New to the group

[Guest guest]

Hi Amy

Welcome to the group. We’re glad

you found us, and hope you continue to find comfort reading the posts. If you

have any questions, feel free to ask. That’s what we’re all here

for.

Take care,

in BC

New to the

group

Hello my name is Amy and by accident I found that

an achalasia

support group actually existed. I was diagnosed

with " A " about 20

years ago. At that time there was not much

information about the

disease. It was even more difficult to find a

doctor who actually

knew anything about " A " . I've always had

problems swallowing, but it

became a real issue when I turned twelve, it

wasn't until I was 19

that I actually was able to find a doctor to

diagnosis it. I've had

four dilatations and two ballon dilatations.

Today, I am able to eat

and keep down my food, but still have difficulty

swallowing at every

meal. I hardly ever regurgitate anymore, as I've

learned how to

force food down my esophagus. I've been able to

live with my

disease, but it is encouraging for the first time

in my life to not

feel alone. I've never met anyone with A, so

reading all the post

has brought back painful memories that I have long

suppressed. But

somehow there still is comfort in reading every

word. None of my

friends or co-workers know that I have

" A " , and I guess I seem

unsociable since I avoid eating out or around

others in fear that I

won't be able to get my food down. I now

look forward to opening my

inbox everyday to see the e-mail from the

achalasia support group.

This group is like coming home and having people

really know who I

am and what I go through.

Smiles,

Amy

[Guest guest]

Hello Amy,

Welcome ... believe me you will find great support here. I too

found this by accident, or perhaps I was meant to find it.

I hope you find alot of help and suggestions you can use.

Where are you located?

Kathie in Pittsburgh, PA

-- In achalasia , " amybee914 " <amybee914@y...> wrote:

>

> Hello my name is Amy and by accident I found that an achalasia

> support group actually existed. I was diagnosed with " A " about 20

> years ago. At that time there was not much information about the

> disease. It was even more difficult to find a doctor who actually

> knew anything about " A " . I've always had problems swallowing, but

it

> became a real issue when I turned twelve, it wasn't until I was 19

> that I actually was able to find a doctor to diagnosis it. I've had

> four dilatations and two ballon dilatations. Today, I am able to

eat

> and keep down my food, but still have difficulty swallowing at

every

> meal. I hardly ever regurgitate anymore, as I've learned how to

> force food down my esophagus. I've been able to live with my

> disease, but it is encouraging for the first time in my life to not

> feel alone. I've never met anyone with A, so reading all the post

> has brought back painful memories that I have long suppressed. But

> somehow there still is comfort in reading every word. None of my

> friends or co-workers know that I have " A " , and I guess I seem

> unsociable since I avoid eating out or around others in fear that I

> won't be able to get my food down. I now look forward to opening

my

> inbox everyday to see the e-mail from the achalasia support group.

> This group is like coming home and having people really know who I

> am and what I go through.

>

> Smiles,

> Amy

[Guest guest]

Hi Amy,

I am also new to this group. Your story seems so similar to mine,

but I have had A for 32 years. Do you also have spasms? I call

them " my attacks " . I was always excusing myself from the table until

I found this doctor in Cleveland Clinic. Now I eat as normal and

have gained some extra weight! Not that I wanted to. It is so

strange, but the pushing my food and working it through my esopheagus

is now just a memory. It is now working after the dilitation a year

and a half ago and previcid daily. I am so excited because the pain

of acting like a heartattack about 10 times a week all those years

have all diminished. I cannot thank Dr Vaezi enough from the CC. I

just love this site also. It is so informative. Take care.

