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I Have Idiopathic Subglottic Tracheal Stenosis

A Idiopathic Subglottic Tracheal Stenosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Idiopathic Subglottic Tracheal Stenosis. You're not alone. 69 People

    Resection Journey

    Hi Everyone, It’s a little over a week until my resection so I thought I would start a blog of my experiences. http://livingwithsubglotticstenosis.wordpress.com/
    kesselt kesselt 31-35 Oct 25, 2012

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    Don't Eat Guinea Pig In Peru!

    As the title implies, my Subglottic Tracheal Stenosis all started around 3 years ago in Cusco Peru. We had a wonderful hike around Machu Picchu and even hiked to the top of Hyanu Picchu. That's the tall mountain in the background you always see in the postcards! I was 50, 6'4...
    BruceRTL BruceRTL 51-55 3 Responses Aug 22, 2011

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    Trachea Stenosis Is Back Again

    I was diagnosed with this in 2000 and after repeated conservative surgery I had a trachea resection in March of 2004. I have been feeling great since recently when my symptoms have come back. I am scared about what this means for me now. I can't go through. Surgery again.
    lastcall55 lastcall55 36-40 1 Response Apr 1, 2012

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    Over 35 Tracheal Dilations And Still Going Strong!

    In 1994, I began having trouble breathing. I would get out of breath taking a walk along my kids' soccer field. My GP sent me to a pulmonologist who thought I had asthma. Prescribed asthma meds but after a few months realized they were not working. Had a bronchoscopy during...
    busylady344 busylady344 51-55, F 2 Responses Oct 26, 2012

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    Living With Idiopathic Subglottic Stenosis

    Almost 4 years ago I was diagnosed with Idiopathic Subglottic Stenosis.  I am looking at facing my 8th dilatation and wondering if it will ever get better.  The experience of diagnosing it  is very similiar to other peoples experiences.  They thought I had acid reflux (which...
    Losgunna Losgunna 36-40, F 22 Responses Sep 3, 2011

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    I was diagnosed in 2007

    and last week I had my 5th balloon dilation. I've been told that this treatment option is the best for me at this point, but I'm getting more and more frustrated. The time between dilations this last time was one year which is less than the previous times and this is the...
    Jen53669 Jen53669 41-45, F Jan 15, 2014

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    Idiopathic Subglottic Stenosis

    I have just been told that I have Idiopathic Subglottic Stenosis. I have been having trouble breathing for 3-4 yrs now and have gone back and forth to many Doctors with no answers. Then I was told to get a CT Scan and it showed a blockage, so I went to an ENT Specialist. This Dr...
    sue1576 sue1576 36-40 5 Responses Oct 18, 2012

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    Subglottic Stenosis Stinks! :)

    I got diagnosed with subglottic stenosis exactly one year ago...when I was 5 weeks pregnant. I will have my fifth dilation next Tuesday. The doctors all agree that reconstructing my trachea is the only "cure," but that terrifies me. My daughters are so little, and I want to be...
    HolyZapato HolyZapato 41-45, F 2 Responses Aug 14, 2013

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    My Subglottic Stenosis ( By Fay In Australia)

    Me Thank you for your reports on your subglottic stenosis. It is good to at last hear of someone else with the condition. For 2 years doctors said "Harsh nasal breathing " Friends thought I had asthma & asked why I was not using my puffer. By the time I was too breathless to...
    fayw fayw 70+, F 1 Response Jul 17, 2013

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    Never Ending Road

    I was diagnosed in 1997 just after my 40th birthday. I am also asthmatic, so the doctors kept treating me for asthma until my breathing became so labored that I went to see a specialist in San Antonio. He immediately put me in ICU and performed a tracheostomy the following...
    BB211 BB211 56-60, F 1 Response Jan 1, 2013

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    I was diagnosed in July 2013

    after several years of being misdiagnosed. I was actually at the point of passing out during a workout when my niece who is a respiratory therapist suggested I see an ENT. I quickly made the appt. as it had become increasingly harder to breathe just walking across the room...
    kmcdhl65 kmcdhl65 46-50 2 Responses Jan 9, 2014

