I've read and reread your post on your condition and am wondering if you know where I may get more information on subglottis stenosis. I have been diagnosed as asthma but: I don't wheeze, cough, have asthma attacks, have minimal relief with asthma medicine. I do have shortness of breath, clearing of throat constantly almost (since a child), feel lump in throat, raspy voice. I am to the point where I may go to an ENT to get checked. But would really like talking to you more about it. What kind of treatments are there and does it get better? Thanks, Cindy

Cindy,

When I was first diagnosed two years ago, I could hardly find any info on the condition. You can do a search on tracheal stenosis and it may pull up more info. My subglottic stenosis is a tracheal stenosis. The subglottic part just indicates where in the trachea it is (which is right under the vocal cords).

Ways to be diagnosed..... some docs can tell by listening to your throat when you breathe. Others can do the flexible scope that goes up your nose and down your throat. Or you can be sedated and have a bronchoscopy. Sometimes the stenosis will even show up on an xray or a CT scan. I would suggest maybe going to an ENT or even a pulmonologist. As I had mentioned before, the allergist that I was sent to was the smart one that diagnosed me. My family doc had never even heard of subglottic stenosis.

The asthma meds never really helped me either. The prednisone didn't either. The reason why it won't is because the tissue isn't really inflamed, it is scar tissue. It is a very strange feeling to have this condition. And so many symptoms can be caused by other things. Like when you mentioned the lump in your throat and the hoarseness. Those can be attributed to GERD. BUT.... I can always tell when my stenosis is getting bad again... it is when my voice starts getting hoarse or I start to sound like I have a cold all the time.. (which is now). I was commenting at work yesterday that I cannot remember what my normal voice sounds like.

There is an online support group for tracheal stenosis, but when I had posted the link previously, I seem to get in trouble here. So do a search for tracheal stenosis and find the link for "Lynn's Story" and it should lead you there if you so desire. Lynn is the person who founded the support group and she goes into detail of her struggles with the condition and her subsequent tracheal resection. A resection is the closest thing to a cure. However, a few ladies in the group are having problems after their resections. SO I am at a loss. Also, I think I mentioned before that this seems to affect mostly women.

Let me know if there are any other questions I can answer for you.

Denice

okay... scratch searching for Lynn's story... I couldn't even find it!! If you do a search on " subglottic stenosis Dr Gullane" you will find a result for a case study of his where people have posted comments. Pay attention to comment number 13. That will tell you the link to the support group I was telling you about.... plus, there are some good comments from people about their life with stenosis. There is SOOOOOO much more information these days than there was two years ago.

Denice

okay... scratch searching for Lynn's story... I couldn't even find it!! If you do a search on " subglottic stenosis Dr Gullane" you will find a result for a case study of his where people have posted comments. Pay attention to comment number 13. That will tell you the link to the support group I was telling you about.... plus, there are some good comments from people about their life with stenosis. There is SOOOOOO much more information these days than there was two years ago.

Denice



Thanks, Denice, I will try that search. I really think my problem is GERD, which I am trying to get a hold of. But I will definitely read some of the comments you have suggested. Thank yo so much. Cindy