Re: Jan and hope, and new people... please read

[Guest guest]

Hi Carolyn- I thank you for taking the time to respond to yet another

freaked out achalasia " newbie " ...especially one who is resistant to

the traditional approaches that western medicine prescribes(in lieu

of having the funds to find more answers.) It seems to me that there

is a paradox in that we're told this is rare yet you say you've

gotten 1000 new members in the past 2 years. Is this condition on

the rise? Is our environment and way of life causing it? You

mentioned a possible virus....has anyone looked at H-pylori? You

mentioned the vagus nerve being the culprit....I have a colleague at

work who had his vagus nerve cut when he was a young man due to too

much stomach acid being produced....in his case the vagus nerve kept

growing back...he had to have it redone a few times. If the vagus

nerve is the suspect what is wreaking havoc on it? None of us are

doctors or researchers on here...we turn to each other instead..and

we have no background or facilities in which to deal with it. Maybe

we should be going to the larger universities to find someone who

wants to have a reason to get a research grant? It seems our numbers

are growing and that ought to a good reason. The University of

Washington, for example, has numerous people hired who go get

research grants to study many conditions....and that's just one

university in Seattle. Who else is out there?

In the meantime I am working on my alkaline diet..my doctor at

Swedish Medical Institute in Seattle, Schuffler, did the

endoscopic exam on me and forgot to mention that opening up the

sphincter would result in the most intense and painful heartburn I've

ever experienced. From that point on I dove into the Alkaline diet

books and have felt a lot better. I have thought right from the start

that the modern diet is the culprit. We are inundated by so many

refined processed foods that according to the books I'm reading are

highly acid forming. That in itself could be destroying the vagus

nerve bundle. For me, getting control of the reflux pain meant

changing to an alkaline diet. I used to eat that way when I was in

college in my 20's so it is not new to me. I'm like a lot of people

and I simply got lazy as I got older and was raising children,

working 3 jobs at a time, going to school, trying to support a

painting studio, and trying to have a social life. Taking the easy

way at the grocery store was a short cut. Now I may be paying for it.

I would like to believe that my body can heal if I treat it better.

From what I'm reading on this site, no one believes that. They

believe they're esophagus is permanently lost if they don't do the

surgery. They may be right. I want to give myself a chance. If by

spending the time to do that I'm causing myself even more damage,

then I will have to live with that decision. I could change my mind

tomorrow. For the time being I feel pretty good. No more reflux.

Eating smaller meals. Fasting is not a dirty word in my vocabulary.

Jan

>

> Hello Jan,

> I think I responded to you first by just answering a couple of

things by line.

> it was in response to burping and undoing myotomy's and etc.

> I am sorry I started a barrage.

> Just to hopefully help the position you feel like you have been

cast into... There is so much information so many seekers and so

many....100's on any given day in this group looking for a solution,

an answer, a breakthrough, all hoping to avoid the only solution

known..surgery.

> I constantly read the medical journals looking for a

breakthrough.. I believe the breakthrough will come from the people

on this board, eventually.

> If you had been here for a whle ... you, too, would be amazed at

some of the ideas this group has as to the cause of Achalasia.

> One of the most viable possibilities is .. some sort of damage to

the Vagus Nerve, whether by virus, by damage or accident.

> What causes the Achalasia... The Vagus Nerve bundle, the longest

in the body leaves the spine at C3 or C4 (neck) and travels down the

esophagus splintering off like fingers to control the function of

swallowing all the way down. It continues down to the stomach area

and intestines impacting how the stomach and the intestines work.

> When you have a myotomy, the process is a very very delicate

one. The lower esophageal sphincter muscle has the vagus nerve

wrapped around it. The surgeon must untangle the nerve bundle first

before cutting the muscle fiber. The NERVES are what has caused the

sphincter to close and not open properly.

>

> According to my son's surgeon, there is no

cure/causation/research going on in the field of achalasia, at this

time. There is NOT enough people affected to warrant philanthropic

research funds to be given to do the research.. It won't benefit the

greater good... for the investment.

>

> Please just take a moment and understand that everyone who

arrives here is desperate for a reason, a cause and a cure.

>

> Those of us who have been here for 2 years or more have witnessed

over a 1000 new people come to this new group Each and everytime a

new person comes to this group, help is waiting to be encouraging to

offer experience and solutions.

> It is sometimes difficult to remain FRESH each time, for each

person..

> So to all whom are new please forgive us for seeming calloused

and uncaring.

> WE are NOT. We just skipped a few things in the diplomacy part,

because remember over a 1000 new people in less than 2 years... all

asking and seeking encouragement and information

> Tryng to remember to be gracious..

> Carolyn

> mom of Cameron

> myo'd ~n~ fundo'd

> 2005.. in N. Calif

>

>

>

>

> Andy- I guess I must be reacting to how defensive of

surgery just

> about everyone on this site seems to be. I am not " against "

anything

> or anyone. I am looking for hope.

> > I can

> > > eat whatever I want, whenever I want. I don't have to do the old

> > > " heave-ho " with my esophagus every night before bedtime like

they

> > recommend.

>

> > > There is a very caring alternative group' and yes because we do

> not

> > > believe this is incurable; we are all treated like we have

> > something

> > > the rest can catch. The majority of the people on the site live

> > their

> > > disease. They have lots of valuable information, but please do

> not

> > > let it discourage you too much. > >

> > > Do not give up, i think we are very close to a cure or some

ways

> to

> > > hang in there till we can be " cured " . My understanding is,

that if you have the myotomy

> > and

> > > or one of the " wraps " , you will never be able to undo the

> surgery,

> > > you will not be able to burp, will take an anti-reflux

> prescription

> > > medication for the rest of your life and may still get cancer

of

> > the

> > > esophagus or have the whole thing removed.

> > > 7 pm and emptying your esophagus before you go to bed also

helps.

> > >

>

>

>

> Recent Activity

>

> 4

> New Members

>

> 1

> New Links

>

> Visit Your Group

> Meditation and

> Lovingkindness

> A Group

> to share and learn.

>

> Health

> Early Detection

> Know the symptoms

> of breast cancer.

>

> Y! Groups blog

> The place to go

> to stay informed

> on Groups news!

>

>

>

> .

>

>

>

>

>

> 4-H Leader extraordinaire!

> All-Star Advisor to the most awesome

> kids of Amador County!

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

[Guest guest]

Jan

Not sure whether it's on the rise or not or whether it's just that awareness

is increasing. 1000 new members may sound a lot but that's WORLDWIDE. In the

UK there are 60,000,000 people of which only 600 have Achalasia so I would

say it's still pretty rare.

The comment made that " opening up the sphincter would result in the most

intense and painful heartburn I've ever experienced " seems way over the top

from what I have read and heard by people who have had a dilation but

perhaps they would like to confirm this either way. What did he mean by

'opening the sphincter' - if you aren't sure then posting such a comment is

a little misleading. I have had the muscles around my sphincter cut and

hence relaxed and opened so surely that comment could apply to me but I have

never experienced any heartburn whatsoever.

Another point you made " I would like to believe that my body can heal if I

treat it better " seems also to be a little misguided in this case. For

example when I was much younger I broke a collar bone and let it heal

without intervention - it didn't heal correctly and there's now a permanent

lump where the two bones have not lined up correctly. How would treating it

better have made any difference except that treating it better means medical

intervention in most cases when dealing with our body. You can certainly

help your body if you treat it better to start with but trying to heal it

afterwards is not as easy. My surgeon is also very experienced with people

with severe obesity problems -

http://www.surgery4obesity.co.uk/introducing.asp - and helps them with

surgical procedures on their stomachs. This cannot be healed by treating it

better - you need to do that first. With Achalasia whose cause is as yet

unknown we can't treat our body better to start with as we don't know what

causes it so we are stuck with treating it afterwards.

The message about the vages nerve was incorrect and has been corrected I

believe so it's of no relevance to Achalasia.

I read that you are prepared to live with your decision that you may be

damaging yourself by waiting and avoiding surgery but many of us aren't in

that position and have to take relatively urgent medical steps and the

little time we have we spend finding experienced surgeons. If whilst doing

this we would have found any other options we would have taken them so my

belief is that surgery IS the only option to treat Achalasia at this time

and its now that I need the treatment and could not have waited for someone

at a university to get a grant and look into it. I would also respectfully

suggest that at your age you too are too late to wait for a University to

come up with some miracle cure.

Not sure if I have missed anything in the past but have you had the three

basic tests to correctly diagnose Achalasia as your surgeons comments leave

me doubting his experience in this field. You say that we on this group are

not doctors or researchers and have no background in this area and I take

exception to this as will many members - we have a lot more background and

have probably done more research than many doctors in this area and that's

part of the problem as it so rare its often misdiagnosed and when it is you

can be operated on by an inexperience surgeon who makes a mess of it hence

the problems that's making you scared of the surgery I would imagine. I

respect your beliefs for avoiding surgery but as its been pointed out many

times it really is the only option that can give any hope of a long term fix

at this time. Perhaps in 10 years they may find another less invasion option

but can we wait that long - I know for a fact I couldn't.

