RE: Update on Stefan,age 15, from England

[Guest guest]

Sally --

Has Stef actually DEMONSTRATED the wheezing to the doc? (I can't quite

get used to the Brit tradition of referring to them as " mister " instead of

" doctor " !)

When my esophagus is plugged up and " freaking out " , I experience what the

medical community refers to as STRIDOR, which to the untrained ear may

appear to be " asthma wheezing " . (See

http://www.emedicine.com/ped/topic2159.htm for a description of stridor.)

As soon as the blockage is relieved (going up or down), the stridor passes.

Maybe if you could videotape Stef breathing normal breaths, then taking

however many bites it takes for him to get " blockaged up " , and then taking

" wheezing " breaths, the doc could see for himself that they really ARE

connected and they really AREN'T asthma?

Also, as for leaving things alone for now, the main thing IMO to watch for

is stretching out the esophagus. Does Stef carry food around in his

throat for hours and hours on end? Can he bring up lunch items while

eating supper? If he's retaining food over time, you're gonna end up with

a stretched out esophagus and surgery is going to be problematic (most

badly stretched esophagi end up being removed entirely.... as Dr. Rice put

it at the medical conference this spring, " it's like sewing tissue paper

-- there's nothing to work with " ). If the esophagus is NOT stretching

out, then I see no problem with " staying the course " (this is the phase

I'm in right now, in fact.)

Hope this helps, and feel free to post any questions you have -- I'll

share any relevant personal experiences that I can!

Debbi in Michigan

> Well we went for the follow up to the Barium today, and the results

> on the screen were just like the one he had done before the

> Heller's, so I guess we are back to square one again.

> Mr Haddad wants Stef to have a manometry study,so we are now waiting

> for that to be arranged before deciding what to try next. In some

> ways I would like to leave things alone, providing that doing

> nothing will not do any more harm (than doing something)-as Stef

> does manage to eat most things,albeit with difficulty-but he is not

> losing weight at least, and the chest pains are helped by water.

> I hate that wheezing when he eats though-I'm sure that's to do with

> Achalasia, but I don't think Mr Haddad is convinced that it is!

> Bye for now

> Sally (mum)

[Guest guest]

Sorry that Stephan has not had a more prositive result from his Barium meal.

Good luck with the next stage,

Bernard

>From: "sallyavory" <sallyavory@...> >Reply-achalasia >achalasia >Subject: Update on Stefan,age 15, from England >Date: Tue, 05 Oct 2004 21:27:10 -0000 > > >Well we went for the follow up to the Barium today, and the results >on the screen were just like the one he had done before the >Heller's, so I guess we are back to square one again. >Mr Haddad wants Stef to have a manometry study,so we are now waiting >for that to be arranged before deciding what to try next. In some >ways I would like to leave things alone, providing that doing >nothing will not do any more harm (than doing something)-as Stef >does manage to eat most things,albeit with difficulty-but he is not >losing weight at least, and the chest pains are helped by water. >I hate that wheezing when he eats though-I'm sure that's to do with >Achalasia, but I don't think Mr Haddad is convinced that it is! >Bye for now >Sally (mum) > > > MSN Premium gives you PC protection, junk-mail filters, advanced communication tools and great software like MSN Encarta® Premium. Click here for a FREE trial!

[Guest guest]

You're VERY welcome, Sally! I'm so glad it was helpful!Manometry won't show anything with regard to a stretched-out esophagus, but a barium swallow definitely will.

At TCC, they do a "timed barium swallow" all on one sheet of film:

1. Drink a pint of barium. Yum.

2. Wait 60 seconds and snap a pic on the left 1/3 of the film, marked "1".

3. Wait 120 seconds and snap a pic on the middle 1/3 of the film, marked "3".

4. Wait 120 seconds and snap a pic on the right 1/3 of the film, marked "5".

5. Develop the film and you have all three pictures on one sheet.

Then you have a width (diameter) of the esophagus by looking at how big the esophagus is, and you can also tell how much barium passes through in the course of 1, 3, and 5 minutes. (They measure the height of the barium at each time period and compare the differences.)

Six months to a year later, you do the same test again and compare. If the esophagus was 3cm the first time and is now 4-5cm, it's obvious that "staying the course" is doing more harm than good, b/c eventually you can end up with a 15+cm esophagus -- tissue paper.

