- re: New Member doing research on diagnosis

[Guest guest]

Hi ! Welcome to the group.

You can read my "case history" in message #5788 (posted back in November).

Like you, I went from having problems "once a month" to "once a week" to "once a day" to "every single meal" and finally got to the point where I was gagging on my saliva at night.

As for a "good source" for doing research on achalasia, the best I can suggest is to just hit every single search engine on the web (, msn, lycos, ask jeeves, alta vista, etc) and type in "achalasia" and also try "dysphagia" (difficulty swallowing). The one thing I've learned in the almost 10 years I've been dealing with this is that there ARE no answers!!! Everyone seems to have different symptoms, different treatments work on some people but don't on others (and with no rhyme or reason as to what will or won't work), some people can eat some foods and others can't, etc. Just read, read, read.... some of it you'll find applies to you and some of it doesn't.

I've had probably a half dozen different manometry tests done, one by my first (totally incompetent) GI doc, the rest performed at the University of Michigan Medical Center in Ann Arbor, Michigan. My previous tests were done "on paper" -- they hooked me up to what I refer to as "the Richter scale machine" and it showed jiggly lines when I swallowed (think seismograph or polygraph machine, with all those needles that jump all over the place making squiggly lines on the paper). Then when I went in May of 2002 for another test, they had updated their equipment (it had been 4 yrs since my previous test) and they now hook it up to a computer that records everything, rather than rolls of paper flowing across the floor.

I have sinus problems, and with the formation of my nasal passages they have difficulty getting the probe through my nose, so they just put it through my mouth. This time around, though, the probe with the newer computerized equipment is smaller and more flexible, and they were able (with a bit of pushing) to do it nasally.

Probably every facility and every technician does it a bit differently, but here's what mine have been like (with the exception of the incompetent doc -- we won't even GO there!):

There is a chair that I call "the dentist's chair" for me to sit in.... it has arms and a headrest, and it's on a pedestal so that when I'm sitting my face is about chest level on the technician (I can't imagine doing it lying down -- if I don't have gravity, they'd never get the probe down to my stomach!!!). They spray "hurricane spray" into the back of my throat (it numbs the area, doesn't taste the greatest but it's not disgusting or anything). They have a gel that has the same numbing type ingredient (from the same drug family as novacaine) that they put in one nostril with a long cotton swab. They put it in until there's resistance, swirl the gel around and let it numb the area, then push a bit further and stop to numb that area, on and on until they make it to the back of your throat. Then they pull the Q-tip out and feed the probe in... it's basically a soft plastic tube with sensors in it, and you "swallow" (yeah, right, like any of us can swallow!) over and over as they feed more and more of it into your throat (through your nose).

I had more trouble getting the probe down this time, b/c it's made of lighter-weight materials than the old kind, and it tends to bend up on itself as they're feeding it down. It kind of tickles the back of your throat, too, and triggers your gag reflex when it hits just right. But the technicians are used to this (they stand off to the side a bit, rather than directly in front of me, so they don't get sprayed if I cough!).

They take readings as they go down, and give me little sips of water from a squirt bottle (I open my mouth and they squirt it in) at different intervals. First they feed the probe up and down to find exactly where my LES is located (they pull it up an inch or so at a time, have me swallow, pull it up gain, have me swallow, etc etc etc..... then push/swallow it down again). Seems like it takes them 3-5 times of doing this to figure out where exactly they want to place the probe. Then when they find the "sweet spot" they tape the probe into place and start the "real" portion of the test, which involves me either doing dry swallows or wet swallows (when they give me a tiny squirt of water to swallow) for 15-30 minutes while they record the readings from the probe. They ask that you not swallow unless they tell you to, but if you do happen to swallow when you're not supposed to (like you have a buildup of saliva and HAVE to swallow before you drown) just tell them that you swallowed so they can record it as a swallow on the readout. They also ask that I not talk (b/c it shows the vibrations on the readout), but you can answer their questions or if you have a particular question they don't mind if I ask it... they just don't want you chatting the whole time.

After they have all the measurements they want, they hook my probe tube up to a little IV bag -- it's called the Bernstein Test, and basically they put a hydrochloric acid through the tube to see if it gives you "heartburn" pains. I can talk during that portion of it... it probably takes 45min for the baggie to completely drain, so I usually ask the technician to show me my test results. They're not "allowed" to give me diagnosis type information, since they're not doctors, but they can tell me what my readings were and what "normal" is, etc. I also tend to chat them up a bit in general, since all there is to do is stare at the clock and stare at the acid bag on top of the IV pole (I'm what you call a "people person" and will strike up a conversation with any poor sap who happens to be nearby).

When the bag is empty, they pull the tube back out my nose and give me a kleenex to wipe the gel off my nose and I'm on my merry way.

Lemme know if you have any questions after reading this and/or my case history. You've found a great group for support and information!Debbi