Re: Myotomy - the definitive treatment?

January 11, 2008

Francisco,

I’m sorry to hear that you have only just been diagnosed

after suffering for so long. I was first diagnosed when I was 24 and had

the surgery shortly thereafter, but this was over ten years ago. And

since achalasia is relatively rare, there haven’t been too many advances.

Sorry to say surgery is not a cure and last July, I had to have a 2nd

myotomy (this time with a dor fundoplication). I’m doing so much

better now!!

What you will find here is a family and wealth of information to

help you decide the best kind of procedure for you. Look through the data

files to jumpstart your research. Let us know what area of the country

you reside in, and we may be able to recommend an experienced doctor to help

you. And I do recommend that you find one that specializes in

Achalasia.

That’s why I needlessly suffered after my first surgery.

My surgeon was not up to date on the lasted treatments for achalasia and my

dysphagia returned shortly thereafter. I was kept in the dark about a lot

of things and without the help of the internet, I stopped seeing doctors.

Since then I’ve found this group and become an advocate for myself.

As for the treatments, surgery seems to have the best results

for younger patients. And since there is no cure and it has a tendency to

get worse, I believe that vigilance is necessary.

in SF

From:

achalasia [mailto:achalasia ] On Behalf Of frapimeti3

Sent: Friday, January 11, 2008 11:06 AM

achalasia

Subject: Myotomy - the definitive treatment?

Hello everyone

Just joined the group! It feels conforting to hear about similar

experiences going out there and also to know that there is life after

Achalasia!

A brief overview of my tale:

I am currently 24 years old and have been having symptoms for the

past 3 years. These started as very faint problems and developed to

the classic signs of achalasia that I have learned to recognize

(disphagia, regurgitation, chest pain and tightning feeling, the

coughing, the galons of water, the weight loss)...I have only

recently been diagnosed by doctors after a barium x-ray which showed

the classical " bird's beak " .

I have already had an attempt at a Manometry which turned to be too

difficult to do since I wasn't aware of the necessity of not

ingesting any solids on the previous day. The result was a lot of

regurgitation during the said exam. I'm hoping that my next attempt

will be successful since I already have surgery very much in my

sights (to be done within a month's time I hope).

My question for everyone out there is basically this: If done

properly is the surgery really the definitive treatment for

Achalasia?

At first my research indicated that reflux could be the only possible

drawback (10-15% possiblity at the most). However, after reading a

little more and especially after reading some of the posts here, it

seems that there are at least some cases where surgery itself is a

temporary solution or does not completely correct the problem. Is

this true? Is it because of the type of achalasia, the surgeon? Or is

there a luck factor involved?

I really want to get rid of this awful condition for good. Is surgery

the definitive solution for Achalasia?

Thanks,

Francisco

January 12, 2008

Hi. Well there is no cure for achalasia although my myotomy as helped

me live a very normal life. I also had 2 kids after my surgery. I

think that i had the " old school " myotomy. Dr. Richter said that they

did not cut the muscle as aggressively back then...and now i think

they do this surgery with a wrap now. I do not know much about this.

After my surgery I still had chest pains...but I barely ever had

heart burn..and now nearly 15 yrs later I have a 3 dialations..but

they improved my swallowing sooooo much. (I just had one Jan 8th)

I know what you mean about the manometery test. I have had 3 or 4.

That is such a grueling test for me. I throw up during the whole

thing. Usually saliva though on my first one food was still in my

stomach.

I am a huge supporter of the surgery. THis disease does need to be

maintained and checked on. You cannot simply just have the surgery

and then try to forget you have it. It is forever and for always

there.

Dawn in Ohio

>

> Hello everyone

>

> Just joined the group! It feels conforting to hear about similar

> experiences going out there and also to know that there is life

after

> Achalasia!

>

> A brief overview of my tale:

>

> I am currently 24 years old and have been having symptoms for the

> past 3 years. These started as very faint problems and developed to

> the classic signs of achalasia that I have learned to recognize

> (disphagia, regurgitation, chest pain and tightning feeling, the

> coughing, the galons of water, the weight loss)...I have only

> recently been diagnosed by doctors after a barium x-ray which

showed

> the classical " bird's beak " .

