How many subglottic stenosis surgeries?

[scottgirl21]

I was just curious for everyone on here, how many subglottic stenosis surgeries have you gotten? I have my first one in 2015 second in 2017. I don’t have symptoms of any breathing difficulty but I had a surgery (not related to wegs) a week ago and the anesthesiologist said that she had to use a different tube smaller than a normal person due to my airway. I thought I was in the clear because haven’t had issues in some time. I’ve been stable on Rituxan for multiple years from my rheumy. I guess I’m just wondering if I get another, when will it end or will it ever end? Do you just have to get them all the time?

Thanks so much for the help

[drz]

I was just curious for everyone on here, how many subglottic stenosis surgeries have you gotten? I have my first one in 2015 second in 2017. I don’t have symptoms of any breathing difficulty but I had a surgery (not related to wegs) a week ago and the anesthesiologist said that she had to use a different tube smaller than a normal person due to my airway. I thought I was in the clear because haven’t had issues in some time. I’ve been stable on Rituxan for multiple years from my rheumy. I guess I’m just wondering if I get another, when will it end or will it ever end? Do you just have to get them all the time?

Thanks so much for the help

Sorry to hear about you having this recurrent difficulty since it can be a great source of anxiety when you worry about being able to swallow and breathe. I have been evaluated for stenosis several times but it always turned out that my throat was inflamed because of backup from my GERD and all I needed to do was increase my GERD medicine.

[me2]

I read somewhere that the average number of dilations for stenosis is about 3 . I'm not sure how they came up with this number or who it applies to but as luck would have it that IS the number of them I myself have had over a number of years and I seem quite stable for many years now with a very open airway.

Usually Mitomycin C is used topically with the dilation to prevent further scarring and I have wondered if it might end up also reducing the recurrence of stenosis perhaps when it gets repeatedly applied?
Each time I had the procedure I definitely had symptoms of breathing difficulty prior to getting it.

[Gram24]

My 23 y/o granddaughter has had a surgery every 6 months for the last three years. She has had 3 injections of prednisone directly to the area . No improvement. now they are suggesting surgery options., two of which will require her to be on a ventilator for a week. the third option would be a total larynx replacement. Has anyone had this type of surgery? It’s a huge decision for a young person.
Gram24