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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

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Huh??

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

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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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    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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    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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    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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    Related Experiences

    I suffer from oligoarticular juvenile idiopathic arthritis, and have done since nine years old. Whenever it flares up I end up having to be given steroids by my rheumatologist.
    BeccaLives BeccaLives 13-15, F 1 Response Jul 30

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    I have been in a relationship for only 3 months with my boyfriend. We are both in our mid 30's and currently trying to work on a long distance relationship. In the first month...
    1234dogma 1234dogma 31-35, F 3 Responses Aug 15

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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 6 days ago

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    Update! There's hope guys - don't settle! Last time I posted it had been only one month since being cheated on - and I was a mess. Only thing I was sure of is that there was no way...
    imatulipinacup imatulipinacup 22-25, F 1 Response 22 hrs ago

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    My sweet boy was born sleeping. I was 34 1/2 weeks pregnant . He had a true knot in his cord and it was also wrapped around his neck . Burying my son Jai'Marri was the hardest...
    brandi1191 brandi1191 31-35, F 20 hrs ago

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    I hate living like this, I hate looking in the mirror. I was overweight as a child,when I was 13 I was 6 foot 2 and 280 pounds then when I lost my weight I was 145 pounds frail and...
    Creativehue10 Creativehue10 26-30, M 1 Response 12 hrs ago

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    I was diagnosed with conversion disorder last November, and ever since then I still have no idea what to do about it. It's slowly been progressing since the sixth grade, and this...
    IvyBabbitt IvyBabbitt 13-15, F 3 Responses 9 hrs ago

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    I hate myself for all the lies and deception I inflicted on my current boyfriend. I blame my family particularly. I am a cheater and this means I have broken my own value system. I...
    Deadlynightshade5 Deadlynightshade5 22-25, F 7 hrs ago

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    Out of the Dark~ I long for the time of endless slumber, for the lights, and midnight parades. The clowns, whose masks only accentuate their madness, cannot hide in this stillness...
    Aurinne Aurinne 36-40, F 1 Response 2 hrs ago

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    I have major trust issues I can't let my bf rest in peace because all I do is think he is gonna cheat or do something that I won't know about when I'm at work and he's not .. Ugh...
    20andinkedxxx 20andinkedxxx 18-21, F 3 Responses 23 hrs ago

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    I have one on my back but I need more !! Lol
    20andinkedxxx 20andinkedxxx 18-21, F 2 Responses 22 hrs ago

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    I was diagnosed with endometriosis when I was about 12 years old. That's a lot for a person of that age to take in. You don't really pay attention tot what the doctor is telling...
    brandijeannn brandijeannn 16-17, F 1 Response 22 hrs ago

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    I have been to Thailand and I was sad and amazing all at the same time ! Te beaches were lovely !! The night sky was ******* amazing !
    20andinkedxxx 20andinkedxxx 18-21, F 2 Responses 22 hrs ago

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    I had this one the night before last and I barely recall any of it, which is sad because it was very engaging and complex. Basically, I lived in this alternate dimension where...
    PinkMellow PinkMellow 18-21, F 22 hrs ago

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    Now the only thing I want from her is her heart in a jar of embalming fluid next to my bed so I can finally have the peace of my soul that she stole
    malakaixanoctu malakaixanoctu 18-21, M 22 hrs ago

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    I have on outtie that it very ticklish
    AlexBrewer AlexBrewer 16-17, M 19 hrs ago

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    ok I have it just no pervs plz my username is ashleysokolik thxz
    ashleysokolik ashleysokolik 13-15, F 1 Response 17 hrs ago

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    I have always been depressed sence I could remember I always act ok and never let on how I truly feel I don't take meds for it though I probably should but I just find the fact...
    Toyx Toyx 22-25, F 1 Response 17 hrs ago

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    Numerous Global companies often publish their want for more electrical technicians to calibrate, configure, deal with, their electrical issues inside their large production crops...
    Diana63by Diana63by 31-35, M 1 Response 17 hrs ago

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    its double the giggles and double the grins and double the trouble when u have twins ,twice as much to love two blessings from above
    stacey8 stacey8 22-25, F 1 Response 17 hrs ago

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    Who doesn't have a dysfunctional family? If you don't then your not "normal" lol Everyone has their quirks.
    breeze90 breeze90 22-25, F 1 Response 17 hrs ago

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    Im a good listener. Yes I have issues of my own but a good conversation helps sometimes right
    FaithCB FaithCB 16-17, F 17 hrs ago

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    Anybody else ever have an invisible ****? You sit on the toilet for 3,4,5 minutes. You hear those satisfying plops and splashes. You get up expecting to rejoice at the results of...
    Handyman25 Handyman25 22-25, M 1 Response 16 hrs ago

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    I have one as he is like 12 days as he lost his sister early morning. He is a Lama and seems like feeding him make it hard to think we will give him away to a family to care about...
    Egyptianguy34 Egyptianguy34 31-35, M 1 Response 15 hrs ago

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    I've been having some thoughts about this for a few days now, which I might have partly reflected in comments I've made here and there, can't remember... What I've been thinking...
    sometimeslonelytoo sometimeslonelytoo 41-45, M 1 Response 15 hrs ago

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    Now don't go getting excited over nothing. I don't post videos of myself there, i don't post any videos at all, i just watch them. i do watch and subscribe to a few youtubers. and...
    violet1698 violet1698 31-35, F 1 Response 15 hrs ago

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    Let's just say it was the worse family vacation I have ever been on you get on a boat and the first thing that happens is the people try to give you drinks that you have to pay for...
    erikapaige97 erikapaige97 16-17, F 15 hrs ago

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    I have been told :) AKA bad *** movie voice
    WhosChaos WhosChaos 18-21, M 15 hrs ago

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    I have one, with 160000+ subscribers! Join the queue! www.youtube.com/user/WhosChaos
    WhosChaos WhosChaos 18-21, M 15 hrs ago

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    I'm not going to lie or sugarcoat this: for me having male friends, I have to be VERY mindful of my relationships with them. I've barely mentioned my bf to them since he left for...
    VousEtesBelleCM VousEtesBelleCM 18-21, F 2 Responses 14 hrs ago

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    Everyone who is a little bit closer to me knows how low self esteem i have. It is unbelievable actually. There's no part on me that I'm satisfied with. I mean physically. And...
    anrim654 anrim654 18-21, F 1 Response 14 hrs ago

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