Re: newbie, just saying hi

[Guest guest]

Hello and welcome to our family. I am sorry you are going through this. If you

have any questions please feel free to ask.

in Georgia

Sent from my iPhone

On Mar 12, 2012, at 9:40, " Lally " <jennifer.m.lally@...> wrote:

> Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> Ive also been suffering with esophageal spasms, though this seems to be

improving.

> I look forward to reading your posts and having people who understand the

condition to talk to!!

>

>

>

>

> TODAY(Beta) • Powered by

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[Guest guest]

, so sorry to hear you are having that much trouble.

But welcome to our group.

I am a newbie as well. Diagnosed in October of 2011 after 5 months of issues.

There are many knowledgeable people here with this disorder.

Best of luck!

Kim A

________________________________

From: Mueller IV <mt4mar@...>

" achalasia " <achalasia >

Sent: Monday, March 12, 2012 8:28 AM

Subject: Re: newbie, just saying hi

 

Hello and welcome to our family. I am sorry you are going through this. If you

have any questions please feel free to ask.

in Georgia

Sent from my iPhone

On Mar 12, 2012, at 9:40, " Lally " <jennifer.m.lally@...> wrote:

> Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> Ive also been suffering with esophageal spasms, though this seems to be

improving.

> I look forward to reading your posts and having people who understand the

condition to talk to!!

>

>

>

>

> TODAY(Beta) • Powered by

> Healthy superfoods go head-to-head

> Strawberries and blueberries are both great for you, but one beats the other.

> Privacy Policy

[Guest guest]

Wow, and Welcome, . That's a lot on your plate this past year. Do they

have ANY idea WHY it keeps closing again? Very hard to figure out this damned

disease, to say the least. I was in ER the end of September, and got diagnosed.

But I'd been ignoring/living with " something " for five or six years. And spasms

periodically for thirty years before that that I just meditated my way through.

Then last summer, the gas pedal got stuck, and I was heading towards a brick

wall at 90mph. Took three months from the diagnosis to the Heller/Dor/hernia

repair. Since, recovery (such as it is) has been very slow, but very steady.

(knock on wood!)

This is a very loving and supportive crew you've stumbled on. And reading the

archive is *invaluable* to get a sense of how much alike and how very different

we are in this.

's been through one whole helluva lot more than me, and is very helpful.

xox

in the Wilds of WV

>

> Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> Ive also been suffering with esophageal spasms, though this seems to be

improving.

> I look forward to reading your posts and having people who understand the

condition to talk to!!

>

[Guest guest]

Thanks for the welcome

Not a clue why it recurred, but does anyone even know why it happens in the

first place? All my consultant could tell me is the the nerves just stop

working!! As a result I have very poor peristalsis as well, which I'm told

nothing can be done for. So I dunno!

> >

> > Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> > Ive also been suffering with esophageal spasms, though this seems to be

improving.

> > I look forward to reading your posts and having people who understand the

condition to talk to!!

> >

>

[Guest guest]

hope you get better, jennifer

it sounds like fairly aggressive treatment, so youre better than most to benefit

> > >

> > > Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> > > Ive also been suffering with esophageal spasms, though this seems to be

improving.

> > > I look forward to reading your posts and having people who understand the

condition to talk to!!

> > >

> >

>

[Guest guest]

Hi ,

I got diagnosed in Sep 2011 too! Also had the HM (Nov) and my first dilation 2

weeks ago. Curious that you are heading for your 5th dilation already. That

seems a lot in such a short time, especially after having the HM.

(Australia)

>

> Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> Ive also been suffering with esophageal spasms, though this seems to be

improving.

> I look forward to reading your posts and having people who understand the

condition to talk to!!

>

[Guest guest]

Maybe it's just me, lol! But I'd like a guess from my doc as to why I'd be in

the five or ten percent that it *didn't* work for. . . . got a

guesstimate the the cut onto to stomach hadn't been long enough. Scar tissue

might be another reason. But to keep pushing dilations at this rate kind of

sounds like they might be in over their heads.

Are you regurging a lot? Just some foods? All foods? Liquids? What size

balloons are they using? The 15mm to 20mm ones are NOT going to work.

Achalasia seems to need 30mm to 35mm to 40mm.

Have you had a manometry since? A barium swallow? Or are they just winging it?

Does the surgeon have an explanation (there usually is one if asked). . . .

Something, any ways.

At any rate, good luck!

>

>

> Thanks for the welcome

>

> Not a clue why it recurred, but does anyone even know why it happens in the

first place? All my consultant could tell me is the the nerves just stop

working!! As a result I have very poor peristalsis as well, which I'm told

nothing can be done for. So I dunno!

>

>

[Guest guest]

Hi , and welcome. You've found a wonderful and supportive group. It

sounds like you've been through a lot and still have lots to figure out. I hope

you have a great surgeon - kee us posted on your progress.

