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  1. #1
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    Default Trach

    Has anyone had to have a trach put in due the the subglottal or tracheal stenosis? I had a dilation done 2 wks ago and have to have ER dilation done over the weekend. 2 weeks seems like a VERY short period of time between surgeries! Any help would be appreciated

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    Sorry I can't help you ,I (knock on wood ) have never had those problems, but I feel bad you are having to go though that . I am sure someone will tune in and maybe give you some answers. Good Luck
    Life isn't about how you survive the storm, but how to dance in the rain !

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    I do still have a trach from the subglottic stenosis. Never had any dilations done was rushed into emergency surgery with a totally obstructed airway in April 2012 and had the trach since then. After that I was diagnosed with the disease.
    I'm happy to answer any questions you might have.

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    I was diagnosed with TS 2 years after I was diagnosed with WG's in 1999. My ENT specialist has a gage system. Something that he an I do to determine what level of breathing I am at. 9 being wide open and no breathing issues and 1 being I am about to suffocate. The first years 02-2009 we kept a very close eye on what number i was. Usually we would wait until it became a level 5 or 6 before we booked a dilatation. During all this time the option was there to have a trachiodomy done. It would be temporary however. I would not need to have it for a long period of time. Maximum 8 weeks. The procedure would be to scrape out all the scare tissue and then allow for healing time.

    I've chosen not to have this procedure. Call me vain but I was at an age where my appearance really mattered to me. I got married in 2010 to later find out that the man I married was a closet abuser. I became very depressed and wound up taking up smoking to be spiteful towards him. He hated smokers and said he could never be with someone who smoked. So I started! I was booked in for my 67th tracheal dilatation 4 weeks from the day I started smoking. When I went for my pre checkup I was told by my ENT specialist that I had gone from a level 6 to 9. It's now 2014 and I have not had another dilatation since 2010. I am still at a level 9. I'm not sure why I felt I needed to tell this story as I'm not trying to suggest you take up smoking... but it's what worked for me. Weird I know... but it does. I only smoke a few cigarettes a day just enough to keep it at bay.

    Even my ENT specialist says he agrees that the smoking is what caused the TS to stay away.

    Mindy♡
    Using Tapatalk

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    Very interesting indeed. So you have had 66 dilations to your trachea? All with a knife?
    Phil Berggren, dx 2003

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    Hello amann8506,a great deal of swelling can occur after dilation .The aggressiveness at which reocclusion of the subglottic stenosis happens,varies from patient to patient.I have heard of people having dilation done every 6 to 8 weeks.The ENT docs at the hospital I go to,and the ENT doc I meet with at the Mayo Clinic years ago like to be conservative with the number of surgeries performed on the subglottic stenosis.I have had a trach tube since 1988,and have had no more than 20 surgeries performed on this area.Please,do not let my story scare you.As I said it varies from patient to patient.
    "You can tame anything,except the human tongue"

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    That is an interesting story Mindy. And I am not surprised by it. I learned of a remedy many years ago that used tabacco for shrinking tissue. Ok, my story is a bit gross maybe but I can say that I know several people over the years that have used this tabacco based remedy and it works. Cayce Hemorrhoid Remedy Taps Unexpected Source Edgar Cayce A.R.E. Blog

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    Quote Originally Posted by me2 View Post
    That is an interesting story Mindy. And I am not surprised by it. I learned of a remedy many years ago that used tabacco for shrinking tissue. Ok, my story is a bit gross maybe but I can say that I know several people over the years that have used this tabacco based remedy and it works. Cayce Hemorrhoid Remedy Taps Unexpected Source Edgar Cayce A.R.E. Blog
    Interesting, Kirk. There could be something medicinal in tobacco without it having to be smoked. Maybe other ways to apply or ingest it besides on hemorrhoids? Sounds worth investigating more. The tobacco companies could save some face by offering something that helps us after selling us a deadly product for so many years. Whether they could make enough money at it to satisfy them would remain to be seen.
    Anne, dx'ed April 2011

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    Has anyone tried inhaling essential oils in addition to other prednisone et al?


    Sent from my iPhone using Tapatalk

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    Quote Originally Posted by Tess View Post
    Has anyone tried inhaling essential oils in addition to other prednisone et al?


    Sent from my iPhone using Tapatalk
    I don't have tracheal stenosis, that I know of, but there have been times when I had trouble coughing stuff up out of there, and breathing issues, at least some of which were asthma. I did get relief from inhaling steam over a bowl of hot water, with a towel over my head, and I added dry peppermint leaves or other herbs to the hot water. Essential oils could be added here, too, and I probably did that a couple of times, when I had them on hand. Steam from plain water is harsh so it is best to add something to it, even just salt. But the peppermint was soothing and pleasant, and it did open up my breathing and coughing in the bronchial/tracheal area, as well as loosen up the nasal/sinus area so stuff could more easily be irrigated out of there. I have my doubts whether just inhaling an essential oil out of the bottle would do much, but then I haven't tried it. Maybe if it was heated up or used in a personal infuser such as that made by Vicks. Also, finally getting my doc to prescribe inhalers, one albuterol and one of the steroid fluticasone, has helped me a lot with my breathing and coughing. He thought they were just for asthma, and that I didn't have it, but I found them to help with any sort of inflammation that causes breathing and coughing problems. If I stop them, it gets worse again. I might even have a bit of TS, though no one thinks I do or has bothered to find out. In any case, good luck, and I hope you get some relief.
    Anne, dx'ed April 2011

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