Once upon a time, I thought I had severe asthma. So I went to an asthma and allergy specialist. He had me breathe in a tube and did a chest x-ray and decided that I did not have asthma, but that there was something wrong with my vocal chords. He sent me to an ENT.
The ENT stuck a tube with a camera on the end in my nose (because I also have a bunch of nose junk he needed to check out). When he was done looking at my nose, he pushed the tube farther down until he could see my vocal chords. Let me take a second here to say that it was one of more uncomfortable things I have experienced. He had me hum and stuff to make sure my vocal chords were ok (they are), but he could pretty clearly see that the problem was just below the vocal chords. Subglottic Stenosis. This ENT referred me to Nose Doctor because he didn't feel like he was equipped to handle my super crazy problems; Nose Doctor referred me to Throat Doctor because these guys are very specialized, I guess.
My throat looks like this:
As you can imagine, that makes it a little hard to breathe. If you want to know what it's like, find yourself a straw, cut about an inch off one end and hold it in your mouth. Now, go about your business just breathing through the straw. You can get by doing most things as long as you don't exert yourself too much, but it's very very easy to get winded.
Subglottic stenosis can be caused by a lot of things, including GPA. It's a fairly rare symptom of GPA though, and can be a little weird. It's not necessarily indicative of a full systemic flare. Also, the presence of scar tissue there can mean that the little evil granuloma monsters have come and gone. Also, it doesn't always clear up when the GPA clears up. So sometimes there has to be surgery. Basically, they cut into the scar tissue with a laser and then inflate a balloon to dilate the opening:
Hopefully I won't have to do this. My appointment today was very promising. In fact, I have a picture for you of my very own throat:
This is a side by side comparison from today (left) and my first appointment with Throat Doctor. Here it is again with more stuff drawn over it:
Clearly, there has been very significant improvement. I'm no longer breathing through a drinking straw. There is still some room for improvement, and there was a bunch of mucus down in their because my nose is messed up and I have a lot of post nasal drip (you can see a little string of it in the picture from today). But this is really awesome. It's hard evidence of major improvement. I'm extremely pleased.
I have an appointment with my rheumatologist on Monday. I'm sure he'll do a million blood tests and we'll find out if the rituxan infusions did the trick or if we need to try some more drugs. I'm optimistic, especially after seeing so much improvement in my throat.