- In achalasia , " amybee914 " <amybee914@y...> wrote:

>

> Hello my name is Amy and by accident I found that an achalasia

> support group actually existed. I was diagnosed with " A " about 20

> years ago. At that time there was not much information about the

> disease. It was even more difficult to find a doctor who actually

> knew anything about " A " . I've always had problems swallowing, but

it

> became a real issue when I turned twelve, it wasn't until I was 19

> that I actually was able to find a doctor to diagnosis it. I've had

> four dilatations and two ballon dilatations. Today, I am able to

eat

> and keep down my food, but still have difficulty swallowing at

every

> meal. I hardly ever regurgitate anymore, as I've learned how to

> force food down my esophagus. I've been able to live with my

> disease, but it is encouraging for the first time in my life to not

> feel alone. I've never met anyone with A, so reading all the post

> has brought back painful memories that I have long suppressed. But

> somehow there still is comfort in reading every word. None of my

> friends or co-workers know that I have " A " , and I guess I seem

> unsociable since I avoid eating out or around others in fear that I

> won't be able to get my food down. I now look forward to opening

my

> inbox everyday to see the e-mail from the achalasia support group.

> This group is like coming home and having people really know who I

> am and what I go through.

>

> Smiles,

> Amy

[Guest guest]

Welcome to the group. Take some time and read over some of the old posts. We will try to give you as much information as possible. Where are you from and what is your name? Also there is a list of Doctors in the group page under resources, doctors list. I have had a dilation done several to be exact and some were with botox. I would try to find a specialist and try to find out as much information as possible. My advice is do not go with botox, unless there is a reason that you are not able to have the surgery. This is a progressive disease so the best option is the surgery. Having dilation's and even botox causes scar tissue to develop and when and if you do go have the surgery done the percentage rate of a successful surgery drops considerably. I hope everything else is well with you and your family. Once again welcom to your new family....

in Suffolk

[Guest guest]

Hello tm

In reference to your comment:

Hello everyone I am new to this group I have been looking for support for awhile now I am 27 and have had A.

Welcome to the group. You will find a lot of support here.

According to most surgeons Botox and the pneumatic

dilatations cause scar tissue which makes surgery later

on more difficult and less successful. Botox is a very short

term fix as well....average I think is 6 months. I understand

it is more effective on older people than it is the young. However,

I had two when I was first diagnosed at the age of 70 and neither

helped me at all.

I have had two dilatations. The first one lasted 3.5 years and

I understand that is average. I certainly would not recommend

someone your age having either unless as says, you have

some reason not to have the surgery. While there is no permanent

cure the surgery has proven to be the longer term fix in most cases.

We are sorry you have achalasia, but glad to have you join our

family. Keep asking questions...nothing is too trivial.

Maggie

Alabama

[Guest guest]

My name is Tamara and I am from Utah. I have had the wrap done and

plenty of diliations to many to count seen at least 10 dr's in utah

I was at the point of going to europe to find a doc before I found

this one at the UofU. I don't get it jpw can so many of us have A

and nobody knows anything but to look at you and say I'm sorry but

you have to deal with this. my doc now is waiting for me to get

worse or asperate because I am being so stuborn I do not want more

surgery cuz within weeks to months I am back to the food getting

stuck my weight has finally stabalized so to me I guess I'm o.k. I

just wish the pain would go away. does anyone have white foamy like

stuff come up. I also get gas pockets come up that are very loud and

I for one can not control when I burp lol good thing my family is

tolerant of me:)thanks again for welcoming me.

[Guest guest]

The overwhelming consensus in the literature that I've found on the

Internet is there is no indication that people who have relatives with

'A' are more likely to get 'A' than people who don't have relatives

with 'A'.

Jeff

>

> Hello everyone I am new to this group I have been looking for

> support for awhile now I am 27 and have had A. for almost 20 years

> now. I was wonering if anyone else is this young also looking for

> links as to how I got this my seven year old has showed signs

> although not as extreme as mine wondering if anyone knows if this is

> hereditary or not

[Guest guest]

Hello Tamara - welcome to the group. We have quite a few younger members and

some who had A as children so there will be people your own age to chat to.