>

> I have already had an attempt at a Manometry which turned to be too

> difficult to do since I wasn't aware of the necessity of not

> ingesting any solids on the previous day. The result was a lot of

> regurgitation during the said exam. I'm hoping that my next attempt

> will be successful since I already have surgery very much in my

> sights (to be done within a month's time I hope).

>

> My question for everyone out there is basically this: If done

> properly is the surgery really the definitive treatment for

> Achalasia?

>

> At first my research indicated that reflux could be the only

possible

> drawback (10-15% possiblity at the most). However, after reading a

> little more and especially after reading some of the posts here, it

> seems that there are at least some cases where surgery itself is a

> temporary solution or does not completely correct the problem. Is

> this true? Is it because of the type of achalasia, the surgeon? Or

is

> there a luck factor involved?

>

> I really want to get rid of this awful condition for good. Is

surgery

> the definitive solution for Achalasia?

>

> Thanks,

> Francisco

>

January 14, 2008

Hi

Thanks for the reply! It was indeed difficult to get a proper

diagnosis until now since, for the best part of the 3 years that I

have been suffering from Achalasia the symptoms were mostly bearable

and not so obvious to identify.

Unfortunately giving you information on the area I live is probably

useless since I'm portuguese and working in Manchester, England area.

In spite of living here for a year I still feel more comfortable

going through a medical procedure in my home country so I'm looking

into finding specialists there now.

So as I understand it, your first surgery was not as good as it could

have been, but you have had the 2nd surgery over 10 years afterwards,

right? So how did you feel in between the surgeries? Did you require

dilations, when did the symptoms return?

Anyway, I suppose I have to accept the fact that treatment will

improve my quality of life for long periods of time but this will be

something that will stay with me throughout my life.

Thanks again for sharing your experience and information!

Francisco

>

> Francisco,

>

> I'm sorry to hear that you have only just been diagnosed after

suffering for

> so long. I was first diagnosed when I was 24 and had the surgery

shortly

> thereafter, but this was over ten years ago. And since achalasia is

> relatively rare, there haven't been too many advances. Sorry to say

surgery

> is not a cure and last July, I had to have a 2nd myotomy (this time

with a

> dor fundoplication). I'm doing so much better now!!

>

> What you will find here is a family and wealth of information to

help you

> decide the best kind of procedure for you. Look through the data

files to

> jumpstart your research. Let us know what area of the country you

reside

> in, and we may be able to recommend an experienced doctor to help

you. And

> I do recommend that you find one that specializes in Achalasia.

>

> That's why I needlessly suffered after my first surgery. My

surgeon was not

> up to date on the lasted treatments for achalasia and my dysphagia

returned

> shortly thereafter. I was kept in the dark about a lot of things

and

> without the help of the internet, I stopped seeing doctors. Since

then I've

> found this group and become an advocate for myself.

>

> As for the treatments, surgery seems to have the best results for

younger

> patients. And since there is no cure and it has a tendency to get

worse, I

> believe that vigilance is necessary.

>

> in SF

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of frapimeti3

> Sent: Friday, January 11, 2008 11:06 AM

> achalasia

> Subject: Myotomy - the definitive treatment?

>

> Hello everyone

>

> Just joined the group! It feels conforting to hear about similar

> experiences going out there and also to know that there is life

after

> Achalasia!

>

> A brief overview of my tale:

>

> I am currently 24 years old and have been having symptoms for the

> past 3 years. These started as very faint problems and developed to

> the classic signs of achalasia that I have learned to recognize

> (disphagia, regurgitation, chest pain and tightning feeling, the

> coughing, the galons of water, the weight loss)...I have only

> recently been diagnosed by doctors after a barium x-ray which

showed

> the classical " bird's beak " .

>

> I have already had an attempt at a Manometry which turned to be too

> difficult to do since I wasn't aware of the necessity of not

> ingesting any solids on the previous day. The result was a lot of

> regurgitation during the said exam. I'm hoping that my next attempt

> will be successful since I already have surgery very much in my

> sights (to be done within a month's time I hope).

>

> My question for everyone out there is basically this: If done

> properly is the surgery really the definitive treatment for

> Achalasia?

>

> At first my research indicated that reflux could be the only

possible

> drawback (10-15% possiblity at the most). However, after reading a

> little more and especially after reading some of the posts here, it

> seems that there are at least some cases where surgery itself is a

> temporary solution or does not completely correct the problem. Is

> this true? Is it because of the type of achalasia, the surgeon? Or

is

> there a luck factor involved?

