causes of subglottic stenosis include autoimmune diseases, being on a ventilator, having breathing tubes in the airway for more than 24 hours or an unknown cause of inflammation called idiopathic subglottic stenosis.

Autoimmune subglottic stenosis

Autoimmune disease can cause inflammation in the subglottis and lungs leading to narrowing.  The most common autoimmune disease of the airway is Granulomatosis with Polyangiitis. An ear, nose and throat or airway specialist can diagnose this disease with a blood test. A rheumatologist can help treat this disease with medications.  

Acquired subglottic stenosis

This is a narrowing of the airway from having a breathing tube in place for >24 hours.  This is typically patients who were in the ICU on a ventilator. Patients develop shortness of breath weeks to months after the breathing tube is removed.  

Idiopathic subglottic stenosis

Idiopathic SGS is a rare condition, affecting 1 in 400,000. The condition is almost exclusive to females and most common in females ages 30 to 60. Specifically, it can happen during pregnancy and perimenopausal due to hormonal changes. The cause of this disease is unknown.

There is an online support group on Facebook called Living with Idiopathic Subglottic Stenosis. They offer a guide for beginners diagnosed with this disease. It is also a wonderful community to connect patients with this rare condition.

Tests & treatments

If your doctor suspects subglottic stenosis, several tests can confirm the diagnosis. 

• Pulmonary function test: Measures the amount of air you inhale or exhale to check for reduced airflow.
• Flexible laryngoscopy: Involves inserting a flexible tube with a tiny camera down the throat to examine the trachea and larynx.
• CT scan: Provides a detailed view of the airway’s structure.

Depending on the severity of SGS, treatment options may include monitoring, steroids or a different surgical intervention.

• In-office steroid injections: Steroids are injected into the scar tissue to keep the tissue from growing and causing shortness of breath.
• Endoscopic dilation:  This outpatient surgery is done through the mouth to remove scar tissue and open the airway. This is not a permanent solution and often requires repeated procedures to keep the airway open.
• The Maddern Procedure: This newer endoscopic procedure removes scar tissue and applies a graft to grow a new lining to the windpipe.
• Open resection: This procedure surgically removes the narrowed section of the airway and reconnects the trachea and larynx.

“Deciding on the best course of treatment can be a challenge,” said Dr. Cindy Moore, an SIU laryngologist who specializes in subglottic stenosis. 

“A patient may prefer an endoscopic procedure. It leaves no mark but often needs to be repeated. An open resection might lead to a more permanent solution but leaves a scar. ‘The Maddern Procedure’ is an exciting development that could lead to long-term success without scarring. Some patients want to stay out of the operating room completely and the in-office steroids injection can help.”

If you suspect that you or a loved one might have subglottic stenosis, contact Dr. Moore for an appointment today.