New member

[Guest guest]

, call me suspicious, but why do we have to give you our personal information on your website just for you to share your information with us? Everyone in this group shares their information freely and publicly; for you to refuse to do the same makes me what you have to hide???Debbi in Michigan

Hi all just joined the group, have been living with achalasia since Dec 02. I have just put up a website at http://www.achalasia.net and its not even in the search engines yet, but would be interested in feedback from anyone here, more to come....

[Guest guest]

woops, that'll teach me to not proofread when I'm interrupted in the middle of a sentence! that should have been:for you to refuse to do the same makes me wonder what you have to hide???

Debbi, who will try to write complete sentences in the future!

, call me suspicious, but why do we have to give you our personal information on your website just for you to share your information with us? Everyone in this group shares their information freely and publicly; for you to refuse to do the same makes me what you have to hide???Debbi in Michigan

Hi all just joined the group, have been living with achalasia since Dec 02. I have just put up a website at http://www.achalasia.net and its not even in the search engines yet, but would be interested in feedback from anyone here, more to come....

[Guest guest]

Debbi, thanks for the feedback. I

have nothing to hide. I just wanted to collect my own demographic

information on people that also have A (a password protected database).

What personal information are you afraid to give out, name is not a required

field. If you fill out the form you are redirected to this page: http://www.achalasia.net/w4m/

Re: New

Member

,

call me suspicious, but why do we have to give you our personal information on

your website just for you to share your information with us?

Everyone in this group shares their information freely and publicly; for you to

refuse to do the same makes me what you have to hide???

Debbi in Michigan

Hi all just joined the group, have been living with

achalasia since

Dec 02. I have just put up a website at http://www.achalasia.net and

its not even in the search engines yet, but would

be interested in

feedback from anyone here, more to come....

[Guest guest]

, I'm not afraid of anything, but I do get suspicious of people trying to use this group to "harvest" guinea pigs for their own personal research, which is what your request sounds like. And for your own protection, have you had a lawyer check over your disclaimer and medical research? I'm not sure that just having a disclaimer page would protect you financially in the event someone tried to sue you (if they were to use your "cure" method.)

Do you have any kind of documentation of your results? In the nine months you've been doing your "cure" have you had manometry done again? What about 1, 3, and 5-minute barium tests? Endoscopy? I'm curious b/c you state that your doctor doesn't believe in this "cure" -- what is he basing his conclusion on?Debbi

Debbi, thanks for the feedback. I have nothing to hide. I just wanted to collect my own demographic information on people that also have A (a password protected database). What personal information are you afraid to give out, name is not a required field. If you fill out the form you are redirected to this page: http://www.achalasia.net/w4m/

, call me suspicious, but why do we have to give you our personal information on your website just for you to share your information with us? Everyone in this group shares their information freely and publicly; for you to refuse to do the same makes me wonder what you have to hide???Debbi in Michigan

Hi all just joined the group, have been living with achalasia since Dec 02. I have just put up a website at http://www.achalasia.net and its not even in the search engines yet, but would be interested in feedback from anyone here, more to come....

[Guest guest]

wrote:

It was by accidental luck that in July 03

I pinched a nerve in my back and lost partial feeling in my feet that caused me

to start taking major amounts of B vitamins daily (I had had this in my early

20’s from a skiing thing once before and B1 fixed me right up in a few

months). Vitamin B1 is responsible for helping the body convert food into

energy and I quote from http://chemistry.gsu.edu/glactone/vitamins/b1/ : It is evident from the neurological

disorders caused by thiamine deficiency that this vitamin plays a vital role in

nerve function. (And since achalasia

is a nerve related disorder of the esophagus).

Interesting , I

just went to see a neurologist and he wanted to test me for Vitamin B1 deficiency.

I just had the test yesterday; we’ll see how it looks very soon.

Sandi

Re: New

Member

,

call me suspicious, but why do we have to give you our personal information on

your website just for you to share your information with us?

Everyone in this group shares their information freely and publicly; for you to

refuse to do the same makes me what you have to hide???

