My Achalasia Story

March 13, 2003

Hi. I wanted to let you know that I added my story to the files. It

is the story of my journey with achalasia from my first symptoms to

this day. I am long winded, so if you get bored easily please don't

read it. I hope I didn't write too much. I just shared from my

heart. Finding this message board has been such a wonderful gift. I

don't post much, but I read often. Thank you all for keeping it

going! If you want to read my story, go to the left of the screen

and click on " Files. " Then go to " personal story. " Then " Joann's

Achalasia Story. " Joann

September 1, 2008

Punee

We all have our own ways of dealing with how to get food down!! What works

for one may or may not work for another!!! I did the breath holding thing

before my surgery too! I have had symptoms since I was 12, I'm now 37. So

yes I probably had it as a child and just didn't know it. The chest pains

are called non cardiac chest pain (NCCP) and they hurt like the dickens!!!

I wish you well with your surgery!!! Usual recovery is a week or two and

then about a month until you feel pretty normal again. As for the tube in

your nose.it just depends one the doctor and their way or doing things!! My

teeth have always been sensitive and I think its mostly due to the lack of

vitamins through out the years!!!

I'm sure there will be plenty of others that will chime in for you.

Where are you located??

From: achalasia [mailto:achalasia ] On Behalf

Of puneet721

Sent: Monday, September 01, 2008 8:52 PM

achalasia

Subject: My Achalasia Story

Hi all,

While I'm new to posting on this forum, I've actually been reading

many of the posts and gaining comfort from hearing your stories over

the past few weeks. I was hoping to share my own achalasia

experience and hopefully get some of your thoughts/advice as I face

surgery in 2 days!

About a year ago, I started getting horrible chest pains about every

other week. After asking my doctor about it, I was told that I was

just too stressed out/type-A and needed to relax more.

Unfortunately, the chest pains persisted and increased in pain and

frequency over the months. After checking with a heart doctor and a

GI, including having an endoscopy done, I was told I was fine.

However, the chest pains got even worse, to the point where I could't

eat anything. After much searching, I found a doctor who told me

about achalasia, and now I'm about to undergo the Heller myotomy w/

wrap in a couple of days.

While I've been waiting, I've found that I could eat with the help of

B-complex vitamins and aloe vera juice. Basically what I do is eat

some food, drink a bunch of water, and hold my breath until the

pressure builds and, instead of vomiting, I push through and can feel

my sphincter open up and let in a bit of food. I don't know if this

is a healthy strategy, but it has kept at least a bit of food in me.

I also was told by my doctor that I probably got achalasia as a kid,

and it has been progressing over the past 10 years or so (I'm 22

now). Did any of your doctors mention this to you as well?

My teeth have also been pretty sensitive over the past year or so,

and I'm not sure if this is related to achalasia. Did any of you

have this experience?

As I prepare for surgery, I also wanted to ask you for any advice you

may have. I am young and have always tried to eat healthy and

exercise, so this has been particularly frustrating for me. I also

really struggled with having a tube in my nose during the manommetry,

which worries me for what I'll have in me post-surgery. How long can

I expect till I am feeling well again? What should I expect post-

surgery, so that I can set my expectations correctly? Is there

anything that I will never be able to do again? My doctor says that

I won't be able to lift anything heavy for about a year, which I

guess rules out the gym, and my guess is I probably can't drink

alcohol again either. Not huge inconveniences if I can eat, but I

guess it's good to know what my limitations may be in the future.

Thanks in advance for all of your help, and I look forward to

(hopefully) giving you good news about my surgery in a few days!

September 2, 2008

puneet721 wrote:

> I also was told by my doctor that I probably got achalasia as a kid,

> and it has been progressing over the past 10 years or so

Have you had symptoms that long? If not, what is his reason for saying

that? Some have been told that, but I think most would have been told

otherwise. If you have primary achalasia (achalasia that is not

secondary to some other disorder) it is what is called idiopathic which

means no one knows what causes it. Primary achalasia is more common to

be first diagnosed in older people. More common at 50 than even at 30.

It is much rarer in children.

> My teeth have also been pretty sensitive over the past year or so,

If you mean your teeth as a group can hurt for no apparent reason that

may be the NCCP. Some people feel the pain in the roof of the mouth and

some feel it in the teeth. Heart attacks can also be felt like that

instead of where you would expect.

>

> ... My doctor says that

> I won't be able to lift anything heavy for about a year,

Why does he say that? How is the surgery being done? Is it laparoscopic

or open? Most people are on lifting restriction for something like 2 to

6 weeks. Either way, I have never heard of anyone being on restrictions

that long for a Heller myotomy and fundoplication. Has this surgeon done

this surgery before? I told my surgeon at Mayo, who has done many Heller

myotomies, that I often lift objects that are over a hundred pounds and

I was told not to do that for 6 weeks but I could do what I wanted after

that time. I don't understand why you are being told what you are. Your

situation may be special so I can't comment on what you should expect.

notan

September 2, 2008

Hi,

You already got pretty good answers from and Notan.

Notan is right (as usual), that lifting after a myotomy shouldn't be done for

say 6 weeks. I have had two open myotomies and even after an open myotomy not

lifting for 6 weeks is enough, after that you are able to do that again.

There are no alcohol restrictions after a myotomy. After a myotomy life should

get back to normal for a very big part.

As for the part where your doc said you probably got your achalasia as a kid: it

made me frown a bit... I cannot imagine one reason why to say that.

Do you know how experienced he is in performing myotomies and treating

achalasians? If you don't, please ask him before you have him work on you.

Experience is of the utmost importance for increasing chances for a successfull

myotomy. By the way having performed a few myotomies doesn't mean one is

experienced, one is experienced if one has done a whole lot of them. But I guess

you will have read about that the last couple of weeks here on the board as

well.

Anyway, I wish you very good luck with your surgery.

Isabella