Have read this post and the next one you sent, I can understand your

reluctance to have more surgery. I do think you would be wise to go to a

centre where they specialise in Achalasia. Your doctors may have only seen a

few cases and have possibly not had the experience the others have when they

have many patients with A. One such centre is Cleveland Clinic, but there

may be others.

Your circumstances may be a bit different and it may be worth a trip way out

from home - even just for a second opinion.

There is some discussion going on about hereditary A - the text books all

say no it is not but there are a couple of people who have brothers or

sisters with A. If you can look back at some of the post for the last month

you will find their details.

'White foam' or froth is something that many of us have. If you have food

stuck in your Oesophagus your body tries to get it unstuck by pouring fluid

onto it - so your mouth water, your eyes run as does your nose and you

swallow like crazy to get the saliva any mucous down. When you swallow you

also swallow air which gets mixed up with the mucous = white foam. I find

that when this happens it will seldom help push the food down, and the only

thing is to regurgitate and get rid of the lot food and mucous.

Many of us have an 'acid' build up Sounds to me like it is stomach acid

[that's what happens to me - it burs like fire] You should perhaps be on

medication to stop your stomach forming so much acid - they are called

proton-pump inhibiters [PPI] e.g. Nexium, Losec, Lanzor.

If it is acid formed by rotting food that has collected in your oesophagus

then it is usually not such bad burning pain, and this medication will not

help for that. I find bland food such as oats porridge will settle it -

sometimes something like Tums or even chocolate helps.

Learn what you can about A - there are lots of links and info on the

website, but a search though Google will bring up a lot of interesting

stuff. The more informed you are - you will soon know more than your

doctors - the better you will feel about making decisions. I would

definitely NOT have botox even once now that I know what I do about A.

Keep asking questions - someone will answer.

Good wishes,

Joan

new to the group

>

>

> Hello everyone I am new to this group I have been looking for

> support for awhile now I am 27 and have had A. for almost 20 years

> now. I was wonering if anyone else is this young also looking for

> links as to how I got this my seven year old has showed signs

> although not as extreme as mine wondering if anyone knows if this is

> hereditary or not also does anyone else have major acid build up in

> the top portion of the stomach almost feels like battery acid is

> being poored down your throat the chest pains are bad to. dr's don't

> now what to do with me I have seen so many finally found one at the

> university of utah that specalizes in A. he wants to do botox thinks

> it will help with the eshpagus spasms. I don't like the idea has

> anyone had the pheanmatic dilation? sorry I have so many " ? " it's

> just I have never been able to talk to anyone that has this and can

> understand what it is like.

>

>

>

>

>

>

>

>

[Guest guest]

Hi, I just wanted to say welcome, I am really new to the group also,

so I'm not the best person for information. I do know though that the

botox is not the way to go especially since you are so young, as long

as you are healthy there are better options. It becomes less

effective over time and causes scar tissue to build up on the LES

creating all sorts of other problems. You will get a lot of help here

the people are wonderful. I'm sure someone here will help you with

how to start finding a good Dr. in Utah ect. In the mean time there

is tons of information about the botox, the dialation and the

surgery, and achalasia, if you click on links or database to the left

of the screen in the green box. Happy reading! in WA

>

> Hello everyone I am new to this group I have been looking for

> support for awhile now I am 27 and have had A. for almost 20 years

> now. I was wonering if anyone else is this young also looking for

> links as to how I got this my seven year old has showed signs

> although not as extreme as mine wondering if anyone knows if this

is

> hereditary or not also does anyone else have major acid build up in

> the top portion of the stomach almost feels like battery acid is

> being poored down your throat the chest pains are bad to. dr's

don't

> now what to do with me I have seen so many finally found one at the

> university of utah that specalizes in A. he wants to do botox

thinks

> it will help with the eshpagus spasms. I don't like the idea has

> anyone had the pheanmatic dilation? sorry I have so many " ? " it's

> just I have never been able to talk to anyone that has this and can

> understand what it is like.

