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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

    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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    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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    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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    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 3 Responses Sep 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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    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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    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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    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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    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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    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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    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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    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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    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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    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

    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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    When we are assessing ourselves for how IH affects us and when we are communicating it to others it would be helpful to clearly separate and specify four different factors: 1) How...
    HyperZombia HyperZombia 41-45, M 2 days ago

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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 Response 4 days ago

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    First off for all of us suffering, I know your pain is very real, and I believe you and I'm praying for you! I stumbled across this blog tonight while doing research on getting...
    Pancreasfighter Pancreasfighter 41-45, F 1 day ago

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    We had been discussing the possibility of separating for about 4 months. Things were becoming strained between us. We were growing distant and I kept trying so hard to bridge the...
    Navylove19 Navylove19 18-21, F 2 Responses 6 hrs ago

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    My MM has disrespected me one too many times. I have tried to be everything that he wanted but have lost myself. I've lost my spark, my enthusiasm for life and even sometimes my...
    nolasanchez30 nolasanchez30 31-35, F 5 hrs ago

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    When I was about 16 years old I ran away from home, I could not take the physical abuse anymore. Unfortunately a cop found me and returned me to my abusive home, once we were away...
    nephthysbaby nephthysbaby 22-25, F 5 hrs ago

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    I'm not usually one to have massive regrets about choices I have made. I usually come to the conclusion that the choices I made were the right ones for me at that time, and just...
    jemimalonglegs jemimalonglegs 46-50, F 1 Response 2 hrs ago

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    WOLF The wolf has been much misunderstood and maligned in history and is not the vicious intruder of western fairy tales. The wolf is a shy, yet very sociable creature with...
    imgreywlf imgreywlf 56-60, M 1 hr ago

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    I have been looking up dream signs and when I woke up this morning, i realized I have been having a recurring one. It was my boyfriend, he seemed to always be in my dream, but he...
    Georgiakh Georgiakh 18-21, F 17 mins ago

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    Ghana, West Africa had held my heart since the day i stepped foot on their soil. Its so hard to put into words how much of an impact going to an African country will have on your...
    amandakleveland amandakleveland 18-21, F 8 hrs ago

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    I'm not good enough never have been and never will be I wish people understood how bad im struggling right now going out tonight to a bar with friends sucks enough since I don't...
    willieverbegoodenough willieverbegoodenough 22-25, F 1 Response 8 hrs ago

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    I'm sitting here wondering what if done to deserve this,If in a relationship I'm faithful,if needed I'm there,if I have it it's yours,I'm so nice even when I'm down, I try so hard...
    mommywithdecisions mommywithdecisions 18-21, F 2 Responses 7 hrs ago

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    Anxiety disorder has ruined so many things in my life, and sucked the joy out of things and people I used to love. I had a psychologist I used to see, but I haven't gone in...
    jonicole jonicole 18-21, F 5 hrs ago

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    Ive had friends in the past. I had lots of friends and its not that im socialy aqward or just dont want to its that, people just avoid me like a virus. All ive ever done is tried...
    pandasize pandasize 18-21, M 1 Response 3 hrs ago

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    I don't understand what I did wrong . he would come home angry from a long day at work and take it out on me . every little thing I did set him off , and he would hold me up...
    abbyhh25 abbyhh25 16-17, F 4 Responses 2 hrs ago

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    When I graduated HS in 2000 I was a care free stoner who just floated through life on cloud 9. Just about everything I had was provided by my parents. I wouldn't have admitted it...
    reelman4372 reelman4372 31-35, M 2 Responses 2 hrs ago

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    He's scared to try again and that ****** me off! I guess I have to respect his wishes. I just hate that you always say, "you're tired of hurting me". I forgave you why can't you...
    NoContactRule NoContactRule 18-21, F 3 Responses 1 hr ago

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    Well, recently I've been looking into dream signs and stuff and looking into my dreams. And during this I have realized something that happens in every dream. My boyfriend is...
    Georgiakh Georgiakh 18-21, F 11 mins ago

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    I really want to have this experience
    goonteam goonteam 16-17, M 8 hrs ago

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    Super unhappy with my life. I've been lacking motivation to make any good changes. It feels like every decision I've ever made was a bad one. I obviously lack the ability to make...
    BleuGirl83 BleuGirl83 26-30, F 8 hrs ago

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    I always end up attracting men with many similarities....I guess you could say they're my "type". We all have one. What is your "type"?
    Mollydolly25 Mollydolly25 26-30, F 1 Response 7 hrs ago

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    i have to go to a new school in September and im worried now tht because my body looks a lot older thn i am ill get a lot of teasing or bullying from other girls. it didn't bother...
    saradancer saradancer 13-15, F 2 Responses 6 hrs ago

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    I don't know whether dreams are just a mish-mash of stuff your sub-conscious dredges up when you sleep, or whether they actually mean something. There are so many books explaining...
    Seblett Seblett 13-15, F 1 Response 6 hrs ago

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    5:30 AM still haven't fallen asleep.
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 1 Response 5 hrs ago

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    I'm one of then people that had landed into the role of councillor among my friends... I don't mind, looking out for everyone, listening to there problems all the time...
    Charcaine Charcaine 18-21, F 5 hrs ago

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    My situation? I have 3 internet friends, lets call them A, B, and C. So i met B and C first then A. I really got along with B but then he grew distant when we met in real life. C...
    MysteriousAddiction MysteriousAddiction 16-17, F 1 Response 4 hrs ago

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    For many years I lost two to five days a month to painful swelling of my skin, hands, feet and digestive tract. I was often sick, weak and felt very ill. Getting to the toilet was...
    dispossessed dispossessed 46-50, F 4 hrs ago

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    Actually, I have several: 1. How old would you be if you didn't know? 2. Are you holding onto something that you need to let go of? 3. Do you ask enough questions - or...
    whatyathinkaboutthat whatyathinkaboutthat 36-40, F 5 Responses 4 hrs ago

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    In one of my dreams that really hit me emotionally... It started off with me in a black room that was covered in blood everywhere. I turn around I see a scale that weighs small...
    maliciousMartyr maliciousMartyr 16-17, F 1 Response 4 hrs ago