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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. 64 People

    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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    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

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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'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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    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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    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

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    I was just recently diagnosed with cervical stenosis at the c5c6 level. It's been compressed to 7mm. I have a herniated disc that's causing it. I also have degeneration that's...
    swan88 swan88 31-35, M Oct 9

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    I have lots of scars... Let's talk about those that aren't self made, shall we? Okay, I have a huge scar in the back of my head from when I was pushed off a bed and hit my head on...
    ColourfulDreams ColourfulDreams 13-15, F 1 Response 8 hrs ago

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    I'm 19 and I first started pulling my eyelashes when I was in 8th grade. At first it wasn't too bad. I would stand in the mirror and pull my eyelashes but was able to stop once...
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    Lately I have been feeling really fed up and depressed. I feel that both family and friends hate me being happy or having a life of my own. My parents are both really ill and have...
    galaxy3 galaxy3 36-40, F 1 Response 6 hrs ago

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    My Dad more than my Mam. I'm no alowed to do anything,i can't wear make up,i can't stay out late,i can't have a boyfriend.The list just goes on & on.I'm 14 & i just want to do...
    smackedagain smackedagain 13-15, F 8 Responses 5 hrs ago

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    How many of us look into the mirror and hate what you see? Wait a second. Did you create yourself? No, you didn't. I made myself feel bad for years because of my appearance and I...
    ladybug96 ladybug96 16-17, F 1 Response 2 hrs ago

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    I have no one, its not the first time. I talk to the wall because it won't tell my secrets. humans don't get me they don't want me I'm nothing to them. no matter how much I try, I...
    lovelydisgrace lovelydisgrace 16-17, F 3 Responses 10 hrs ago

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    I hate it when I wake up from an awesome dream and go back to sleep immediately after I have a different dream or none at all but when I wake up from a nightmare I usually continue...
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    I want to dye my hair purple but I have to quit my job and find a new one that won't care.
    myhiddenworld myhiddenworld 18-21, F 2 Responses 9 hrs ago

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    To buy a coat at my work I will have to work at least 18 hours. **** minimum wage jobs! :( ugh I'm a poor college student.
    myhiddenworld myhiddenworld 18-21, F 3 Responses 9 hrs ago

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    Once again I gave in and I fell hard and fast! Much worse and definitely way quicker than ever before. Your more addicting than a drug! Stronger than any poison known to man. But...
    Tj90070 Tj90070 22-25, F 9 hrs ago

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    I have been living with an undiagnosed illness since birth. I think its time that we join together in making sure doctors take our cases seriously. In that spirit I have created...
    iamundiagnosed iamundiagnosed 22-25, M 8 hrs ago

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    This was the conversation at the dinner table before saying grace.She asked, "Do you think dad doesn't really care for us anymore?"He responded candidly, "I guess. No text. No...
    4BlackForest 4BlackForest 36-40, F 1 Response 8 hrs ago

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    Yes, it is very true that I have not only natural beasts but they are enormous too. My breasts have never been filled with any silicon and are very natural to look at and touch as...
    singlepregnantmom singlepregnantmom 36-40, F 2 Responses 8 hrs ago

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    I'm almost 18 and have never been kissed, although I've had two "almost" boyfriends. I can't tell my friends this because they always talk about who they banged at a party etc, and...
    mahe18 mahe18 18-21, F 1 Response 8 hrs ago

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    I wish some peoples fathers would have settled for a bl0wj0b...
    AntonioV AntonioV 46-50, M 2 Responses 7 hrs ago

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    Let's talk about anything. I prefer girls 'cause i'm a lesbian but boys are welcome too. Just want to have a normal convo. krissaralar is my username.
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    Been not well. Have such intense feelings of disgust to the point where I want and need to just claw my skin off. It feels like I am going to go absolutely insane. I was driving...
    ChantelSurvived ChantelSurvived 22-25, F 6 hrs ago

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    Yes i have seen light orbs because I am the one who create light orbs to protect against evil and yes my spells of light protects people and my power of light come from the heavens...
    GodofLight GodofLight 46-50, M 5 hrs ago

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    I am devastatingly tired. In other news, camels. That is all internet. Goodnight. Or is it good morning? Maybe I'll have pancakes tomorrow. Mmmmmmmmmmmmmmmmmm pancakes.
    Ginkofishin Ginkofishin 18-21, F 4 Responses 5 hrs ago

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    Robert Downey Jr. And I'm 19. However, I have a neighbour that looks just like him.
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    The saddest kind of sad is when your tears can't even drop and u feel nothing. It's like the world has just ended. You don't cry. You don't hear. You don't see. You just stay there...
    Tenebrificxheart Tenebrificxheart 13-15, F 4 Responses 4 hrs ago

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    http://thoughtcatalog.com/pauline-navarro/2014/10/10-mildly-weird-things-overthinkers-do-when-they-have-a-crush-on-someone/
    panda05 panda05 18-21, F 2 Responses 4 hrs ago

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    What is your secret. I am lots from all the things I have done or seen done in my years.
    bloud13 bloud13 36-40, M 1 Response 4 hrs ago

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    The strangest item I have used was my brothers toy lightsaber from Star Wars I can remember I had a lot of fun with it and after it used to make me smile when he played with it...
    Maryb96 Maryb96 18-21, F 1 Response 3 hrs ago

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    So, in learning to trust again I have learned that I have become someone that isn't trustworthy. It seems like and easy fix...just start being honest, but it isn't. When you're...
    seesaw69 seesaw69 26-30 1 Response 3 hrs ago

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    Beyonce doesn't have a lot of friends outside of family either. That makes me feel better.
    LikeAPrayer LikeAPrayer 18-21, F 3 Responses 3 hrs ago

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    I am desperately in love with someone I can NEVER have. I look up at the sky and think over and over again- why do I even exist in this selfish, cynical world? Tears of frustration...
    Mayuko Mayuko 13-15, F 3 Responses 2 hrs ago

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    So I just read that China have very high debt. And I also know that US debt is so high that it is hitting the sky. And EU debt was so messy that the PIIGS once threatened to drag...
    HappieStinger HappieStinger 41-45, M 7 Responses 2 hrs ago

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    Hey ! I have had this disease since I was 9 years old. I am 22 now. I was sick for a large amount of my childhood. I been in remission for 7 years. I have been experiencing this...
    evermoreme evermoreme 22-25, F 2 hrs ago