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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

    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 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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    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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    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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    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 4 Responses Sep 17, 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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    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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    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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    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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    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'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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    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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    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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    Huh??

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

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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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    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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    Related Experiences

    ...not yet and hope not, but they are hinting at it. It started with a diagnosis of stenosis, poor walking and back pain, a laminectomy with no resultant improvement in walking...
    Isaac6 Isaac6 61-65 Sep 19

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    Oxfam: 85 richest people as wealthy as poorest half of the world As World Economic Forum starts in Davos, development charity claims growing inequality has been driven by 'power...
    sogdianrock sogdianrock 51-55, M 3 hrs ago

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    Something I wrote to him, although I didn't send it. Thank you. I have a lot of things to thank you for. Thank you for showing me how to love and supposedly be "loved". Thank...
    weightingforhappiness weightingforhappiness 18-21, F 3 hrs ago

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    I have struggled for years with depression, anxiety, and PTSD, all of which led to my struggle with self harm. I have done a lot of work over the years to develop coping skills and...
    katnoelle14 katnoelle14 18-21, F 4 Responses 2 hrs ago

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    After high school, and years later, I would see people here and there and talk to them. Then they would tell me about some people and how they were doing etc. Next thing I know...
    DraygenD DraygenD 41-45, F 9 hrs ago

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    That would have proved problematic very much indeed.. Haha you nutbag.
    PoeticMute PoeticMute 31-35, M 8 hrs ago

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    Someone snapchat with me Im a sexy 21F and also have needs hihi username is Natalie321x
    Natalie321x Natalie321x 18-21, F 8 hrs ago

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    as "a child", I'd get Excruciatingly PAINFUL headaches.... From the presence of Nicotine. I wasn't "as knowledgeable" Then about Second Hand Smoke as I am NOW.... so I'd 'Wonder...
    desireindisguise desireindisguise 56-60 7 hrs ago

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    I just woke up from an awful nightmare and I'm pretty sure I'm having a mental breakdown. See, I have this huge blister on the back of my heal (from my skates) that turned into a...
    nsz45 nsz45 13-15, F 2 Responses 6 hrs ago

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    Someone snapchat with me Im a sexy 21F and also have needs hihi username is Natalie321x
    Natalie321x Natalie321x 18-21, F 1 Response 6 hrs ago

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    More content marketing hacks that will change your life The longer you work in the SEO and content marketing industry, the more hacks and gems you’re likely to come across. These...
    yunicevalu yunicevalu 36-40, F 6 hrs ago

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    Someone snapchat with me Im a sexy 21F and also have needs hihi username is Natalie321x
    Natalie321x Natalie321x 18-21, F 5 hrs ago

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    Sometimes these vague scenes appear at the edge of my consciousness where something or somebody come up from the side with a bat or a club like they about to smash my computer up...
    VI55555 VI55555 31-35 4 hrs ago

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    I have 4 so far. "Carpe down" on my right bicep , my sister's name on the outside side of my right forearm, the initials of myself my parents and my sister on the Inner part of my...
    mattywheels25 mattywheels25 26-30, M 4 hrs ago

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    I don't use it much but do have it
    Masterlicks Masterlicks 26-30, M 4 hrs ago

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    Someone snapchat with me Im a sexy 21F and also have needs hihi username is Natalie321x
    Natalie321x Natalie321x 18-21, F 2 Responses 3 hrs ago

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    So nervous, haven't been successful in the past but hopefully this will be the one :)
    charlie4edwards charlie4edwards 16-17, F 4 Responses 3 hrs ago

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    I have got multiple scars, twelve in total.
    charlie4edwards charlie4edwards 16-17, F 1 Response 3 hrs ago

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    To my friends it may seem that I am away sick a lot and when I am at school I don't look sick, because I have chronic pain along with multiple other symptoms. The reason for the...
    chicky001 chicky001 16-17, F 1 Response 3 hrs ago

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    I have 8 little chickens! (Two of them being quite big) two are red island browns Flo and Flora then there's Puff, Psycho, Elwood and Jake ( the blues brothers) and Velvet and...
    charlie4edwards charlie4edwards 16-17, F 1 Response 2 hrs ago

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    Governments here is raising the electric bills with 15% to help pay off some debts. Meaning like 50cents more per kilo watt. And my people began to riot.....are they just nagging...
    rukesh3 rukesh3 22-25, F 2 Responses 2 hrs ago

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    She was almost 4 years old when I was born. According to her, she was not jealous nor threatened. On the contrary, she's always wanted to be a protector, someone who was going to...
    VishkaB VishkaB 18-21, F 2 hrs ago

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    Someone snapchat with me Im a sexy 21F and also have needs hihi username is Natalie321x
    Natalie321x Natalie321x 18-21, F 1 Response 1 hr ago

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    Yppp all the day i'm awake wtf i need sleep but i have gym
    hmkspain hmkspain 16-17, M 1 hr ago

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    i don't need you, i have myself.
    Chasemanning Chasemanning 13-15, M 2 Responses 1 hr ago

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    It's somehow killing me inside. I lied about something huge - no, worse, i pretended. I don't know what made me do it. somehow there was an idea that popped into my head and i did...
    happylifesaver happylifesaver 18-21, F 56 mins ago

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    I have let something that was said weeks ago affect how I feel now. My mind and heart are in conflict. Do you think it's possible to have someone be attracted to you emotionally...
    cjohnson1983 cjohnson1983 31-35, F 1 Response 52 mins ago

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    Job Interview in 20mins I'm so nervous I'm waiting for her to come where we set up to meet but I have no clue what she looks like and I'm going to do horrible in this interview and...
    savy1063 savy1063 18-21, F 4 Responses 48 mins ago

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    We both have a kikster account
    LSCouple LSCouple 26-30, F 2 Responses Sep 2

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    I have worn and own many pairs of woman's shoes. And have now lived in most continents and trust me the conversions are still annoying. Best not of advice is to try them on before...
    SophieSeal SophieSeal 26-30, T 4 Responses Sep 2

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    Hi im new here... im not the one who has an alcohol problem but my boyfriend.. I would like to hear some advice from this forum.. because our relationship is really getting shakey...
    septemberlane septemberlane 36-40 1 Response Sep 2

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