Kim

________________________________

From: Lally <jennifer.m.lally@...>

achalasia

Sent: Monday, March 12, 2012 9:40 AM

Subject: newbie, just saying hi

 

Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

Ive also been suffering with esophageal spasms, though this seems to be

improving.

I look forward to reading your posts and having people who understand the

condition to talk to!!

[Guest guest]

Hi ,

I did have another barium swallow done, which showed the LES had tightened up

again. Not sure what size balloon he used, but I know he's gone up!!

He doesn't want to repeat the surgery, thinks the perforation risk is too high.

I'm not regurgitating much at the moment, just a little chicken the other day.

Mostly what gets stuck goes down eventually with water/walking etc. oes

I think my 1 year old thinks its normal to eat with your arms over your head!!

> >

> >

> > Thanks for the welcome

> >

> > Not a clue why it recurred, but does anyone even know why it happens in the

first place? All my consultant could tell me is the the nerves just stop

working!! As a result I have very poor peristalsis as well, which I'm told

nothing can be done for. So I dunno!

> >

> >

>

[Guest guest]

Hi ,

I suppose it is a lot in a short time, but surgeon doesn't want to repeat the

surgery and wants to try and treat it this way.

How are you doing?

> >

> > Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> > Ive also been suffering with esophageal spasms, though this seems to be

improving.

> > I look forward to reading your posts and having people who understand the

condition to talk to!!

> >

>

[Guest guest]

I am waiting to see my surgeon in 12 days as a follow up to the dilation. The

way I see it he will suggest 1 of 3 things.

1 put up with it and do nothing

2 a second dilation

3 surgery again!

I am beginning to wonder whether some of us will ever lead normal lives again.

Makes me think that for those of us who have failed HM's, they fail because

nothing can be done for us.

This will come across as very negative, but how many times can I take 1 step

forward, only to take 2 more steps backward?

Wondering if those of you who have had A for 10 or 20 years have any motility

left. Mine went after being diagnosed only 6 months ago. I thought that seemed

quick, and am wondering it that's why nothing seems to work!

> > >

> > > Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

> > > Ive also been suffering with esophageal spasms, though this seems to be

improving.

> > > I look forward to reading your posts and having people who understand the

condition to talk to!!

> > >

> >

>

[Guest guest]

I have gone through a whole week without any spasms during the night and have

only had one during the day.

That's a bummer about the US Space program ! If your HM was a fail 20

years ago, how have you eaten for the last 20 years?

I know that we are all different, but it seems to me that some of us will get

success and some wont. Some get it quickly, and some won't get it at all! This

condition is a guessing game for doctors, which is why some say HM while others

say dilation or botox. They don't know which one is going to work best, so they

do them all and cross their fingers!

> > > >

> > > > Hello all, my name is , I live in Ireland and I was diagnosed

with achalasia Sept 2011, after difficulty swallowing for only 3 months. But

then my les completely shut and I needed an emergency HM, fundoplication and a

hernia repair, as the surgeon was there!! Since then I've had 4 dilatations, and

am due a 5th in May, as the achalasia recurred.

> > > > Ive also been suffering with esophageal spasms, though this seems to be

improving.

> > > > I look forward to reading your posts and having people who understand

the condition to talk to!!

> > > >

> > >

> >

>

>

>

>

>

[Guest guest]

First -- welcome ! Ireland --- oh how I would love to visit some day!

Second -- I really wish my husband would get to a doctor. Of course, he needs

help & I want him to get that help. But I'm also SO curious as to what they

would do for him. All this talk about dilations (is it " dilation " or

" dilitation " ??) & repeat HM's & botox -- I wonder which route they would go.

He's still kicking along -- subsisting on soup & his latest concoction --

tuna/avocado salad. He has no problem getting bread down. But I think lunch meat

is now out so it's either cheese or this tuna mix. I'll refrain from saying what

I think about that mixture, but whatever he can get down -- with the warm

weather coming he will need lots of energy. He's a welder. I don't know how

anyone can weld in 100 degree heat, but welding in 100 degree heat with no food

in the system? I don't know how he does it!

> > > > >

> > > > > Hello all, my name is , I live in Ireland and I was diagnosed

with achalasia Sept 2011, after difficulty swallowing for only 3 months. But

then my les completely shut and I needed an emergency HM, fundoplication and a

hernia repair, as the surgeon was there!! Since then I've had 4 dilatations, and

am due a 5th in May, as the achalasia recurred.

> > > > > Ive also been suffering with esophageal spasms, though this seems to

be improving.

> > > > > I look forward to reading your posts and having people who understand

the condition to talk to!!

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

, my kid went through something similar when he was 17 ~~ He'd wanted to

be a pilot since he was three and got his first wings from a United Pilot. At

17, he got his first pair of glasses, and washed out of the air force. He went

into a depression for a good year. We offered him private flight lessons, but he

said, with reason, that we could never pay for enough hours to make him

competitive flight/time wise with an air force pilot. Then came out as a double

physics/astronomy major (did grad work at NASA). If he couldn't fly, he *could*

go into space. . . . In the event, he settled at the doctoral level for plasma

physics at UC/Lawrence Livermore. And is now working on the Navy's rail

gun. . . . And helping his *mother* make it to the hospital for her Heller's.

