Re: My experience with SGS
Wow, that's too scary. Thanks for sharing. How long have you been on true remission without meds ? How long do you now understand that WG was actually active, causing the stenosis ? Were there any other WG symptoms but the sinus & the stenosis ?
I know few weggies on facebook who struggle with this problem. Seems to be complicated. If one suffers more from it, does it mean that his WG is active ? Even if it is the only symptom ?
Sorry if I ask too many questions. I have some friends in mind.. Please feel free to ignore whatever...
Re: My experience with SGS
I had almost the exact same diagnosis experience. Docs thought I had asthma until they realized all the wheezing seemed to come from my upper airway/throat. If that is happening, y’all, ask for a neck CT scan to check for SGS!! Mine is right under/adjacent to my vocal chords and I am looking at surgery next spring while keeping a close watch until then. I’m not sure how long the SGS had been developing but my breathing has been a minor issue since 2011 but seemed to lessen after the WG diagnosis around that time and remission later on. It was still just attributed the asthma. My breathing and sinuses got worse around 2015/16 I wasn’t diagnosed specifically with SGS until last November and when I was referred to a really good laryngologist.
Like i said, basically the same symptoms you listed, and I wasn’t even aware that SGS was a likelihood so I assumed that with my asthma diagnose everything was fine. It’s like I knew in the back of my mind something was wrong since I had trouble breathing but inhalers helped a bit but not a lot? And when docs listened to my lungs they were fine, breathing tests were mostly fine, but I was still wheezing and mucus would get stuck in my throat, and sometimes it just felt really tight when I was sick (and - hindsight- inflamed!) but I tried to tell myself I was fine bc if not, someone should have seen something by then (with all these docs I see!!). The problem was that I saw a pulmonologist to focus on asthma and an ENT that specializes in sinuses but needed to see and ENT with a speciality in laryngology (to which my ENT referred me. And now I have 2 ENTs in the same clinic that see me mostly together.)
I am glad to hear that the surgery results happen so quickly - I’m actually very nervous about surgery due to the proximity of my vocal chords, and just having surgery in general. I just saw my doc last week and have decided to tell her that I want to move forward with surgery (since I am currently stable) when i see her next in January. I’m definitely confident in my doc, I’m just worried that I might sound different or something will go wrong during the procedure, but being able to have more quality on breathing has to be the better option, you know?
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Re: My experience with SGS
I too experienced the same except my airway ended up totally blocked and as a result I have a trach and the damage is to the point that it will most likelt be there for life. But at least I can breath.