Re: Fw: What's new for '' in PubMed

[Guest guest]

wrote:

>

> ... this week's research studies on Achalasia. ... and the other

> is about a gene called ALADIN.

>

Thanks for sharing that. The ALADIN gene has been an interest of mine.

For those that don't know, a mutations in the ALADIN gene causes a

syndrome of problems known as Triple A (AAA) syndrome, Allgrove syndrome

or Adrenal insufficiency, Achalasia and Alacrima syndrome. Most of us in

this group have been diagnosed with primary achalasia. Achalasia in AAA

would be secondary achalasia due to AAA. In other words, we don't seem

to have the syndrome. However, some people with primary achalasia do

have symptoms of Alacrima. Alacrima is a deficiency or absence of the

secretion of tears. There are a number of disorders and even injuries

that can cause alacrima. People commonly describe it as " dry eyes " or

that their eyes burn or water for little reason. The topic of dry eyes

has come up a number times in this support group. Dry eyes is not

uncommon so in any group some people are likely to have it. With or

without achalasia some of us would have gotten dry eyes anyway. It seems

to come up enough with achalasia though that it has caused some to

wonder about a connection to AAA. There are differences though. AAA has

an adrenal component that primary achalasia does not. AAA is generally

diagnosed in childhood while primary achalasia is not. There are some

very rare cases that seem to blur that distinction, such as, Adult or

late-onset triple A syndrome (

http://www.ncbi.nlm.nih.gov/pubmed/20674935 ). It is interesting to see

that they probably do not share a genetic cause.

BTW: if someone has dry eyes and achalasia there are disorders besides

AAA that your doctor may want to rule out. Not worth worrying about but

worth checking out just in case. Most likely dry eyes is not going be

anything too special.

notan

[Guest guest]

Interesting article. I can't think of one person in this group that has posted

they have developed esophageal cancer. It makes some common sense that could

happen, but no one has reported cancer here. Anyone else remember that?

Sadly we hear more about complications from aspiration.

Sandy

>

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> pletchsr@...

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[Guest guest]

wrote:

>

> ... a case study of a man who had been diagnosed with achalasia, got

> dilation, then no treatment for 15 years, and then died of squamous

> cell carcinoma.

>

Two things to note here: a man (not a woman) with achalasia and a

smoker. Both are reported to increase the risk of esophageal cancer.

Non-smoking, non-drinking women with achalasia may not have as high of a

risk.

Risk of esophageal adenocarcinoma in achalasia patients, a retrospective

cohort study in Sweden

http://www.ncbi.nlm.nih.gov/pubmed/21212754

" Notwithstanding similar numbers of men and women in our achalasia

cohort, 20 of 22 esophageal cancers developed in men. "

notan

[Guest guest]

Is aspiration very common?

From: Sandy <sandycarroll@...>

Subject: Re: Fw: What's new for 'achalasia' in PubMed

achalasia

Date: Saturday, June 4, 2011, 7:02 AM

 

Interesting article. I can't think of one person in this group that has

posted they have developed esophageal cancer. It makes some common sense that

could happen, but no one has reported cancer here. Anyone else remember that?

Sadly we hear more about complications from aspiration.

Sandy

>

> From: My NCBI <efback@...>

> Subject: What's new for 'achalasia' in PubMed

> pletchsr@...

> Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

Yes, aspiration for me is common, but maybe I'm not using the term correctly.

The saliva doesn't go down by itself. Often I take a breath and the saliva gets

sucked into my airway a little bit and I cough. Not a big deal. Every once in

a while I take a breath just as the food is there and a coughing spell will

start.

The biggest issue I think, with aspiration is that when you get sick with a

cold, that germy stuff doesn't go down easily and if we suck that inward, that

is how germs start in our bronchial tubes etc. Many of us have had pneumonia

and other issues fairly often. Standing upright or sleeping upright doesn't

always help totally.

As we age, and other health problems might develop, a simple cold can turn into

a mess for us.

I would do as much as possible to keep the esophagus from stretching, whether

dialation or surgery. With the food at least going down, then it isn't backed

up so it can be sucked into the wrong places. But we still have to drink water

to flush things down. Talking louder than normal, like in a presentation or in

front of a group, makes more saliva and then I can start coughing so that even

water doesn't help.

