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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 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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    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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    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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    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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    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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    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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    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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    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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    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'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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    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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    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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    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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    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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    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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    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...
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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 Jul 22

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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 Jul 20

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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 Jul 23

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    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 2 days ago

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    This is to her parents... I wish you a very Merry Christmas and a happy New Year. I just want to take a little bit of your family time, to tell you about myself. You may know me...
    NishantJ NishantJ 22-25, M 1 Response 2 hrs ago

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    "What do I deserve?" - Have you, reader, ever asked yourself the question? How about just asking yourself, 'How much would I be worth to the world? 45 grand a year? How about...
    LysanderFremont LysanderFremont 26-30, M 1 Response 2 hrs ago

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    I'm only 21 years old but can happily say that me and my younger sister have had the most idyllic childhood with many of our fond memories being spent with our grandparents. My...
    deathfromabove1066 deathfromabove1066 22-25, F 28 mins ago

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    My head and thoughts are no longer of my own. I cannot tell you the month day or time. I do however know the year is 2014 and august 7 rapidly approaches whatever today's date...
    simpleandsweet36 simpleandsweet36 36-40, F 1 Response 18 hrs ago

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    People have ****** me over to much ill make it short and sweet for yall because if I told you why I have trust issues and how many people have hurt me then wed be here for a long...
    BornDifferent BornDifferent 18-21, F 2 Responses 18 hrs ago

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    I have had morphea since 1965 at the age of 14. Back then it was extremely rare to find a doctor who even knew what morphea was. My morphea started as a round spot on my wrist...
    Muffygirl Muffygirl 61-65, F 1 Response 16 hrs ago

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    I never was one to have close friends; people I would draw close to would always end up leaving or things would go terribly wrong with the fact that my mother would prevent me from...
    walker13sl walker13sl 22-25, F 1 Response 16 hrs ago

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    I want to make out or have sex with someone at a car dealership. I fantasize about kissing my partner while leaning up against one of the vehicles on the lot. Honestly, I don't...
    Dreamer19845 Dreamer19845 26-30, M 16 hrs ago

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    Too many mistakes override in my life. Social services. My dad. Trying to cover up bad emotions. But I have achieved something. I have self harmed in a month. I am slowly stopping...
    CuteLittleScrewUp CuteLittleScrewUp 16-17, F 3 Responses 13 hrs ago

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    People are drawn to me, they call upon me, they often ask me for advice which I have no qualifications to give. I am very careful not to give advice, but to give factual accounts...
    Human0xymoron Human0xymoron 41-45, F 12 hrs ago

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    I am 12 Years Old (nearly 13!) and I have had Grade 3/4 degenerative Spondylolisthesis since birth. I have been to many hospital and GP appointments, and only now have the doctors...
    SpondyNightmare SpondyNightmare 13-15 1 Response 10 hrs ago

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    I have PCOS. There's not a lot of awareness for it and I've noticed that PCOS is different for every girl/woman who suffers from it. I feel like a lot of women are embarrassed to...
    Bird488 Bird488 26-30, F 3 hrs ago

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    Now of course not many people will beleive in this kind of thing and will have their own opinions and that's ok, I'm just giving my honest experience, I have been told that my...
    secretgal2 secretgal2 16-17, F 1 Response 2 hrs ago

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    Were supposed to go out tonight. Me my wife, and our roommate to a local bar. Im just hoping i dont make an *** out of myself. Im going to try not to drink too much but i get so...
    shinjorai shinjorai 36-40, M 1 hr ago

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    Ugh, I'm so socially awkward due to my anxiety and it bugs me. I can't manage to sleepover anywhere. I always end up coming back home. I have to keep my phone charged and on me 24...
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 1 Response 18 hrs ago

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    Have you ever hated anyone who made your life a living hell? A sick and twisted psychopath, who gets off at seeing you in pain. I have had an experience with such a person, it...
    BleedingPrimrose BleedingPrimrose 18-21, F 2 Responses 17 hrs ago

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    my message to another EP member: once you accept death (like I have) you make yourself a work of art. seriously, look at me. would I act the way I do if I hadn't pondered suicide a...
    mierdamundo mierdamundo 31-35 1 Response 17 hrs ago

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    I have been dreaming about my ex boyfriend lately, but I honestly don't think of him anymore. I know it means something but I don't want to talk to him anymore.
    Jelliii Jelliii 22-25, F 1 Response 16 hrs ago

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    How can someone ever love me if I don't like myself sometimes. I have my good days and my bad days. Honestly today feels like one of those bad days. Sometimes though I come to the...
    Savone52798 Savone52798 16-17, F 3 Responses 16 hrs ago

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    I'm 21 and I didn't get diagnosed till last year in May. It pretty much explained everything I was going through, the panic attacks, the endless worrying, the nausea and the...
    chrisxderp chrisxderp 18-21, F 1 Response 16 hrs ago

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    Choose the red sucker cos it's prettier? or the green sucker cos it's tastier? I've always had trouble making decisions. It's not always easy, and sometimes you have to chose. Last...
    DarkwingGoslyn DarkwingGoslyn 31-35 15 hrs ago

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    I've always dated outside of my religion. I'm Christian. My boyfriends have all been non-religious or Wiccan. Was this the reason it never worked? Most of I've guys I've fallen for...
    DarkwingGoslyn DarkwingGoslyn 31-35 15 hrs ago

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    I have trouble going to bed before 4 am
    simmy6789 simmy6789 18-21, F 14 hrs ago

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    I have this feeling that my boyfriend will break up with me soon. He's been busy and it seems he lost interest in me. It's so hard now to get a reply from him. I think I'm losing...
    aksil aksil 26-30, F 1 Response 14 hrs ago

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    They say never let him go anyway if you have found your true love...but what if that person can't be my man...i love him in every day of my life...
    hannagrace hannagrace 31-35, F 14 hrs ago

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