[Guest guest]

I am on nexium twice daily still pain breaks threw the dr's said to

deal with symptoms as they come mostly I take a pain pill or anxiety

med but with kids you really can't do this during the day when my

husband comes home he will take over for me but I am sure as you all

know the side effects of " A " control your life regardless of what

you try to do to stop the symptoms. I got told A came from south

america they said drinking water their did it I for one have never

been there I was also told you got it from a bug bite their.The more

I learn the more I believe at least in my case I was born this way.

sometimes I wonder what I did in my past lifes to deserve this LOL.

my family has learned to adjust to me having A. has anyone thought

about the new procedure where they take out your E and put your

stomach up there next to your heart they have to reduce the size of

your stomach but when your E deteriates what other choices are thier

I for one don't want a feeding tube for the rest of my life. at this

point I am just glad to have people to talk to

[Guest guest]

Hello!

Welcome to the group! You will find so

much information here, and I hope you get as much out of it as many of us have.

There are a few parents of young children on

this board. I’m sure they will help you out if needed. I think

there are about 5 of them?? As far as being hereditary, there is little possiblility

of this. Some people wonder of course, and there is even a sister-brother

pair here who both have A. This is VERY uncommon. As far as the botox,

please look into it deeply before agreeing. There are many articles saying

that botox is only a temporary treatment, and can negatively hinder the outcome

of a future myotomy if needed.

Where are you located? We have members

all over the world, and I’m sure there is someone in your state/country (?)

can help you find a great GI/surgeon if needed.

Take care!

in BC

new to the

group

Hello everyone I am new to this group I have been

looking for

support for awhile now I am 27 and have had A. for

almost 20 years

now. I was wonering if anyone else is this young

also looking for

links as to how I got this my seven year old has

showed signs

although not as extreme as mine wondering if

anyone knows if this is

hereditary or not also does anyone else have major

acid build up in

the top portion of the stomach almost feels like

battery acid is

being poored down your throat the chest pains are

bad to. dr's don't

now what to do with me I have seen so many finally

found one at the

university of utah that specalizes in A. he wants

to do botox thinks

it will help with the eshpagus spasms. I don't

like the idea has

anyone had the pheanmatic dilation? sorry I have

so many " ? " it's

just I have never been able to talk to anyone that

has this and can

understand what it is like.

[Guest guest]

Hello Tamara!

You’re from Utah – so there must be

some great doctors there. Whatever you decide make sure you’re confident

with the GI/surgeon. Also the white foamy stuff is normal for some people. I had

it before I had the surgery, and not since. As for your burping, you are not alone.

This is normal for some also! Very annoying, but just that!

Re: new to

the group

My name is Tamara and I am from Utah. I have had the wrap

done and

plenty of diliations to many to count seen at

least 10 dr's in utah

I was at the point of going to europe to find a doc before

I found

this one at the UofU. I don't get it jpw can so

many of us have A

and nobody knows anything but to look at you and

say I'm sorry but

you have to deal with this. my doc now is waiting

for me to get

worse or asperate because I am being so stuborn I

do not want more

surgery cuz within weeks to months I am back to

the food getting

stuck my weight has finally stabalized so to me I

guess I'm o.k. I

just wish the pain would go away. does anyone have

white foamy like

stuff come up. I also get gas pockets come up that

are very loud and

I for one can not control when I burp lol good

thing my family is

tolerant of me:)thanks again for welcoming me.

[Guest guest]

Hello

I am 30. My problems started at 28, but i was not diagnosed until

29. I have three kids and hope that this is not hereditary. My 11

year old sometimes tells me that the food he swallows is going down

slow, I just think that maybe he is starting to get paranoid about

swallowing.

As for the chest pains they are pretty bad for me too. Water is the

only cure for me and if i drink water right at the start it will go

away, almost immediately. I dont get the feeling of battery acid

only frothing or excess saliva in my throat.