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    I've had ISS for more

    than 12 years. Till now I haven't had any surgery and tried only a conservative treatment. I wonder if there is anyone with ISS like me. In summer 2002 I had a very severe cool with a sore throat and after it became difficult to breathe when running, coming up stairs and etc...
    Katrinushka Katrinushka 36-40, F Mar 12

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    I have been diagnosed

    since September 2013. Had my first laser and ballon dilation November 2013. I have an appointment for a scope next week April 2014 to see how much it had come back I know it has returned somewhat bit it will be interesting to see how much.
    JMSittler JMSittler 56-60, F 2 Responses Apr 24, 2014

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    Help Needed To Prevent Intubation Related Subglottic Stenosis (SGS).

    To the members of the subglottic stenosis support group: The 2 known causes of subglottic stenosis are high endotracheal tube cuff pressure and use of endotracheal tubes that are too large. High cuff pressure is a result of manual over-inflation of the pilot balloon. Currently...
    loveyourtrachea1 loveyourtrachea1 56-60, F Oct 5, 2013

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    I've had it for 25 years,

    since birth because of an intubation error. My voice is largely affected and it has an impact on my social interactions. I love my voice but people are so insensitive and say very cruel things. I want to find more people like me in nyc so I don't feel like the oddball 😩
    LittleNicole89 LittleNicole89 26-30 1 Response Apr 6, 2014

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    Huh??

     what the heck is that?
    Beauphord Beauphord 46-50, M 9 Responses May 21, 2009

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    Mystery For 6 Years

    I have been diagnosed with Idiopathic subglottic stenosis. Over the past 6 years I have had multiple balloon dilations the last one included a laser. I have seen the pulmonary specialist, the allergist and asthma doctor and 4 different ENT's. The first would not do anything...
    fosterapup fosterapup 46-50, F 1 Response Aug 18, 2013

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    Recently Diagnosed With Subglottic Tracheal Stenosis

    I have been recently diagnosed with Subglottic Tracheal Stenosis and am awaiting laser surgery and dilation within a week. I was diagnosed with asthma aproximately 20 years ago, and have used all kinds of asthma meds and steroids since then, but now realize that it probably was...
    niter13 niter13 56-60 2 Responses Apr 10, 2013

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    Wanting To Know Why

    I was diagnosed with ISS this July and the doctors have no idea why this happened. I had my first dilation and it was very successful. I had no idea that this would recur. I want to know what is causing it. Because it is so rare, doctors don't have many cases to compare. I think...
    SlpSuzanne SlpSuzanne 41-45, F 5 Responses Sep 17, 2013

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    Related Experiences

    I have congenital cervical stenosis (more about lumbar spine later) with severe degenerative disc disease. Saw a Neurosurgeon Monday and he says I need surgery. Problem is, I have...
    VixBux VixBux 56-60, F 1 Response Mar 31

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    I have been told I have small fiber nerve damage but we cannot find the cause. I'm being told it is idiopathic. How can that be? I have been given meds to try and mask the pain and...
    tmd1982 tmd1982 31-35, F 1 Response Apr 10

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    Hello my fellow EP members.I would like to share a personal experience that recently happen to me.I recently have been going threw some personal issues with my Family.I have been...
    Fruitypunch15 Fruitypunch15 31-35 18 hrs ago

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    REAL TALK POWER'S OF ENERGY GREETINGS!.. Its Me Icey! The Energy Manipulator, How are you all?.. Me? Im Well Thanks..And I've Got so much Stuff to talk to ya'll about! Its not...
    icey1 icey1 22-25, M 17 hrs ago

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    "Booksmart" "You don't use your brain" "Do not make decisions on your own anymore, ask me before you do anything" "F*** U" "Stupid" "Lazy" And that's not even half of it. I can...
    DearYou DearYou 22-25, F 1 Response 8 hrs ago

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    I have been thinking about how many friends I have lately because well, I've been attending a few weddings and realized that if I were to get married, I would not have a full line...
    disastercupcake disastercupcake 26-30, F 1 Response 7 hrs ago

