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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

    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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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    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 1 day 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 Aug 21

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    I don't have a best friend. Plain and simple. I have plenty of friends, and don't have problems making them. But I think I've been making all the wrong types of friends. The ones...
    jolieember12 jolieember12 18-21, F 2 Responses 19 hrs ago

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    Ok this a long text to my husband I felt like I needed to let this out. Excuse my language also, I only do it when I'm mad. I ******* spend 42 hours in the hospital 42 trying...
    Melissa0326 Melissa0326 18-21 1 Response 8 hrs ago

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    Ghostly Impressions By Paul Dale Roberts, HPI Esoteric Detective Halo Paranormal Investigations - HPI International https://www.facebook.com/#!/groups/HPIinternational/ Paranormal...
    PaulDaleRoberts PaulDaleRoberts 51-55, M 8 hrs ago

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    It all started out ordinarily. As I started in college, I got in class with this girl named Rosalina. She was this cute/nerdy type, often talking about games and anime. She was the...
    Zeddion Zeddion 18-21, M 6 hrs ago

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    "THE MUD HOLE - The Story of a Premonition" Thursday evening to Friday morning, 1st November 2013 (after Halloween) I woke up, after a disturbing dream. In my dream, there was...
    TNTandCHOCOLATE TNTandCHOCOLATE 31-35 6 hrs ago

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    It all started out ordinarily. As I started in college, I got in class with this girl named Rosalina. She was this cute/nerdy type, often talking about games and anime. She was the...
    Zeddion Zeddion 18-21, M 1 Response 5 hrs ago

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    He went to play pool at 9 pm. It is now 1:30am. Wtf? How can I not be upset at this? Be a grown man and let me know you are ok and when you are coming home. Just great. Just when...
    txhouswife42 txhouswife42 41-45, F 2 Responses 20 hrs ago

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    I'm really, really bored with iPhone's now, especially my own dull, dreary and plastic 5C. I'm very passionate about phone's, so when the 5C came out before the 5S, the impatient...
    Ryanholmes20375 Ryanholmes20375 18-21, M 1 Response 19 hrs ago

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    My system is a house. We all live in this house, with our own rooms (bedrooms) and communal rooms. Like the lounge room and library. We also have something like a prison, where the...
    TheDylanWorld TheDylanWorld 13-15, M 1 Response 18 hrs ago

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    My system is a house. We all live in this house, with our own rooms (bedrooms) and communal rooms. Like the lounge room and library. We also have something like a prison, where the...
    TheDylanWorld TheDylanWorld 13-15, M 6 Responses 18 hrs ago

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    service provided in this lodge is fantastic, they provide the very best in customer care and a superb breakfast, almost nothing is ever a difficulty to them and with only some area...
    Jeffrybup Jeffrybup 31-35, M 1 Response 17 hrs ago

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    Now we have partnered with TripAdvisor, the globe's most significant journey Local community, to provide you even more traveller critiques.Website VIEWERS: As everyone knows...
    Willy52yt Willy52yt 31-35, M 1 Response 17 hrs ago

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    Sometimes I wish I had friends but at this point in my life I don't have the time or energy for a friendship. I always give so much to my friends.. I'm honest, thoughtful, helpful...
    xobrowneyedgirly xobrowneyedgirly 22-25, F 7 Responses 17 hrs ago

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    Does this ever go away or get better? I was diagnosed in February and now I'm 19 and still go to a therapist...well as of late I've been seeing a psychotherapist. I have dysthymia...
    bisexual95 bisexual95 18-21, F 16 hrs ago

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    When I said I promise I would change...lied... When I said I have a dream to be a writer, it's not mine I've stolen it from my sister. When I chose Journalism back in university...
    Quentine Quentine 22-25, F 1 Response 16 hrs ago

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    He left his work walking all by himself. His hand on his pocket. I love the way his big *** wiggle in them jeans. He does not even know that his back and shoulders and head looks...
    ForeverSahour ForeverSahour 26-30, F 15 hrs ago

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    In the 8th grade my last class of the day was English the first semester and my class wasn't far from the school's back gate to exit. I dreaded going out that way as this guy...
    figureoutwhothisis figureoutwhothisis 16-17, M 1 Response 15 hrs ago

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    I would give anything to have a vagina its the only thing i need to be the woman i want to be i hate trying to hide what i have with a vagina i wouldnt have to tuck
    AliciaSissy AliciaSissy 51-55, T 1 Response 15 hrs ago

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    Ladies, if you are going through verbal abuse and he constantly screams at you, you do not have to deal with that. Disrespecting you, controlling and etc. Ladies, we have to...
    DeniseMarie12 DeniseMarie12 26-30, F 15 hrs ago

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    Not since I was at school have I had one, so I was very surprised when it happened, she is very special, and I wish that I could make her life better than it is, she has had some...
    Shamrock40 Shamrock40 36-40, M 15 hrs ago

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    3BHSD form of CAH, from what i can figure. i am also a hermaphrodite, or i guess, a viralized female. either way it causes alot of confusion and emotional discord in me. my...
    industria77 industria77 36-40, F 14 hrs ago

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    I don't shave, and I shouldn't have to. If I've got hair growing on me whether it's on my arms, under my arms, or on my v*gina, I know it's there for a reason otherwise I wouldn't...
    WinterIncandescence WinterIncandescence 16-17, F 4 Responses 14 hrs ago

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    In the light of the sun, is there anyone. Oh, it has begun. Oh Dear you look so lost, eyes are red and tears have shed, This world you must've crossed, she said... You don't know...
    SheAlwaysBelieved SheAlwaysBelieved 18-21, F 1 Response 12 hrs ago

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    My husband has been cheating on me with very young teenage prostitutes. We have been together 20 years. We are losing everything we worked for because of his drug, alcohol...
    taylorbubber taylorbubber 41-45, F 1 Response 12 hrs ago

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    Just had my first ever "That awkward moment". Been on holiday for two weeks, with no internet! In my head I was like "aww, I bet my friends are missing me." And "I bet I have tons...
    Th3DayDreamer Th3DayDreamer 18-21, F 2 Responses 11 hrs ago

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    I have a new crush now I known him for a year or sum and we do talk sometimes he told me yesterday that he was now single and I wanted to make a move soon but u don't want to ruin...
    Lolaa01 Lolaa01 18-21, F 10 hrs ago

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    I have a hard time in life and relationships in general because i have a really low self esteem, idk why this is, i just know its there and i can't do anything about it.. Ive tried...
    Cheesyboy Cheesyboy 18-21, M 2 Responses 9 hrs ago

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    Unfortunately I have none in real life, but I have a few nudists friends on E.P.
    Thesoutherner Thesoutherner 66-70, M 1 Response 9 hrs ago

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    Discovered by a family member, client, co-worker, or close friend on EP. I wonder how many people would be embarrassed by any of their posting on EP if they were...
    Jones47 Jones47 61-65, M 4 Responses 8 hrs ago

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