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

  1. #71
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    I use pure sea salt with no additives such as iodine or pure coarse salt with no additives. The latter is the cheapest and can be found in most grocery stores. I have been using both for over 7 years now.

  2. #72
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    Hi Everyone Well I had my broncoscopy and dialation done on Tuesday and was a little tricky as there for some reason this time alot of swelling immediatily following. Freaked out the anestegiolists (although they were prepared but did not think any problems would arise). Had to have 2 does of emenephyrin sp? (adrenelin) and had to stay admited overnight. Swelling started reducing overnight withmany anti-inflammorties etc. Thoracic doc , other this this problem, was happy with outcome. Was able to dialate the treachael stenosis to 6 1/2 which is the largest he has been ever able to do. It had shrunk back quite a bit but he was really happy with the pliability?? and ability to stretch well. The two bronchi areas harder to get at but was also able to stretch them somewhat. I stared yesterday on another 12 week protocol of IV cytoxan with mesna and increased prednisone to 20mg ( I am hopeing to decrease that as quickly as I can) and hopefully this round will be able to kick it in the butt totally and I am set up for Cellcept in Jan. for maintenance. Thoracic doc will keep monitoring airways, although this last dialation little problematic but as long as they are aware I am sure I am in good hands. We have decided on the cytoxan treatment for another 12 weeks, already dd 12 weeks but did not feel that the disease was under control enough and maintenance drug not strong enough for this time. Nasals are still very crusted and hoping the cytoxan and increase in pred will help soon. Stomache issues settling down a bit on meds for that and have been eating minimally.

    I am going to be on 20 mg of pred and 1000 mg IV ctyoxan every two and a half weeks. I have been reading about stomache protectors and I am on currently 40 mg Pantoprazole Magnesium once daily and domperidone Maleate 10mg before each meal. Is that sound correct to all you out there that are the experts!!

    Take Care everyone and Happy Thanksgiving to all you Canadians on board. I know us Americans are not until next month and not sure when the Europeaon Thanksgiving is! But Happy Thanksgiving when your time comes to all of you! Cathy

  3. #73
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    Glad you were able to dilate well, how is the breathing? Happy thanksgiving, enjoy yourself!

  4. #74
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    It is getting better but I still have some swelling to go down so still wheezy and stridorish and quite a soar throat but is slowly feeling better and once the swelling goes right down and the meds starting kicking in I hope to be able to climb stairs and vacuum again without huffing and puffing.

  5. #75
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    Take an easy, when I had my lung surgery ...it was pretty difficult to even breath, but I walked slow and easy. You will soon enough be able to vacuum and break dance!

  6. #76
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    Glad it went well, Catherine. The 40mg pantoprazole is a standard dose to take with pred. Very happy you're on it.

  7. #77
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    Happy it went OK, just take it easy now.
    Jolanta

  8. #78
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    Digging up an old thread! I knew I'd seen subglottic stenosis (SGS) mentioned before. I was dx'ed with it several days ago. More of the gift that keeps on giving -- wegs. Its one of the issues that's been causing my shortness of breath, but "more research is needed".

    I read up on the condition and it is more rare than wegs. The incidence of SGS in the general population is 1:200,000, whereas the incidence of wegs is just 1:30,000. What's interesting is that most instances of SGS occur in wegs people. Wegs is one of the major causes of the condition. I guess the rareness of SGS would explain why I wasn't dx'ed even after seeing 4 pulmonologists, even though, they all knew I had wegs. I see yet another pulmonologist later this month.

    One pulmonologist has said I should let anyone operate on my trechea under any circumstances, but the ENT that dx'ed and took some nice pictures of it (I'll try to get copies to post here) said he could do the surgery in 5 minutes in his office. Thanks but no thanks.... After reading Jan's comments I'll probably get more medical opinions, particularly with my GH condition.

    I'll have to do something sooner than later, though. It's getting harder to swallow. One pill in particular gets stuck -- not because its too big, but because it starts to dissolve almost immediately and it gets too rough. Eating is getting a little more difficult since i can't get enough air in between bites, so eating is now a slower process. i hadn't noticed how much slower until I went out to eat with friends the other day and I was way behind them at the finish line. Wheezing is now routine, so I know its getting worse. Ya just gotta love it! :-)

  9. #79
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    Quote Originally Posted by vdub View Post
    I knew I'd seen subglottic stenosis (SGS) mentioned before. I was dx'ed with it several days ago. More of the gift that keeps on giving -- wegs. Its one of the issues that's been causing my shortness of breath, but "more research is needed".
    "Damn that sucks"...

    vdub, when was the last time you went to a doctor without getting a new diagnosis?

  10. #80
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    when was the last time you went to a doctor without getting a new diagnosis?
    Hmmmm.... actually, I think that should be "another diagnosis" vice "a new diagnosis". A "new diagnosis" would imply different than what I already have. I sure wish that was the case instead of more just being added on. But, to answer your question, a long time. Its becoming a bit of a bother. More seems to be going wrong at a faster pace. I don't know what will become of this, but probably not good.

    Spring will be here soon and I had hoped to do a lot of work on our cabin in the mountains. I still think I can do the work, but I have to get a little more inventive on how to do it with less effort and it will probably go at a slower rate than I would like. I'm not even sure I can start a chain saw much less operate one for any length of time. It will be difficult.

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