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    I don't know why a part of me feels broken often times. As if I was empty. I manage to be good, to be kind, gentle and loving all the time but those things I do couldn't satisfy me...
    diane1996 diane1996 18-21, F 6 Responses 20 hrs ago

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    Have any of you fully Gained your trust back up ? Is it truly worth working out ? I have read where some marriages are stronger after the apocalypse , how fu..ing long does it...
    jocu123 jocu123 31-35, M 4 Responses 17 hrs ago

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    I have some good online friends, but no real life friends. My family rejects me and ignores me. I have a partner, but even he isn't as much "there" as he used to be. On the up side...
    UnwantedPup UnwantedPup 31-35, T 7 hrs ago

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    It's not everyday. It's not all the time. But I have it. And they gave me medicine for it. But I stopped taking it a long time ago because I wanted to see if I could feel better...
    Allforaview Allforaview 18-21, F 6 hrs ago

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    I have to go to my grandmas for dinner tomorrow and I haven't seen this grandma since thanksgiving I haven't ate in a long time and I've been really dizzy and haven't felt well I...
    butterflybaby123 butterflybaby123 13-15 6 hrs ago

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    Life's hard when I'm away from the one I love because of school life abroad, I made someone I love upset and even cried without even noticed that, I know it's hard since we have...
    Mizter18k Mizter18k 22-25, M 6 hrs ago

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    I actually have two. This is about the younger of the two, Caleb who is 16…. This morning Caleb caught me looking at him and smiling. He got very self conscious like teen boys...
    ag00dwife ag00dwife 22-25, F 6 hrs ago

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    My 18 year old stepdaughter Kayleigh is a great girl with a big heart and I want so much to have a good relationship with her but it is a bit hard. I have only been married her her...
    ag00dwife ag00dwife 22-25, F 1 Response 5 hrs ago

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    I have been gaining weight over the past few years and eat and drink what I like. I have noticed that my family is starting to get fatter as well. Probably our portion sizes and...
    Jackincontinent Jackincontinent 46-50, M 5 hrs ago

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    My granddaughters don't accept me because of it . They wouldn't permit me to come to the wedding with an interpreter for my profound deafness. I don't like them any more. I'm not...
    MargaretCallinan MargaretCallinan 70+, F 2 Responses 23 hrs ago

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    I have a crush on a it on Tinder... Idk if he only wants sex but we talk sexy all the time which I love. he's so cute and can turn me on like THAT haha We also talk about our lives...
    WhatChrisDid4Love WhatChrisDid4Love 18-21, M 22 hrs ago

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    Yup and I never had one. Ever. I used to have girls that are friends but they didn't last long and I was too dense to notice that they probably liked me. I just didn't bother to...
    Xemplefied Xemplefied 26-30, M 1 Response 22 hrs ago

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    My ex was very mentally abusive to me. he had at one point hit me and my friends and family made me break up with him. I now see that it wasn't okay but I'm still in love with the...
    CopenhagenAngel427 CopenhagenAngel427 18-21, F 4 Responses 22 hrs ago

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    I met a man not too long ago. He's genuine and sincere. He actually cares about my feelings and has an incredible way of understanding everything. There are people you meet in life...
    hadyourchance hadyourchance 36-40, F 12 Responses 22 hrs ago

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    It was really weird, me and him were falling and there was a small gap that only one of us could fit in so he pushed me into the gap while he fell through a wooden floor... But it...
    philex2014 philex2014 13-15, F 21 hrs ago

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    It's interesting how I found this website: I googled "introverts anonymous" on a whim. I was actually thinking more along the lines of a sort of chatroom where I could Interact...
    sailman306 sailman306 22-25, M 21 hrs ago

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    My mother has this rude joke she makes if I don't show her something i am doing when she asks, I'm looking at "****" and "willies" and goes and tells my stepfather. She tells him...
    1lonelydaisy 1lonelydaisy 41-45 21 hrs ago

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    Was hanging out with a guy and he came over and we watched a movie. He started trying to get touchy feely and I told him I didn't want to do anything. He could tell something was...
    Redvelvet58 Redvelvet58 26-30, F 1 Response 21 hrs ago

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