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I don't have Asthma, I have Subglottic Stenosis...

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Posted 5/28/2013 7:55 AM (GMT -7)
I am 17 years old and have been diagnosed with subglottic stenosis since I was 9 years old. I have had about 10 laser dilations and balloon stretches of my trachea. It has come down to me needing to have my trachea resectioned...any advice or help? Im pretty nervous about it but I am ready for this surgery. I would appreciate some positive reinforcement on the issue.. Thanks :)
Posted 5/28/2013 10:10 PM (GMT -7)
So sorry, but I am not familar with this. Perhaps you can speak to a friend? Family member? Doctor? What are you nervous about?
Posted 5/29/2013 6:55 AM (GMT -7)
Welcome Andrea.

Tracheal stenosis has a lot of posts on the forums. You can read them by putting the key words into the search box at the top of the page. Don't get hysterical if you read negative stuff. People who post generally have problems. Don't read them at all if it will only scare you.

There is a lot of information on google search, but a lot of it is really old. Surgery has advanced a lot in the last few years. I only read real research and information from trusted sites.

As Smurfy said, talk to someone for some support. Get your doctor to explain exactly what is planned. If you know what to expect you may relax. We are thinking of you.
Posted 5/29/2013 6:54 PM (GMT -7)
Thank you so much for the responses..this is my first time ever posting to a forum. I have read some different blogs about people who have had the same or similar surgeries and have read some scary things but I also don't know how old the blogs were. I think by reading all the blogs I am only freaking myself out more..I havent really read any positive information, just how painful or uncomfortable they feel afterwords. Anyways, I'm still excited that I got some responses and encouragement :) thank you soo much!
Posted 7/23/2013 4:14 PM (GMT -7)
Andrea do a Facebook search for "Living with Idiopathic Subglottic Stenosis" for support group.
Posted 7/24/2013 9:49 AM (GMT -7)
Andrea,

Check out these links:

https://www.facebook.com/groups/152394673762/

This page has about 360 members whom you may be able to learn  from and share with re your questions and concerns.

.

https://www.facebook.com/pages/Idiopathic-Subglottic-Stenosis-Tracheal-Stenosis-ISS/230760323624517

This group is smaller however the page looks pretty promising.

Keeping you in my prayers as you face your surgery.

I know how tough and scary it is to face surgery - remember we are here to support you.

Kindly,

Kitt

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