I Have Tracheal Stenosis

Tracheal Stenosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Tracheal Stenosis. You're not alone. 40 People

    What Has Your Experience Been With A Tracheal Resection?

    I have had tracheal stenosis for 5 years now and am having dilations about every 4 months. I am quite frankly tired of surgeries and endless breathing issues and have decided to look into a tracheal resection. I wanted to get feedback from those who have had it on what the...
    kesselt kesselt
    31-35
    2 Responses Aug 9, 2012

    I had a cluster of seizures

    and was intubated for 3 days. Caught aspiration pneumonia and stayed there for a week after I was home I noticed my breathing being different. Walking and talking was difficult, even sleeping was impossible. And so my mother decided to schedule me an appointment with an ENT...
    nicoledn nicoledn
    18-21, F
    Aug 18, 2015

    Good Morning Everyone

    I have been diagnosed with Tracheomalacia, sublottic stenosis for over 7 years now, I am new to this so I am not sure what to say. I have read some of your stories/bloggs and can truley relate! I have gone through quite a bit of procedures myself. I try my best to live as normal...
    myairway myairway
    51-55, F
    3 Responses Dec 13, 2010

    Medical Nightmare!!

    I have been through a medical “meat grinder” for the last 90 days and feel I may have some valid claim for medical malpractice or poor care and judgment at the very least. I have virtually lost my business of 22 yrs and am unable to work as before. I recently had to...
    tampaboa tampaboa
    56-60, M
    2 Responses Dec 10, 2009

    Tracheal Stenosis

    I was born at 24 weeks and I now have a trach tube. This is my second one.
    shanica123 shanica123
    26-30, F
    Jul 19, 2013

    Your Experiences Are Needed....

    Would you be interested in sharing your stories on www.tracheal-stenosis.com? We are also working with a pr company and the surgeons at charing cross hospital, London - to raise awareness of ts through the press? Would you be interested in sharing your views/experiences? The...
    Gwenllian111 Gwenllian111
    31-35, F
    Aug 5, 2012

    Singer with Sub-glottic Stenosis!

    About 2 years ago I went on a nice walk with a girlfriend of mine (whom I always worked out with at the gym). This day something strange happened, I started to walk up a little hill, a very small incline when I noticed I couldn't catch my breath! I didn't understand it! I was...
    kikboxfox kikboxfox
    46-50
    8 Responses Jul 17, 2011

    Sci And Post-intubation Blues

    After becoming quadriplegic in an accident, I discovered that I had post intubation tracheal stenosis. Doctors at Mount Sinai did not give me much hpe for a resection, so I sought out Dr. Mathisen in Boston to get a t-tube inserted. It was a delicate surgery but it worked well...
    bornagain07 bornagain07
    31-35
    3 Responses Jul 18, 2011

    Pregnant And Has Tracheal Stenosis

    I'm a 33 year old woman who was diagnosed with TS about 7 years ago. My TS issues are a result of being born 2 months early and being on a ventilator for a prolonged period as a baby. Like most of you, I was diagnosed with asthma for years until an ENT figured out what my 'real...
    candicerenee2 candicerenee2
    36-40, F
    May 2, 2013

    Any Nail Techs/hairdressers On Here?

    I was diagnosed with ts in May of this year, 2012, my Dr said they have no known cause, o have been a nail tech / hairdresser for 27 years, I was also severely abused as a child so on the alternative side of things that could be a cause? I don't have a CLUE.. What I am more...
    FingerFinisher FingerFinisher
    51-55, F
    Jul 26, 2012

    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

    Thankful Someone Finally Listened

    For the past 10 to 12 years I was told that I had asthma. It started out as mild wheezing when I talked and as time went on it became more difficult to do anything without becomming breathless. Within the past two years, it became severe to the point I could not undress or...
    Feb 4, 2013

    It's Back!

    This is my first time posting on here. I was first diagnosed with tracheal stenosis in Nov. 2011. I had noticed breathlessness upon exertion and a feeling of a lump in my throat about 2 years prior. In the summer of 2012 I started feeling like I couldn't breathe when laying down...
    jalynna jalynna
    36-40
    1 Response Jul 28, 2012

    Time To Look At "other Alternatives".....