Perhaps it's always *something*? I could claim my kids kept me from being a

great painter or poet -- but it was never any contest: if the kids needed

something, away went the pen, away went the paints. My choice after all, eh?

xox

>

> I have had achalasia for 30 years, and it is the primary reason why I was not

accepted into the United States Space Program. Without any motility in my

esophagus, I rely 100% on the gravitational field in which I reside.  Just as a

waterfall washes everything down the precipice, driven by gravity, so does

various forms of liquid for the food I eat. Without gravity, and without

liquids, I would not be here to talk about this (so eloquently). Still I was an

end stage achalasia patient when I had my HM over 20 years ago, which the

surgeon said was his first failure (first admitted failure at any rate).

>  

> As I've said to you before, , I understand and feel for you the

depression that often goes with this.  Please understand that a return to

" semi-normal " eating is often a process that takes time. When you read about

others who have the HM and eat again right away, I understand how that can be a

bummer for those not achieving that type of result. 

>  

> You will be fine again. Just stay on top of this, stay in touch with the

surgeon, monitor your progress to see what works and what doesn't work, and

eventually you will be eating better, sociallizing, and traveling again.  Often

times with a dilatation, since the esophagus has received such an " insult " it

takes time to recover (could be a swelling that has to go down).  Have you come

to any conclusion as to which drink works best for you?

>  

>

>  

> PS:  How have you been doing with the 4:30am spasms lately?

[Guest guest]

, I thought you were serious about the space program! It did kind of

make me laugh though when I thought about having A in space with no gravity!!

> >

> > I have had achalasia for 30 years, and it is the primary reason why I

> > was not accepted into the United States Space Program. ...

> >

>

> Hi, . It looks like you are making a tongue in cheek point here,

> but it is hard to tell without a voice to go with it. Either way, you

> are right, as you have pointed out before, life goes on, sometimes even

> taking us to great things we didn't plan on and would have missed with

> our original plans. Space or no space program you have had an adventure.

> Why look back more life is ahead.

>

> notan

>

>

[Guest guest]

Hi ,

 

Behind on my emails but so sorry to hear about all the trouble you are having.

Welcome to the group though! There are so many knowledgeable people here. I am

not one of them yet as I was just diagnosed on October 2011 after 6 months of

difficulty swallowing. But am learning to mange this the best I can.

 

I am wondering if they did a regular dilation or a graded pneumatic dilation (

balloon size must be 30mm-40mm). Standard size is 20mm and won't work on

Achalasia patients.

 Kim A

Wisconsin

________________________________

From: Lally <jennifer.m.lally@...>

achalasia

Sent: Monday, March 12, 2012 7:40 AM

Subject: newbie, just saying hi

 

Hello all, my name is , I live in Ireland and I was diagnosed with

achalasia Sept 2011, after difficulty swallowing for only 3 months. But then my

les completely shut and I needed an emergency HM, fundoplication and a hernia

repair, as the surgeon was there!! Since then I've had 4 dilatations, and am due

a 5th in May, as the achalasia recurred.

Ive also been suffering with esophageal spasms, though this seems to be

improving.

I look forward to reading your posts and having people who understand the

condition to talk to!!

[Guest guest]

Hello, .

wrote:

>

> ... Since then I've had 4 dilatations, and am due a 5th in May, as

> the achalasia recurred.

> Ive also been suffering with esophageal spasms, though this seems to

> be improving. ...

>

You may want to find out what size balloon he is using. He may not be

confident enough about using a bigger one but that may be what is needed.

The LES is a muscle so it can become stronger with use. Normally there

would be two types of nerve signal to the LES one type telling it to

relax and one to constrict. Both go on at the same time and it is the

difference that determines how strongly the muscle contracts or how long

and often it is relaxed. In achalasia the signal to relax is broken so

the muscle works harder. That makes it stronger. Dilatation stretches

the LES muscles until the muscle fibers break. That weakens the LES but

it tries to heal forming scar tissue. In time the muscle works and

builds up while the scar tissue shrinks pulling the muscle tissue around

it tighter. (In some people the scar tissue can grow or create adhesions

creating problems). In time the LES becomes tighter and stronger again.

We don't all scar, heal, or build muscle the same so some people do

better with dilatation than others.

Over time we can loose more peristalsis so it becomes harder for food to

make it through the LES even if the LES stays the same.

Magnesium is a smooth muscle relaxer and also seem to help some types of

muscle spasms. In achalasia it seem to help some but not others. It may

be counterproductive though for peristalsis (smooth muscle action). You

just have to try and see if it helps.

notan