Debbi in Michigan

Hi all just joined the group, have been living with

achalasia since

Dec 02. I have just put up a website at http://www.achalasia.net and

its not even in the search engines yet, but would

be interested in

feedback from anyone here, more to come....

[Guest guest]

Yeah what a great episode of court TV, man gets sued over

telling people to take vitamins. I never said it was a cure, I said it

works for me, and 1 person can never be a control group for any kind of

research, so even if I could show you documented proof of my results, what good

would it be before it works for a group of people with A.

I’m not here to debate my “personal

research”, or what has worked for me, or get into a pissing match with

anyone. I’m with that if my information can help any one person

from having to suffer another minute, then my posts have a purpose.

Everyone in the group will not have to be harvested now as I have given

everyone the link. People who wish to include their data will, those who don’t

won’t.

Re: New

Member

,

I'm not afraid of anything, but I do get suspicious of people trying to use

this group to " harvest " guinea pigs for their own personal research,

which is what your request sounds like. And for your own protection, have

you had a lawyer check over your disclaimer and medical

research? I'm not sure that just having a disclaimer page would

protect you financially in the event someone tried to sue you (if they were to

use your " cure " method.)

Do

you have any kind of documentation of your results? In the nine months

you've been doing your " cure " have you had manometry done

again? What about 1, 3, and 5-minute barium tests?

Endoscopy? I'm curious b/c you state that your doctor doesn't

believe in this " cure " -- what is he basing his conclusion on?

Debbi

Debbi, thanks for the

feedback. I have nothing to hide. I just wanted to collect my own

demographic information on people that also have A (a password protected

database). What personal information are you afraid to give out, name is

not a required field. If you fill out the form you are redirected to this

page: http://www.achalasia.net/w4m/

,

call me suspicious, but why do we have to give you our personal information on

your website just for you to share your information with us?

Everyone in this group shares their information freely and publicly; for you to

refuse to do the same makes me wonder what you have to hide???

Debbi in Michigan

Hi all just joined the group, have been living with

achalasia since

Dec 02. I have just put up a website at http://www.achalasia.net and

its not even in the search engines yet, but would

be interested in

feedback from anyone here, more to come....

[Guest guest]

wrote: Yeah what a great episode of court TV, man gets sued over telling people to take vitamins.

Well, this is America, land where people sue Mcs for damages when they spill hot coffee in their lap in a moving vehicle or because they eat too much and get fat -- even if the plaintiff doesn't win the lawsuit, it still costs the defendants thousands of dollars to defend themselves against these senseless lawsuits. Next thing you know, kids will be suing their parents b/c they have fat feet, freckles, or brown eyes!!!

I never said it was a cure, I said it works for me,

Well, while you don't use the word "cure" per se, you do say "almost completely reversed my symptoms of achalasia." Merriam-Webster defines "cure" as "recovery or relief from a disease" which sounds a heck of a lot like reversing symptoms. If you want to get into a semantics battle, that's fine with me -- if you read my response again, you'll see that I always used the word cure in quotes -- "cure" -- which is commonly used to show when a word is being substituted/paraphrased for another word or phrase.

and 1 person can never be a control group for any kind of research, so even if I could show you documented proof of my results, what good would it be before it works for a group of people with A.

But you missed my point entirely -- I'm not saying that documented proof that it works in you would therefore imply that it would work in all achalasia patients at all! My question was posed because you stated that your own doctor doesn't agree with you that your intake of massive quantities of vitamins has reversed your symptoms, but you didn't give any background information -- does he think that your symptoms actually haven't improved, or does he think your symptoms have improved but that the improvement isn't attributable to your vitamin regimen, or what? That's why I asked what the doctor is using as the basis of his conclusion. If you have some documented proof that it did work, then that is justification in further researching the situation. But if there is nothing to back up the claims, then there's really no reason to go further with it, ya know? Lemme give an example (and this is only an example, not any kind of accusation that this is what happened with you, etc. -- it's just an example to get my point across in "story" form):

Joe Blow goes to the doctor and has tests done that show he has a tumor (doesn't matter where in his body.)

Joe Blow then goes to a witch doctor in some jungle tribe and gets some sort of "potion" treatment for his tumor.

