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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. 66 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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    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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    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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    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 41-45, F 5 Responses Sep 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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    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, 2014

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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, 2014

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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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    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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    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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    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'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 26-30 1 Response Apr 6, 2014

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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, 2014

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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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    Huh??

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

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    Weird things set me off and make me cry. I guess I'm sensitive like that. Avoid these subjects around me and we be cool.. For one, the word, '************'(mofo)...hate that. Hate...
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    I am 26 and have been struggling with pica for 20 years. When I was a kid (6 years old) I started to eat the stuffing out of couches. It started off as a little here and there but...
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    I have just recently found out that I am pregnant. Yes, I am excited. But, I'm also terrified because of the havoc pregnancy is already wreaking on my fragile emotional state...
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    I stole my boyfriend from someone else and now I am unable to trust him. We've known each other for a long time. I always knew he liked me but I friend-zoned him. After all, he...
    elocinitis elocinitis 26-30, F 1 hr ago

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    The pains you think you have when your younger, you really do have when your older.
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    Well, I finally put my big girl pants on and have been trying out going NC or LC with my NM and already got a text from her today stating the "Silence from me is Deafening". How do...
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    I am 59. I was diagnosed with an acoustic neuroma 2.1x1.6x1.4 cm almost 2 years ago. Have mild tinnitus and some hearing loss and have been leading a more or less quiet normal life...
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