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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

    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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    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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    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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    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 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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    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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    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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    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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    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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    Huh??

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

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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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    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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    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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    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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    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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    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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    Related Experiences

    Hi!! I am new here and not sure how this works!!! I'm looking for anyone who can tell me any kind of treatment that works for idiopathic edema!!! Any help is welcome!!!!
    carlalynnrn carlalynnrn 36-40, F Dec 11

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    So I think I finally found a natural, over the counter treatment for idiopathic hypersomnia that works for me. Its still early and I don't want to get my hopes up but so far it...
    Elmindrida Elmindrida 26-30, F Dec 1

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    I am almost 40 years old and have been dealing with horrible headaches for 16 years now. I have tried all kinds of doctors, treatments, medications, even various surgeries...
    JunieMarie JunieMarie 36-40, F 1 Response Dec 7

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    Just this weekend I was out with colleagues at a very busy pub and as usual found it very difficult to follow the conversation. I have always struggled when in noisy environments...
    ProfessorDrew ProfessorDrew 51-55, M 3 hrs ago

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    My childhood was a depressive phase. Not so much when we were where we live but when we went to our relatives' place during vacations. My mom's sisters are very conservative and...
    unsettledkp unsettledkp 18-21 11 hrs ago

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    2, both female. I've had 2 different cyberstalkers in my internet lifetime. They were both female and both under the age of 25. Stalking is a very serious thing. Cyberstalkers are...
    DarkwingGoslyn DarkwingGoslyn 31-35 6 hrs ago

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    Well where to start? I guess it's always better to just put it out there....I was recent tly told I have liver disease and they think it's acute and that means it showed up without...
    Squeekarose Squeekarose 31-35, F 1 Response 6 hrs ago

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    It's about time I tell you guys about some of my problems to know me better. I have a specific crustacean food allergy. I can eat deep fried shellfish with crisp crust, but not...
    TetraZL TetraZL 13-15, F 5 hrs ago

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    I keep my circle small due to many reasons , but mostly because I had a real life stalker in my town who almost killed me . I don't ever mean to hurt anyone....I'm just private...
    Sjenka Sjenka 36-40, F 4 Responses 5 hrs ago

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    Every so often I stop and think how lucky I am to have met some really cool, unique and truly amazing people.  This is for several of them.  If you read through this list...
    pineychick pineychick 31-35, F 1 Response 1 hr ago

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    So this is a dream that i had about a week back. It felt so real and the content is kinda weird haha. So here goes: It was climbing period in school. Basically, a school period...
    Shimmerz479 Shimmerz479 13-15, F 12 hrs ago

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    You know I do find it funny when I come to this group to read stories. I find it funny because people my age who have no friends are rarely actually alone like me. The majority...
    ForgottenMale ForgottenMale 26-30, M 12 hrs ago

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    I love my "dent" my friends and I always joke about it however i wish I could wear bras that fit me properly. I'm a C/D cup but I have to wear B and even then it doesn't fit right...
    Nicoleq Nicoleq 18-21 11 hrs ago

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    After really thinking through everything, about all of the moves I've made throughout the country, and where I am currently, I have pretty much next to no friends (in person). And...
    obscureriddle obscureriddle 22-25, F 4 hrs ago

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    I'd rather have both; which I have. I probably have too many acquaintances, honestly...but I consider only a small amount of them as my real, true, close, best friends.
    losingNemo losingNemo 13-15, F 55 mins ago

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    I have to tell you the reason why I am the way I am. I am the way I am (crazy) because I have something wrong with my brain. And yes, I actually do belong in a mental hospital...
    AleaAndLexi AleaAndLexi 13-15, F 13 hrs ago

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    When I was on vacation with my family there was a guys soccer team at our hotel with players from all over the world. After meeting them and spending a night club hopping I got...
    leex123 leex123 22-25, F 4 Responses 13 hrs ago

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    God tried to communicate with me. Sometimes when I talk to someone, I have this feeling, like if an angel is talking to me to try to make me realize that I'm in the wrong way to...
    TheBelovedMan TheBelovedMan 22-25, M 13 hrs ago

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    I hate it when people argue with me, and then end the argument by blocking me. Like. You blocking me without trying to finish the argument just takes all the fun out of it. like...
    MeowOnMe MeowOnMe 18-21, F 6 Responses 12 hrs ago

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    30 years old with not one friend. Never had any friends. Always was laughed at in school, called ugly, etc. Now I'm 30, married with 4 kids and my kids are my only entertainment. I...
    flawedperfectly01 flawedperfectly01 26-30, F 1 Response 12 hrs ago

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    All my life i've been trying to gain weight. Now that i finally did, i feel sad and depress about myself. Im 5'5" 110 pounds. I used to be 100 pounds. Everyone is saying that i...
    Unknown150 Unknown150 18-21, F 1 Response 12 hrs ago

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    I hate to admit it but it's true. I get really emotional at times and I don't know why. If some one says something mean or makes me really upset and fusterated I get so angry and...
    Emiry Emiry 18-21, F 11 hrs ago

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    I have four good friends but other than that I don't really know a lot of people being that I'm in the middle of no where and there is no school.
    Zoekosmopoulos Zoekosmopoulos 18-21, F 1 Response 11 hrs ago

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    I was out hunting alone and I was crossing a river when I fell and I fractured my foot so I crawled out and me and my family have this thing where if there is something wrong 3...
    Zoekosmopoulos Zoekosmopoulos 18-21, F 2 Responses 11 hrs ago

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    My jealousy issue is driving the best relationship i have in my life to the brink of an end. I just cannot trust. I've tried. I've been trying my hardest to change and try...
    SolitarySol SolitarySol 31-35, F 1 Response 11 hrs ago

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    To stay in touch!!! In real life and EP. I've been going through all my old messages and it's just so pathetic how many people I've dropped for no reason! I usually cherish...
    insidious2014 insidious2014 18-21, M 11 hrs ago

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    i love a girl with a few tattoos. i have some too. ask me and i may tell you about them ;)
    drachenReiter drachenReiter 31-35, F 3 Responses 10 hrs ago

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    I sometimes wonder what role love will play in my life and if I will be alone. But yes I am 17 and I haven't had a real "boyfriend" or my first kiss yet.
    Zoekosmopoulos Zoekosmopoulos 18-21, F 2 Responses 10 hrs ago

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    Okay so my dreams are getting weirder and weirder so much so that I can't even bring myself to write them on here because I'd be considered a sick sick disgusting person. I haven't...
    hecknope hecknope 16-17, F 3 Responses 10 hrs ago

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