On Nov 26th, 2019, I underwent my 4th Glottic dilation in 10 months for my PGS.
This most recent surgery was pretty much a duplicate of the last one done back in May. They cut out the scar tissue with a laser, dilated my airway by stretching the space between my vocal cords (the glottis) with a special balloon thingy, and then injected the area with steroids. The surgery went off without a hitch and took less than an hour.
During the follow up check 4 weeks after the surgery, my surgeon couldn’t believe how well I was healing and could see that my vocal cords went from being open 40% on inhalation to 100% , or roughly from a 4 mm opening to a 10 mm opening! That’s the most it’s been since starting this journey back in January. This is hugely important, because the last thing you want during a bad asthma flare is to have your upper airway close up when your lower airways are closing up, and that’s what I’ve been living with since God knows when.
Also, he noted that the right cricoarytenoid joint (the joint that controls the motion of the right vocal cord) wasn’t affected as much this time, so that leads him to believe that we might not have to do this quite so often in the future. Were hoping to go a full 6 months before the next surgery. That would be awesome.
Here are some of the surgical photos……
Here’s what my airway looked like 2 weeks later…( before is on the right , after is on the left)
Unfortunately, my lungs didn’t fair quite as well post surgery, which is no big surprise. While I was in the recovery room my asthma starting acting up and we couldn’t control it with just nebs, so I ended spending a night in the ICU. Thankfully after 12 hours of bipap and a ton of Albuterol, I was able to break the exacerbation and felt well enough to go home the following afternoon.
Other than the usual sore throat, which lasted a full week this time, I’ve recovered very well and can inhale a million times better than before the surgery.
Here’s the actual Hospital Discharge Summary:
Interestingly and most welcome, is that for the first time in nearly 3 years, that I did NOT experience post intubation/anesthesia delirium. Zip…nada…none. When I woke up, I was in my right mind. I was coughing and had a hard time breathing, but I was totally with it and alert. Im not sure what made the difference this time. Delirium usually gets me when I come off the ventilator for my asthma, but it’s also happened after these dilation procedures, though not as severe. Maybe it’s because they don’t intubate in the traditional sense for this surgery. They use what they call a jet ventilator, to breath for you, which doesn’t require a typical breathing tube. Instead they use a very thin catheter, which allows them to work in such tight quarters. Whatever the reason, Im extremely grateful, and made a point of letting the Anesthesiologist know just how happy I was with whatever she did while I was under. Seriously, it’s nice when you don’t go temporarily insane every time you’re in the hospital.
But the real news this time around, is that 5 days after my surgery I blew an astonishing 350 on my peak flow meter!
My baseline, or peak flow green zone if you will, normally runs between 250 and 270 and has been in that range for at least 10 years. So an 80 point jump during a random check is pretty amazing. So it begs the question, are my peak flow higher because my asthma ( ie, my small airways) is doing better, or is it higher because my upper airway is more patent now that it’s been dilated again? I don’t recall a jump in my peak flows after prior dilations. But again, this is widest my cords have been open in a long time.
Doubtful it’s the asthma, as I just spent a night in the intensive care unit because it, and while I was there they gave no additional steroids. I think Ill put my money on the upper airway and my vocal cords. When I take a deep breath in now, I feel no restriction at all…it’s a wonderful feeling. Wish I could say the same about the asthma or exhalation side of things. But hey, Ill take what I can get. Sure beats inhaling through a straw.
So after mentioning the exciting news to my doc, who by the way was sweet enough to personally call me to see how I was doing, told me that there were actually a few non-scientific studies going on that suggests that tracking peak flows in PGS and SGS patients might be good non-invasive way to gauge upper airway patency. One of the frustrating things about PGS for the patient and the doc, is that it tends to come back or re-develop. When you open up the airway by cutting away the scar tissue that causing the blockage, as the incised area heals it causes more scar tissue to form. The goal is to stay one step head of the process, by intervening early and hopefully needing to remove less scar tissue each time. Right now the only way to tell how severe the blockage(stenosis)is, other than how noisy or difficult it might be to breath in, is by actually looking at the area through a special scope that’s inserted through the nose. Not only is it expensive and uncomfortable, it has to be done fairly frequently. Monitoring my peak flows regularly is something I have to do anyway for my asthma, so it’s just a matter of also considering my stenosis when Im tracking the numbers. If I see a downward trend over time that doesn’t reverse with bronchodilators or steroids, chances are my vocal cords are the culprit and I can follow up with my doc sooner than later.
Hey, if there are any Smart Peak flow meter (with tracking capability) manufacturers out there, now’s your opportunity to expand your market, by sending a freebie to test out my theory 🙂
UPDATE March, 5th, 2020
Here’s my airway and vocal cords 12 weeks after the about surgery……. Pretty amazing.