I have a condition called "idiopathic progressive subglottic stenosis." I was diagnosed with asthma for eight years, and it wasn't until last year when I had great difficulty breathing that the doctor discovered a "web" of scar tissue growing over my trachea. The scar tissue continues to grow for no apparent reason. I have laser surgery every three to four months (five surgeries so far) to remove it. It keeps growing back. I am frustrated and emotionally weakened by the repetitive surgeries. Is there an alternative?

M.G.

First, some definitions. Idiopathic means "we don't know what causes this." Subglottic refers to that part of the airway that is immediately below the vocal cords. Essentially, the subglottis is the gateway to the trachea (windpipe). Stenosis refers to circumferential narrowing, usually due to scar tissue.

Subglottic stenosis may occur following trauma to the subglottis or as a result of inflammatory conditions (e.g., Wegener's granulomatosis) involving the subglottis. In such cases, there is a known injury to the subglottis, so the adjective "idiopathic" is inaccurate. There has been some speculation that idiopathic subglottic stenosis is due to severe gastroesophageal reflux disease (GERD) or perhaps autoimmune disease, but definitive proof is lacking for both of these theories. It certainly makes sense to investigate these possibilities in every patient with idiopathic subglottic stenosis, since GERD and autoimmune disease are both treatable.

Idiopathic subglottic stenosis is a very uncommon condition. In writing this article, I did a quick Medline search and found that most published studies consist of small groups (12 or fewer) encountered over large blocks of time (10 to 15 years). The condition afflicts women more commonly than men.

This condition is problematic because concentric narrowing of the airway is tantamount to slow suffocation. Something must be done to restore the airway to its normal caliber, but what is the best technique? Laser surgery with or without dilation ("stretching") is certainly the most common approach. It is relatively simple and painless, but has the disadvantage that the results may be temporary -- as in your case.

One can also open the subglottis surgically and sew in grafts of cartilage and mucosa; this procedure is known as laryngotracheal reconstruction. This operation may provide you with lasting relief -- perhaps even permanent relief -- but it is not without risk. As part of this procedure, you would probably also have to have a tracheostomy, an operation in which a passageway is created between the trachea and the skin of the lower neck. You would have to wear a plastic tube in this passageway to hold it open. While the laryngotracheal reconstruction heals, you would (in most cases) be dependent on this tube for an airway. Once the reconstruction has healed, the tracheostomy tube would usually be removed. The passageway would heal in a matter of days.

Severe cases of subglottic stenosis are also treated by tracheostomy. If the stenosis responds poorly to laser excision/dilation, and if the stenosis is severe, then tracheostomy should be considered.

Who is the "best doctor" for this condition? Arguably, the best doctor to treat this problem is a laryngologist. A laryngologist is an ear, nose and throat surgeon who has "super-specialized" in the diagnosis and treatment of diseases of the larynx. If you decide to obtain a second opinion, you can find a laryngologist near you by contacting the American Laryngological Association.