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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. 65 People

    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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    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 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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    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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    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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    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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    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 5 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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    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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    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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    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 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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    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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    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 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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    Related Experiences

    itried all the surgery route and ended up with a metal plate in my neck with no change in my condition..suffer with numbness in my whole body...with spinal stenosis...finally a...
    derelwebb derelwebb 51-55, F Nov 19

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    i cannot express the urgency to all ..to please try a chiropractor that uses alignment of the atlas of your spine and also uses an activator to align your spine ....out of the blue...
    derelwebb derelwebb 51-55, F Nov 19

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    I have liked this girl for 4 and a half years now. Actually it's much passed "like". I've had so many chances to make a move on her, but I was to cowardly to do so. I was too...
    yoomyman yoomyman 18-21, M 1 Response 22 hrs ago

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    It borders on a year now, that I have had nightmares almost every night. My mind has been plagued by insecurity... And with it, came the nightmares. I wish I had the typical...
    Lullacus Lullacus 22-25, F 1 Response 20 hrs ago

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    Please help. I'm currently experiencing dark thoughts, dark thoughts about just running away. I love all my Children but they have no respect for anything I have ever done for...
    RockingLikeAFetus RockingLikeAFetus 31-35, F 1 Response 19 hrs ago

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    Has anyone ever faced discrimination for having a tattoo? I have one down the side of my forearm, just some dainty writing (lyrics). Anyway, I had a job interview one hot day a few...
    Enna87 Enna87 26-30, F 5 Responses 18 hrs ago

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    to be honest i don't know how my life got this far off track. one minute im happily married the next i going thru a divorce and living with this "gift" that she gave me.... forever...
    livingpositively livingpositively 22-25, M 3 Responses 18 hrs ago

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    so, be and my mother have decided to do Black Friday for the first time... and well, K Mart opens up at 6:30 AM - and they have a sale : buy one pair of shoes/boots and get the...
    MeowOnMe MeowOnMe 18-21, F 6 Responses 16 hrs ago

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    My third anniversary on EP was in August 2014. I am a bit behind. You know how life keeps you busy. So it is time for me to share what I have learned in this past year. I hope you...
    PoetryNEmotion PoetryNEmotion 51-55, F 9 Responses 13 hrs ago

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    It's been a few months since joining The Experience Project, thank you to all who have visited and those who have kindly left comments & hearts. To be honest I lost the link and...
    Darklydancing Darklydancing 56-60, F 12 hrs ago

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    You tell me everything I have put you through.. But you don't acknowledge what you have put me through. This isn't a blame game but we act like it is one.. We are not right for...
    Nocturnallover Nocturnallover 18-21, F 1 Response 11 hrs ago

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    My mother is such a hypocrite. Usually I can just shrug it off but lately it's been getting to me. Today she yelled at me for finishing a bottle of root beer that she bought a...
    midnightdahlia midnightdahlia 22-25, F 10 hrs ago

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    i have cheated on my husband multiple times. we have been married for 3 and half year and I started cheating since last year. It was an arranged marriage and I got married really...
    idontknowwhatiwant idontknowwhatiwant 26-30, F 1 Response 10 hrs ago

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    you know what I don't understand? why people think JUST because someone gets pregnant, they HAVE to marry the father... This thought came up because my grandpa said since Miley...
    MeowOnMe MeowOnMe 18-21, F 3 Responses 10 hrs ago

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    Hey my names Alex, I'm 20 years old. I found out I have had Cholesteatoma in my right ear for YEARS now, I noticed this lump behind my ear Years ago I'm thinking maybe 6-8 years...
    alex123098 alex123098 18-21, M 2 Responses 9 hrs ago

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    I always have showers at random times during the day, so it's not uncommon for someone to visit while I'm in there. I think most of my friends have seen my boobs, by accident and...
    IrishHayley IrishHayley 22-25, F 5 Responses 9 hrs ago

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    Hey my names Alex, I'm 20 years old. I found out I have had Cholesteatoma in my right ear for YEARS now, I noticed this lump behind my ear Years ago I'm thinking maybe 6-8 years...
    alex123098 alex123098 18-21, M 1 Response 9 hrs ago

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    When I am in social situations my mind goes blank, I have nothing to say. Its as though the people around me are speaking a foreign language. I have no connection with the...
    xxlouisebaby xxlouisebaby 22-25, F 8 hrs ago

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    ..and all of the various beasts i have had the honour to know. BTW, i'm Canadian; we already had our thanksgiving weeks ago so this is not about being thankful, etc. etc. yadda...
    JenRhaine JenRhaine 36-40, F 7 hrs ago

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    I think i have an aura that pushes people away from me. Or maybe there is something about my appearance i don't know. Somehow people always think i don't like them , or that i don...
    antoneli antoneli 18-21, M 2 Responses 7 hrs ago

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    I think deep down all I have ever wanted was to have a special female friend I was in love with. Really sex without feeling has not interested me. I do enjoy being adored or found...
    Podcast Podcast 18-21, M 7 hrs ago

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    I do not have one best friend. I had have friends. Good, Better or Best.. they all I have in life. Crazy things? Indeed. Many many things. Can't say what.. it will scare many...
    Cowsir66 Cowsir66 41-45, T 1 Response 6 hrs ago

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    My life is so upside down, I fear for my own safety and sanity. I left my wife for a girl, I was wrong, I know this.. I left on promises that her feeelings were real, I told my...
    lerz2000uk lerz2000uk 31-35, M 1 Response 6 hrs ago

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    I just realized how little respect I have for **** stars, strippers and prostitutes. I used to have respect for prostitutes, cause I thought what they were doing had a better...
    MeowOnMe MeowOnMe 18-21, F 6 Responses 4 hrs ago

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    My experiences growing up haven't been good ones I was befriended a lot and didn't have anyone to take care of me I came from a broken family and didn't care much about myself. My...
    Bella70 Bella70 41-45, F 3 hrs ago

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    I've never have been I'n one and ill probably never have one and depressed I don't have one. I feel that I'm going to be single forever and never get married or have a wife and...
    jstaples534 jstaples534 16-17, M 1 Response 2 hrs ago

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    With the good time I had yesterday with my boyfriend and today being Thanksgiving, I am reminded of why I'm so grateful to have him. I'm grateful that I finally have a man in my...
    TyThe90sKid TyThe90sKid 22-25, F 2 hrs ago

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    For those who have anxiety such as Hypochondria. Please allow me to give you some advice.. I know what it's like to constantly worry over numerous of things that have to do with my...
    Alexandra1996 Alexandra1996 18-21, F 1 Response 2 hrs ago

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    I was 50 y/o when my Dr. told me I have terminal cancer. It was like setting my hair on fire and trying to put it out with a sludge hammer. Up until that point, I always knew I was...
    Steveduster4050 Steveduster4050 51-55, M 2 hrs ago

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