subglottic stenosis and dialation

[mama2005]

Went to my wegs doctor today and I was diagnosised with a subglottic stenosis last year in November well my wezzing and my shortness of breath has continued to become worse so I brought this up with my doctor and he was concerned so he sent me on up to see the ENT. The ENT did a scope and says I am still at 50% closed or 50% open which ever way you want to look at it and that he doesnt want to do anything. My problem is I cant breathe after going up and down steps I start coughing and have trouble cathcing my breath. the only advice he had for mr was to loose weight and it wont be as bad. I am overweight but not by much and with all the pred I only gained 6lbs I felt that was good (Ugh). I have two kids I want to be able to play with them my daughter played soccer this year I would love to be able to help her and play with her but trying to run seems immposible. when do they actually do anything about the subglottic stenosis? any advice will help me thanks.

[JanW]

Mama --I was at about 2 mm -- normal is around 9 mm -- when I was diagnosed. I had surgery and am now at a 6.5 mm. Problem with SS is that it doesn't get better, only worse, and it can get worse rapidly. I would advise a consult with my doctor, Robert Levobics. who I know is treating at least one other person here, who went to him with a trach already in place (and honestly, she was probably about where you were and the doc told her this is what she needed). I believe that after a series of operations (and she comes in from out of town) she is now trach-less. His number is 212 262-4444. I don't know what he can do over the phone, since I'm local, but he's pretty much considered the foremost expert in this and saddle noses (which often go hand in hand as you know).