Andy

Re: Jan and hope, and new people... please read

Hi Carolyn- I thank you for taking the time to respond to yet another

freaked out achalasia " newbie " ...especially one who is resistant to

the traditional approaches that western medicine prescribes(in lieu

of having the funds to find more answers.) It seems to me that there

is a paradox in that we're told this is rare yet you say you've

gotten 1000 new members in the past 2 years. Is this condition on

the rise? Is our environment and way of life causing it? You

mentioned a possible virus....has anyone looked at H-pylori? You

mentioned the vagus nerve being the culprit....I have a colleague at

work who had his vagus nerve cut when he was a young man due to too

much stomach acid being produced....in his case the vagus nerve kept

growing back...he had to have it redone a few times. If the vagus

nerve is the suspect what is wreaking havoc on it? None of us are

doctors or researchers on here...we turn to each other instead..and

we have no background or facilities in which to deal with it. Maybe

we should be going to the larger universities to find someone who

wants to have a reason to get a research grant? It seems our numbers

are growing and that ought to a good reason. The University of

Washington, for example, has numerous people hired who go get

research grants to study many conditions....and that's just one

university in Seattle. Who else is out there?

In the meantime I am working on my alkaline diet..my doctor at

Swedish Medical Institute in Seattle, Schuffler, did the

endoscopic exam on me and forgot to mention that opening up the

sphincter would result in the most intense and painful heartburn I've

ever experienced. From that point on I dove into the Alkaline diet

books and have felt a lot better. I have thought right from the start

that the modern diet is the culprit. We are inundated by so many

refined processed foods that according to the books I'm reading are

highly acid forming. That in itself could be destroying the vagus

nerve bundle. For me, getting control of the reflux pain meant

changing to an alkaline diet. I used to eat that way when I was in

college in my 20's so it is not new to me. I'm like a lot of people

and I simply got lazy as I got older and was raising children,

working 3 jobs at a time, going to school, trying to support a

painting studio, and trying to have a social life. Taking the easy

way at the grocery store was a short cut. Now I may be paying for it.

I would like to believe that my body can heal if I treat it better.

From what I'm reading on this site, no one believes that. They

believe they're esophagus is permanently lost if they don't do the

surgery. They may be right. I want to give myself a chance. If by

spending the time to do that I'm causing myself even more damage,

then I will have to live with that decision. I could change my mind

tomorrow. For the time being I feel pretty good. No more reflux.

Eating smaller meals. Fasting is not a dirty word in my vocabulary.

Jan

>

> Hello Jan,

> I think I responded to you first by just answering a couple of

things by line.

> it was in response to burping and undoing myotomy's and etc.

> I am sorry I started a barrage.

> Just to hopefully help the position you feel like you have been

cast into... There is so much information so many seekers and so

many....100's on any given day in this group looking for a solution,

an answer, a breakthrough, all hoping to avoid the only solution

known..surgery.

> I constantly read the medical journals looking for a

breakthrough.. I believe the breakthrough will come from the people

on this board, eventually.

> If you had been here for a whle ... you, too, would be amazed at

some of the ideas this group has as to the cause of Achalasia.

> One of the most viable possibilities is .. some sort of damage to

the Vagus Nerve, whether by virus, by damage or accident.

> What causes the Achalasia... The Vagus Nerve bundle, the longest

in the body leaves the spine at C3 or C4 (neck) and travels down the

esophagus splintering off like fingers to control the function of

swallowing all the way down. It continues down to the stomach area

and intestines impacting how the stomach and the intestines work.

> When you have a myotomy, the process is a very very delicate

one. The lower esophageal sphincter muscle has the vagus nerve

wrapped around it. The surgeon must untangle the nerve bundle first

before cutting the muscle fiber. The NERVES are what has caused the

sphincter to close and not open properly.

>

> According to my son's surgeon, there is no

cure/causation/research going on in the field of achalasia, at this

time. There is NOT enough people affected to warrant philanthropic

research funds to be given to do the research.. It won't benefit the

greater good... for the investment.

>

> Please just take a moment and understand that everyone who

arrives here is desperate for a reason, a cause and a cure.

>

> Those of us who have been here for 2 years or more have witnessed

over a 1000 new people come to this new group Each and everytime a

new person comes to this group, help is waiting to be encouraging to

offer experience and solutions.

> It is sometimes difficult to remain FRESH each time, for each

person..

> So to all whom are new please forgive us for seeming calloused

and uncaring.

> WE are NOT. We just skipped a few things in the diplomacy part,

because remember over a 1000 new people in less than 2 years... all

asking and seeking encouragement and information

> Tryng to remember to be gracious..

> Carolyn

> mom of Cameron

> myo'd ~n~ fundo'd

> 2005.. in N. Calif

>

>

>

>

> Andy- I guess I must be reacting to how defensive of

surgery just

> about everyone on this site seems to be. I am not " against "

anything

> or anyone. I am looking for hope.

> > I can

> > > eat whatever I want, whenever I want. I don't have to do the old

> > > " heave-ho " with my esophagus every night before bedtime like

they

> > recommend.

>

> > > There is a very caring alternative group' and yes because we do

> not

> > > believe this is incurable; we are all treated like we have

> > something

> > > the rest can catch. The majority of the people on the site live

> > their

> > > disease. They have lots of valuable information, but please do

> not

> > > let it discourage you too much. > >

> > > Do not give up, i think we are very close to a cure or some

ways

> to

> > > hang in there till we can be " cured " . My understanding is,

that if you have the myotomy

> > and

> > > or one of the " wraps " , you will never be able to undo the

> surgery,

> > > you will not be able to burp, will take an anti-reflux

> prescription

> > > medication for the rest of your life and may still get cancer

of

> > the

> > > esophagus or have the whole thing removed.

> > > 7 pm and emptying your esophagus before you go to bed also

helps.

> > >

>

>

>

> Recent Activity

>

> 4

> New Members

>

> 1

> New Links

>

> Visit Your Group

> Meditation and

> Lovingkindness

> A Group

> to share and learn.

>

> Health

> Early Detection

> Know the symptoms

> of breast cancer.

>

> Y! Groups blog

> The place to go

> to stay informed

> on Groups news!

>

>

>

> .

>

>

>

>

>

> 4-H Leader extraordinaire!

> All-Star Advisor to the most awesome

> kids of Amador County!

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

[Guest guest]

It is possible that what you thought was heartburn was really a spasm.

It seems like after surgery or a dialation the esophagus goes into crisis for some and spasms come on really strong, then may taper off over time. Doctors don't tell you and seems like I'm the only one that warns people, so maybe it is only my perspective. But from patients I've known after surgery and my experience after dialation and surgery, that is what happened.

After surgery, while still in the hospital and on strong pain meds, I had a spasm that was a killer even through the pain meds. They tapered off later, but were different than the spasms before surgery.

