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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. 61 People

    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

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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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    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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    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 2 Responses Aug 22, 2011

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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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    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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    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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    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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    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 66-70, F 1 Response Jul 17, 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 22-25 1 Response Apr 6

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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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    Huh??

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

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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

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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 36-40, F 4 Responses Sep 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 2 Responses Jan 9

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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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    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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    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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    Related Experiences

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    I was diagnosed at 3 days old with this condition. When I was younger I never saw myself as different and could do most things any other child would do. Each year I would go get my...
    Karate100 Karate100 18-21, F Aug 21

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    Well, I can't decide if he's an idiot, a scumbag, or both. He's probably both. Intentional or not, his six-month rampage of inexcusable douchebaggery is coming to an end after...
    floyd228 floyd228 22-25 1 hr ago

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    I was never the most popular girl at school....not that I wanted to be, anyways...and I had my own little posse of friends, just 4 of us, that were just like little bit too 'geeky...
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    Am I the only one who thinks Ashya's parents should have stayed longer in jail? Before l get blasted for my random thoughts..think about it...they could have killed the boy with...
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    The onl adverse factor I could say was it might have been performed with a little updating, but in saying that it absolutely was continue to actually at ease and clear. We...
    Jacksonpj05 Jacksonpj05 31-35, M 27 mins ago

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    And I'm thinking of buying the professional materials to do it myself. I've done my eyebrow, septum, snake bites, and dimples all on my onesies. They've turned out great. I do get...
    LifeLacksLuster LifeLacksLuster 26-30, F 2 hrs ago

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    I get nervous around most people, I struggle to express myself and sometimes I can come across as rude when I'm not trying to be. I usually like to plan out my conversations and...
    AlternateReality AlternateReality 16-17, F 1 hr ago

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    The onl damaging thing I could say was it might have been accomplished with just a little updating, but in declaring that it was however really comfortable and clean up. We...
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    I won't if they see I haven't slept in 4 days by the bags under my eyes
    disasterland disasterland 18-21, F 42 mins ago

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    Fred Weasley, Oliver Wood, Draco Malfoy, Tobias Eaton, Peeta Mellark, Finnick Odair, Mercutio (from Romeo and Juliet), Odysseus, Augustus Waters, Batman...... I have a problem
    wannabeweightless wannabeweightless 13-15, F 1 Response 34 mins ago

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 Aug 3

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 Aug 3

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 Aug 3

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 Aug 3

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 1 Response Aug 3

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    I find it Amazingly Stupid that "Some" folks judge the spelling& grammer more than they judge what's actually said in a posting! Not everyone has the same level of education/have...
    jettys jettys 56-60 Aug 3

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    1. Am shy 2. I have 8 tattoos 3. I have my own band 4. Am have original thoughts 5. I hate money 6. I am 27 and 6foot3 7. I don't trust easy 8. I have a 88 red corvette 9. I...
    8tattoos 8tattoos 70+, M Aug 3

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    yes I do! I haven't posted anything yet, but soon I will be posting the first chapter of my Wattpad debut book "To The Point Of No Return." stay tuned on @karipeltonen for chapter...
    CloakedWanderer CloakedWanderer 13-15, M 1 Response Aug 3

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    Screw guys who judge us ladies for our weight and our looks! Have you looked at yourself first before judging us! :D We won't give a **** if you hate us or not. We have a life to...
    DysfunctionalPiano DysfunctionalPiano 13-15, F 3 Responses Aug 3

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    So I tried reverse psicolgy on my crush I said "no don't pick me up." He picked me up I said no don't touch me he did. It all makes sense I might have a bf soon wish me luck:)
    thatonegirl156 thatonegirl156 16-17, F 1 Response Aug 3

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    I'm a guy with long hair. I've been growing it since August 2012 and have no plans to cut it in the foreseeable future. It's currently just a little bit past my shoulders, I'll...
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    newaccountquinnmac12 newaccountquinnmac12 13-15, F Aug 3

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    I was diagnosed with exercise induced asthma at the age of 12. Since then, my asthma has gotten worse and worse. Now only about 70% of my lung capacity works, and I am on a daily...
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