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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

    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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    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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    Related Experiences

    I no longer mind the idea of destroying myself. In fact, I have been craving it; and have been smoking and drinking at every given opportunity. I feel determined to self destruct...
    CaitlinBuchan97 CaitlinBuchan97 18-21, F 2 Responses 50 mins ago

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    I have cried myself to sleep more than once. And tonight, i think its going to be another night....I just know its happening, I can't stop the tears now, and I haven't even laid...
    BroknGirl89 BroknGirl89 26-30, F 1 hr ago

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    We see the world in three dimensions and many people understand the fourth dimension to be time. Does anyone have a confident understanding of what the fifth dimension consists of...
    ItsTooEasy ItsTooEasy 51-55, M 1 Response 2 hrs ago

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    Tonight I have been destroyed by the one I thought would never do it to me I thought she loved and cared for me but what she had said to me tonight I now no differently. I am...
    Sirwithherkey Sirwithherkey 36-40, M 2 hrs ago

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    I know what it's like to wait until everyone's sleeping till you can be alone and hurt yourself. I know what it's like to spend an hour in the shower because it's the only place...
    Bitxh0x Bitxh0x 13-15, F 2 hrs ago

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    It's true that I don't need either to have fun, I've had lots of fun without them, but I also have fun with them. So to me it's fun getting drunk and/or high with friends and...
    udamansteel udamansteel 16-17, F 2 hrs ago

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    I now have 5 tattoos! one of which is a very realistic looking black widow on my shoulder. it's fun when people get behind and start to freak out because they think I have a spider...
    ShysietheVampiric ShysietheVampiric 18-21, F 2 hrs ago

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    So I made an account for this website to share my story about having polycyclic ovary syndrome. I was only diagnosed two days ago but after talking to my doctor and reading...
    JudgementFreeMe JudgementFreeMe 22-25, F 3 hrs ago

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    Lately i have been dreaming alot about Stars and planets. I usually meet people that i know in Real life First Dream: Chasing Stars, i was just flying and gathering...
    Selfconsciousness Selfconsciousness 18-21, M 3 hrs ago

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    I’ve had enough of this crap. Enough is enough is enough. I really need to take a break, away from this crazy stuff. You’ve made my life a misery. Well, now the worm has turned...
    TonyGrey TonyGrey 31-35, M 3 hrs ago

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    My husband loves me like a person loves a loyal dog. He's never been in love with me and he's only staying with me because he doesn't have another place to immediately go to, and...
    milalew milalew 26-30, F 3 hrs ago

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    It would be nice to make some friends on here, that actually seem interested in talking, and I don't have to put all my effort talking while they say three words all the time and...
    mr8bitmonster mr8bitmonster 18-21, M 1 Response 4 hrs ago

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    Humm... I have a date tonight i am not sure about... Don't really want to go at this point... but It's my first one in a VERY long time... I ask, but everyone i ask says no...
    nocool nocool 41-45, M 9 Responses 4 hrs ago

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    I have urge incontance and used to have a few accents but i started to wear protection and now not a problim if i cant hold it
    MattB1997 MattB1997 16-17, M 4 hrs ago

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    If you were to ask me one year ago how I identify I would have told you I am a pansexual, nihilistic writer/artist. But I have decided I am just sexual and where I fall on the...
    patternine patternine 70+, F 4 hrs ago

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    I was wondering if there was anyone out there that could help me out. I have been going to the doctor for more than a year trying to get a diagnosis. Many doctors, many tests...
    LoveMinPins LoveMinPins 51-55, F 1 Response 4 hrs ago

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    When I was 7 I had imaginary friends, but they never left as I got older. They just became more real. I understood no one could see them, no one could hear them. It was only me...
    Schizotistic Schizotistic 22-25, M 2 Responses 4 hrs ago

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    and it's quite logical phobia if you take notice of my life. At my 25 I have achieved NOTHING or almost nothing.. I am currently unemployed, live in a god-forsaken third world...
    sweetsnake sweetsnake 22-25, F 5 hrs ago

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    Long story short. I have had LS for 2 years. I have tried Clob, Protopic, low oxalate diet, honey, Crisco, with no success. What IS working for me is a low sugar, low wheat, low...
    Ann2711 Ann2711 56-60 5 hrs ago

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    This doesn't really belong here but it's the best place for it :P Being a volunteer on here I send every new member a message to welcome them :P I have finally caught up on it! I...
    Raptax231 Raptax231 18-21, M 3 Responses 6 hrs ago

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    Hear me out... Ok, so, Had to take it down. I'll work on it for later... Can you detect an accent? It's really important, I've been working on not sounding so... foreign! Even...
    girlinwhite girlinwhite 18-21, F 2 Responses 7 hrs ago

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    I asked myself this question for quite some time now and I realized that little would have changed. Maybe I wouldnt have gone through this guilt and healing process but I do...
    GuiltBear GuiltBear 31-35, M 7 hrs ago

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    I don't think they are thinking as profoundly about things as I am. Each to their own, I don't want to tell them to do otherwise or to claim that what I am doing is right. But...
    FittingUsername FittingUsername 22-25, M 7 hrs ago

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