Sandy

> >> > Hello Jan, > > I think I responded to you first by just answering a couple of > things by line. > > it was in response to burping and undoing myotomy's and etc. > > I am sorry I started a barrage. > > Just to hopefully help the position you feel like you have been > cast into... There is so much information so many seekers and so > many....100's on any given day in this group looking for a solution, > an answer, a breakthrough, all hoping to avoid the only solution > known..surgery.> > I constantly read the medical journals looking for a > breakthrough.. I believe the breakthrough will come from the people > on this board, eventually. > > If you had been here for a whle ... you, too, would be amazed at > some of the ideas this group has as to the cause of Achalasia. > > One of the most viable possibilities is .. some sort of damage to > the Vagus Nerve, whether by virus, by damage or accident. > > What causes the Achalasia... The Vagus Nerve bundle, the longest > in the body leaves the spine at C3 or C4 (neck) and travels down the > esophagus splintering off like fingers to control the function of > swallowing all the way down. It continues down to the stomach area > and intestines impacting how the stomach and the intestines work. > > When you have a myotomy, the process is a very very delicate > one. The lower esophageal sphincter muscle has the vagus nerve > wrapped around it. The surgeon must untangle the nerve bundle first > before cutting the muscle fiber. The NERVES are what has caused the > sphincter to close and not open properly. > > > > According to my son's surgeon, there is no > cure/causation/research going on in the field of achalasia, at this > time. There is NOT enough people affected to warrant philanthropic > research funds to be given to do the research.. It won't benefit the > greater good... for the investment. > > > > Please just take a moment and understand that everyone who > arrives here is desperate for a reason, a cause and a cure. > > > > Those of us who have been here for 2 years or more have witnessed > over a 1000 new people come to this new group Each and everytime a > new person comes to this group, help is waiting to be encouraging to > offer experience and solutions. > > It is sometimes difficult to remain FRESH each time, for each > person.. > > So to all whom are new please forgive us for seeming calloused > and uncaring.> > WE are NOT. We just skipped a few things in the diplomacy part, > because remember over a 1000 new people in less than 2 years... all > asking and seeking encouragement and information > > Tryng to remember to be gracious..> > Carolyn> > mom of Cameron> > myo'd ~n~ fundo'd > > 2005.. in N. Calif> > > > > > > > > > Andy- I guess I must be reacting to how defensive of > surgery just > > about everyone on this site seems to be. I am not "against" > anything > > or anyone. I am looking for hope. > > > I can> > > > eat whatever I want, whenever I want. I don't have to do the old> > > > "heave-ho" with my esophagus every night before bedtime like > they > > > recommend.> > > > > > There is a very caring alternative group' and yes because we do > > not > > > > believe this is incurable; we are all treated like we have > > > something > > > > the rest can catch. The majority of the people on the site live > > > their > > > > disease. They have lots of valuable information, but please do > > not > > > > let it discourage you too much. > > > > > > Do not give up, i think we are very close to a cure or some > ways > > to > > > > hang in there till we can be "cured". My understanding is, > that if you have the myotomy > > > and > > > > or one of the "wraps", you will never be able to undo the > > surgery, > > > > you will not be able to burp, will take an anti-reflux > > prescription > > > > medication for the rest of your life and may still get cancer > of > > > the > > > > esophagus or have the whole thing removed. > > > > 7 pm and emptying your esophagus before you go to bed also > helps.> > > > > > > > > > > > Recent Activity> > > > 4> > New Members> > > > 1> > New Links> > > > Visit Your Group > > Meditation and> > Lovingkindness> > A Group> > to share and learn.> > > > Health> > Early Detection> > Know the symptoms> > of breast cancer.> > > > Y! Groups blog> > The place to go> > to stay informed> > on Groups news!> > > > > > > > .> > > > > > > > > > > > 4-H Leader extraordinaire!> > All-Star Advisor to the most awesome> > kids of Amador County!> > > > > > > > > > > > ---------------------------------> > Never miss a thing. Make your homepage.> >>

[Guest guest]

Andy- my comment was that I experienced the intense heartburn after

the endoscopic exam (during which the doctor did a small amount of

ballooning and I did not know he was going to do that because we did

not discuss it prior.) He did not warn me of what would happen to me

and that I would almost immediately experience intense acid

reflux....the pain was so severe I found myself writhing on the floor

with my boyfriend ready to dial 9-1-1. To me it pointed out the

possibility that the sphincter had tightened up in response to the

presence of acid. I am curious about one thing though, what is the

percentage of people with achalasia who also had obesity going on? Is

there a correlation between obesity and achalasia?

Jan

-- In achalasia , Haigh <mr.gadget1961@...>

wrote:

>

> Jan

> Not sure whether it's on the rise or not or whether it's just that

awareness

> is increasing. 1000 new members may sound a lot but that's

WORLDWIDE. In the

> UK there are 60,000,000 people of which only 600 have Achalasia so

I would

> say it's still pretty rare.

>

> The comment made that " opening up the sphincter would result in the

most

> intense and painful heartburn I've ever experienced " seems way over

the top

> from what I have read and heard by people who have had a dilation

but

> perhaps they would like to confirm this either way. What did he

mean by

> 'opening the sphincter' - if you aren't sure then posting such a

comment is

> a little misleading. I have had the muscles around my sphincter cut

and

> hence relaxed and opened so surely that comment could apply to me

but I have

> never experienced any heartburn whatsoever.

>

> Another point you made " I would like to believe that my body can

heal if I

> treat it better " seems also to be a little misguided in this case.

For

> example when I was much younger I broke a collar bone and let it

heal

> without intervention - it didn't heal correctly and there's now a

permanent

> lump where the two bones have not lined up correctly. How would

treating it

> better have made any difference except that treating it better

means medical

> intervention in most cases when dealing with our body. You can

certainly

> help your body if you treat it better to start with but trying to

heal it

> afterwards is not as easy. My surgeon is also very experienced with

people

> with severe obesity problems -

> http://www.surgery4obesity.co.uk/introducing.asp - and helps them

with

> surgical procedures on their stomachs. This cannot be healed by

treating it

> better - you need to do that first. With Achalasia whose cause is

as yet

> unknown we can't treat our body better to start with as we don't

know what

> causes it so we are stuck with treating it afterwards.

>

> The message about the vages nerve was incorrect and has been

corrected I

> believe so it's of no relevance to Achalasia.

>

> I read that you are prepared to live with your decision that you

may be

> damaging yourself by waiting and avoiding surgery but many of us

aren't in

> that position and have to take relatively urgent medical steps and

the

> little time we have we spend finding experienced surgeons. If

whilst doing

> this we would have found any other options we would have taken them

so my

> belief is that surgery IS the only option to treat Achalasia at

this time

> and its now that I need the treatment and could not have waited for

someone

> at a university to get a grant and look into it. I would also

respectfully

> suggest that at your age you too are too late to wait for a

University to

> come up with some miracle cure.

>

> Not sure if I have missed anything in the past but have you had the

three

> basic tests to correctly diagnose Achalasia as your surgeons

comments leave

> me doubting his experience in this field. You say that we on this

group are

> not doctors or researchers and have no background in this area and

I take

> exception to this as will many members - we have a lot more

background and

> have probably done more research than many doctors in this area and

that's

> part of the problem as it so rare its often misdiagnosed and when

it is you

> can be operated on by an inexperience surgeon who makes a mess of

it hence

> the problems that's making you scared of the surgery I would

imagine. I

> respect your beliefs for avoiding surgery but as its been pointed

out many

> times it really is the only option that can give any hope of a long

term fix

> at this time. Perhaps in 10 years they may find another less

invasion option

> but can we wait that long - I know for a fact I couldn't.

>

> Andy

>

>

> Re: Jan and hope, and new people... please read

>

> Hi Carolyn- I thank you for taking the time to respond to yet

another

> freaked out achalasia " newbie " ...especially one who is resistant to

> the traditional approaches that western medicine prescribes(in lieu

> of having the funds to find more answers.) It seems to me that

there

> is a paradox in that we're told this is rare yet you say you've

> gotten 1000 new members in the past 2 years. Is this condition on

> the rise? Is our environment and way of life causing it? You

> mentioned a possible virus....has anyone looked at H-pylori? You

> mentioned the vagus nerve being the culprit....I have a colleague

at

> work who had his vagus nerve cut when he was a young man due to too

> much stomach acid being produced....in his case the vagus nerve

kept

> growing back...he had to have it redone a few times. If the vagus

> nerve is the suspect what is wreaking havoc on it? None of us are

> doctors or researchers on here...we turn to each other instead..and

> we have no background or facilities in which to deal with it. Maybe

> we should be going to the larger universities to find someone who

> wants to have a reason to get a research grant? It seems our

numbers

> are growing and that ought to a good reason. The University of

> Washington, for example, has numerous people hired who go get

> research grants to study many conditions....and that's just one

> university in Seattle. Who else is out there?

> In the meantime I am working on my alkaline diet..my doctor at

> Swedish Medical Institute in Seattle, Schuffler, did the

> endoscopic exam on me and forgot to mention that opening up the

> sphincter would result in the most intense and painful heartburn

I've

> ever experienced. From that point on I dove into the Alkaline diet

> books and have felt a lot better. I have thought right from the

start

> that the modern diet is the culprit. We are inundated by so many

> refined processed foods that according to the books I'm reading are

> highly acid forming. That in itself could be destroying the vagus

> nerve bundle. For me, getting control of the reflux pain meant

> changing to an alkaline diet. I used to eat that way when I was in

> college in my 20's so it is not new to me. I'm like a lot of people

> and I simply got lazy as I got older and was raising children,

> working 3 jobs at a time, going to school, trying to support a

> painting studio, and trying to have a social life. Taking the easy

> way at the grocery store was a short cut. Now I may be paying for

it.

> I would like to believe that my body can heal if I treat it better.

> From what I'm reading on this site, no one believes that. They

> believe they're esophagus is permanently lost if they don't do the

> surgery. They may be right. I want to give myself a chance. If by

> spending the time to do that I'm causing myself even more damage,

> then I will have to live with that decision. I could change my mind

> tomorrow. For the time being I feel pretty good. No more reflux.

> Eating smaller meals. Fasting is not a dirty word in my vocabulary.

>

> Jan

>

>

> >

> > Hello Jan,

> > I think I responded to you first by just answering a couple of

> things by line.

> > it was in response to burping and undoing myotomy's and etc.

> > I am sorry I started a barrage.

> > Just to hopefully help the position you feel like you have been

> cast into... There is so much information so many seekers and so

> many....100's on any given day in this group looking for a

solution,

> an answer, a breakthrough, all hoping to avoid the only solution

> known..surgery.