Joe Blow believes that his tumor has been "cured" and he tells his doctor about it.

Scenario A: The doctor does more tests and finds that the tumor is still there and still growing -- the witch doctor's potion evidently did NOT cure the tumor, but Joe Blow still believes that his tumor has been cured.

Scenario B: Joe Blow doesn't have any more tests done, because he believes that the tumor is taken care of as a result of the witch doctor's potion treatment. The doctor believes that the tumor is still there and still growing.

Scenario C: The doctor does more tests and finds that the tumor is indeed gone. The doctor believes that it went away by itself, but Joe Blow still believes that his tumor was cured as a direct result of the witch doctor's potion.

So, in all three scenarios, Joe Blow honestly believes he's been cured as a direct result of the witch doctor's potion. And if Scenario C is the way the story ended, it's obviously worthwhile to research the "potion" to see if it does help others, or if Joe's tumor went away on its own like the doctor believes. But in Scenarios A and B, without anything to show that the potion really did work, there's no justification to even bother to go out and research the "potion" because there's absolutely nothing to suggest that it actually did any good, beyond the placebo effect of Joe thinking that it helped him.

So, back to the situation at hand -- if you have had a manometry and barium swallow test since you started your massive vitamin intake, and if those tests show that there has been some change in your esophageal functioning since you started your vitamin regimen, then there is something to show that there is a potential correlation between your vitamin regimen and your achalasia symptoms. Whenever a "result" is noted in a scientific research article, it specifically differentiates between anecdotal accountings and verifiable test results. Since you are asking people to try your regimen and report their own results to you, I feel that your test subjects have a right to know whether or not you yourself have had any testing done to show if there's an actual change in your esophageal functioning (verified test results), or if you just perceive your symptoms to be better (anecdotal accountings.)

This is not just directed at you, either -- it applies to ANY research of this nature. I was a test subject in a university's clinical trial on achalasia treatments several years ago, and I had to do several interviews and tests over a year's time; they recorded my own anecdotal experiences, plus what the manometry/barium tests reported, at each interval. During my interviews, they would specifically ask (if I reported an improvement in my swallowing) if I thought the improvement could be attributed to me changing the types of foods I was eating [oatmeal goes down better than cheeseburgers!], or if I was maybe chewing my food more thoroughly and that's why my swallowing improved, or if I was eating in a different environment than before [most of us find that stressful situations or trying to rush through a meal will cause us problems], or if anything had changed in my personal or work life that affected my stress levels, etc. There are so many variables that it's hard to say exactly WHAT helped / didn't help, so researchers attempt to cover all the possible bases and watch for patterns, etc., that may be skewing their results.

Debbi

[Guest guest]

Hi Diva!! Welcome, welcome welcome!!! You will love Life Lift, it so

great!! Connie :-)

NEW MEMBER

HI!

I'AM NEW TO LL AND THE BRD. HAVE NOT RECEIVED MY TAPES YET!

BUT! LOOKING FORWARD TO A BETTER WAY OF BEING--I HAVE A LOT OF

WEIGHT TO LOSE I'AM AROUND 300 LBS. DON'T LIKE TO USING THE SCALE--

TO ADDICTED TO IT!!!!--LOOKING FOR SOME SUPPORT FROM YOU ALL.

THANKS

DIVA

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

[Guest guest]

-THANKS FOR WELCOMING ME INTO THE GROUP. I RECEIVE MY TAPES TODAY

AND IS VERY INPRESS BY THEM-- IT SEENS SO STILL AND SOFT AND

RELAXING --I HAVE A QUESTION --WHAT DO THEY MEAN BY 40 LL OR 60 LL

TODAY?--I ASSUME IT MEANS 40 MORE BREATHS AFTER EXCERSIZE???

DIVA

>

> > What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

>

>

[Guest guest]

Hello Diva,

It may be easier for you to just time yourself in the beginning. Just do 15 or

20 minutes of LifeLift daily, with or without the positions. You can do as many

as you like in a day. You can't do too many, but do at least 15 minutes.

It is also good to add 5 or 10 minutes here and there, maybe when you are

sitting at the computer or driving in your car for extra good measure.

