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

    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

    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

    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 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

    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

    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

    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

    Huh??

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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    Related Experiences

    Hi!! I am new here and not sure how this works!!! I'm looking for anyone who can tell me any kind of treatment that works for idiopathic edema!!! Any help is welcome!!!!
    carlalynnrn carlalynnrn 36-40, F Dec 11

    Your Response

    Cancel
    So I think I finally found a natural, over the counter treatment for idiopathic hypersomnia that works for me. Its still early and I don't want to get my hopes up but so far it...
    Elmindrida Elmindrida 26-30, F Dec 1

    Your Response

    Cancel
    itried all the surgery route and ended up with a metal plate in my neck with no change in my condition..suffer with numbness in my whole body...with spinal stenosis...finally a...
    derelwebb derelwebb 51-55, F Nov 19

    Your Response

    Cancel
    i cannot express the urgency to all ..to please try a chiropractor that uses alignment of the atlas of your spine and also uses an activator to align your spine ....out of the blue...
    derelwebb derelwebb 51-55, F Nov 19

    Your Response

    Cancel
    I am almost 40 years old and have been dealing with horrible headaches for 16 years now. I have tried all kinds of doctors, treatments, medications, even various surgeries...
    JunieMarie JunieMarie 36-40, F 1 Response Dec 7

    Your Response

    Cancel
    I don't know if this is really true. It is a bit absolute. Depending on how I feel and what I need, ....friendship is a word that can have many meanings. Like the untrue story that...
    tryingagainII tryingagainII 56-60, M 8 hrs ago

    Your Response

    Cancel
    I haven't told the truth in a long time about my drug addiction. The last time I was clean was about 8 years ago and I'm not even sure that is true. My drug of choice has been meth...
    Goddess007 Goddess007 46-50 7 hrs ago

    Your Response

    Cancel
    I have a friend but not the kind i want, she is selfish arrogant and sometimes a b***h. and because of that i really feel like i have no friends. Before, i was prefere to be alone...
    manel2504 manel2504 18-21, F 1 Response 4 hrs ago

    Your Response

    Cancel
    What are your symptoms??? I wanted to stay home last night, yesterday was a long day, but I went into the hospital emergency room. I guessed I would be left in the waiting room...
    LadyGypsy LadyGypsy 36-40, F 3 Responses 2 hrs ago

    Your Response

    Cancel
    You were so close to me when you held the door open I could smell the freshly smoked cigarette on your skin. If I would have been facing you i would have been dangerously close to...
    vivaciousspirit vivaciousspirit 22-25, F 8 hrs ago

    Your Response

    Cancel
    I may write more about this later. I have written about it in other posts. I like this story topic because it does force one to look at one's life from a different perspective.
    tryingagainII tryingagainII 56-60, M 8 hrs ago

    Your Response

    Cancel
    Last night I went to dinner with some very good friends who I hadn't seen in a while. Just sitting there waiting to order, my body temperature shot through the roof as I started...
    pnw21 pnw21 22-25, M 1 Response 7 hrs ago

    Your Response

    Cancel
    Had a conversation with a friend(aka niece's boyfriend). Me: It's been a while, so how are things back home? Friend: Well, nothing much, just having part time jobs for this moment...
    ZADoubleMesser ZADoubleMesser 22-25, F 7 hrs ago

    Your Response

    Cancel
    its broken in pieces like that Chinese vase your grandmother keeps even though it was dropped by the nieces. picked up all the parts, one by one, held it in my hand and looked down...
    xxbrokenlinkxx xxbrokenlinkxx 22-25, M 7 hrs ago

    Your Response

    Cancel
    In my opinion, I feel that everybody should love each other/be there for one another as a family. For example, I feel that we need to eliminate jailing and imprisonment. People who...
    AICLover AICLover 13-15, F 7 hrs ago

    Your Response

    Cancel
    I woke up with a headache this morning :( It's similar to a migraine aswell. Anyway for the first time I went on the Xbox 360 for the first time in ages in months if you read my...
    JonnyBurrows10 JonnyBurrows10 18-21, M 7 hrs ago

    Your Response

    Cancel
    my neighbor is just all around bizarre. It's like an art form to the most disturbing degree. He loves any negative attention you're willing to give so he can turn it around in some...
    davenr7 davenr7 31-35 7 hrs ago

    Your Response

    Cancel
    I have been taking a low-dose med for some time and have been contemplating going off of it. I forgot for most of this week to take my meds so I thought I'd see where my mood went...
    meadowes meadowes 18-21, F 2 Responses 6 hrs ago

    Your Response

    Cancel
    We have an excellent Zoo near where I live. They have large open areas for the animals. They are very knowledgeable about how to create a safe and healthy environment for them and...
    tryingagainII tryingagainII 56-60, M 1 Response 6 hrs ago

    Your Response

    Cancel
    Where have all the good men gone, and where are the gods?  A hero...Not this:Or that:I mean... grow up, men!
    MissGaga MissGaga 22-25, F 13 Responses 5 hrs ago

    Your Response

    Cancel
    I have tablets , diazepham mg took 5 so used to then feel better.
    wherethewildthingswere wherethewildthingswere 26-30, F 5 hrs ago

    Your Response

    Cancel
    I never have A drink.....I have A bottle. Yup
    lehcar1977 lehcar1977 36-40 4 hrs ago

    Your Response

    Cancel
    Aren't I always in a dilemma? Go do my homework and avoid getting scolded or have fun and play? (Play as in be antisocial and go on the Internet lol) well, I don't think I'll ever...
    Firepaws Firepaws 13-15, F 2 Responses 4 hrs ago

    Your Response

    Cancel
    My husband once called me ****. Not ******, just ,"You are ****" & "So awful I gotta have **** just to get off when I'm with you"....he's fabulous
    lehcar1977 lehcar1977 36-40 4 hrs ago

    Your Response

    Cancel
    Recently diagnosed. Diagnosis seems a bit pointless seeing as there's no cure but I suppose it will stop me wasting my time looking for a solution. I wonder what to do with a life...
    Dontcare8 Dontcare8 26-30, F 4 hrs ago

    Your Response

    Cancel
    I've always loved the expression "you can't have your cake and eat it too". Makes sense, you can't physically have it, if you ate it. Maybe that's why so many opt for two cakes...
    extant1 extant1 46-50, M 2 Responses 4 hrs ago

    Your Response

    Cancel
    I have believed in people, and thought that they were real, and fair dinkum, only to find out once I had given all of me to the relationship, that they were not what the said they...
    Shamrock40 Shamrock40 36-40, M 2 Responses 3 hrs ago

    Your Response

    Cancel
    I have, the strangest I have met was in college and it is a group of usually very liberal friends. They mean very well and are good people but when I told then about the man on...
    Kathree84 Kathree84 26-30, F 1 Response 3 hrs ago

    Your Response

    Cancel
    There are a lot of great posts on EP, and a lot of heart-wrenching experiences. Sometimes, when I read them, I am at a loss for words. On these occasions I hit the "heart" button...
    unluckE unluckE 31-35, M 1 Response 2 hrs ago

    Your Response

    Cancel