>

> I really want to get rid of this awful condition for good. Is

surgery

> the definitive solution for Achalasia?

>

> Thanks,

> Francisco

>

January 14, 2008

Hi Dawn

Thanks for sharing your experience with Achalasia, its indeed very

good to hear from someone that's been tackling this decease for such

a long period of time and to know that it's possible to at least

minimize the problem.

I would of course like to go through surgery and do it right so that

I have the least amount of problems in the long term.

Any possible tips that you can give me for the manometry? The tip I

have from doctors is to be strictly on liquids the day before the

procedure but I'm afraid that I will still be regurgitating saliva

because of gag reflex...

I have been told by one doctor that dilations are a bit of a shot in

the dark in terms of how long they will last (how long have they

lasted for you?) and also that perforation from the stretching is a

real risk. Having done 3 dilations would you agree with those

statements?

Thanks again!

Francisco

> >

> > Hello everyone

> >

> > Just joined the group! It feels conforting to hear about similar

> > experiences going out there and also to know that there is life

> after

> > Achalasia!

> >

> > A brief overview of my tale:

> >

> > I am currently 24 years old and have been having symptoms for the

> > past 3 years. These started as very faint problems and developed

to

> > the classic signs of achalasia that I have learned to recognize

> > (disphagia, regurgitation, chest pain and tightning feeling, the

> > coughing, the galons of water, the weight loss)...I have only

> > recently been diagnosed by doctors after a barium x-ray which

> showed

> > the classical " bird's beak " .

> >

> > I have already had an attempt at a Manometry which turned to be

too

> > difficult to do since I wasn't aware of the necessity of not

> > ingesting any solids on the previous day. The result was a lot of

> > regurgitation during the said exam. I'm hoping that my next

attempt

> > will be successful since I already have surgery very much in my

> > sights (to be done within a month's time I hope).

> >

> > My question for everyone out there is basically this: If done

> > properly is the surgery really the definitive treatment for

> > Achalasia?

> >

> > At first my research indicated that reflux could be the only

> possible

> > drawback (10-15% possiblity at the most). However, after reading

a

> > little more and especially after reading some of the posts here,

it

> > seems that there are at least some cases where surgery itself is

a

> > temporary solution or does not completely correct the problem. Is

> > this true? Is it because of the type of achalasia, the surgeon?

Or

> is

> > there a luck factor involved?

> >

> > I really want to get rid of this awful condition for good. Is

> surgery

> > the definitive solution for Achalasia?

> >

> > Thanks,

> > Francisco

> >

>

January 14, 2008

Dear Fransisco,

Just read your post and thought it might help giving you a name of a surgeon in Madrid of who I've heard he handles at least half of all achalasia cases in Spain. I am talking about Dr. de Otega, who works at the Ramon y Cajal in Madrid. I haven't heard much about him, except for a post of another myotomy patient (on the German/Austrian board) who had surgery performed by him and who is absolutely satisfied with the outcome. Maybe this surgeon could be yours, or maybe he could help you with finding a surgeon in Portugal.

Must add that I don't know him personally and I've no other information on him than the info I just gave you. So please check further details yourself when you decide to contact him. Just thought it might make your search for a good and experienced surgeon a bit easier.

Good luck!

Isabella

Myotomy - the definitive treatment?> > > > Hello everyone> > Just joined the group! It feels conforting to hear

about similar > experiences going out there and also to know that there is life after > Achalasia!> > A brief overview of my tale:> > I am currently 24 years old and have been having symptoms for the > past 3 years. These started as very faint problems and developed to > the classic signs of achalasia that I have learned to recognize > (disphagia, regurgitation, chest pain and tightning feeling, the > coughing, the galons of water, the weight loss)...I have only > recently been diagnosed by doctors after a barium x-ray which showed > the classical "bird's beak". > > I have already had an attempt at a Manometry which turned to be too > difficult to do since I wasn't aware of the necessity of not > ingesting any solids on the previous day. The result was a lot of > regurgitation during the said exam. I'm hoping that my next

attempt > will be successful since I already have surgery very much in my > sights (to be done within a month's time I hope). > > My question for everyone out there is basically this: If done > properly is the surgery really the definitive treatment for > Achalasia? > > At first my research indicated that reflux could be the only possible > drawback (10-15% possiblity at the most). However, after reading a > little more and especially after reading some of the posts here, it > seems that there are at least some cases where surgery itself is a > temporary solution or does not completely correct the problem. Is > this true? Is it because of the type of achalasia, the surgeon? Or is > there a luck factor involved?> > I really want to get rid of this awful condition for good. Is surgery > the definitive solution for

Achalasia?> > Thanks,> Francisco>

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January 14, 2008

> > >

> > > Hello everyone

> > >

> > > Just joined the group! It feels conforting to hear about

similar

> > > experiences going out there and also to know that there is life

> > after

> > > Achalasia!

