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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 never really asthma all along. It always seemed to be in my upper airway and never down in my lungs. I noticed I was getting increasingly worse over time, and have really had a lot of trouble in this last year. I sought help from my primary care doctor who who heard my noisy breathing on several occasions, but then was refered to an allergist who gave me the diagnosis of VCD, Vocal Cord Dysfunction. I was told do breathing exercises and use saline products. That helped for a while until I got broncitis. I decided on my own to go to an ENT, who immediately made a diagnosis just from hearing me breathe when he walked in the room! I was very frightened by this diagnosis and asked for a second opinion. The second doctor showed me my trachea on a screen and said it was a third the size it should be. So now, I am awaiting surgery and am scared but hopeful that it will work. Every day I work hard at keeping my throat clear and suffered a long time with lots of phelgm and coughing. Through a lot of reading and research, I found out that going on an acid reflux diet, stopping dairy and other mucus producing foods, using Mucinex, Chestal Cough Syrup and Allegra, chewing non-mint gum, and one last thing that I find really helps is constantly drinking Alkaline water with a high PH of 8.0 or higher. I would be happy to hear from anyone else with this condition or that I can help in any way.
niter13 niter13 56-60 2 Responses Apr 10, 2013

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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 out .

Have you joined the Facebook support groups for this condition? 'Living with Idiopathic Subglottic Stenosis' and 'Idiopathic Subglottic Stenosis'. There you will find more than 300 women with the same condition sharing tips and experiences, plus doctors willing to respond to quick questions. You will be welcomed with open arms :)