sinus question (is this suppose to be happening)

[calfaro443]

O.k. Guys! I'm feeling frustrated. I had sinus surgery in Jan. of this year (2nd surgery) to open up my airway on my left nostril due to scarring from my first surgey in 2007. I had real thick tissue forming and closing up my airway just where the pink starts in your nose (90% closed). The ENT said it's scarring closed slowly again. And now the other side is following. Does any one else have this problem? Can't it be stopped? I need to be able to breathe. I can certainly have more surgeries to open up again but that seems to upset my WG and brings on the flare-ups. Then most likely will have the same outcome.

[JanW]

What did the doc say about how quickly it would close. I don't have this particular problem but I do have subglottic stenosis and was certainly told that I could expect scarring in that area to return and to eventually need more surgeries. Do they do anything like coat it with chemo (my throat was coated with myomicin) to attempt to retard the quick return of the tissue?

I'm thinking the tissue isn't from the surgery but rather from WG.

[Sangye]

Calfaro, what meds are you on? I know you must have mentioned it in your intro post, but it takes me awhile to get everyone straight in my head. Also, are you seeing a Wegs specialist?

[elephant]

Calfaro, your wegeners is active. I had the same thing happen to me ( thick scarring closing up my airway ) was really stuffy... 4 times that is why I had two very invasive maxillary surgeries...they even had to remove some bone to open my /left sinus up.
I was wondering the same thing about what medicines your on.

[calfaro443]

I'm currently taking 20 mg pred. a day and 20mg of methotrexate a week. I wonder where I can find the closest Weg specialist? It seems like the 3 major clinics (Mayo, Cleveland, JH) are way far and probably can't afford a trip there at this time. I'm currently being treated at UTSouthwestern research center for rare diseases in Dallas.

[elephant]

Can you drive there, would a friend go with you? I would make the trip a least once a year to get established. It makes a world of difference.

[Sangye]

There are also charitable orgs that fly people for free to medical appointments. You can google it and find lots.