I am really so frigging tired of having something wrong with me all the time. Sometimes it just seems like all I do is go to doctors and do tests and take medication. Now it seems there is a good chance I have yet something else new. And not just any old everyday something, but a “rare” disease that has no cure, is progressive, and the probable solution is some fairly serious surgery.
I reported earlier that, thanks in part to RA, I had developed problems swallowing and imaging showed a narrowing in my esophagus. I went through two separate esophageal dilation procedures where, under anesthesia, I had a tube inserted down my throat that had a special balloon that inflated and stretched out this narrowing. While those procedures returned my esophagus back to normal size, they didn’t solve the problems I’ve been having swallowing.
I went back to see my gastroenterologist (who, next to my rheumatologist is one of my favorite doctors of all time). It turns out that when I had the barium imaging done, the radiologist left of a very important piece of information. The imaging showed a distinctive issue (called a bird’s beak) that is basically only attributable to achalasia.
Basically achalasia is caused by damage and/or destruction of the nerves in the esophagus. This, in turn, prevents the esophagus from working correctly and the opening to the stomach from functioning as it should. Guess what one of the leading culprits of this nerve damage is? Right. Inflammation.
I am going in next week for some definitive testing to rule out some other, less serious spasm conditions. It’s called esophageal manometry. It’s not pleasant, involving a tube down my throat while I’m awake. If you’re interested, you can read more about it here: https://my.clevelandclinic.org/health/articles/esophageal-manometry-test. While it takes a couple of weeks to get the interpretation back, the test will definitively tell us what’s going on, so I’ll know whether I’m suffering from a rare, incurable disease or simple run-of-the-mill spasms. Oh, and Medicare will pay for the test, but won’t pay for the doctor to read the test results. Sigh.
One of the things that apparently helps is taking a calcium channel blocker which is often prescribed for high blood pressure. I’m already taking one of those, so I can’t say it’s helping much. Interestingly enough, another thing that helps is peppermint oil. So for the moment, I’m mainlining peppermint Altoids. (Seriously. I wonder if I can get Medicare to pay for them?)
In other news, my TKR knee continues to plague me. I’ve given up and my doctor has ordered some nuclear imaging scans (requiring blood draws and injections) which I’ve scheduled after the esophageal manometry, sandwiched in between Labor Day and my next infusion. Between all that and my upcoming flu shot, I am once again going to feel like a pin cushion.
I really, really hate this crap.
I hope your days are going better than mine seem to be at the moment. Thanks for checking in.