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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

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 1 Response Aug 18, 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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    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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    Related Experiences

    Hi, I'm 14 years old and at the age of 13 i was diagnosed with scoliosis. This was such hard news to hear a i am a dedicated field hockey player, a dancer and a crops country...
    LiveLaughLoveDance LiveLaughLoveDance 13-15, F Oct 8

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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 IBS (Irritable Bowel Syndrome). I've always had a very sensitive digestive system, but it became really bad in 2010-2011. It was triggered because I had severe depression...
    spacepixie spacepixie 22-25, F 6 hrs ago

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    When I look back into my childhood, I could say that I was a happy-go-lucky child. I was one of those kids who played outside in clutters, with bikes, toys, and imagination. I didn...
    JumpingTomatoes JumpingTomatoes 16-17 5 hrs ago

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    i have a crush who works on another location but we have the same company. lets call her vina. shes the kind of girl who almost got my ideal one. shes simple, smart, caring, sweet...
    KeeyCharming KeeyCharming 22-25, F 4 hrs ago

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    We have a major terrorist threat building, we have a pretty open border on the south end and extremist who know how to use it. The US, contrary to what some people try to teach is...
    lasergraph lasergraph 61-65, M 3 Responses 2 hrs ago

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    Within the last year, I have developed an overwhelming urge to experience another man. To date I have been with 3 different guys. I have had oral, given oral, and bottomed. I have...
    dad3on26 dad3on26 51-55, M 35 mins ago

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    Sometimes, chaos comes into life catching you by surprise....The equilibrium you worked so hard to maintain is tipped off-balance....The ball of the pendulum is swayed from one...
    samemay54 samemay54 41-45, F 1 Response 8 hrs ago

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    Everybody has been on both sides of bullying. The bully and the victim, everybody, except maybe Gandhi. Throughout my career as a student in middle and high school, what I have...
    francake16 francake16 16-17, F 6 hrs ago

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    Nudity isn't necessarily erotic; Children prove this to us everyday. In American society, however, we have been taught to believe that if someone is nude, we have to think of them...
    Ginkofishin Ginkofishin 18-21, F 6 Responses 5 hrs ago

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    Happy Friday...I would have been happier if I had a result. I'm just going to sit here and have a little cry. I'm too tired to be able to resist.
    cheekyhannah cheekyhannah 31-35, F 1 Response 5 hrs ago

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    I understand she is my mother and I am supposed to respect her yet I can't respect anyone who treats me the way she does. If we have a disagreement and we try to talk it out she...
    Saphic33 Saphic33 26-30, F 1 Response 4 hrs ago

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    I will have to wait for the positive people's story endings. One can't change their life until one wants to. Maybe, the love I have is only in my imagination? There were days of...
    redribbonbook redribbonbook 46-50 3 hrs ago

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    I have scars, which came after from some kind of infection. Its facial scars, on both sides of my cheeks. Its over 5 years ago now, and I still struggle with them. The worst part...
    melikebacon melikebacon 22-25, M 2 hrs ago

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    I used to be bulimic. It all started becasue of a guy I was dating. He thought I should lose a few pounds. I only weighed 125 pounds at the time. I thought I was in love so I...
    karidenley karidenley 18-21, F 58 mins ago

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    This is in regards to EP user badcaseofthebefores If you have the time and the inclination Please read one of 'her' posts called 'I am a Meat Eater'.... Then read my response. Now...
    blackinc blackinc 70+, M 8 hrs ago

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    I have. I was ashamed at the times but now that I look back, I'm glad I did because it brought upon a feeling I don't want to feel again.
    clamthatjams clamthatjams 22-25, F 1 Response 8 hrs ago

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    EP has really screwed up my sleeping, because several nights in a row I have stayed up until ungodly hours waiting to talk to person, I thought was special. However I am wondering...
    RebekahWriter13 RebekahWriter13 31-35, F 4 Responses 8 hrs ago

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    I actually have three, or four with my grandmother's dog. They are a Staffordshire Bull Terrier, Cocker Spaniel, Bichon Frisé and Cavachon. It gets a bit mad at times.
    Sam1189 Sam1189 22-25, M 6 hrs ago

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    Every night, I have problems sleeping. I spent most of the night tossing and turning, when I finally feel like I can go to sleep usually about 7 am, my phone starts ringing so I...
    Mr504 Mr504 36-40, M 1 Response 5 hrs ago

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    I have an accent, New Zealand accent, it's so weird
    mattys1 mattys1 18-21, M 1 Response 5 hrs ago

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    Major guilt. Have I been a good influence being gay ?
    JoshM1974 JoshM1974 36-40, M 5 hrs ago

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    Major guilt 😣. Have I been a good influence being gay ?
    JoshM1974 JoshM1974 36-40, M 5 hrs ago

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    Well I'm an Aussie guy - so I have an Aussie guy accent :)
    joe33800 joe33800 41-45, M 4 hrs ago

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    I have a southern accent and it makes it difficult when you travel and try to order something. lol
    countryguy30 countryguy30 22-25, M 2 Responses 4 hrs ago

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    My girl was always loving, sweet, honest, helpful, and respectful! Now, she would rather confide in strangers than her own mum and she told someone I am stupid! What have I done...
    sailnude sailnude 41-45, F 7 Responses 4 hrs ago

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    I swear I have some weird accent due to the the 4 languages I speak. arghhh I want my British accent back.
    Guanabana Guanabana 18-21, F 1 Response 4 hrs ago

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    I have the right to change my user name anytime I want and I will so hold on, it`s gonna be a bumpy ride lol. :-)
    ooooAFTIELoooo ooooAFTIELoooo 41-45 1 Response 4 hrs ago

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    I loved my long hair! I miss it everyday. My mum literally bitched to me all last summer! From June to August. I love my mum so I'd do anything to make her happy. Thought I'd share...
    Alex033 Alex033 16-17, M 3 hrs ago

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    This morning when I woke up, I stupidly went through my pockets and took out my eye drops. I had like no sleep at all and took it out. It was in his car. Now I have to stop smoking...
    JamesGrey19 JamesGrey19 18-21, M 2 hrs ago

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    I lived in Australlia for a while and came back to America with an Australlian accent. I love having the accent, but I have a hard time speaking without it.
    seegson2658 seegson2658 16-17, M 1 Response 2 hrs ago

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