JanW's surgery went well!

[Brooke]

Hi Jan~
I am glad everything went well for you!!!
How does one know if wheezing and difficulty breathing is due from the damage to the lungs or if it is SS?

[JanW]

CT of the lungs is surefire. Also look under my new thread -- Breathing Problems -- Where are they coming from? for easy tests you can do at home.

The key thing to remember is "not all wheezing is asthma." This is the mantra of ENTs. If you are wheezing on inhalation, other sources higher in the windpipe need to be examined, particularly in those of us with WG or sarc.

[JanW]

Had my surgurical follow up today and everything went well. Dr. Lebovics says my throat is now almost fully open and that I'll probably want to be back in several months for a 'touch up.' Also did a baseline hearing test (and cleaning). He said that the test picked up some congestion in one ear which could be symptomatic of WG, and of course important to know. He didn't feel that there was anything more for him to do at this time, and I'll see him in two months. I'll see my rheumo tomorrow and figure out the meds -- no surgery on the saddle nose until remission and six months off the meds (although in rare cases he has operated on people with who haven't achieve med free remission because the deformity was so bad). Mine's not so bad that people stare and point, thank goodness, but he has had peeople in that situation. I just avoid photography and shadows.

[Jack]

Medication free remission is a big ask! It is something people hope for, but only the lucky ones get there.

[moyan]

Hi Jan, good news for you. Several times I have read here that wheezing on exhalation is astma, but.....in my 70 years I have never had astma and now sound like a steamship when I exhale. Has lasted about a month. what could it be? Also so short of breath I have to rest after sitting down.

[JanW]

I would definitely have your lungs checked out, moyan. Adult-onset asthma is unlikely...could also be COPD if you were/are a smoker.

[JanW]

Jack, I know it's a big ask, and I'm not necessarily looking to get there either. I think my surgeon could probably be persuaded...he mentioned that he did one woman who was on low-dose pred when it became clear that she would never get off meds.

[Sangye]

I wish we had some statistics on how many Weggies get into drug-free remissions and for how long, etc.... I'll ask my Wegs doc in a couple weeks.

As far as having that hope for myself, I treat it like the rest of Wegs-- have hope, but not a tight grip on a particular outcome.

[JanW]

I'm more in the mode of figuring out how to get the doc to perform the surgery if I don't completely go into remission -- but I get it, he could do the work and it could collaspe again. The only people I've read about who had the surgery are in fact off meds -- unlike my windpipe this isn't something that I had to have done. He walked me through how this is an aesthetic problem of the Western world, blah, blah...but he also introduced me to the plastics guy that he does this with. They feel optimistic for me because many Weggies they see are much sicker initially, and I haven't gotten sicker since diagnosis, despite no medical treatment (can't count mtx because it was only a trial dose).

[moyan]

I would definitely have your lungs checked out, moyan. Adult-onset asthma is unlikely...could also be COPD if you were/are a smoker.

Hi Jan, gorgeous day here! I had my lungs checked thoroughly about a year ago. What is COPD? Some obstruction somewhere between tummy and throat, very small though and first signs of edema, I was a HEAVY smoker but quit 15 years ago.