Subglottic Stenosis - What's the recovery from the surgery like?

[elephant]

I second that, I see her too.

[JanW]

Thanks JDK, I got the answers when I met with Dr. Lebovics on Friday. He says that they swab me with steroids as well as chemo drugs in the throat, and that I'll get steroids and painkkillers via IV. I don't have any drugs to take once I'm out though (other than my WG drugs, of course). I'm waiting to her from his secretary -- looking forward to getting this over and done with.

[Sangye]

Jan, why do they swab you with chemo drugs?

BTW, for a non-medical professional, you're doing an amazing job at educating yourself on Wegs and getting detailed explanations from your docs.

[JanW]

Thanks, Sangye!

Actually my husband takes the notes! We've got it all in a notebook. They give you chemo drugs to retard the growth of the cells that will form scar tissue (of course they can't say it won't grow back, and in Weggies it frequently does). They administer steroids to minimize swelling. You get steroids in your IV, but the chemo drug (mitomycin) is only used topically. They make radial cuts at the "points of maximum tension" so that the scar tissue "springs back" like a rubber band and makes the opening immediately bigger. Then they insert a balloon (regular surgical balloon) to hold it open for as long as you are at 100 percent pulse/ox (so could be as long as a couple of minutes). At that point, you aren't breathing. They go through the mouth and he said it's 20 minutes of "hard surgery" -- lots of things have to happen in that 20 minutes. He also said that now he does SS surgeries that go past the third tracheal ring with a chest surgeon (trachea is really in the chest surgeon's specialty), because he feels that this has an overall better result, and it's becoming his new standard of care. I have scarring up to the second tracheal ring, so he considers this primarily a throat, not chest, surgery. You leave the next morning. He also said that some docs administer as much as 12 times the chemo treatment as he does to the area, but he isn't convinced from his reading that this isn't overtreatment with little benefit (scar tissue can still grow back) and possible risk.

[Sangye]

Wow, thanks for the detailed description. The part about not breathing elicited a panic response from me. I was on oxygen for 19 months when I first got diagnosed, and the fear of not being able to breathe was tremendous.

[elephant]

I remember taking care of patients on a medical floor and thinking to myself, " I hope that never happens to me"...Just being short of breath brings so much anxiety! Many of my patients on oxygen sat in there beds and drank coffee and waited for their next breathing treatment. I saw the anxiety in their eye's and I can relate!

[jola57]

I think this is one of the scariest descriptions of what can happen to us I have read so far. I have filed it away in the recesses of my mind so that I never have to remember it again.