Some people just say they do 40 LifeLift breaths or you may even see some say

they do many more. That usually means a total of that many breaths for the day.

Some may be with exercise positions and some may be just sitting or standing

with no positions.

You just have to do what is comfortable for you.

One of the nice things about LifeLift is there are no rules. You can create the

kind of daily routine that fits your lifestyle.

Take good care,

Rashelle.

Re: NEW MEMBER

-THANKS FOR WELCOMING ME INTO THE GROUP. I RECEIVE MY TAPES TODAY

AND IS VERY INPRESS BY THEM-- IT SEENS SO STILL AND SOFT AND

RELAXING --I HAVE A QUESTION --WHAT DO THEY MEAN BY 40 LL OR 60 LL

TODAY?--I ASSUME IT MEANS 40 MORE BREATHS AFTER EXCERSIZE???

DIVA

>

> > What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

>

>

[Guest guest]

At 10:24 AM 04/05/2004 -0700, you wrote:

>Hi! My name is Carra my son is 16 weeks old. So far he has had all of the

reccomended vaccinations. I began looking into the dangers of vaccines

because of the discussions on another list. I have not made any decisions

about my son reciving further vaccinations. He has another doctors visit in

2 weeks at which time they are planning to give him more vaccines. At the

very least I am considering asking them to postpone them until I can make a

more informed decision. I want to do what's right for my son however I

still feel very ignorant on this topic. I also feel a little overwhelmed by

the amount of information on this topic. So I am begining to sort through it.

>

>thanks for sharing your information and knowledge,

>Carra (momma to 12/03)

>

>

Welcome Carra,

If you show up for that appintment you better be EXTREMELY strong.

They will push and push you beyond belief.

The best is to not go to the appointment - cancel - until you have

researched and are stronger

Or some stop going at all.

You are the parent and remember you don't ask them to postpone - you tell

them to postpone!

You are the mom!

Ask lots of questions adn don't go for the visit until you are better

equiped to say no - you don't have to explain, you just say no or that you

are still researching. PERIOD)

you don't realize how strong you will have to be

you can't take them out once they are in.

welcome

Sheri

--------------------------------------------------------

Sheri Nakken, R.N., MA, Classical Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

$$ Donations to help in the work - accepted by Paypal account

vaccineinfo@... voicemail US 530-740-0561

(go to http://www.paypal.com) or by mail

Vaccines - http://www.nccn.net/~wwithin/vaccine.htm

Vaccine Dangers On-Line course - http://www.nccn.net/~wwithin/vaccineclass.htm

Homeopathy On-Line course - http://www.nccn.net/~wwithin/homeo.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL

OR LEGAL ADVICE. THE DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

******

" Just look at us. Everything is backwards; everything is upside down.

Doctors destroy health, lawyers destroy justice, universities destroy

knowledge, governments destroy freedom, the major media destroy information

and religions destroy spirituality " .... Ellner

[Guest guest]

Sheri said: <<If you show up for that appintment you better be

EXTREMELY strong. They will push and push you beyond belief.>>

Hi Carra,

I was going to mention this too. You will not believe the

horror stories you will be told while they are trying to scare you into

vaccinating. With my 3 yo, she didn't have all of her regular visits, I

was going to have the regular check ups without vaccines, but the dr we

had at the time was nasty about it, so we quit going unless there was a

problem. Now I find my vet doing the same thing with the baby critters

we get. *rolls eyes* They are ridiculous and sound like the exact same

stories that I heard from the ped, just with the names of the vaccines

changed. LOL

Ohio

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://users.adelphia.net/~tacousino/

[Guest guest]

Yes...We actually were told by our first pediatrician (who I really did

like) that she would not practice on a child who was not immunized, she felt

that it bordered on child neglect!!

Hope you can gather all the necessary info you need to make the best choice

for your family!