> > >

> > > A brief overview of my tale:

> > >

> > > I am currently 24 years old and have been having symptoms for

the

> > > past 3 years. These started as very faint problems and

developed

> to

> > > the classic signs of achalasia that I have learned to recognize

> > > (disphagia, regurgitation, chest pain and tightning feeling,

the

> > > coughing, the galons of water, the weight loss)...I have only

> > > recently been diagnosed by doctors after a barium x-ray which

> > showed

> > > the classical " bird's beak " .

> > >

> > > I have already had an attempt at a Manometry which turned to be

> too

> > > difficult to do since I wasn't aware of the necessity of not

> > > ingesting any solids on the previous day. The result was a lot

of

> > > regurgitation during the said exam. I'm hoping that my next

> attempt

> > > will be successful since I already have surgery very much in my

> > > sights (to be done within a month's time I hope).

> > >

> > > My question for everyone out there is basically this: If done

> > > properly is the surgery really the definitive treatment for

> > > Achalasia?

> > >

> > > At first my research indicated that reflux could be the only

> > possible

> > > drawback (10-15% possiblity at the most). However, after

reading

> a

> > > little more and especially after reading some of the posts

here,

> it

> > > seems that there are at least some cases where surgery itself

is

> a

> > > temporary solution or does not completely correct the problem.

Is

> > > this true? Is it because of the type of achalasia, the surgeon?

> Or

> > is

> > > there a luck factor involved?

> > >

> > > I really want to get rid of this awful condition for good. Is

> > surgery

> > > the definitive solution for Achalasia?

> > >

> > > Thanks,

> > > Francisco

> > >

> >

>

January 15, 2008

Hi Isabella

Thanks for the information, I will take into account! I have been

seen by several GIs in Portugal and the last two and most prominent

ones have point to Dr. Castelo (http://www.hbichacastelo.com/) he is

a Professor at the university of medicine in Lisbon and also head of

surgery at one of the main hospitals in Lisbon. That of course does

not necessarily mean that we would be the option for a Myotomy but

shows promise. I will definitely try to drop the name you mentioned

in the mix as well.

Thanks

Francisco

> >

> > Francisco,

> >

> > I'm sorry to hear that you have only just been diagnosed after

> suffering for

> > so long. I was first diagnosed when I was 24 and had the surgery

> shortly

> > thereafter, but this was over ten years ago. And since achalasia

is

> > relatively rare, there haven't been too many advances. Sorry to

say

> surgery

> > is not a cure and last July, I had to have a 2nd myotomy (this

time

> with a

> > dor fundoplication) . I'm doing so much better now!!

> >

> > What you will find here is a family and wealth of information to

> help you

> > decide the best kind of procedure for you. Look through the data

> files to

> > jumpstart your research. Let us know what area of the country you

> reside

> > in, and we may be able to recommend an experienced doctor to help

> you. And

> > I do recommend that you find one that specializes in Achalasia.

> >

> > That's why I needlessly suffered after my first surgery. My

> surgeon was not

> > up to date on the lasted treatments for achalasia and my

dysphagia

> returned

> > shortly thereafter. I was kept in the dark about a lot of things

> and

> > without the help of the internet, I stopped seeing doctors. Since

> then I've

> > found this group and become an advocate for myself.

> >

> > As for the treatments, surgery seems to have the best results for

> younger

> > patients. And since there is no cure and it has a tendency to get

> worse, I

> > believe that vigilance is necessary.

> >

> > in SF

> >

> > From: achalasia@grou ps.com [mailto:achalasia@grou

ps.com]

> On Behalf

> > Of frapimeti3

> > Sent: Friday, January 11, 2008 11:06 AM

> > achalasia@grou ps.com

> > Subject: Myotomy - the definitive treatment?

