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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. 62 People

    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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    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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    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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    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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    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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    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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    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 2 Responses Jul 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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    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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    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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    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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    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 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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    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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    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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    Related Experiences

    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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    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 Jul 30

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    I have been in a relationship for only 3 months with my boyfriend. We are both in our mid 30's and currently trying to work on a long distance relationship. In the first month...
    1234dogma 1234dogma 31-35, F 3 Responses a week ago

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    I was diagnosed at 3 days old with this condition. When I was younger I never saw myself as different and could do most things any other child would do. Each year I would go get my...
    Karate100 Karate100 18-21, F 18 hrs ago

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    I am a 46 yr young female who was diagnosed initially with ET during a random blood test - platelets 1mill ++ then with MF a few weeks later through a bone marrow biopsy. I took...
    jamieh3 jamieh3 46-50, F Jul 22

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    I have no idea if this really has anything to do with anxiety, and I also have no idea if it's asthma or some other medical thing, hoping someone here can help me since I'm so...
    sugarcakes143 sugarcakes143 18-21, F 5 Responses Jul 22

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    I have no idea if this really has anything to do with anxiety, and I also have no idea if it's asthma or some other medical thing, hoping someone here can help me since I'm so...
    sugarcakes143 sugarcakes143 18-21, F 1 Response Jul 22

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    I want to have a boy first. They can be a big brother and protect their sisters.
    MakaylaCorlisa MakaylaCorlisa 13-15, F 1 Response Jul 22

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    I have no idea if this really has anything to do with anxiety, and I also have no idea if it's asthma or some other medical thing, hoping someone here can help me since I'm so...
    sugarcakes143 sugarcakes143 18-21, F 1 Response Jul 22

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    Help! Haha I have a long haired German shepherd male. His name is Grizzly and he's a little over a year old. But he has really bad separation anxiety. He is attached at the hip to...
    Bop2012 Bop2012 18-21, F 2 Responses Jul 22

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    Almost a year ago I was raped. At the time I had moved out of my Mom's house and started living with my at the time boyfriend. At the hospital when I was able to see everyone and...
    Christuh Christuh 18-21, F 3 Responses Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response Jul 22

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 2 Responses Jul 22

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    This is a follow up for my story "what doesn't kill you makes you stronger" My name is grace. I am now 16 years old and I just got my correction surgery last week! I had a muscle...
    marinagrace marinagrace 13-15, F 1 Response Jul 22

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    Hello my names Julia and I am 19 years old. I was diagnosed with hsv 1 last week. A week or two prior to my out break and diagnosis my boyfriend brought up that he had a "heat rash...
    jujubear47 jujubear47 18-21, F 1 Response Jul 22

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 1 Response Jul 22

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 3 Responses Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 3 Responses Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M 1 Response Jul 22

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    I get really angry so easily... I'd be laughing and someone would say something I didn't like and I'll get so angry! If I debate something with someone, I get so mad i have to...
    faithandfree faithandfree 16-17, F 1 Response Jul 22

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    I have been writing on this site a lot lately and tonight he asks who the hell do you keep texting?! I told him I'm just responding to posts which is partly true. But now I feel...
    tlee5001 tlee5001 22-25, F 8 Responses Jul 22

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    Like today i do t know why i have so much on my mind that i cant sleep even though i am tired i cant
    desirejanice desirejanice 22-25, F 2 Responses Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M Jul 22

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    In your life you meet people who bring much joy to your life and also people who bring much misery to it. I am very unfortunate because I've had more people who bring me misery in...
    morgan18365 morgan18365 16-17, F 1 Response Jul 22

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    Yes I have everything I should be thankful for -people who like me a lot and a comfortable home.I have a few good friends and my parents and sister.So I consider myself lucky.I don...
    restored87 restored87 46-50, F 3 Responses Jul 22

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    I have been doing this on the phone for years now and it doesn't get old when you do it for the first time with a stranger you don't know it just makes it that much more exciting...
    heartgun heartgun 26-30, M Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M Jul 22

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    hey all ! ... this is important and big. can i have a small time of yours, just little.. few minutes.. i sign up here around a year back to share my story with people and i did. i...
    heartless2 heartless2 22-25, M Jul 22

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