Blessings,

Nicki

RE: New member

Sheri said: <<If you show up for that appintment you better be

EXTREMELY strong. They will push and push you beyond belief.>>

Hi Carra,

I was going to mention this too. You will not believe the

horror stories you will be told while they are trying to scare you into

vaccinating. With my 3 yo, she didn't have all of her regular visits, I

was going to have the regular check ups without vaccines, but the dr we

had at the time was nasty about it, so we quit going unless there was a

problem. Now I find my vet doing the same thing with the baby critters

we get. *rolls eyes* They are ridiculous and sound like the exact same

stories that I heard from the ped, just with the names of the vaccines

changed. LOL

Ohio

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://users.adelphia.net/~tacousino/

<http://users.adelphia.net/~tacousino/>

[Guest guest]

<<Yes...We actually were told by our first pediatrician (who I really

did like) that she would not practice on a child who was not immunized,

she felt that it bordered on child neglect!!>>

I know drs like that - I think that borders on patient abuse!!!

Ohio

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://users.adelphia.net/~tacousino/

[Guest guest]

hi carra, and welcome to the list!

my advice would be, if you're not sure about vaccines,

don't allow them. it's never too late to allow a

vaccination, but once it's done, it can't be reversed.

there are dangers to any vaccine available, be it

infant, youth, adult, travel, etc. vaccines. if you're

scared of diseases, learn as much as you can about

them, and then decide whether or not you want to

vaccinate your precious little ones against them.

don't buy into the fear mongering that the typical ped

gives you. 'well baby visits' were only invented

because that was the easiest way to vaccinate.

:-)

claudia

--- Craig Milikien <cmilikien@...> wrote: >

Hi! My name is Carra my son is 16 weeks old. So far

> he has had all of the reccomended vaccinations. I

> began looking into the dangers of vaccines because

> of the discussions on another list. I have not made

> any decisions about my son reciving further

> vaccinations. He has another doctors visit in 2

> weeks at which time they are planning to give him

> more vaccines. At the very least I am considering

> asking them to postpone them until I can make a more

> informed decision. I want to do what's right for my

> son however I still feel very ignorant on this

> topic. I also feel a little overwhelmed by the

> amount of information on this topic. So I am

> begining to sort through it.

>

> thanks for sharing your information and knowledge,

> Carra (momma to 12/03)

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

=====

Soapnuts now available! check out http://www.himalayasalt.co.uk

http://www.stores.ebay.co.uk/thealternativeway

http://www.freeyurko.bizland.com/

http://www.he-ed.org.uk

" The mind is like a parachute. In order to function, it first has to open. "

-- Dewar

___________________________________________________________

WIN FREE WORLDWIDE FLIGHTS - nominate a cafe in the Internet Cafe

Awards www..co.uk/internetcafes

[Guest guest]

Don't be surprised if they start telling you you're gambling with your child's

life, you child could die...and a few other things to basically tell you that

you know nothing and they know it all. This is called manipulation and

antimidation. You let them rattle. If you lack confidence in making any verbal

rebuttle...just stick to " NO THANK-YOU " . If you feel a little gutsy...remind

them it's your right to decide and they have no legal right to force you into

anything. Oh, and remind them, that according to CDC, vaccines are not a

mandate.

-------Kimberley Medlin---------

VACCINES: Keeping our children from harm

.....or playing Russian Roulette?

http://www.vaccinationsandSIDS.com/

ChristianityandVaccinations_AZvac-lib/

[Guest guest]

HOW TRUE!!

RE: New member

<<Yes...We actually were told by our first pediatrician (who I really

did like) that she would not practice on a child who was not immunized,

she felt that it bordered on child neglect!!>>

I know drs like that - I think that borders on patient abuse!!!

Ohio

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://users.adelphia.net/~tacousino/

<http://users.adelphia.net/~tacousino/>

[Guest guest]

Hi Carra, welcome. I have no doubt that you will be glad you joined this group.

I know that educating myself on this subject was the best choice I ever made

regarding my daughters health and wellbeing. I have been able to confidently

opt not to vaccinate and support my reasons with much indisputable evidence. I

also have no fear of disease when I know how many options there are other than

vaccines. Only you can make the choices, but educating ourselves is the only

way to start. We all know that the doctors aren't going to fill us in. You

can't help but question why they don't at least make sure we understand the

dangers. I was never, ever told that there were deadly toxins in vaccines. I

think that is a pretty important fact to disclose, don't you? Not to mention

the way they bombard us with advertising insinuating it is cruel not to

vaccinate. Really twists the truth.