> >

> > Hello everyone

> >

> > Just joined the group! It feels conforting to hear about similar

> > experiences going out there and also to know that there is life

> after

> > Achalasia!

> >

> > A brief overview of my tale:

> >

> > I am currently 24 years old and have been having symptoms for the

> > past 3 years. These started as very faint problems and developed

to

> > the classic signs of achalasia that I have learned to recognize

> > (disphagia, regurgitation, chest pain and tightning feeling, the

> > coughing, the galons of water, the weight loss)...I have only

> > recently been diagnosed by doctors after a barium x-ray which

> showed

> > the classical " bird's beak " .

> >

> > I have already had an attempt at a Manometry which turned to be

too

> > difficult to do since I wasn't aware of the necessity of not

> > ingesting any solids on the previous day. The result was a lot of

> > regurgitation during the said exam. I'm hoping that my next

attempt

> > will be successful since I already have surgery very much in my

> > sights (to be done within a month's time I hope).

> >

> > My question for everyone out there is basically this: If done

> > properly is the surgery really the definitive treatment for

> > Achalasia?

> >

> > At first my research indicated that reflux could be the only

> possible

> > drawback (10-15% possiblity at the most). However, after reading

a

> > little more and especially after reading some of the posts here,

it

> > seems that there are at least some cases where surgery itself is

a

> > temporary solution or does not completely correct the problem. Is

> > this true? Is it because of the type of achalasia, the surgeon?

Or

> is

> > there a luck factor involved?

> >

> > I really want to get rid of this awful condition for good. Is

> surgery

> > the definitive solution for Achalasia?

> >

> > Thanks,

> > Francisco

> >

>

________________________________________________________________________________\

____

> Never miss a thing. Make your home page.

> http://www./r/hs

>

January 15, 2008

Well at first, I was able to maintain my weight. I thought

it was a battle of wills, and if I just kept trying maybe something would go

down. The first surgeon wasn’t helpful at all as to what to eat or

expect after the surgery. I was most successful with breakfast drinks, soups

and lots of caffeine for energy.

Then I started having serious trouble later in 1998, I was

pregnant. I struggled with every meal, until I move to soft foods. My

stomach would spasm and I wasn’t able to stop myself from vomiting. I saw

a GI and had a small dilation, just enough to allow me to eat soft foods.

All through the pregnancy, I was unable to maintain my weight. After, my general

practitioner put me on Nexium and Carafate which helped with the sore esophagus

and I was able to maintain my weight. I moved to California and had to stop

taking it 2004, didn’t have trouble again until 2005.

In 2006, I was taking 30mg of Prevacid 3x a day and had several dilations

with mixed results. In June for a peptic structure, then I gained about

25 pounds but then started having trouble 6 months later. In December, they

found another structure and a polyp. I never recovered after that. I

was in bed for about two months because I couldn’t eat and may have

developed pneumonia. Then I move onto liquids (such as yogurt smoothies, pudding,

ice cream, and Jello) and took chewable vitamin supplements. By March

2007, they wanted to remove my esophagus.

5 opinions and 4 months later, I opted for a 2nd

myotomy with a dor wrap. Dr. Campos thought that the first myotomy wasn’t

long enough into the stomach and the wrap was needed to help stop GERD and

peptic structures. Prior to surgery, I had another dilation just enough to

allow me to eat before surgery and regain some strength. Since the

surgery, I’ve been better than I have been in over 10 years. I eat

salads, breads, and meats. I’m too afraid to risk eating steak, yet.

Since I’m in the late stage of achalasia, and have developed

a large pocket in my esophagus, I need to be careful to clear it out before

lying down. I try not to eat after 7pm and drink lots of water until

bed. I find that things will move through with just a small drink. Some

nights I use a wedge but most nights I sleep with two pillows.

One of the hardest things too get used to was feeling of food

reach my stomach and through my intestines. I also had a dumping syndrome

after the last dilation until I learned to limit my liquids during a meal. Now

I just don’t have the problem.

I really didn’t take good care of myself before. Now

I know better and I try to keep up with my health issues. Also my surgeon

speaks Portuguese. I understand that there are a lot of studies written in

Portuguese because in Brazil there is a virus that causes pseudo achalasia.

Maybe he would be interested in helping you. Here is his Bio link: http://www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR & doctorid=28614

Best of luck!

in SF