      I am new to the community and am not sure why I didn't look for support groups prior to this.  I guess I just figured I was the only adult who had this disease so I was going it alone.  It is great to finally find people who know what if feels like to have this...
    kesseltl kesseltl
    31-35
    1 Response Oct 14, 2010

    Idiopathic Sub-glottic Stenosis Since 2007

    In early May 2007 I first started feeling short of breath. I was 3 months pregnant with 2nd child & I felt otherwise fine - I was used to chasing around after a lively toddler & I've always been sporty & pretty fit & healthy. So when I started to struggle running upstairs it came...
    LETGOANDBREATHE LETGOANDBREATHE
    41-45
    Mar 2, 2012

    2014 iwas taken to hospital had triple bypASS

    gthat went fine heart is good theproblem is i have a plastic tube in my throat they sent me home i told them my throat is very sore htey told me its common after sergury week later i was rushed to hospital could not breath saw two doctors before that and was given cold meds in...
    joeycanttalk joeycanttalk
    56-60, M
    Nov 13, 2015

    3 Surgeries Later...

    I was diagnosed with Subglottic Tracheal Stenosis about 3 years ago and have had 3 surgeries since that point. Each time they go in with a rigid bronchoscopy and do the intubation to stretch it back out.  I remember the first time I had it done, when I awoke from the...
    lmorris1964 lmorris1964
    46-50
    3 Responses Sep 28, 2010

    Tracheal Stenosis And Multiple Sclerosis

    Beginning in April of this year, my daughter was diagnosed with MS.  On May 13, 2009 she began having siezures and was intubated for 3-4 days.  Soon after, she began having extreme difficulty breathing and after several trips to the ER and many asthma diagnoses, was...
    jcook89342 jcook89342
    41-45, F
    Dec 15, 2009

    Facing Another Dilation :(

    I am facing my 5th tracheal dilation soon.  This started 4 years ago with no known cause.  I thought I was getting asthma and was waiting until my insurance kicked in to go see a doctor.  10 days after my insurance went in to effect I was in the ER in respiratory distress.  I...
    ajbsmom ajbsmom
    41-45
    1 Response Oct 8, 2011

    Tracheal Stenosis

    I was diagnosed with this condition in 2011 and had laser treatment for it at that time. This yr it has returned and am having more laser in 4 weeks. If that doesnt work, Dr suggested a resection. I found this quite a terrifying thought and felt really alone. This is the first...
    jhoh jhoh
    56-60, F
    Sep 30, 2013

    After being symptomatic (dyspnea,

    chronic cough) for almost a year, visiting two pulmonologists, one endocrinologist, my PCP three times, an internist twice, two ultrasounds, two chest xrays, three rounds of bloodwork and a CT scan, I was finally directed to an otolaryngologist who diagnosed me with stenosis...
    jessicamlarosa jessicamlarosa
    31-35, F
    May 28, 2014

    Hi there, I have tracheal stenosis with an

    unknown cause at present. I have gained weight due to my activity levels being so low because of stridor. Does anyone know what type of exercise is good, if any? I have tried swimming which is okay, but it has to be planned. Dont know whether to try an exercise bike. I know I...
    susiestridor susiestridor
    51-55, F
    2 Responses Jan 8, 2014

    Tracheal Stenosis Is Hell.

    I am a retired respiratory therapist who woke up while being extubated in the hospital I used to work at. I was on a ventilator for 5 days. I went home two weeks later and was able to sleep in my bed and had really no problems. I woke one night with inspiratory stridor. I took a...
    dukesmama dukesmama
    56-60
    1 Response Feb 23, 2012

    I Think I Know What the Problem Is

    Honestly I am sooo over the coughing particularly when I lay down.  I am having zippo sleep and am exhausted.  When I cannot sleep I get on the net and try and find out whats the matter with me.  I think I finally know what my problem is...
    cello cello
    51-55, F
    2 Responses Mar 12, 2009
More Stories