Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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, 2014

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Huh??

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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    I was officially diagnosed with IIH yesterday. 10 days ago I went to bed with a really bad headache and woke up at about 2 in the morning with severe vomiting. I was then taken to...
    Hannarr Hannarr 18-21, F Jan 12

    Your Response

    Cancel
    I was diagnosed Sep/14 w/cervical stenosis. This numbness in my hands happened quickly, I have severe neck pain, and burning in my legs and feet. I had an MRI completed and my...
    Stevegriffey3 Stevegriffey3 41-45, M Dec 28, 2014

    Your Response

    Cancel
    Anyone else have monologues with themself when they are alone in the house? I always do this. It's not something i have even thought about until now. It's really weird. I think i...
    ThinkingCat ThinkingCat 18-21, F 1 Response 7 hrs ago

    Your Response

    Cancel
    My story is an odd one im sure. I was conceived via an anonymous ***** donor who is my biological father, so someone i have never met and can never meet. My mom had me this way...
    samboooo samboooo 22-25, F 6 hrs ago

    Your Response

    Cancel
    So I like this girl who is a friend of a friend, and she used to like me back. But then I did some **** that I'm not proud of and she found out through the grapevine. I didn't have...
    rssooch rssooch 18-21, M 6 hrs ago

    Your Response

    Cancel
    The fact that he's moved on so easily, that he's so able to say to me that he has a new girlfriend, it is killing me inside. I try to act strong, put a smile on my face and wish...
    grace97eun grace97eun 16-17, F 4 Responses 4 hrs ago

    Your Response

    Cancel
    So I have been on a journey trying to quit my addictions. So far I have quit smoking cigarettes(weed is a different story). I have quit coffee(this was sooooo hard and still is...
    orcore orcore 36-40, F 1 Response 2 hrs ago

    Your Response

    Cancel
    "We were once too ******* happy. Our hearts were filled so much love than the world can contain. This is why reality decided to punish us. Because happiness couldn't exist without...
    butterfliesndut butterfliesndut 18-21, F 2 Responses 39 mins ago

    Your Response

    Cancel
    In my current situation I can't make a move, but I'm running out of time to have any real relationship. Plus I have no idea if she feels that way about me
    AnthonyC123 AnthonyC123 18-21, M 7 hrs ago

    Your Response

    Cancel
    I've always seen coworkers have affair after affair. So many "happily married" people having affairs with other "happily married" coworkers. I had a crush on one happily married...
    bongbabexo bongbabexo 31-35, F 7 hrs ago

    Your Response

    Cancel
    I have always grown up nudist. We just don't get dressed in the morning, its no big thing like we have to be naked all the time n stuff. My best friends (and my brother/sisters...
    purplelimeboyy purplelimeboyy 13-15, M 1 Response 7 hrs ago

    Your Response

    Cancel
    Since my anaesthetic several days ago, my brain has been going crazy especially when I sleep. I have so many dreams in a night, but this one was a special one when I had a nap. I...
    uggh uggh 22-25, F 1 Response 5 hrs ago

    Your Response

    Cancel
    I have a terrible experience with family members my mother was on the phone once and I heard her put my family and myself down to my sister in law she seems to like to talk about...
    Bella70 Bella70 41-45, F 1 Response 5 hrs ago

    Your Response

    Cancel
    I'm 26 and have been single for my entire life. I was close to a relationship once when I was 22 and had my first kiss; but then he decided to go back to his ex, so ever since then...
    worrier07 worrier07 26-30, F 6 Responses 3 hrs ago

    Your Response

    Cancel
    My father has suffered from anxiety and depression most of my life. I am trying to find out what his trigger points are so I can help him try not to freak out. I know that his...
    ColumbiaTiger ColumbiaTiger 41-45, M 1 Response 1 hr ago

    Your Response

    Cancel
    People are always telling me, my voice is really charming. I often wonder about what some of my EP friends voices might sound like as well. Being totally blind I don't even have...
    magnum64 magnum64 46-50, M 43 mins ago

    Your Response

    Cancel
    Today I had to run a mile and I wore knee high socks to school, so instead of asking to go to my locker and being that one stupid person, I just decided to run (and fast) without...
    noaaaaa noaaaaa 13-15, F 9 hrs ago

    Your Response

    Cancel
    I can't look at myself without wanting to cry anymore... **** this... I'm going to start purging as soon as my lip piercing heals... I need to lose 30 more pounds and I WILL get...
    MrCutBleedSmile MrCutBleedSmile 18-21, M 1 Response 9 hrs ago

    Your Response

    Cancel
    Ever since I can remember, I've always had a lot of trouble talking to people. I only had one friend up until my freshman year in high school. I didn't even know what social...
    ElvenQueenKayla ElvenQueenKayla 16-17, F 2 Responses 9 hrs ago

    Your Response

    Cancel
    I have had trich for some time... I was a young child, and I would pull out my eyelashes and eyebrows. Right now, I mostly pull out my eyelashes and the hair on my head. It's not...
    ElvenQueenKayla ElvenQueenKayla 16-17, F 1 Response 8 hrs ago

    Your Response

    Cancel
    Because your journey to a certain point in your life has taken you through a few twists and turns, you may be questioning whether you are on the right track. Since there have been...
    pyeito pyeito 31-35, M 8 hrs ago

    Your Response

    Cancel
    I have two and will be getting a third
    1poker 1poker 22-25, F 1 Response 8 hrs ago

    Your Response

    Cancel
    I was attracted to a man that worked with my dad when I was very young, people already in relationships, certain relatives. NOT NORMAL and very frustrating. And I have a hard time...
    Tabooyou24 Tabooyou24 22-25, F 3 Responses 8 hrs ago

    Your Response

    Cancel
    I am not sure if this is a form of sleep paralysis, but I have once woken up from a nightmare in which a woman stabbed me in the spine with a large needle. I woke up sweating and...
    x3SilverWincanx3 x3SilverWincanx3 18-21, F 7 hrs ago

    Your Response

    Cancel
    Its been 3 years since my best friend and first love came into my life.She was the sunshine that lit up my dark night.She Made me forget all my hardships back home.we did all kinds...
    Adrianaung Adrianaung 16-17, M 7 hrs ago

    Your Response

    Cancel
    Lmao!!! I was in the grocery store yesterday. OOH look! A new ketchup bottle with 25% extra, Cool! I took the stuff I was going to buy to the counter (keep in mind that the...
    InnocentPigeon InnocentPigeon 70+ 1 Response 7 hrs ago

    Your Response

    Cancel
    Crazy neighbor swears and yells abuse at us for no reason. If her dog barks she screams abuse about our cat even though it's usually inside and not anywhere near the dog! She hung...
    Amillionstars Amillionstars 36-40 1 Response 7 hrs ago

    Your Response

    Cancel
    Last night I dreamed I was looking for someone. I had a bag full of stuff, and I reached in to find something to help me find him. I pulled out a bible and opened it at a random...
    RoyalCrystalPalace RoyalCrystalPalace 26-30, M 5 hrs ago

    Your Response

    Cancel
    I enjoy joking on here ,but I do take other things seriously ....I have a family and on occasion friends haha when I'm not being a hermit .....* serious face *'
    Chernobylplayground Chernobylplayground 36-40 5 hrs ago

    Your Response

    Cancel