> > I constantly read the medical journals looking for a

> breakthrough.. I believe the breakthrough will come from the people

> on this board, eventually.

> > If you had been here for a whle ... you, too, would be amazed

at

> some of the ideas this group has as to the cause of Achalasia.

> > One of the most viable possibilities is .. some sort of damage

to

> the Vagus Nerve, whether by virus, by damage or accident.

> > What causes the Achalasia... The Vagus Nerve bundle, the

longest

> in the body leaves the spine at C3 or C4 (neck) and travels down

the

> esophagus splintering off like fingers to control the function of

> swallowing all the way down. It continues down to the stomach area

> and intestines impacting how the stomach and the intestines work.

> > When you have a myotomy, the process is a very very delicate

> one. The lower esophageal sphincter muscle has the vagus nerve

> wrapped around it. The surgeon must untangle the nerve bundle

first

> before cutting the muscle fiber. The NERVES are what has caused

the

> sphincter to close and not open properly.

> >

> > According to my son's surgeon, there is no

> cure/causation/research going on in the field of achalasia, at this

> time. There is NOT enough people affected to warrant

philanthropic

> research funds to be given to do the research.. It won't benefit

the

> greater good... for the investment.

> >

> > Please just take a moment and understand that everyone who

> arrives here is desperate for a reason, a cause and a cure.

> >

> > Those of us who have been here for 2 years or more have

witnessed

> over a 1000 new people come to this new group Each and everytime

a

> new person comes to this group, help is waiting to be encouraging

to

> offer experience and solutions.

> > It is sometimes difficult to remain FRESH each time, for each

> person..

> > So to all whom are new please forgive us for seeming calloused

> and uncaring.

> > WE are NOT. We just skipped a few things in the diplomacy

part,

> because remember over a 1000 new people in less than 2 years... all

> asking and seeking encouragement and information

> > Tryng to remember to be gracious..

> > Carolyn

> > mom of Cameron

> > myo'd ~n~ fundo'd

> > 2005.. in N. Calif

> >

> >

> >

> >

> > Andy- I guess I must be reacting to how defensive of

> surgery just

> > about everyone on this site seems to be. I am not " against "

> anything

> > or anyone. I am looking for hope.

> > > I can

> > > > eat whatever I want, whenever I want. I don't have to do the

old

> > > > " heave-ho " with my esophagus every night before bedtime like

> they

> > > recommend.

> >

> > > > There is a very caring alternative group' and yes because we

do

> > not

> > > > believe this is incurable; we are all treated like we have

> > > something

> > > > the rest can catch. The majority of the people on the site

live

> > > their

> > > > disease. They have lots of valuable information, but please

do

> > not

> > > > let it discourage you too much. > >

> > > > Do not give up, i think we are very close to a cure or some

> ways

> > to

> > > > hang in there till we can be " cured " . My understanding is,

> that if you have the myotomy

> > > and

> > > > or one of the " wraps " , you will never be able to undo the

> > surgery,

> > > > you will not be able to burp, will take an anti-reflux

> > prescription

> > > > medication for the rest of your life and may still get cancer

> of

> > > the

> > > > esophagus or have the whole thing removed.

> > > > 7 pm and emptying your esophagus before you go to bed also

> helps.

> > > >

> >

> >

> >

> > Recent Activity

> >

> > 4

> > New Members

> >

> > 1

> > New Links

> >

> > Visit Your Group

> > Meditation and

> > Lovingkindness

> > A Group

> > to share and learn.

> >

> > Health

> > Early Detection

> > Know the symptoms

> > of breast cancer.

> >

> > Y! Groups blog

> > The place to go

> > to stay informed

> > on Groups news!

> >

> >

> >

> > .

> >

> >

> >

> >

> >

> > 4-H Leader extraordinaire!

> > All-Star Advisor to the most awesome

> > kids of Amador County!

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make your homepage.

> >

>

>

>

>

>

>

[Guest guest]

wipperwillow wrote:

> ... He did not warn me of what would happen to me

> and that I would almost immediately experience intense acid

> reflux....the pain was so severe I found myself writhing on the floor

Others in this group have had pain like that and found it was not from

acid and becomes less of a problem over time with or without doing

anything for it. I can't say what your pain is, but that is what others

have found.

notan

[Guest guest]

Sandy wrote:

.... Doctors don't tell you and seems

like I'm the only one that warns people, so maybe it is only my

perspective. ...

You missed an opportunity there. You could have created a plan, any

plan, and written a book telling people that if they followed your plan

the pain would over time become less, and it would cure colds too,

typically in seven to ten days.

notan

[Guest guest]

Haigh wrote:

> ... In the

> UK there are 60,000,000 people of which only 600 have Achalasia so I would

> say it's still pretty rare.

>

That is easy to get wrong and misunderstand the 1/100,000 rate. That

rate is for new cases per year. So, there would be, in your example, 600

new cases a year, which comes out to being about 6,000 people with it at

any time, for the 60,000,000 people there.

notan

[Guest guest]

It does sound like he didn't know what he was doing and to not tell you

beforehand...are you saying that the pain was experienced by just have the

endoscopy examination. Not heard of that before, I was certainly not made

aware that I would suffer of pain and I didn't.

As I mentioned earlier have you been diagnosed correctly with Achalasia

using the three basic tests that seem to be standard around the world...

Endoscopic examination

Barium Swallow

Manometry test

Something else that may interest you...

" Many of the causes of achalasia are not preventable. However, treatment of

the disorder may help to prevent complications. "

http://www.nlm.nih.gov/medlineplus/ency/article/000267.htm

Not sure if there is a link or if you have misread my post about obesity and

achalasia but I was NOT inferring any link - it's just my surgeon treats

both as he is a GI specialist hence the reason my local hospital referred me

to him.

Andy

Re: Jan and hope, and new people... please read

>

> Hi Carolyn- I thank you for taking the time to respond to yet

another

> freaked out achalasia " newbie " ...especially one who is resistant to

> the traditional approaches that western medicine prescribes(in lieu

> of having the funds to find more answers.) It seems to me that

there

> is a paradox in that we're told this is rare yet you say you've

> gotten 1000 new members in the past 2 years. Is this condition on

> the rise? Is our environment and way of life causing it? You

> mentioned a possible virus....has anyone looked at H-pylori? You

> mentioned the vagus nerve being the culprit....I have a colleague

at

> work who had his vagus nerve cut when he was a young man due to too

> much stomach acid being produced....in his case the vagus nerve

kept

> growing back...he had to have it redone a few times. If the vagus

> nerve is the suspect what is wreaking havoc on it? None of us are

> doctors or researchers on here...we turn to each other instead..and

> we have no background or facilities in which to deal with it. Maybe

> we should be going to the larger universities to find someone who

> wants to have a reason to get a research grant? It seems our

numbers

> are growing and that ought to a good reason. The University of

> Washington, for example, has numerous people hired who go get

> research grants to study many conditions....and that's just one

> university in Seattle. Who else is out there?

> In the meantime I am working on my alkaline diet..my doctor at

> Swedish Medical Institute in Seattle, Schuffler, did the

> endoscopic exam on me and forgot to mention that opening up the

> sphincter would result in the most intense and painful heartburn

I've

> ever experienced. From that point on I dove into the Alkaline diet

> books and have felt a lot better. I have thought right from the

start

> that the modern diet is the culprit. We are inundated by so many

> refined processed foods that according to the books I'm reading are

> highly acid forming. That in itself could be destroying the vagus

> nerve bundle. For me, getting control of the reflux pain meant

> changing to an alkaline diet. I used to eat that way when I was in

> college in my 20's so it is not new to me. I'm like a lot of people

> and I simply got lazy as I got older and was raising children,

> working 3 jobs at a time, going to school, trying to support a

> painting studio, and trying to have a social life. Taking the easy

> way at the grocery store was a short cut. Now I may be paying for

it.

> I would like to believe that my body can heal if I treat it better.

> From what I'm reading on this site, no one believes that. They

> believe they're esophagus is permanently lost if they don't do the

> surgery. They may be right. I want to give myself a chance. If by

> spending the time to do that I'm causing myself even more damage,

> then I will have to live with that decision. I could change my mind

> tomorrow. For the time being I feel pretty good. No more reflux.

> Eating smaller meals. Fasting is not a dirty word in my vocabulary.

>

> Jan

>

>

> >

> > Hello Jan,

> > I think I responded to you first by just answering a couple of

> things by line.

> > it was in response to burping and undoing myotomy's and etc.

> > I am sorry I started a barrage.

> > Just to hopefully help the position you feel like you have been

> cast into... There is so much information so many seekers and so

> many....100's on any given day in this group looking for a

solution,

> an answer, a breakthrough, all hoping to avoid the only solution

> known..surgery.

> > I constantly read the medical journals looking for a

> breakthrough.. I believe the breakthrough will come from the people

> on this board, eventually.