Biljana

>

> Hello everyone I am new to this group I have been looking for

> support for awhile now I am 27 and have had A. for almost 20 years

> now. I was wonering if anyone else is this young also looking for

> links as to how I got this my seven year old has showed signs

> although not as extreme as mine wondering if anyone knows if this

is

> hereditary or not also does anyone else have major acid build up

in

> the top portion of the stomach almost feels like battery acid is

> being poored down your throat the chest pains are bad to. dr's

don't

> now what to do with me I have seen so many finally found one at

the

> university of utah that specalizes in A. he wants to do botox

thinks

> it will help with the eshpagus spasms. I don't like the idea has

> anyone had the pheanmatic dilation? sorry I have so many " ? " it's

> just I have never been able to talk to anyone that has this and

can

> understand what it is like.

[Guest guest]

Hi,Welcome to the group. With regards to pneumatic dilatation - I

had one approx. 12 yrs ago. Unfortunately, the dr was a little over

zealous & I ended up with a tear in my E. Instead of an outpatient

procedure, I was in the hosp. for a wk on an iv. It did, however,

give me relief for approx. 3 yrs. Now, the surgery I'm scheduled for

will take a little longer due to scar tissue - also, the results

might not be as beneficial. The dilatation does work, but it's

usually only a temporary solution. However, the dr who did my last

endoscopy was going to dilate again if possible. However, due to the

condition of my E. & the scar tissue, he said that wasn't a

possibility. If you decide on dilatation, my suggestion is to be

sure you have a VERY experienced dr do it.

[Guest guest]

Hi, I am fairly new to the group and I read your message with interest about the burps. I too have them and in fact they progress even louder than burping, actually uncontrollable screaming! If you would like to talk with me about this issue, feel free to answer here or use my personal email address - dpogorzaly@...

[Guest guest]

It probably would not be a good idea that you have an esophogectomy! That is for people that have cancer. It is too radical a solution!

I was also told that A came from South America insects. I haven't been there either. The furthest South I have ever visited is Florida.

[Guest guest]

I have a question for you, do the burps also happen when you walk or change positions?

I agree with you, the doctors do not know or understand why this is a problem. I have been to three GI including Mayo and all I was told was that I am swallowing air. Sometimes I could swear I feel the LES in spasms when this is happening. None of the doctors I have seen have connected this problem to A.

[Guest guest]

Hi,

You are referring to Chagas' disease which is a parasite [Trypanosoma

cruzi ]transmitted by the bite of a certain insect [Reduvidae - cone nose or

kissing bugs]and has nothing to do with the water. [for those of you who

collect trivia - Darwin is thought to have had Chagas disease]

You are unlikely to have this disease if you have not been to South America,

but there have been cases further north.. It causes disease in other organs

not just the oesophagus.

[source: Control of Communicable Diseases Manual : Chin 17th Edition]

When they take out your oesophagus and pull up your stomach it is called an

'Oesophagectomy with Gastric pull-up. It is a last resort surgery, but those

who have had it say it was worth the rough recovery time.It is not 'new'

surgery but it is not done often and usually only when there are no other

options. That is what I am waiting for - when I get to see the surgeon

eventual & when my life settles down a bit !

Joan

Re: new to the group

>

>

> I am on nexium twice daily still pain breaks threw the dr's said to

> deal with symptoms as they come mostly I take a pain pill or anxiety

> med but with kids you really can't do this during the day when my

> husband comes home he will take over for me but I am sure as you all

> know the side effects of " A " control your life regardless of what

> you try to do to stop the symptoms. I got told A came from south

> america they said drinking water their did it I for one have never

> been there I was also told you got it from a bug bite their.The more

> I learn the more I believe at least in my case I was born this way.

> sometimes I wonder what I did in my past lifes to deserve this LOL.

