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Gastroparesis, Reflux/gerd, And Subglottic Stenosis

Well, GP is an adventure, huh?  I'm sorry I've been offline for so long, but things have been a little difficult over the last few months.  The frustrating thing is that the doctors don't know enough about GP to help us through it or tell us what to watch out for.

The latest "that couldn't possibly happen" is that it has caused what I am told is called "subglottic stenosis."

It started last July after I was on the dairy-based Glucerna for 2 months.  Suddenly, I was wheezing and having trouble breathing.  I had been diagnosed with asthma years ago, so they took me off all dairy products (no more Glucerna, so I have to find a gluten-free, dairy free liquid diet), gave me pills and nebulizer meds for the asthma, and sent me on my way with an appointment scheduled with the allergist a month later.  I dutifully did all the docs told me to do, and it got worse.  So the allergy doc upped the asthma meds.  And it got worse.  I think I saw a few other docs along the way, including my family doc who kept telling me to exercise more (that's kind of hard for several reasons: GP + having breathing difficulties if I try to walk across the floor.)  In January, I got mad when it was so hard to do the treadmill, so I went to my family doc and demanded oxygen so that I could exercise.

I guess my voice was finally loud enough, because he sent me to a pulmonary specialist (a month wait for that appointment) who scheduled all sorts of breathing tests (of course, another 3 weeks wait for that appointment) and "just in case" a visit with an ENT to "have a look down there and see if she can see anything." 

The ENT visit happened 3 days after I almost passed out and got so high during the breathing tests that I couldn't drive home.  She stuck her scope down my nose, watching the pictures on the display over her head (I couldn't see them, but my husband was there), proceeded to absolutely freak out, and offered to do a tracheotomy right there and then.

Huh?  I'd been walking around like that (not very fast, mind you, but I was coping) since July and now here it is March, so I refused the emergency trache.  She said she would make an appointment with a surgeon in Birmingham "who only did this."  Of course, the first appointment available was a month and a half away.  But this lady was completely unlike all the other apathetic, uncompassionate, plodding doctors I'd seen, and apparently spent her free times over the next several days on the phone demanding that they see me as soon as possible.  At the same time, she set up an immediate appointment to get an MRI of the growth and had me make almost daily trips to her office to make sure I didn't die.  With her assertiveness and persistence, she got the UAB doctor to fit me in in under a week.

When he stuck the tube down my nose and saw it, he wouldn't let me leave without doing balloon surgery right there, right then.  My airway was down to 4 mm when it should be around 39 mm.  He was able to widen it to about 16 mm.

After that was over, he explained that I really could have died if a small mucus plug had obstructed the tiny hole in my airway, and that the gastroparesis was probably the culprit.  Most of the time the scarring and tissue buildup from GERD/reflux happens in the esophagus, but since I'd had several endoscopies, my chart said I didn't have it.  What my bozo doctors apparently haden't been taught is that it is also possible for the reflux to wind up in the airway at night, irritate the lining of the throat, and produce the same type of growth/buildup there as is most often seen in the esophagus.

By the way, I don't and (according to the new doctor) have never had asthma.  It has been the slow buildup of this tissue in my airway for over 10 years causing my breathing problems.

I've since had 2 applictions of the balloon surgery and can breathe a whole lot better.  I'm writing this in case it helps someone.  Months ago I read one person's story on here that mentioned that their "asthma" had actually turned out to be caused by their GP.  If I had've paid more attention or understood what I was reading better, I may have yelled at my doctor in July instead of waiting almost 9 months to breathe again.

Here's hoping you have better doctors than I do,

LiveNew
LiveNew LiveNew 31-35 2 Responses Jul 19, 2011

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Hi, B3ach, thanks! You know how it is -- some things improve while others throw you a curve ball.<br />
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I'm glad my posting helped someone. If you're worried that this might be happening to you, it's easy to check for. Demand that you are referred to an ENT and that they stick the scope down your nose and check visually. After all the tests and guesses, this is something that people can actually see with their own eyes.<br />
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I'm so sorry you're having such trouble. Thinking you're having a heart attack is pretty scary. I know that when I was at my worst, I had chest pain that didn't make any sense.<br />
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One stomach med they put me on years ago, Propulsid, caused those kinds of symptoms, too. It might be worth reading the tiny print on the insert of any gastro drug they have you on.<br />
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I'm scheduled for my 3rd balloon surgery in a couple of weeks. The thing is growing back and I am beginning to wheeze (doc insists on call it stridor) again. It's not the most pleasant thing to endure, but breathing is kind of important.<br />
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I hope you find a good doctor and that you find out how to fix the symptoms,<br />
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LiveNew

I hope your life has improved since this experience you've described. It has given me some useful information about my own struggle with gastroparesis and I wanted to thank you for that. I was surprised to learn that "it is also possible for the reflux to wind up in the airway at night, irritate the lining of the throat, and produce the same type of growth/buildup there as is most often seen in the esophagus". Like you, my one endoscope came back normal, and so nothing further has been done to determine the cause of the coughing, choking and spasming. Their only explanation is it sometimes happens with Gastroparesis. My condition is certainly not of the magnitude of the symptoms you describe. But it can be very scary when my esophagus spasms and I cannot breathe, pain radiates into my chest, down my arms and into my jaw. I went to the ER and they thought I was having a heart attack!