> > If you had been here for a whle ... you, too, would be amazed

at

> some of the ideas this group has as to the cause of Achalasia.

> > One of the most viable possibilities is .. some sort of damage

to

> the Vagus Nerve, whether by virus, by damage or accident.

> > What causes the Achalasia... The Vagus Nerve bundle, the

longest

> in the body leaves the spine at C3 or C4 (neck) and travels down

the

> esophagus splintering off like fingers to control the function of

> swallowing all the way down. It continues down to the stomach area

> and intestines impacting how the stomach and the intestines work.

> > When you have a myotomy, the process is a very very delicate

> one. The lower esophageal sphincter muscle has the vagus nerve

> wrapped around it. The surgeon must untangle the nerve bundle

first

> before cutting the muscle fiber. The NERVES are what has caused

the

> sphincter to close and not open properly.

> >

> > According to my son's surgeon, there is no

> cure/causation/research going on in the field of achalasia, at this

> time. There is NOT enough people affected to warrant

philanthropic

> research funds to be given to do the research.. It won't benefit

the

> greater good... for the investment.

> >

> > Please just take a moment and understand that everyone who

> arrives here is desperate for a reason, a cause and a cure.

> >

> > Those of us who have been here for 2 years or more have

witnessed

> over a 1000 new people come to this new group Each and everytime

a

> new person comes to this group, help is waiting to be encouraging

to

> offer experience and solutions.

> > It is sometimes difficult to remain FRESH each time, for each

> person..

> > So to all whom are new please forgive us for seeming calloused

> and uncaring.

> > WE are NOT. We just skipped a few things in the diplomacy

part,

> because remember over a 1000 new people in less than 2 years... all

> asking and seeking encouragement and information

> > Tryng to remember to be gracious..

> > Carolyn

> > mom of Cameron

> > myo'd ~n~ fundo'd

> > 2005.. in N. Calif

> >

> >

> >

> >

> > Andy- I guess I must be reacting to how defensive of

> surgery just

> > about everyone on this site seems to be. I am not " against "

> anything

> > or anyone. I am looking for hope.

> > > I can

> > > > eat whatever I want, whenever I want. I don't have to do the

old

> > > > " heave-ho " with my esophagus every night before bedtime like

> they

> > > recommend.

> >

> > > > There is a very caring alternative group' and yes because we

do

> > not

> > > > believe this is incurable; we are all treated like we have

> > > something

> > > > the rest can catch. The majority of the people on the site

live

> > > their

> > > > disease. They have lots of valuable information, but please

do

> > not

> > > > let it discourage you too much. > >

> > > > Do not give up, i think we are very close to a cure or some

> ways

> > to

> > > > hang in there till we can be " cured " . My understanding is,

> that if you have the myotomy

> > > and

> > > > or one of the " wraps " , you will never be able to undo the

> > surgery,

> > > > you will not be able to burp, will take an anti-reflux

> > prescription

> > > > medication for the rest of your life and may still get cancer

> of

> > > the

> > > > esophagus or have the whole thing removed.

> > > > 7 pm and emptying your esophagus before you go to bed also

> helps.

> > > >

> >

> >

> >

> > Recent Activity

> >

> > 4

> > New Members

> >

> > 1

> > New Links

> >

> > Visit Your Group

> > Meditation and

> > Lovingkindness

> > A Group

> > to share and learn.

> >

> > Health

> > Early Detection

> > Know the symptoms

> > of breast cancer.

> >

> > Y! Groups blog

> > The place to go

> > to stay informed

> > on Groups news!

> >

> >

> >

> > .

> >

> >

> >

> >

> >

> > 4-H Leader extraordinaire!

> > All-Star Advisor to the most awesome

> > kids of Amador County!

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make your homepage.

> >

>

>

>

>

>

>

[Guest guest]

Sorry my mistake but the point still stands that's its rare..

Re: Re: Jan and hope, and new people... please read

Haigh wrote:

> ... In the

> UK there are 60,000,000 people of which only 600 have Achalasia so I would

> say it's still pretty rare.

>

That is easy to get wrong and misunderstand the 1/100,000 rate. That

rate is for new cases per year. So, there would be, in your example, 600

new cases a year, which comes out to being about 6,000 people with it at

any time, for the 60,000,000 people there.

notan

[Guest guest]

And solve your and my (yours and mine?? grammar teachers help) hormonal issues. A book that is.

Jan you are bringing up issues that we forget to mention and don't get asked that often. As Carolyn mentioned, us oldies breeze over the discussed issues and maybe new members feel ignored.

Some of them you have brought up:

Viruses as a cause... there is very old and slightly unsubstantiated research that achalasia may be caused by herpes viruses, including chicken pox. But not much recently

Obesity and achalasia, yes, many of us have weight issues, many, although no research to substantiate it, but to some, the weight loss is welcome and has solved diabetes issues, heart issues and other things. But many of us eat higher fat foods because they are easier. Some are obese and can't eat, I know one that had bypass surgery AFTER the achalasia diagnosis, but she had to find the doctor who would do it, and is considering a myotomy, but afraid she will gain weight if she does.

There is reportedly also a correlation with depression and achalasia according to some.

Not sure if all these things are true but because those of us in this group are open enough to discuss regurging etc. we are pretty open about weight and depression also. There are some improvements in spasms, reportedly after taking antidepressants also.

As far as research, this is often a topic for new people, but there aren't enough of us to make it beneficial to anyone. As we live with the disease we give up on research, it seems like. Really would I want rare diseases researched compared to say, spinal cord injuries or other more common issues? Looking at the big picture, probably not. GERD is a huge issue however, and that is almost the opposite of achalasia and there is a lot of research on it, at least among drug companies, so maybe there will be something that helps us just by other research. I think research into achalasia on any kind of large level is hopeless realistically. Might as well give up on that IMHO. More of us will die from cancer, heart disease or something common than achalasia. However achalasia may be a complication making treatment for those diseases more difficult. I'd prefer research into the more common problems.

One last comment... after having met about 20 of "us" and learned their stories, what you see as posts here is sometimes only the tip of the iceberg. There are many reasons some don't seek treatment that they don't mention, such as other ill family members, other obligations and just other issues. Or the same reasons they chose a different method than we choose. Let alone different doctors than our choices. I try, yet sometimes fail, to remain open to their choices and try not to shove my decisions down their throat. We don't know all there is to their choices. Many of us do live in large metropolitan areas and the choices are easier. For some, just having someone to take them, and someone to stay behind and handle their obligations is the biggest problem and that is the biggest obstruction to treatment. (thinking back to my parents living on a farm/ranch and way overly protective of their pets, who would feed the wild turkeys, give the cat tidbits 3x a day and all the other important things in their lives?)

So, Jan, keep asking questions, and be patient if we forget or there is someone new who wants to hit you on the head to see their way. I, for one, will try to not make judgements on your choice, but give you a forum to discuss and wonder about choices.

Sandy

PS... Carolyn... Well, so you think you are Notan's favorite, that means you probably think you are 's favorite too? They may be playing us?

[Guest guest]

Andy- I have had all 3 tests and they say it's conclusive. As for

the doctor who did the endoscopic exam, he is highly regarded, but my

opinion is that he is swamped and moving way too fast to remember to

tell someone the things they need to know but do not know to ask.

All I know is that I went home from the endoscopic exam and had a

really bad amount of heartburn that was excruciating. I called my

doctor back to ask him if this was possibly caused by being " opened

up " by the endoscopic exam and he said that it could do that. He did

not apologize.

Jan

> > >

> > > Hello Jan,

> > > I think I responded to you first by just answering a couple

of

> > things by line.

> > > it was in response to burping and undoing myotomy's and etc.

> > > I am sorry I started a barrage.

> > > Just to hopefully help the position you feel like you have

been

> > cast into... There is so much information so many seekers and so

> > many....100's on any given day in this group looking for a

> solution,

> > an answer, a breakthrough, all hoping to avoid the only solution

> > known..surgery.

> > > I constantly read the medical journals looking for a

> > breakthrough.. I believe the breakthrough will come from the

people

> > on this board, eventually.

> > > If you had been here for a whle ... you, too, would be amazed

> at

> > some of the ideas this group has as to the cause of Achalasia.

> > > One of the most viable possibilities is .. some sort of

damage

> to

> > the Vagus Nerve, whether by virus, by damage or accident.

> > > What causes the Achalasia... The Vagus Nerve bundle, the

> longest

> > in the body leaves the spine at C3 or C4 (neck) and travels down

> the

> > esophagus splintering off like fingers to control the function of

> > swallowing all the way down. It continues down to the stomach

area

> > and intestines impacting how the stomach and the intestines

work.

> > > When you have a myotomy, the process is a very very delicate

> > one. The lower esophageal sphincter muscle has the vagus nerve

> > wrapped around it. The surgeon must untangle the nerve bundle

> first

> > before cutting the muscle fiber. The NERVES are what has caused

> the

> > sphincter to close and not open properly.