Craig Milikien <cmilikien@...> wrote:

Hi! My name is Carra my son is 16 weeks old. So far he has had all of the

reccomended vaccinations. I began looking into the dangers of vaccines because

of the discussions on another list. I have not made any decisions about my son

reciving further vaccinations. He has another doctors visit in 2 weeks at which

time they are planning to give him more vaccines. At the very least I am

considering asking them to postpone them until I can make a more informed

decision. I want to do what's right for my son however I still feel very

ignorant on this topic. I also feel a little overwhelmed by the amount of

information on this topic. So I am begining to sort through it.

thanks for sharing your information and knowledge,

Carra (momma to 12/03)

[Guest guest]

Jan, welcome to the group. If have definitely

found people now who do know and understand

Achalasia and what you are living with.

I have not had the myotomy so I can't address

that from a personal perspective. We do have

a number of members who have had this

surgery and I am sure you will be hearing from

them.

This is a great group and you will have a lot

of support.

Maggie

Alabama

[Guest guest]

Jan - I know that from NYC just had the surgery about a month ago & she will probably respond to you soon. Several people have just undergone the procedure in the last 6 weeks, including some this week. I'm having mine in 1 1/2 weeks.

I know my doctor told me that in the 7% of patients who have no improvement, they often are not true achalasians. Did they do the manometry test on you? Did they do any other tests first also?

He also said that after 3 years (obviously not you) that up to 50% experience "backsliding" to about 50% of function.

It is also a difficult surgery...I hope he was well experienced in it. Hopefully can give you info on someone else to see...I know there are good A docs in NYC....I contemplated going there myself.

Hang in there....we are here for you to vent & ask questions. Check out the links on the site & keep educating yourself & look for more responses from those who have been there. Cindi in PA

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Jan, my neighbor!! I live in NYC also!! I'm 30 and a month & 1/2

post-op. Where and by whom did you get your myotomy done? I'm very

happy with my results. I'm eating well and not experiencing any

swallowing problems except for when I forget to chew well or if I

take too big of a bite. But a little bit of water washes it

through. My results were instantaneous. I have no regurge or

nighttime choking anymore. And my surgical experience in general

wasn't a miserable one (not that it was fun). I don't know why

you're still having difficulty. It could be because the surgeon

didn't cut the LES enough. Have you told him/her? Did you also get a

wrap? How many myotomies has the surgeon done before? Sorry for all

the questions, I just want to make sure I have all the facts.

Well you've come to the right place if you're feeling alone, because

you are NOT alone here. We all understand what you're going through.

This is a sucky disease and living with it can be a nightmare. No

one in my family has heard of A either. And when I explain what it

is, it almost sounds like it's not as serious as it actually is!

grr... Never apologize about venting. This board is here for just

that reason. No one thinks you're " whining " about your problems

because we've all been through it and know how you feel.

Sorry to hear that your surgery wasn't as successful as you hoped.

You should really talk to the surgeon who did it to find out why.

Welcome to the group.

in NYC

> Hi.

> My name is Jan and this is my first visit to the site. I'm 23 and

> live in NYC and I'm 3 1/2 weeks post-op from a Heller Myotomy. I'm

> feeling pretty depressed today, because my eating is not getting

much

> better. I would say I'm improved, because food actually goes down

> after a little while and I've been able to stablize my weight which

> had been plummetting for the past year, but eating is still painful

> and some food still comes up almost every time I eat. I guess I

was

> wondering if it gets any better over time or is this it?

> Surgery was awful and I really don't want to go through it

again...I

> had lots of air trapped in my abdomen which caused excruciating

> shoulder pain, and I've still got a numb spot above my belly-

button.

> I am also having what feels like sharp muscle pain below one of my

> incisions...which I'm guessing is just a cut muscle trying to

heal.

> I just had such high hopes for the surgery and was under the

> impression that I would feel completely normal again, but I don't

at

> all. I'm still reminded every time I put something in my mouth

that

> I have this awful disease. Sorry to vent, but I feel so alone

> because none of my friends or family had ever even heard of

achalasia

> before I was diagnosed and I hate having to explain it over and

over

> to everyone who asks what's wrong with me when I cringe when I'm

> eating.