At night, if there aren't enough pillows, I will cough a little. Before

surgery, it was constant coughing at night, even with pillows.

Sandy

>

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> > Subject: What's new for 'achalasia' in PubMed

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> > pletchsr@

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> > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

I wonder if my husband aspirates. I don't think he would know if he did, but he

coughs a LOT. I mean, he's never smoked but sounds like he has his whole life

kind of cough. Awful -- & he sleeps on about 7 pillows. I ask him how he can

sleep sitting up & he said he can't sleep lying down because the reflux is so

bad.

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> > > From: My NCBI <efback@>

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[Guest guest]

I would think aspiration is very common. It definitely was with me. It happens

most often to me if I ate something and then laid down afterwards. I would start

to cough/choke. My lungs have been scarred over the years from breathing in

these food particles. That's why pneumonia is more common with achalasia

sufferers. Those food particles are a breeding ground in the lungs for bacteria.

I finally learned not to eat a certain amount of time before I went to bed and

drank plenty of water to wash anything left in the esophagus down.

I'm hoping now that I've had the myotomy, that it won't be too much of a

problem. Time will tell.

> > >

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> > > > From: My NCBI <efback@>

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> > > > Subject: What's new for 'achalasia' in PubMed

> > >

> > > > pletchsr@

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> > > > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

Everything Sandy said about aspiration and coughing is also true for me.

[Guest guest]

I know how much you struggle with your husband, but it sounds like he

is likely aspirating. Again, I'm not sure if I'm using the term correctly, but

without the in tune pulsing of the esophagus pushing down food and liquids,

everything just lays there. When we breathe if something is there to be sucked

in, then it gets sucked it, there isn't any mechanism to push the food and water

past the vacuum effect of breathing. Little tiny specks of food get sucked in.

It is much worse when we lay down. But if the food isn't going down and the

esophagus is full, then it is there to be sucked into the lungs even standing.

Not sure what you can do with your husband's resistance. Even if you got him to

a doctor and he had some kind of treatment, he may be one of those that argues

and disagrees with every little step along the way. Excuse me for my words, but

it is almost like dealing with a family member with an addiction, if I remember

your earlier posts correctly. For whatever reason he is comfortable now as he

is. Likely some huge fear is in the back of his mind. The possibility of a

positive outcome with treatment is so obvious to us, but to him it is a huge

fear. I don't know how you can help him, it is almost like he needs a medical

intervention. But there is risk as demonstrated this week.

> > >

> > > >

> > >

> > > > From: My NCBI <efback@>

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> > > > Subject: What's new for 'achalasia' in PubMed

> > >

> > > > pletchsr@

> > >

> > > > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

Chelsea,

How do you know that your lungs have been scarred by your micro aspiration?

Did you learn this from your pre-op testing? Did you see a pulmonologist and did

he see this on a chest X-ray? If so, did it affect your breathing test? Scarring

of the lungs can cause a significant decrease in the amount of air your lungs

can take in. i was nervous that my lungs were going to show up as " scarred " but

thankfully my chest X-ray was very clear. It was just the size of my giant

esophagus that was causing my trachea to bend on exhalation.

BTW, scarring of the lungs does not heal itself. Its permanent damage and can

not be reversed. Hopefully with your myotomy you will not micro aspirate again!

Cara

> > > >

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> > > >

> > > > > From: My NCBI <efback@>

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> > > > > Subject: What's new for 'achalasia' in PubMed

> > > >

> > > > > pletchsr@

> > > >

> > > > > Date: Saturday, June 4, 2011, 6:50 AM

> > > >

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[Guest guest]

Cara,

I don't know for certain, but it's my and my doctor's thought that repeated

episodes of pneumonia (most likely caused by aspiration) is what caused the

scarring. As soon as I learned how to avoid aspirating, I stopped getting sick!

I was always so confused why my colds always went straight to my lungs. I

haven't seen a pulmonologist, though that's something I might want to do in the

future because I know I don't have the best lung capacity.