> > >

> > > According to my son's surgeon, there is no

> > cure/causation/research going on in the field of achalasia, at

this

> > time. There is NOT enough people affected to warrant

> philanthropic

> > research funds to be given to do the research.. It won't benefit

> the

> > greater good... for the investment.

> > >

> > > Please just take a moment and understand that everyone who

> > arrives here is desperate for a reason, a cause and a cure.

> > >

> > > Those of us who have been here for 2 years or more have

> witnessed

> > over a 1000 new people come to this new group Each and

everytime

> a

> > new person comes to this group, help is waiting to be encouraging

> to

> > offer experience and solutions.

> > > It is sometimes difficult to remain FRESH each time, for each

> > person..

> > > So to all whom are new please forgive us for seeming

calloused

> > and uncaring.

> > > WE are NOT. We just skipped a few things in the diplomacy

> part,

> > because remember over a 1000 new people in less than 2 years...

all

> > asking and seeking encouragement and information

> > > Tryng to remember to be gracious..

> > > Carolyn

> > > mom of Cameron

> > > myo'd ~n~ fundo'd

> > > 2005.. in N. Calif

> > >

> > >

> > >

> > >

> > > Andy- I guess I must be reacting to how defensive of

> > surgery just

> > > about everyone on this site seems to be. I am not " against "

> > anything

> > > or anyone. I am looking for hope.

> > > > I can

> > > > > eat whatever I want, whenever I want. I don't have to do

the

> old

> > > > > " heave-ho " with my esophagus every night before bedtime

like

> > they

> > > > recommend.

> > >

> > > > > There is a very caring alternative group' and yes because

we

> do

> > > not

> > > > > believe this is incurable; we are all treated like we have

> > > > something

> > > > > the rest can catch. The majority of the people on the site

> live

> > > > their

> > > > > disease. They have lots of valuable information, but please

> do

> > > not

> > > > > let it discourage you too much. > >

> > > > > Do not give up, i think we are very close to a cure or some

> > ways

> > > to

> > > > > hang in there till we can be " cured " . My understanding is,

> > that if you have the myotomy

> > > > and

> > > > > or one of the " wraps " , you will never be able to undo the

> > > surgery,

> > > > > you will not be able to burp, will take an anti-reflux

> > > prescription

> > > > > medication for the rest of your life and may still get

cancer

> > of

> > > > the

> > > > > esophagus or have the whole thing removed.

> > > > > 7 pm and emptying your esophagus before you go to bed also

> > helps.

> > > > >

> > >

> > >

> > >

> > > Recent Activity

> > >

> > > 4

> > > New Members

> > >

> > > 1

> > > New Links

> > >

> > > Visit Your Group

> > > Meditation and

> > > Lovingkindness

> > > A Group

> > > to share and learn.

> > >

> > > Health

> > > Early Detection

> > > Know the symptoms

> > > of breast cancer.

> > >

> > > Y! Groups blog

> > > The place to go

> > > to stay informed

> > > on Groups news!

> > >

> > >

> > >

> > > .

> > >

> > >

> > >

> > >

> > >

> > > 4-H Leader extraordinaire!

> > > All-Star Advisor to the most awesome

> > > kids of Amador County!

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make your homepage.

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Jan- You asked about a correlation between achalasia and obesity.

My son was 12 when he first got diagnosed and was a bean pole,

weighing in under 90 pounds. I also know a few other achalasians

some are also other children and they are not over weight or obese

either.So I dont think there is any type of connection.

Tonia

> > >

> > > Hello Jan,

> > > I think I responded to you first by just answering a couple

of

> > things by line.

> > > it was in response to burping and undoing myotomy's and etc.

> > > I am sorry I started a barrage.

> > > Just to hopefully help the position you feel like you have

been

> > cast into... There is so much information so many seekers and

so

> > many....100's on any given day in this group looking for a

> solution,

> > an answer, a breakthrough, all hoping to avoid the only solution

> > known..surgery.

> > > I constantly read the medical journals looking for a

> > breakthrough.. I believe the breakthrough will come from the

people

> > on this board, eventually.

> > > If you had been here for a whle ... you, too, would be

amazed

> at

> > some of the ideas this group has as to the cause of Achalasia.

> > > One of the most viable possibilities is .. some sort of

damage

> to

> > the Vagus Nerve, whether by virus, by damage or accident.

> > > What causes the Achalasia... The Vagus Nerve bundle, the

> longest

> > in the body leaves the spine at C3 or C4 (neck) and travels down

> the

> > esophagus splintering off like fingers to control the function

of

> > swallowing all the way down. It continues down to the stomach

area

> > and intestines impacting how the stomach and the intestines

work.

> > > When you have a myotomy, the process is a very very delicate

> > one. The lower esophageal sphincter muscle has the vagus nerve

> > wrapped around it. The surgeon must untangle the nerve bundle

> first

> > before cutting the muscle fiber. The NERVES are what has caused

> the

> > sphincter to close and not open properly.

> > >

> > > According to my son's surgeon, there is no

> > cure/causation/research going on in the field of achalasia, at

this

> > time. There is NOT enough people affected to warrant

> philanthropic

> > research funds to be given to do the research.. It won't benefit

> the

> > greater good... for the investment.

> > >

> > > Please just take a moment and understand that everyone who

> > arrives here is desperate for a reason, a cause and a cure.

> > >

> > > Those of us who have been here for 2 years or more have

> witnessed

> > over a 1000 new people come to this new group Each and

everytime

> a

> > new person comes to this group, help is waiting to be

encouraging

> to

> > offer experience and solutions.

> > > It is sometimes difficult to remain FRESH each time, for

each

> > person..

> > > So to all whom are new please forgive us for seeming

calloused

> > and uncaring.

> > > WE are NOT. We just skipped a few things in the diplomacy

> part,

> > because remember over a 1000 new people in less than 2 years...

all

> > asking and seeking encouragement and information

> > > Tryng to remember to be gracious..

> > > Carolyn

> > > mom of Cameron

> > > myo'd ~n~ fundo'd

> > > 2005.. in N. Calif

> > >

> > >

> > >

> > >

> > > Andy- I guess I must be reacting to how defensive of

> > surgery just

> > > about everyone on this site seems to be. I am not " against "

> > anything

> > > or anyone. I am looking for hope.

> > > > I can

> > > > > eat whatever I want, whenever I want. I don't have to do

the

> old

> > > > > " heave-ho " with my esophagus every night before bedtime

like

> > they

> > > > recommend.

> > >

> > > > > There is a very caring alternative group' and yes because

we

> do

> > > not

> > > > > believe this is incurable; we are all treated like we have

> > > > something

> > > > > the rest can catch. The majority of the people on the site

> live

> > > > their

> > > > > disease. They have lots of valuable information, but

please

> do

> > > not

> > > > > let it discourage you too much. > >

> > > > > Do not give up, i think we are very close to a cure or

some

> > ways

> > > to

> > > > > hang in there till we can be " cured " . My understanding

is,

> > that if you have the myotomy

> > > > and

> > > > > or one of the " wraps " , you will never be able to undo the

> > > surgery,

> > > > > you will not be able to burp, will take an anti-reflux

> > > prescription

> > > > > medication for the rest of your life and may still get

cancer

> > of

> > > > the

> > > > > esophagus or have the whole thing removed.

> > > > > 7 pm and emptying your esophagus before you go to bed also

> > helps.

> > > > >

> > >

> > >

> > >

> > > Recent Activity

> > >

> > > 4

> > > New Members

> > >

> > > 1

> > > New Links

> > >

> > > Visit Your Group

> > > Meditation and

> > > Lovingkindness

> > > A Group

> > > to share and learn.

> > >

> > > Health

> > > Early Detection

> > > Know the symptoms

> > > of breast cancer.

> > >

> > > Y! Groups blog

> > > The place to go

> > > to stay informed

> > > on Groups news!

> > >

> > >

> > >

> > > .

> > >

> > >

> > >

> > >

> > >

> > > 4-H Leader extraordinaire!

> > > All-Star Advisor to the most awesome

> > > kids of Amador County!

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make your homepage.

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Think it was my post that was misread or misinterpreted - I was not meaning

there was any connection - it was just that my surgeon treats both as he is

a GI specialist. I was also trying to point out that you treating your body

better can't always heal it as Jan would like to think/believe. I was also

trying to point out in my example that 'treating an obese body better'

wouldn't heal it as it's too late as is my belief with Achalasia i.e. once

you have it you can't heal it just by treating it better - it's too late

once you have it as its incurable (apart from major surgery to remove your

'e') as I was told when I asked recently - once an Achalasian always an

Achalasian

Andy

Re: Jan and hope, and new people... please read

Jan- You asked about a correlation between achalasia and obesity.

My son was 12 when he first got diagnosed and was a bean pole,

weighing in under 90 pounds. I also know a few other achalasians

some are also other children and they are not over weight or obese

either.So I dont think there is any type of connection.