> my family has learned to adjust to me having A. has anyone thought

> about the new procedure where they take out your E and put your

> stomach up there next to your heart they have to reduce the size of

> your stomach but when your E deteriates what other choices are thier

> I for one don't want a feeding tube for the rest of my life. at this

> point I am just glad to have people to talk to

>

>

>

>

>

>

>

>

[Guest guest]

I can sympathize with you. I hope you don't have to resort to surgery as there are always risks involved. In my case, I can't have surgery as my doctors feel it is too risky due to overweight. What I can't understand is why the drs are so willing to do a gastric bypass for me if I said I was willing (which I am not) which is major surgery, but not willing to do any other surgery? Keep on writing! You will feel better.

[Guest guest]

I think that you are thinking of Chagas disease. Chagas disease has

similar symptoms to achalasia, but is caused by a parasite.

Interestingly, achalasia victims are acceptable blood donors while

Chagas disease victims are not, in spite of the similarity in

symptoms. I don't have any recollection of ever having had a blood

test to check for Chagas disease. Can they tell which you have by the

endoscopy? Or do they just assume that if you've never been to an area

where Chagas disease is known than you don't have it? Do blood banks

(in the USA) screen for Chagas disease (other than asking you if you

have it)?

Jeff

>

> I was also told that A came from South America insects. I haven't

been there

> either. The furthest South I have ever visited is Florida.

[Guest guest]

nobody has ever said any thing to me about Chagas disease Just that

they think that is where A comes from who knows anymore. I have

never donated blood before so I'm not sure if A patients can donate

or not. I do think there is some sort of link to A being hereditary

I have family as well that have simalar symptoms to mine though not

as severe Tamara from Utah of all places lol

>

> Jeff

>

>

> >

> > I was also told that A came from South America insects. I haven't

> been there

> > either. The furthest South I have ever visited is Florida.

[Guest guest]

> Hi, I am fairly new to the group and I read your message with

interest about

> the burps. I too have them and in fact they progress even louder

than

> burping, actually uncontrollable screaming! If you would like to

talk with me about

> this issue, feel free to answer here or use my personal email

address -

> dpogorzaly@a...

The gurguling get's so loud that my Husband looks at me and ask's if

I need to be burped lol it is wierd though that feeling when it

comes up the looks you get from others when it happens I find that

if I bend down to stretch reach for my toes with head down it comes

up faster that way I suppose we all find are ways to solve things I

wish we could explain all this to our dr's but I don't think they

truly understand

[Guest guest]

> It probably would not be a good idea that you have an

esophogectomy! That is

> for people that have cancer. It is too radical a solution!

>

> I was also told that A came from South America insects. I haven't

been there

> either. The furthest South I have ever visited is Florida.

But how long do you suffer before you have had enough are chances

of " E " cancer is greater anyway because they are so deteriated as it

is after haveing the heller mytomy balloon diliations pneumatic

dilations what choices are left do you know of any I for one would

prefer not to have botox injection to much danger if you ask me my

dr's wont do the esophogectomy at least for another ten years but

they do say eventually I will have but were I am only 27 they don't

think my survival rate would be to good. All I ask from the lord is

to let me see my kids raised let them know who there mother is not

just have a picture of me sorry I get very upset over this disease

just doesn't seem fair the dr's need to fing answers they have

grown " E " for animals why not humans.

[Guest guest]

yes they do happen when I walk or change position normally when I

eat though. Tamara

> I have a question for you, do the burps also happen when you walk

or change

> positions?

>

> I agree with you, the doctors do not know or understand why this

is a

> problem. I have been to three GI including Mayo and all I was

told was that I am

> swallowing air. Sometimes I could swear I feel the LES in spasms

when this is

> happening. None of the doctors I have seen have connected this

problem to A.

[Guest guest]

Hi all,

My name Amy and i just had my surgery last Thursday. I just wanted

to say hi to everyone and ask when the next get together will be.

Thanks