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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. 71 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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    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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    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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    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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    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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    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 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 1 Response May 3

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    Huh??

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

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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 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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    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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    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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    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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    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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    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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    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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    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 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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    Related Experiences

    I am looking for a friend, gender/location/age doesn't matter as long as you won't hurt my feelings. I'm struggling with eating disorder and anxiety. I can be supportive and my...
    veronicarosy veronicarosy 16-17, F 44 mins ago

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    "Listen to your inner voice, listen to your intuition, pay very close attention, hear every word that it is saying, ...see what has been limiting you and preventing you from...
    Injoy1767 Injoy1767 46-50, F 54 mins ago

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    When everyone in my third grade class were buying new games and stuff like that i was helping my mom take her medicine. My mom got diagnosed with Lupus in 2007. After that...
    Leannabj25 Leannabj25 13-15, F 1 Response 57 mins ago

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    You know, the people who really suffer rarely tell people how much worse they have it than others. It's people who don't live with the pain who say things like "Well, your cousin...
    emperornorton47 emperornorton47 56-60, M 1 hr ago

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    This is a long story.... Just before beginning of the school year this year this guy added me on Instagram he was native like me n he lived in the same area I was living in. So I...
    cassie200015 cassie200015 13-15, F 1 hr ago

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    I checked this as an experience because after one lousy date last year I quit trying to go out and accepting advances I found so many movies to watch and TV shows I missed I found...
    barefootbeach barefootbeach 22-25, F 2 hrs ago

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    It's official I have a boyfriend. I still don't understand what he sees in me. But apparently he like it. I hope this last longer then my other relationships.
    escape1424 escape1424 16-17, F 1 Response 2 hrs ago

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    I'm blessed to live the life I live 🙏 I was born into a functional family full of love. It's not even about the money or materials we have . I'm just grateful for the love...
    Slayoncee Slayoncee 16-17, F 2 hrs ago

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    With a quick and massive weight gain, saggy boobs quickly follow, I don't mind, just wish they didn't have stretch marks.
    FatGingerDyke FatGingerDyke 22-25, F 2 hrs ago

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    We have been together for over a year and I half, I love her so much.
    FatGingerDyke FatGingerDyke 22-25, F 2 hrs ago

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    Today Again you were in my dream. We both were chatting. you seemed upset . You were telling me the difficulties you are facing in your life.You were telling me about your mum.You...
    lovemylife2210 lovemylife2210 26-30, F 2 hrs ago

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    Few months back, you would often come in my dreams. We were together at that time so I thought its normal to have you in my dreams. I never had you in my dreams since you left...
    lovemylife2210 lovemylife2210 26-30, F 1 Response 2 hrs ago

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    As the years go by I become more and more unable to restrain the monster growing inside me. I am alone in this world and even my own reflection turns its back on me, leaving me...
    anhonestgirl anhonestgirl 26-30, F 2 Responses 3 hrs ago

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    She's extreme. The problem is that I was brought up to respect my elders. She is mine, im the younger. I've never ever thought it was my job to tell her right from wrong. Yet, it...
    Adventurousprofiler Adventurousprofiler 46-50, F 1 Response 3 hrs ago

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    I have severe social anxiety, degenerative disc disease, spinal stenosis, nerve inpengment. I am losing my ability to walk. I don't trust people. what's worst, I'm engaged to a...
    PrincessMouse86 PrincessMouse86 26-30, F a week ago

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    PLEASE READ! I have just started a charity. I am 17 years old, and this is my story: I was born with a heart condition called Aortic stenosis, which is narrowing of the exit of the...
    amylouexoh amylouexoh 16-17, F Jul 5

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    It's as if I'm drowning in a sea of pain. I don't understand anything when it comes to this disorder. I don't understand why it has to make us feel the way we do. I know we all...
    ginganinja33 ginganinja33 18-21, M 1 Response Jun 28

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    Every night I seem to have a nightmare I don't know why I get them so often I always get woke up by them
    deleted deleted 26-30 Jun 28

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    I know no one can instill self confidence in you and that it must come from within, but really how do you get what you never had? I have just about zero self confidence. Anything...
    SomeoneOutThere SomeoneOutThere 41-45, M Jun 28

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    I haven't had a legitimate relationship in 2 years. I've tried dating websites, but there is never a mutual feeling. I pray about finding someone, but I'm truly afraid it will...
    ambiblue ambiblue 22-25, F 3 Responses Jun 28

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    I lust for things and women that I can never have; and I love women that may never come into my life. When will this madness end? How do I break this vicious cycle and move on?
    aldnaz aldnaz 46-50, M 4 Responses Jun 28

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    I think we've all had a crush right? And when we do we started to have that sensor of his presence, every move he makes. Then we started to notice small things they do. Then we...
    sabrinabryn sabrinabryn 13-15, F 1 Response Jun 28

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    Al embarrassing as they are I would still have the urge to tell people about it when I got older, so I told people it was about my little sister.
    underlyinghonesty underlyinghonesty 22-25, F 1 Response Jun 28

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