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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 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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    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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    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 Aug 18, 2013

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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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    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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    Huh??

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

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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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    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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    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 4 Responses Oct 18, 2012

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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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    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 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 21 Responses Sep 3, 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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    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 3 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

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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

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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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    Related Experiences

    I am no one to use my situation to my advantage. I don't seek sympathy; I prefer empathy. I don't want people to feel sorry for me; I want people to understand. It makes me angry...
    makefriendswithchaos makefriendswithchaos 18-21 Jul 1

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    Needless to say I love him dearly. About 10 years ago he was diagnosed with arthritis-spinal stenosis! I never thought my love would suffer like he does now. He thinks I am going...
    chappeeeee chappeeeee 46-50, F 3 Responses Jun 28

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    I never really paid too much attention to this especially when I was younger. According to my mom I slept all of the time. When I was awake I would disappear and probably just fell...
    linuxnurse linuxnurse 31-35, M 1 day ago

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 4 hrs ago

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 1 Response 4 hrs ago

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    In your life you meet people who bring much joy to your life and also people who bring much misery to it. I am very unfortunate because I've had more people who bring me misery in...
    morgan18365 morgan18365 16-17, F 1 Response 3 hrs ago

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    Yes I have everything I should be thankful for -people who like me a lot and a comfortable home.I have a few good friends and my parents and sister.So I consider myself lucky.I don...
    restored87 restored87 46-50, F 2 Responses 3 hrs ago

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    I have always loved fat but i never fully realized it until I got older. As a kid I would stuff pillows and blankets under my shirt simulating me being fat, and it always felt so...
    ilovefatforsomereason ilovefatforsomereason 22-25, M 2 hrs ago

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    I have a lot of internal conflicts. I am constantly blaming myself as to why certain things have happened to me in my life. I have secretly dealt with depression and self harm my...
    ImAWorkInProgress ImAWorkInProgress 16-17, F 1 hr ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 4 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response 4 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 3 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response 3 hrs ago

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    I get really angry so easily... I'd be laughing and someone would say something I didn't like and I'll get so angry! If I debate something with someone, I get so mad i have to...
    faithandfree faithandfree 16-17, F 2 Responses 3 hrs ago

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    I have been writing on this site a lot lately and tonight he asks who the hell do you keep texting?! I told him I'm just responding to posts which is partly true. But now I feel...
    tlee5001 tlee5001 22-25, F 6 Responses 3 hrs ago

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    Like today i do t know why i have so much on my mind that i cant sleep even though i am tired i cant
    desirejanice desirejanice 22-25, F 2 Responses 3 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 3 hrs ago

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    I have been doing this on the phone for years now and it doesn't get old when you do it for the first time with a stranger you don't know it just makes it that much more exciting...
    heartgun heartgun 26-30, M 3 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 3 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 3 hrs ago

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    I'm starting my Senior Year soon. I still don't know where I'm going to attend college. I have not even done my SAT. I'm so scared about the future. I'm not even sure what I want...
    Gabs96 Gabs96 18-21, F 3 Responses 3 hrs ago

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    hi everyone i have a crew on gta online (Xbox) and i would like to have more members , so if anybody wants to join plz leave a message
    jojo12380 jojo12380 18-21, M 2 hrs ago

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    This is a group to help people with sadness in their lives, if you wanna become part of this group guys, message heartless2, the creator of this group, for info. We don't judge at...
    TheGuy147 TheGuy147 16-17, M 2 hrs ago

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    I want to be a actress so I am looking up schools to get more experience but I have no luck so yeah but I act all the time I will so a couple lines off of my favorite shows and...
    LonleyWolf99 LonleyWolf99 13-15, F 2 hrs ago

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    Every now and then, I have nightmares that come true. It has happened about 8 times. Before 9/11, I had a nightmare that planes flew into skyscrapers. Just recently, July 10th, I...
    vanessasky29 vanessasky29 26-30, F 1 Response 2 hrs ago

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 2 hrs ago

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    I have forgotten how much it sucks to put someone's happiness first before your own. This is my breaking point. I have had enough of the lies and lack of trust on my part. Time to...
    AcousticAnne AcousticAnne 26-30, F 1 Response 2 hrs ago

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    Yeah and thats killing me inside. I have many friends online but not even a single one in personal. I just always feel jealous when i see a large group of guys going out on...
    mahdiraza mahdiraza 16-17, M 1 Response 1 hr ago

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    Let's see if I can write my random without getting in trouble tonight. I woke and ., you know .. ;-) .., but that that did not really solve my issue, My mind stayed where it had no...
    Sunshine0615 Sunshine0615 36-40, F 1 Response 1 hr ago

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    I have to say, never thought an animal would actually feel like companion but he does. I encourage anyone feeling down or alone to get a pet. Hard work to maintain one but well...
    jag08 jag08 36-40, T 1 Response 1 hr ago

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    When I'm cold I can control my nerves or something like that I can make myself warm, vice versa when I'm hot! I found out recently I can do the same in a room. Someone will say...
    mrmagnium mrmagnium 13-15, M 54 mins ago