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

  1. #11
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    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.

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    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.

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    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.

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    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.

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    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!

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    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.
    Jolanta

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    Jola medicine's have come a long way as you know, and that was back in the early "90's". Many of those patients had COPD, not well controlled. That's why I'm a nagger.....
    Sorry, I hope you slept ok.

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    I'm not sure, but didn't she mean the SS surgery?

    I've spent a lot of time in the hospital gasping for breath. Sometimes breathing treatments helped, but if the lungs are filled with clots and/or hemorrhaging blood, you're just stuck gasping. Breathing treatments made me tremble and my heart race. I couldn't stand them, even when they helped me breathe. It was big price to pay for a little bit of air.

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    The SS surgery does sound scary, but I had been misdiagnosed with asthma since 2005, have been to the ER a couple of times and gotten on the breathing treatments--not a big deal. I'm probably basically always a little short of breath but have completely compensated for it. As my doc says, you stop doing things like running up the stairs, running for the bus, walking and talking a lot at the same time -- and that's been true for me. I can honestly say that the way that I have been living for the last five years doesn't scare me...what scares me is the possibility of ending up trached -- and there are several people on these boards whom that has happened to. When I first learned I had a SS I read about all of these horrible surgeries where they would put stents in and the granulomas would grow over them, or people would end up with so much scar tissue that lifelong trachs become inevitable. I even read about surgeries where you would have to stay in the hospital for several days, sitting up with your neck stitched in a certain position (I think it was down to your chest), to let everything heal. Nightmarish! Now I have a 20 minute surgery, eat soft food later in the day, and go home one day later with a little sore throat and hoarseness, not so bad!

    I think that this is why the doc says that it's not unusual for patients to break down in hysterics in recovery. At that point your airway is more tha 85 percent better when you went in, and it makes you realize how "scary" it was before. If my airway gets smaller it will be "incompatible with life" as he says, which is why we won't wait for remission of WG to fix it. As long as I am medically cleared and stable (which I will be -- I'm in generally good health except for this damned disease) it's going to happen soon.

    Most of you have been through far scarier and challenging things with this disease than I have, I think!

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    Jan what your going through is tough. So I'm gald this is all you have to deal with for now. You will do great, you really have it together!

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