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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. 70 People

    Huh??

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

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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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    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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    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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    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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    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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    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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    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 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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    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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    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 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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    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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    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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    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 just diagnosis with ISS.

    I have been misdiagnosis for twenty five years. I feel like such an idiot. One pulmnologist told me I had a very mild case of asthma. To which I was like I can't breathe. It took a young doctor five minutes of listening to me to tell me I was not wheezing but I had strider.. I...
    xraylady xraylady 46-50, F May 3

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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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    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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    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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    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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    Related Experiences

    So I joined Goodreads back in December 2011 and haven’t read much since then. I have what I consider an eclectic varied mix of books on my reading list. I have many classics...
    dustypork dustypork 31-35, F 14 hrs ago

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    Cancer Cancer Cancer::::: I posted in earlier post about my sister-in-law’s battle with cancer. It was a hard fought battle and I would love to say there were no causalities...
    lasergraph lasergraph 61-65, M 9 Responses 1 hr ago

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    I have a best friend who is like a sister to me! She is 7 years younger than me but she is so mature for her age I can't even tell her real age sometimes. We think so much alike...
    doodlebob424 doodlebob424 18-21, M 14 hrs ago

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    The Josh Duggar case made me think of this, so here are my thoughts on pedophiles. If you are of the opinion that straight people can't help being straight and gay people can't...
    shycopath shycopath 22-25, F 14 hrs ago

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    I'm new to this and I need to get this feeling out. So here I go. Second Grade is where it started. Mrs. Holston's class. I walked into that class not knowing what to...
    AtheistChrist AtheistChrist 13-15, M 1 Response 13 hrs ago

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    I want to travel the world. I was in the U.S. Navy and lived in Guam and Japan and have been to a lot of places on that side of the world both want more ! I have created a blog...
    jessicalynnsmith jessicalynnsmith 22-25, F 13 hrs ago

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    some people get the wrong idea of me sometimes. I can go from 0-10 in a heartbeat when necessary. when I'm in a good mood people try to ruin it and when I am in a bad mood people...
    Deeplyflawed89 Deeplyflawed89 22-25, F 2 Responses 12 hrs ago

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    i sit here in public and have wet me :3 I will walk home now to have some fun someone want chat with me ?
    jassikitty jassikitty 18-21, F 7 Responses 11 hrs ago

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    I have a big heart, I'm one of those people you can break easy, but still forgive u & love you. I know there's rude *** people in the world, but I believe they can change. Yeah I...
    jadelynthompson jadelynthompson 16-17, F 2 Responses 10 hrs ago

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    sometimes i'm just overflowing with thoughts and feelings. and there's always that worry that absolutely nothing i say makes any sense. there's so much inside my head and i never...
    labyrinths6899 labyrinths6899 13-15, F 1 Response 10 hrs ago

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    I am a drummer and damn good at it! I am not much of a keyboardist or vocalist but am one hell of a poet! Working solo now for eight years has been adventurous. There are so many...
    HallowOneBand HallowOneBand 36-40, M 1 Response 10 hrs ago

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    i have been struggling with self harm for over 10 years now and i have so many scars from my wrists to my shoulders and there are a good handful that are some pretty decent sized...
    mischiefmanaged21 mischiefmanaged21 18-21, F 7 hrs ago

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    Infact there has been only one person who has gotten through those walls ever! Not only did she care enough to get in but she actually tried and succeeded. She just slowly burrowed...
    Raptax231 Raptax231 18-21, M 7 hrs ago

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    i have this kinda problem, but my family doesn't seem to understand. one day when we are at a gathering, i sat in front of my dad and had 2 hours of torture. he kept on chewing so...
    player6598 player6598 13-15, M 1 Response 7 hrs ago

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    I don't have children by choice. I have always known motherhood was not for me at a young age. Most of my friends are married with children, and really have no time or interest in...
    Missgirlie Missgirlie 41-45, F 2 Responses 6 hrs ago

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    People have taken me for granted. And i have always let them. What they have done to me has been a catalyst for my success. But every time I look back, and remember some times, I...
    Significant Significant 26-30, F 6 hrs ago

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    More than one, actually. They can make it very hard to communicate :/ I'm going in for multiple scans. My doctor says they want to confirm whether or not I have some rare illness...
    junedew junedew 18-21, F 5 hrs ago

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    From the first time we met. I couldn't explain my feelings for him. I knew him to be special. We could talk about everything and anything. I could feel him from a distance. I...
    for3v3r7 for3v3r7 26-30, F 5 hrs ago

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    What a thing to complain about! Sure, a person with a heart has plenty of reason to lament about the pains of having one, but what excuse do I have? Well, first, I'm bored. I'm so...
    Lue4028 Lue4028 22-25 5 hrs ago

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    I'm actually not looking to have an affair, my wife and I have an open relationship. I don't like the site because, as a guy, you have to spend money to do just about anything. I...
    Rodgers1981 Rodgers1981 31-35, M 5 hrs ago

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    the best thing my mom taught me was how to make arroz con leche. lime, even if I have no groceries I can have something filling, sweet and comforting. yum
    yesitsme123 yesitsme123 31-35 1 Response 4 hrs ago

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    i work in a government sector and i just hate my job. I hate the fact that everyone there is so arrogant. i am the youngest in my department and i just transferred from another...
    drake2412 drake2412 26-30, M 3 hrs ago

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    Ok so here's why I ended up getting my headgear wired in. I know this typically doesnt happen and most people only have to wear their headger at night. I kept having problems with...
    emilyseabridge emilyseabridge 16-17, F 2 hrs ago

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