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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

    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 1 Response Oct 5, 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 3 Responses Apr 10, 2013

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    Huh??

     what the heck is that?
    Beauphord Beauphord 46-50, M 10 Responses May 21, 2009

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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 3 Responses Aug 14, 2013

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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 2 Responses 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 23 Responses Sep 3, 2011

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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 2 Responses Jul 17, 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 3 Responses Jan 9, 2014

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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 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 3 Responses May 3

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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 6 Responses Oct 18, 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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    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 2 Responses Aug 18, 2013

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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 1 Response Jan 15, 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 3 Responses Oct 26, 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 2 Responses Jan 1, 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 4 Responses Aug 22, 2011

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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 6 Responses Sep 17, 2013

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    Related Experiences

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    I had a cluster of seizures and was intubated for 3 days. Caught aspiration pneumonia and stayed there for a week after I was home I noticed my breathing being different. Walking...
    nicoledn nicoledn 18-21, F Aug 18

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    Not a great day!! I had a fluoroscopy done today which is a spinal tap under X-ray and I have a major friggin headache!! I just want my life back and a cure for this terrible...
    cynthiashortridge cynthiashortridge 31-35, F Aug 13

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    I don't think I can take anymore. I thought this situation had been fixed but it hasn't. I'm bigger then I have been and gained 3lbs while sleeping. I can't live like this!! So...
    carlalynnrn carlalynnrn 36-40, F Aug 12

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    In 2012 I was watching a football game and went to stand up. When I did my right leg was numb, I had instances like this before but something was wrong. Finally I found a dr in...
    Justwantmylifeback Justwantmylifeback 22-25, F Aug 2

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    I love the United States. Are we a perfect nation? Not by a long shot. There will be no perfection in this lifetime. But I believe that, even with all its flaws, the US is the best...
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    Okay so this is the second part to my first wedge story where I was wedge by a group of cool girls at my school and left hanging my my superman pantys in the woods Okay so I hung...
    wedgiegirlallday2000 wedgiegirlallday2000 13-15, F 4 Responses Aug 1

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    Yeah so, I washed my blender in a previous story to wash off the maggots from the interior. I did not know that the blender itself had holes that allow the mechanisms to propel...
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    I have a wild crush on my oriental female boss. Not sure how it happened. One day I felt nothing and the next day couldn't stop looking at her. She has certain skirts or revealing...
    dannykincade dannykincade 41-45, M 2 Responses Aug 1

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    He isn't perfect but he's perfect for me. He may not have all the money in the world but he has all the love in the world for me. He may not be around all the time, but he's "with...
    for3v3r7 for3v3r7 26-30, F 3 Responses Aug 1

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    I haven't been eating much. Started getting really dizzy today. trying to eat and hoping this ED doesn't have me feeling guilty and huge afterwards . i'm just exhausted in fighting...
    brknsilence79 brknsilence79 31-35, F 1 Response Aug 1

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    I have a true love. And I just spent a few months winning him back. We have a long history, but I'm really still quite surprised that I got him back this time. Last night, I...
    prettyprude prettyprude 31-35, F 2 Responses Aug 1

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    i have woken up with a migraine today. my back is hurting but my room is the only room in my house that's dark enough. i want it to feel better :( waking up with a headache ruins...
    CallmeHopelessNotRomantic CallmeHopelessNotRomantic 36-40, F 3 Responses Aug 1

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    I have had it so long that I have given up trying to find a way to make it better.
    deleted deleted 26-30 4 Responses Aug 1

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    When it comes to meeting new people. I am extremely cautious and have a set of rules for myself that I usually stick to. Through experience I have learned that if I don't I could...
    snowberry75 snowberry75 36-40, F 9 Responses Aug 1

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    It burns. She doesn't know that she is my everything. My only friend, my only interest, my only confidant, my only everything. She's sees me as a mentor, nothing more. And damn...
    BlackSunCrimsonFyre BlackSunCrimsonFyre 13-15, F 2 Responses Aug 1

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    As some of you who have been following me probably guessed, I've been a little down in the dumps recently. It's a long story but the long and short of it is that I've never felt...
    AthenaJones AthenaJones 36-40, F 13 Responses Aug 1

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    How am I supposed to know if we have anything in common if you have no stories or experiences? My experience on Ep has taught me that blank profiles usually mean one thing: pervs...
    TheGirlFromJupiter TheGirlFromJupiter 18-21 1 Response Aug 1

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    I am a recovering opiate addict. I spent a few years painting a normal picture that covered the embarrassing truth printed on the wall behind it. While I was running the street...
    BrokenGabriel BrokenGabriel 26-30, M 2 Responses Aug 1

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    Well,i have a lot of them.This one is so stupid,and i seriously don't know why,i do this.My car is always out of gas,lol.I have gotten stranded!I just don't learn.I'm on empty for...
    1prettygirl 1prettygirl 36-40, F 16 Responses Aug 1

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    My daughter in law is a wonderful funny sweet lady. We have a lot in common and text back and forth all the time. She tells me she will look after me when I an old. She has become...
    ljbighug ljbighug 61-65, M Aug 1

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    yes..just so many times that now i cant even remember all of them..i sometimes think whether its them or me...i think something is seriously wrong with me...I trust too much...on...
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