> Jan

[Guest guest]

Seems there's many named Jan in this room with A....hmmm...

Jan in Western KY

> Hi.

> My name is Jan and this is my first visit to the site. I'm 23 and

> live in NYC and I'm 3 1/2 weeks post-op from a Heller Myotomy. I'm

> feeling pretty depressed today, because my eating is not getting

much

> better. I would say I'm improved, because food actually goes down

> after a little while and I've been able to stablize my weight which

> had been plummetting for the past year, but eating is still painful

> and some food still comes up almost every time I eat. I guess I

was

> wondering if it gets any better over time or is this it?

> Surgery was awful and I really don't want to go through it

again...I

> had lots of air trapped in my abdomen which caused excruciating

> shoulder pain, and I've still got a numb spot above my belly-

button.

> I am also having what feels like sharp muscle pain below one of my

> incisions...which I'm guessing is just a cut muscle trying to

heal.

> I just had such high hopes for the surgery and was under the

> impression that I would feel completely normal again, but I don't

at

> all. I'm still reminded every time I put something in my mouth

that

> I have this awful disease. Sorry to vent, but I feel so alone

> because none of my friends or family had ever even heard of

achalasia

> before I was diagnosed and I hate having to explain it over and

over

> to everyone who asks what's wrong with me when I cringe when I'm

> eating.

> Jan

[Guest guest]

Jan,

After having surgery, you still don’t

have any peristalsis, so it is necessary to continue to push the food along

with water. If I don’t do this, the food will just sit in my E and fill up;

making it very uncomfortable to try to push it through. It’s good to just

eat a few bites of food and then push it along with the water. Gravity is good,

but gravity with the aid of water is key for getting

the food down. Unfortunately, surgery is only meant to improve our quality of

life, but never meant to be a cure for achalasia.

A warm welcome to the group, you will find

this site to be an excellent means of support and information. is also

from NY and also just had surgery. I’m sure she’ll be along any

time to welcome you also!

I hope this has been of some help to you,

and I hope that your eating will improve.

It’s good to have you on board, and

please continue to keep us posted!

Sandi

in No CA

New Member

Hi.

My name is Jan and this is my first visit to the

site. I'm 23 and

live in NYC and I'm 3 1/2 weeks post-op from a

Heller Myotomy. I'm

feeling pretty depressed today, because my eating

is not getting much

better. I would say I'm improved, because

food actually goes down

after a little while and I've been able to

stablize my weight which

had been plummetting for the past year, but eating

is still painful

and some food still comes up almost every time I

eat. I guess I was

wondering if it gets any better over time or is

this it?

Surgery was awful and I really don't want to go

through it again...I

had lots of air trapped in my abdomen which caused

excruciating

shoulder pain, and I've still got a numb spot

above my belly-button.

I am also having what feels like sharp muscle pain

below one of my

incisions...which I'm guessing is just a cut

muscle trying to heal.

I just had such high hopes for the surgery and was

under the

impression that I would feel completely normal

again, but I don't at

all. I'm still reminded every time I put

something in my mouth that

I have this awful disease. Sorry to vent,

but I feel so alone

because none of my friends or family had ever even

heard of achalasia

before I was diagnosed and I hate having to

explain it over and over

to everyone who asks what's wrong with me when I

cringe when I'm

eating.

Jan

[Guest guest]

Jan, I'm sorry that you had a tough time w/ the surgery -- unfortunately,

it sounds like your doctor didn't do a very good job of explaining it all

to you. Everyone's experience with surgery is different, but to expect

everything to be " normal " leads me to believe that your surgeon didn't

explain what the surgery does and doesn't do.

There is, unfortunately, no " cure " for achalasia at this time. We will

always (until a cure is found) have achalasia; all we can do is try to

lessen the symptoms. Most people with achalasia have little to no

peristaltic function in the body of the esophagus. The surgery won't

change that -- all the surgery will do is loosen the LES. So you'll still

need to have some way to get the food down to the LES. For some people,

that means staying on a liquid (or mushy enough to practically be liquid)

diet. But most people seem to be able to eat a relatively normal diet,

provided they have enough water (or other liquid) to wash it all down. A

few people end up needing to have a dilation after the myotomy; it's

helpful for some, not for some others.