I have started requesting copies of ALL my lab reports, etc., from each doctor and keep a duplicate record of my own. I wish I had done this sooner, b/c my family doctor for the past four years closed his office w/ no warning and skipped town, and now I can't access those records at all. But I do have a copy of every lab report done since May of this year, and I will continue to do so for the rest of my life.

I sympathize w/ Stef re: being ignored on symptoms.... it really ticks me off as well! With the "doctors as gods" mentality that is so common, it happens more often than people realize. I read an article this year that said the average doctor interrupted the patient within 18 seconds of the patient giving a rundown of their concerns. You know, the doc comes in, sits down and says, "what are you here for today".... then interrupts you when you try to tell him! They did a study that proved that docs that did NOT interrupt their patients like this actually saved MORE time in the long run, b/c they got the Big Picture before acting, and there were less call-backs for things the patient forgot to ask, etc. Patients get less flustered, too, so they're more apt to remember the doc's instructions properly, etc., further reducing demands on the doc's time b/c he doesn't need to have as many recheck appts that are caused by patients not doing the prescribed course of action, etc.

I hope the videotape is enough to convince the doc -- you could always take a bag of Mc's burgers into the next exam, too, and give an in-person demonstration. Actually, that might be even more effective -- people usually feel really sorry for you when they witness you having a "blockage" incident.... might humanize the doc a little to see it face-to-face. Kinda hard to deny it happening when you saw it right before your very eyes!Good luck, and keep us posted!Debbi in Michigan

> Debbi,Thanks for all the info, it's scary but it's best to know so we can make the best decisions for Stefan. We got in touch with the consultant who originally diagnosed Stef's Achalasia. He will see us all in a couple of weeks and also thinks Stef should have seen the gastroenterologist by now, so will arrange the appointment. I sometimes wonder how 'joined up' the world of doctors and consultants is in the sense that ideally you would see one and they would have an up to date history of the patient to look at; whereas yesterday, Mr Haddad casually talked about 'Stefan's medication' when he isn't on any (relevant to Achalasia that is), and was suprised when we said so. I will do the video of the wheezing too, because Stefan feels quite annoyed when he feels his symptoms are dismissed, plus I don't see why he should be on the steroid type Asthma drugs if he doesn't really need them! By the way-would the manometry show any 'stretching'? Or would the barium have shown it? > Sally --> > Has Stef actually DEMONSTRATED the wheezing to the doc? (I can't quite> get used to the Brit tradition of referring to them as "mister" instead of> "doctor"!)> > When my esophagus is plugged up and "freaking out", I experience what the> medical community refers to as STRIDOR, which to the untrained ear may> appear to be "asthma wheezing". (See> http://www.emedicine.com/ped/topic2159.htm for a description of stridor.)> > As soon as the blockage is relieved (going up or down), the stridor passes.> > Maybe if you could videotape Stef breathing normal breaths, then taking> however many bites it takes for him to get "blockaged up", and then taking> "wheezing" breaths, the doc could see for himself that they really ARE> connected and they really AREN'T asthma?> > Also, as for leaving things alone for now, the main thing IMO to watch for> is stretching out the esophagus. Does Stef carry food around in his> throat for hours and hours on end? Can he bring up lunch items while> eating supper? If he's retaining food over time, you're gonna end up with> a stretched out esophagus and surgery is going to be problematic (most> badly stretched esophagi end up being removed entirely.... as Dr. Rice put> it at the medical conference this spring, "it's like sewing tissue paper> -- there's nothing to work with"). If the esophagus is NOT stretching> out, then I see no problem with "staying the course" (this is the phase> I'm in right now, in fact.)> > Hope this helps, and feel free to post any questions you have -- I'll> share any relevant personal experiences that I can!> > Debbi in Michigan> > > Well we went for the follow up to the Barium today, and the results> > on the screen were just like the one he had done before the> > Heller's, so I guess we are back to square one again.> > Mr Haddad wants Stef to have a manometry study,so we are now waiting> > for that to be arranged before deciding what to try next. In some> > ways I would like to leave things alone, providing that doing> > nothing will not do any more harm (than doing something)-as Stef> > does manage to eat most things,albeit with difficulty-but he is not> > losing weight at least, and the chest pains are helped by water.> > I hate that wheezing when he eats though-I'm sure that's to do with> > Achalasia, but I don't think Mr Haddad is convinced that it is!> > Bye for now> > Sally (mum)