Tonia

> > >

> > > Hello Jan,

> > > I think I responded to you first by just answering a couple

of

> > things by line.

> > > it was in response to burping and undoing myotomy's and etc.

> > > I am sorry I started a barrage.

> > > Just to hopefully help the position you feel like you have

been

> > cast into... There is so much information so many seekers and

so

> > many....100's on any given day in this group looking for a

> solution,

> > an answer, a breakthrough, all hoping to avoid the only solution

> > known..surgery.

> > > I constantly read the medical journals looking for a

> > breakthrough.. I believe the breakthrough will come from the

people

> > on this board, eventually.

> > > If you had been here for a whle ... you, too, would be

amazed

> at

> > some of the ideas this group has as to the cause of Achalasia.

> > > One of the most viable possibilities is .. some sort of

damage

> to

> > the Vagus Nerve, whether by virus, by damage or accident.

> > > What causes the Achalasia... The Vagus Nerve bundle, the

> longest

> > in the body leaves the spine at C3 or C4 (neck) and travels down

> the

> > esophagus splintering off like fingers to control the function

of

> > swallowing all the way down. It continues down to the stomach

area

> > and intestines impacting how the stomach and the intestines

work.

> > > When you have a myotomy, the process is a very very delicate

> > one. The lower esophageal sphincter muscle has the vagus nerve

> > wrapped around it. The surgeon must untangle the nerve bundle

> first

> > before cutting the muscle fiber. The NERVES are what has caused

> the

> > sphincter to close and not open properly.

> > >

> > > According to my son's surgeon, there is no

> > cure/causation/research going on in the field of achalasia, at

this

> > time. There is NOT enough people affected to warrant

> philanthropic

> > research funds to be given to do the research.. It won't benefit

> the

> > greater good... for the investment.

> > >

> > > Please just take a moment and understand that everyone who

> > arrives here is desperate for a reason, a cause and a cure.

> > >

> > > Those of us who have been here for 2 years or more have

> witnessed

> > over a 1000 new people come to this new group Each and

everytime

> a

> > new person comes to this group, help is waiting to be

encouraging

> to

> > offer experience and solutions.

> > > It is sometimes difficult to remain FRESH each time, for

each

> > person..

> > > So to all whom are new please forgive us for seeming

calloused

> > and uncaring.

> > > WE are NOT. We just skipped a few things in the diplomacy

> part,

> > because remember over a 1000 new people in less than 2 years...

all

> > asking and seeking encouragement and information

> > > Tryng to remember to be gracious..

> > > Carolyn

> > > mom of Cameron

> > > myo'd ~n~ fundo'd

> > > 2005.. in N. Calif

> > >

> > >

> > >

> > >

> > > Andy- I guess I must be reacting to how defensive of

> > surgery just

> > > about everyone on this site seems to be. I am not " against "

> > anything

> > > or anyone. I am looking for hope.

> > > > I can

> > > > > eat whatever I want, whenever I want. I don't have to do

the

> old

> > > > > " heave-ho " with my esophagus every night before bedtime

like

> > they

> > > > recommend.

> > >

> > > > > There is a very caring alternative group' and yes because

we

> do

> > > not

> > > > > believe this is incurable; we are all treated like we have

> > > > something

> > > > > the rest can catch. The majority of the people on the site

> live

> > > > their

> > > > > disease. They have lots of valuable information, but

please

> do

> > > not

> > > > > let it discourage you too much. > >

> > > > > Do not give up, i think we are very close to a cure or

some

> > ways

> > > to

> > > > > hang in there till we can be " cured " . My understanding

is,

> > that if you have the myotomy

> > > > and

> > > > > or one of the " wraps " , you will never be able to undo the

> > > surgery,

> > > > > you will not be able to burp, will take an anti-reflux

> > > prescription

> > > > > medication for the rest of your life and may still get

cancer

> > of

> > > > the

> > > > > esophagus or have the whole thing removed.

> > > > > 7 pm and emptying your esophagus before you go to bed also

> > helps.

> > > > >

> > >

> > >

> > >

> > > Recent Activity

> > >

> > > 4

> > > New Members

> > >

> > > 1

> > > New Links

> > >

> > > Visit Your Group

> > > Meditation and

> > > Lovingkindness

> > > A Group

> > > to share and learn.

> > >

> > > Health

> > > Early Detection

> > > Know the symptoms

> > > of breast cancer.

> > >

> > > Y! Groups blog

> > > The place to go

> > > to stay informed

> > > on Groups news!

> > >

> > >

> > >

> > > .

> > >

> > >

> > >

> > >

> > >

> > > 4-H Leader extraordinaire!

> > > All-Star Advisor to the most awesome

> > > kids of Amador County!

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make your homepage.

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sandy wrote:

I, for one, will try

to not make judgements on your choice, but give you a forum to discuss

and wonder about choices.

One thing that newbies should keep in mind is that there is no one way

to post so that all people will find the information to their liking.

If we try to be thorough some will find it too wordy and redundant of

earlier posts. If we try to make concise posts someone will come back

and say "why didn't you tell me." Also, I, and I am sure others,

respond to messages not as though the only reader is going to be the

person who started the discussion but also to people may only be

lurking. When people come and say something like they found a guy on

the internet that says he cured his achalasia with B vitamins (there is

such a site) and say they are going to try that, I can't tell if those

people will want to know about the others that have gone done that path

before or not. Some may not care for it, but I can't assume that if the

person in the discussion does not want to know that are not others

reading that do.

notan

[Guest guest]

Sometimes the "oldies" read constantly, but don't respond often because they have seen cycles of questions and answers come through often. Maybe when the newbies see not many oldies responding, they think it is something new. For some oldies it is just that they have seen the discussions often, and assume others will respond. Not a lack of interest or caring, but just an assumption that someone else will respond. Such topics as research, spasms vs. heartburn, doctor expertise or life after a myotomy come up often and so many assume "someone" else will respond. For most things, reading through old posts brings up those same topics. Some topics remain hot for even months, then fade out, such as spasm vs. heartburn. The general conclusion is that many gi's even well educated ones think they are heartburn. Even with an achalasia diagnosis surgeons and gi's don't understand our spasms. Even some well experienced surgeons think the spasms go away after surgery. That isn't always the case.

Sandy

[Guest guest]

Jan, just remembered that Debbi's post on spasms/heartburn

had been uploaded to the files section of our group. Here is

the link for it.

http://f1.grp.fs.com/v1/oP2wR8CZ__eQ9MSfwhMTdkkDv036e1gXH6Y-sws0LvmE96SbLXbJfrqBmLxUSA8-ta1gRJ5foKU9kI7A-Titz-hUMsJBNw/D.

Maggie

ALThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Sorry just discovered that link does not work...at least for me

it didn't. So go to the Achalasia group site, click on files and

look for "Debbi's NCCP Post.

MaggieThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

You might need to define " spasm " for me. I had intense burning in my

chest to the point that I " wanted to rip my breasts off " ...and that

was not funny. Is that a spasm? To me it was intense heartburn.

Jan

>

>

> Sometimes the " oldies " read constantly, but don't respond often

because

> they have seen cycles of questions and answers come through often.

> Maybe when the newbies see not many oldies responding, they think

it is

> something new. For some oldies it is just that they have seen the

> discussions often, and assume others will respond. Not a lack of

> interest or caring, but just an assumption that someone else will

> respond. Such topics as research, spasms vs. heartburn, doctor

> expertise or life after a myotomy come up often and so many assume

> " someone " else will respond. For most things, reading through old

posts

> brings up those same topics. Some topics remain hot for even

months,

> then fade out, such as spasm vs. heartburn. The general conclusion

is

> that many gi's even well educated ones think they are heartburn.

Even

> with an achalasia diagnosis surgeons and gi's don't understand our

> spasms. Even some well experienced surgeons think the spasms go

away

> after surgery. That isn't always the case.

>

> Sandy

>

[Guest guest]

Hi Jan,

As someone who has been there many times in the past, my heart goes out to you that you went thru this kind of suffering. I don't necessarily know if there is a singular defintion that would distinguish the spasm from the heartburn for you. From your all too brief, but very graphic description, it sounded like a spasm to me. People in our group, including myself, have described the more intense spasms as one would possibly describe suffering from a heart attack, or the "elephant sitting on my chest" tightness and pain, or the feeling that one is having a "heart attack" pain. I'll have to add on (not for my own self of course) your description that it was"so painful I felt like ripping my breasts off!" Now that's painful.

Since you are suffering that much pain, its imperative that we find you a solution. You could probably put in some search words (where you type in a specific word or phrase into the search field and be directed to posts covering your topic), words such as (you guessed it) "spasm" or NCCP (Non Cardiac Chest Pains) and get many references to posts that have discussed this.