Did you have an experienced surgeon (meaning experienced specifically w/

the Heller, not w/ surgery in general)??? The surgeon (or your GI doc)

should be able to answer these questions for you. If either the surgeon

or GI doc aren't particularly well-versed in achalasia, I suggest going to

a different doctor as soon as possible. There are others in the NYC area

who have found experienced specialists, and I'm sure they can give you

some recommendations.

I hope you find yourself swallowing better real soon!

Debbi in Michigan

> Hi.

> My name is Jan and this is my first visit to the site. I'm 23 and

> live in NYC and I'm 3 1/2 weeks post-op from a Heller Myotomy. I'm

> feeling pretty depressed today, because my eating is not getting much

> better. I would say I'm improved, because food actually goes down

> after a little while and I've been able to stablize my weight which

> had been plummetting for the past year, but eating is still painful

> and some food still comes up almost every time I eat. I guess I was

> wondering if it gets any better over time or is this it?

> Surgery was awful and I really don't want to go through it again...I

> had lots of air trapped in my abdomen which caused excruciating

> shoulder pain, and I've still got a numb spot above my belly-button.

> I am also having what feels like sharp muscle pain below one of my

> incisions...which I'm guessing is just a cut muscle trying to heal.

> I just had such high hopes for the surgery and was under the

> impression that I would feel completely normal again, but I don't at

> all. I'm still reminded every time I put something in my mouth that

> I have this awful disease. Sorry to vent, but I feel so alone

> because none of my friends or family had ever even heard of achalasia

> before I was diagnosed and I hate having to explain it over and over

> to everyone who asks what's wrong with me when I cringe when I'm

> eating.

> Jan

[Guest guest]

Hi ,

Thanks for writing! I had my surgery at Cornell by Dr. Nasser

Altorki. My gastro doc, Dr. Lambroza referred me to him and he said

that he has done thousands of myotomies. My only worry is that he

was constantly surrounded by a cloud of students and interns and

residents and it is very possible that any one of them actually

performed the surgery. My father is a surgeon (in Mississippi) and

he had some concerns after my surgery when I had a massive amount of

air left in my abdomen, because he does myotomies as well and had

never seen that before. It just seems that some things don't add up

quite right with my whole experience. Supposedly, Dr. Altorki is one

of the best cardio-thoracic surgeons in the country...so what

happened with me? Oh, and yes, I did get a wrap. Anyhow, thanks

again for responding It makes me happy to know that there are

other people out there dealing with this problem too.

Congratulations on your surgery results! I only hope that one day

I'll feel that way too

> > Hi.

> > My name is Jan and this is my first visit to the site. I'm 23

and

> > live in NYC and I'm 3 1/2 weeks post-op from a Heller Myotomy.

I'm

> > feeling pretty depressed today, because my eating is not getting

> much

> > better. I would say I'm improved, because food actually goes

down

> > after a little while and I've been able to stablize my weight

which

> > had been plummetting for the past year, but eating is still

painful

> > and some food still comes up almost every time I eat. I guess I

> was

> > wondering if it gets any better over time or is this it?

> > Surgery was awful and I really don't want to go through it

> again...I

> > had lots of air trapped in my abdomen which caused excruciating

> > shoulder pain, and I've still got a numb spot above my belly-

> button.

> > I am also having what feels like sharp muscle pain below one of

my

> > incisions...which I'm guessing is just a cut muscle trying to

> heal.

> > I just had such high hopes for the surgery and was under the

> > impression that I would feel completely normal again, but I don't

> at

> > all. I'm still reminded every time I put something in my mouth

> that

> > I have this awful disease. Sorry to vent, but I feel so alone

> > because none of my friends or family had ever even heard of

> achalasia

> > before I was diagnosed and I hate having to explain it over and

> over

> > to everyone who asks what's wrong with me when I cringe when I'm

> > eating.

> > Jan