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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. 63 People

    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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    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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    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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    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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    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 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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    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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    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'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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    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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    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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    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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    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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    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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    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 2 days ago

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    It's real hell to live with it.I can't make friends,i have hard time talking to some people,i avoid eye contact,i walk around in circles all the time,i shake my hands,twirl my...
    00pleasehelpme00 00pleasehelpme00 18-21 1 Response 10 hrs ago

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    nothing has changed since all of this begun...every effort i make to return to god only makes things worse...i have prayed, tried to stand on faith, cried[still do] begged and...
    brokenhope4ever brokenhope4ever 46-50, F 2 Responses 9 hrs ago

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    I have struggled with deep depression and anxiety since the age of 12. Right now it seems to be particularly worse. I've been seeing a psychoanalyst for the past 9 months and it...
    Omchandrayanamaha Omchandrayanamaha 31-35, M 1 hr ago

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    I think it's fine to give up on your life. During my years especially the last 3 or just 2.5 I've made significant progress in not so much achieving success but achieving peace. As...
    Thomasjcox Thomasjcox 18-21, M 1 Response 1 hr ago

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    I really need to tell this story without revealing who I am. Thank you for reading if you are and thank you ep for letting me let it all out. It's a long story and I really can't...
    seabird9 seabird9 16-17, F 2 Responses 21 hrs ago

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    How do you find a happy? What is a happy? People say get a hobby it makes you happy.yes I have this disorder I think but I am self diagnosing myself people think I have bipolar and...
    char3249 char3249 18-21, F 21 hrs ago

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    Still in school, feeling stuck. This feeling is old now, its been a part of me for so long. A new feeling has come around though. Lately I've felt disconnected from everyone, like...
    John992 John992 22-25, M 21 hrs ago

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    The most amazing place I have been to after visiting many countries. They have so much culture and such warm people, the beaches are amazing and they just seem so content with life...
    SumoN87 SumoN87 26-30, M 21 hrs ago

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    I'm CJ from Alabama. I'm 15 years old. I was straight with a girlfriend, but I've recently had gay fantasies. I've imagined making love to a cute and sexy bottom boy. I just wasn't...
    cjfrombama cjfrombama 13-15, M 2 Responses 20 hrs ago

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    Sometimes we forget what we do have because were always looking at what we don't have
    willowknight willowknight 22-25, F 2 Responses 19 hrs ago

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    I literally have no life what so ever, I have been going through a tough time with depression latey and the only time I interact with people is on EP, when I was 17 I was in a real...
    Youmeansomething Youmeansomething 18-21, M 18 hrs ago

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    Do not read or scroll down first!!!!! WOMEN! Is it true? :( Do we men always have s3x on our minds? Is this all you think about us?? *makes a sad face* OK! B4 scrolling down...
    Sazzio Sazzio 22-25, M 4 Responses 17 hrs ago

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    There is a part of me who thinks this is just too good to be true. I still miss my ex and of course I am sad...but i am been released from the feelings of utter and complete...
    Beckarae Beckarae 31-35, F 1 Response 15 hrs ago

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    I was 11, the only person who sees me naked is my lil brother at the time, we were close and i saw him too. One time when I was waking up I felt pain on one of my balls and I then...
    Roan1990 Roan1990 22-25, M 1 Response 15 hrs ago

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    My sister is such and narcissistic idiot that it pains me to be around her. She blames everyone for her horrible lot in life and believes people owe her things. She whines about...
    HigherCalling HigherCalling 22-25, F 1 Response 15 hrs ago

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    So about three weeks ago I got this odd pain that went from my neck into my left scapula area. I went to the chiropractor and had an adjustment. Felt somewhat better for just a...
    ornursetab ornursetab 41-45, F 14 hrs ago

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    I really have a dysfunctional family. It was an arranged marriage for my parents. My father married my mother out of greed. My mother is a high ranking government official and...
    Kurecca Kurecca 22-25, M 1 Response 14 hrs ago

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    I am. 45 years old, throughout my childhood, I would have dizzy spells and blackouts, doctors said I was making it up for attention. At 18, I had a serious attack, heart began...
    i1u4eel2 i1u4eel2 41-45, M 14 hrs ago

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    It may sound complete B.S so you are warned in advance. Still want to read? OK then. Knowing that I don't have the valid means to defends my actions, my point of view or my logic...
    YMITheWayIM YMITheWayIM 36-40, M 12 hrs ago

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    My BDD was under control for one month and now it's back again. It was triggered after looking at my Facebook profile picture. At the time I uploaded it I really liked how I looked...
    fluffyunicorn fluffyunicorn 18-21, F 1 Response 12 hrs ago

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    This is my blessing. I love gardening, nothing better than fresh food you have put the time and energy to grow...I grew with a very big garden, always fruit and vegetables to be...
    quianominorleo quianominorleo 36-40, M 12 hrs ago

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    I Am Getting Bored Of Humanity And myself. All of it. I don't want to act. Or to step up to the plate and "become" something. I just want to chill out. And be whatever I am. I feel...
    brushfirefairytales brushfirefairytales 26-30, F 12 hrs ago

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    Here is a strange one, I don't know if anybody here has experienced something similar...? I keep having a recurring dream of a place that I know for a FACT I have never visited...
    Phaedrus1975 Phaedrus1975 36-40, M 2 Responses 8 hrs ago

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    I haven't in a while though. Life's been so good lately and I don't plan on thinking about it ever again. But when I was younger I did. I've thought about it seriously three times...
    genericidiot genericidiot 16-17, F 1 Response 7 hrs ago

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    Wow...Just a bleep of a journey. Here's my story. I was working at a doctor's office in an eyeglass store. January 2013 came around. I started noticing increasing pain in my lower...
    Slayme Slayme 36-40, F 1 Response 6 hrs ago

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    So I'm 18 and still live at home. My parents have always been really strict. Like CRAZY strict! I've lost count of the amount of spankings I've gotten, how many times I've been...
    Fluffyful Fluffyful 18-21, F 3 Responses 5 hrs ago

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    Hi guys. I'm 22 years old. The History with my girlfriend and I: We dated briefly in high school before she went off to college. She's a girl who is well kept and doesn't look...
    daveR80 daveR80 22-25, M 1 Response 5 hrs ago

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    If you have a bunch of children, you don't have any clue on how to raise them, then all you are accomplishing is creating future psychology patients. Anyone can have sex and...
    lifelifeishard lifelifeishard 46-50, M 4 hrs ago

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    hiya! I'm 16, and I have congenital cholesteatoma. I've had them since I was born (duh) and I was actually that one kid who was the youngest to have one removed, go me! Articles...
    janelisbet janelisbet 16-17, F 1 Response 4 hrs ago

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