In the limited space of this post I would strongly recommend you find out what works to stop a spasm and always have that on or near you. As I've said here numerous times, what works for me is carbonation or nifedipine (sublingual), or even a saltine cracker. You could easily get a hundred suggestions from people here as to what their favorite method is (cold water, warm water, ices, etc.), but what I think we all agree on is to administer it the moment you think a spasm is coming on. Often you might be able to stop it before it starts getting painful.

Some people keep a log or journal as to when they occur, what they were eating or doing when it happened and then learn how to either prevent it, or stop it quickly. For instance I know that the longer I go without eating between meals the greater the chance that a spasm will happen, but it can also happen on a full stomach. I know they are more likely with me to happen in stressful situations, but this is not to say that it can also happen when completely relaxed. The more familiar you are with it, the better prepared and equipped you will be to deal with it.

So keep on asking questions and we'll get you up to speed.

Re: Jan and hope, and new people... please read

You might need to define "spasm" for me. I had intense burning in my chest to the point that I "wanted to rip my breasts off"...and that was not funny. Is that a spasm? To me it was intense heartburn.Jan>> > Sometimes the "oldies" read constantly, but don't respond often because> they have seen cycles of questions and answers come through often. > Maybe when the newbies see not many oldies responding, they think it is> something new. For some oldies it is just that they have seen the> discussions often, and assume others will respond. Not a lack of> interest or caring, but just an assumption that someone else will> respond. Such topics as research, spasms

vs. heartburn, doctor> expertise or life after a myotomy come up often and so many assume> "someone" else will respond. For most things, reading through old posts> brings up those same topics. Some topics remain hot for even months,> then fade out, such as spasm vs. heartburn. The general conclusion is> that many gi's even well educated ones think they are heartburn. Even> with an achalasia diagnosis surgeons and gi's don't understand our> spasms. Even some well experienced surgeons think the spasms go away> after surgery. That isn't always the case.> > Sandy>

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Jan wrote:

> You might need to define " spasm " for me.

A spasm is like a muscle cramp. It is a dysfunctional muscle

contraction. In this group people often refer to chest pain as spasms

even when they could be other types of NCCPs (Non Cardiac Chest Pain).

An esophageal spasm could feel like anything from mild heartburn to a

major heart attack. Like a heart attack a spasm could also be felt in

the back, neck or jaw. In some cases the only way to tell it isn't a

heart attack is to check the heart. The way to test for heartburn is to

take enough antacid to quickly neutralize any acid and see if the pain

quickly goes away. After a dilatation you could have heartburn, or

spasm, or even be suffering from a mild perforation or other NCCP.

notan

[Guest guest]

Feels like a Charlie Horse in my sternum area for me. You can feel it coming, and think if you move just right you can stop it, but it keeps coming. The sooner you catch it the better. For me I gulp all the water I can and try to find bread or crackers. When I couldn't swallow, I'd just regurgitate it all.

The spasms seemed more likely to come if I haven't eaten within an hour or so and at night, but haven't eaten then obviously. They can also happen after stress.

Seemed like stuffing the esophagus with something like bread worked best, along with water. But I was a pro at regurging, did it all day long.

Sandy

> >> > > > Sometimes the "oldies" read constantly, but don't respond often > because> > they have seen cycles of questions and answers come through often. > > Maybe when the newbies see not many oldies responding, they think > it is> > something new. For some oldies it is just that they have seen the> > discussions often, and assume others will respond. Not a lack of> > interest or caring, but just an assumption that someone else will> > respond. Such topics as research, spasms vs. heartburn, doctor> > expertise or life after a myotomy come up often and so many assume> > "someone" else will respond. For most things, reading through old > posts> > brings up those same topics. Some topics remain hot for even > months,> > then fade out, such as spasm vs. heartburn. The general conclusion > is> > that many gi's even well educated ones think they are heartburn. > Even> > with an achalasia diagnosis surgeons and gi's don't understand our> > spasms. Even some well experienced surgeons think the spasms go > away> > after surgery. That isn't always the case.> > > > Sandy> >>

[Guest guest]

Hey,

That sounds a good accurate of description of what I have when I have

chest pains. It used to be much more common for me about 3 years ago

though. I'd wake up, usually at dawn with the pain or I'd have it

around lunch time mostly. At the time on some days I was also going

to the gym at around 12 noon and eating lunch at sometime past 3 pm.

That's probably one of the reasons why they suspected acid reflux

initially. That was my main symptom along with just feeling really

full trying to finish a meal.

PPIs seemed to help me so it could be somehow acid related. In any

case it is quite rare for me these days. Last time I had time and it

was quite strong it would stop even with tons of water...however I

did feel relief when I finally felt water pass into my stomach as it

happens when you are pushing a meal along with water.

So for me it feels like it could have a relation with all of these:

acid, tightning of the LES and food sitting in your esophagus for

long periods of time.

Francisco

> > >

> > >

> > > Sometimes the " oldies " read constantly, but don't respond often

> > because

> > > they have seen cycles of questions and answers come through

often.

> > > Maybe when the newbies see not many oldies responding, they

think

> > it is

> > > something new. For some oldies it is just that they have seen

the

> > > discussions often, and assume others will respond. Not a lack of

> > > interest or caring, but just an assumption that someone else

will

> > > respond. Such topics as research, spasms vs. heartburn, doctor

> > > expertise or life after a myotomy come up often and so many

assume

> > > " someone " else will respond. For most things, reading through

old

> > posts

> > > brings up those same topics. Some topics remain hot for even

> > months,

> > > then fade out, such as spasm vs. heartburn. The general

conclusion

> > is

> > > that many gi's even well educated ones think they are heartburn.

> > Even

> > > with an achalasia diagnosis surgeons and gi's don't understand

our

> > > spasms. Even some well experienced surgeons think the spasms go

> > away

> > > after surgery. That isn't always the case.

> > >

> > > Sandy

> > >

> >

>

[Guest guest]

Francisco wrote:

> PPIs seemed to help me so it could be somehow acid related.

This will sound odd, but some people take vinegar to prevent acid

reflux. I am not sure how well it works, but here is the theory. There

are nerves that sense acid in the stomach and esophagus. It is believed

that acid signals the muscles of the LES to tighten which could help to

prevent acid reflux. However, if you have achalasia the nerves don't

work as well in the area of the body. What should be a clear signal to

tighten the LES could instead trigger a spasm. Taking PPIs could by

reducing acid possibly keep the signal from triggering a spasm.

notan

[Guest guest]

If that's the case then I've never had a spasm...just on fire

heartburn.

Jan

> > >

> > >

> > > Sometimes the " oldies " read constantly, but don't respond often

> > because

> > > they have seen cycles of questions and answers come through

often.

> > > Maybe when the newbies see not many oldies responding, they

think

> > it is

> > > something new. For some oldies it is just that they have seen

the

> > > discussions often, and assume others will respond. Not a lack of

> > > interest or caring, but just an assumption that someone else

will

> > > respond. Such topics as research, spasms vs. heartburn, doctor

> > > expertise or life after a myotomy come up often and so many

assume

> > > " someone " else will respond. For most things, reading through

old

> > posts

> > > brings up those same topics. Some topics remain hot for even

> > months,

> > > then fade out, such as spasm vs. heartburn. The general

conclusion

> > is

> > > that many gi's even well educated ones think they are heartburn.

> > Even

> > > with an achalasia diagnosis surgeons and gi's don't understand

our

> > > spasms. Even some well experienced surgeons think the spasms go

> > away

> > > after surgery. That isn't always the case.

> > >

> > > Sandy

> > >

> >

>

[Guest guest]

If the pain only started happening after the balloon, then it easily could be heartburn. You just have to be careful you aren't getting ulcers from the constant heartburn. Oh, I forgot this pain comparison... gentle spasms can feel similar to pain when you ovulate, but in a different area. If that gives you a reference point. For some, we can have that pain often and for hours, but not a big deal, associated with achalasia.

Sandy> > > >> > > >> > > > Sometimes the "oldies" read constantly, but don't respond often> > > because> > > > they have seen cycles of questions and answers come through > often.> > > > Maybe when the newbies see not many oldies responding, they > think> > > it is> > > > something new. For some oldies it is just that they have seen > the> > > > discussions often, and assume others will respond. Not a lack of> > > > interest or caring, but just an assumption that someone else > will> > > > respond. Such topics as research, spasms vs. heartburn, doctor> > > > expertise or life after a myotomy come up often and so many > assume> > > > "someone" else will respond. For most things, reading through > old> > > posts> > > > brings up those same topics. Some topics remain hot for even> > > months,> > > > then fade out, such as spasm vs. heartburn. The general > conclusion> > > is> > > > that many gi's even well educated ones think they are heartburn.> > > Even> > > > with an achalasia diagnosis surgeons and gi's don't understand > our> > > > spasms. Even some well experienced surgeons think the spasms go> > > away> > > > after surgery. That isn't always the case.> > > >> > > > Sandy> > > >> > >> >>