I always wondered if an enlarged esophagus could impede the space my lungs had,

but the doctors say no. It's interesting that it could have to do with the

trachea. I was told that since I've had the myotomy, there's a good chance my

esophagus will decrease in size. Mine's about 1 and 1/2 the times it should be

so not quite twice as big, so I'm hoping it'll go down in size. It's not a

guarantee but statistics show it's extremely possible. I'm hoping so.

I do know that I'm already feeling much better and more full of energy, so I'm

definitely looking forward to the future. I've lived with achalasia for so long,

I know that my habits of sleeping on two pillows, and taking precautions to not

aspirate will continue.

Chelsea

> > > > >

> > > > > >

> > > > >

> > > > > > From: My NCBI <efback@>

> > > > >

> > > > > > Subject: What's new for 'achalasia' in PubMed

> > > > >

> > > > > > pletchsr@

> > > > >

> > > > > > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

Chelsea,

Just to give you an idea of how the esophagus can obstruct the trachea. My

esophagus is about 4-5 times the size of a normal one. When I inhale i create a

low pressure situation when my lungs actually can over inflate. But when I

exhale the reverse happens and my esophagus presses and bends my trachea causing

a high pressure situation and the air is obstructed on the way out. its called

variable intrathoracic obstrcution and it mimics the effects of COPD.

So I can inhale deeply but my exhalation is abrupty shortened. Its weird and

even had the pulmonologist a little freaked out. We didn't know it was my

esophagus causing the obstruction at first. I needed to have a CT scan to

confirm it. So for a week I was freaking out that i had a cancerous tumor

growing on my trachea that was causing the obstruction.

Anyway, I hope with the myotomy that this situation is remedied as little since

my esophagus is emptying. I need to go back and go through all the pulmonary

testing. i haven't bothered to do it yet....

Cara

> > > > > >

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> > > > > >

> > > > > > > From: My NCBI <efback@>

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> > > > > > > Subject: What's new for 'achalasia' in PubMed

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> > > > > > > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

Thanks, Sandy. I don't even ask him anymore how he's feeling. I know that's not

very " wife-y " of me but he never shares how he's feeling even if I do ask, &

there is no getting him to the dr so.....I figure he's a big boy, if he feels

rotten enough he will get help!

> > > >

> > > > >

> > > >

> > > > > From: My NCBI <efback@>

> > > >

> > > > > Subject: What's new for 'achalasia' in PubMed

> > > >

> > > > > pletchsr@

> > > >

> > > > > Date: Saturday, June 4, 2011, 6:50 AM

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[Guest guest]

, I have found that if you elevate your bed with 8 inch blocks under

the head of the bed (bed posts should be on the blocks) and nothing under the

foot of the bed, you can sleep comfortably at this level.  The coughing you are

talking about, I also did, and that is what clued my mom in to tell the doctors

to find what was wrong and this was 34 years ago.  Try the elevation with the

blocks if he will, much more restful than the pillows.

 

Sharon Cline 

From: milwaukeemommy <milwaukeemommy@...>

Subject: Re: Fw: What's new for 'achalasia' in PubMed

achalasia

Date: Sunday, June 5, 2011, 8:59 PM

 

Thanks, Sandy. I don't even ask him anymore how he's feeling. I know that's not

very " wife-y " of me but he never shares how he's feeling even if I do ask, &

there is no getting him to the dr so.....I figure he's a big boy, if he feels

rotten enough he will get help!

> > > >

> > > > >

> > > >

> > > > > From: My NCBI <efback@>

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> > > > > Subject: What's new for 'achalasia' in PubMed

> > > >

> > > > > pletchsr@

> > > >

> > > > > Date: Saturday, June 4, 2011, 6:50 AM

> > > >

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> > > >

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> > > >

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> > > > > This message contains My NCBI what's new results from the

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[Guest guest]

Aspiration is a problem for me too as i have quite a hacking cough and the

doctor in the X-ray department where i had the Barium Swallow yesterday thought

that i had a col!

from the UK

From: Marcene Rainey <marcenerainey@...>

achalasia

Sent: Sunday, June 5, 2011 5:50 AM

Subject: Re: Fw: What's new for 'achalasia' in PubMed

 

Everything Sandy said about aspiration and coughing is also true for me.