Living With Idiopathic Subglottic StenosisAlmost 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 I don't) and then they found my stenosis through doing a scope. I have been very blessed to have been directed to a wonderful doctor who is working with me to make the best decision for my care.
Even with a great doctor, there are times that this condition is very isolationg. I get up in the morning to feel more tired then when I went to bed! I love being active and this has really changed how I go about my day. Plus I have to get up and face the challenges because I have children that depend on me. This condition is rare and there are not a lot of people to talk to about it. I think that is the hardest thing. Plus the people in your life sometimes expect the dilatation to be the fix and you to go back to "normal". It doesn't work that way unfortunately. I dread the reconstructive surgery and wonder if there is anyone out there that has been through it and what was it like?
I always try to be positive and look at all the wonderful things I have. I just hope more research will help find answers to this mysterious condition.