RE: I can't decide between balloon dilation and myotomy... help!

[Guest guest]

Hi , Obviously I can not advise you, but I can share my experience. I initially tried the baloon dilatations. They were never really satisfactory and I think I had several more than I should have done. The surgery was never really offered me until 10 years later. I had the Myotomy laprascopically and was only in hospital over night. The results were excellent. The only food I couldn't really eat was Fish & Chips (I'm British:- what a drag that was). And I used to love thick chip sandwiches:-totally out of the question! Now, thirteen years after the surgery the problem has reoccured and I await to find out what my options are (I find out tomorrow), but the last thirteen years have been great and I know that was the right decision for me at that time. Ultimately you will make your own choice based on the

information that is made available to you. I understand that dilatations do cause scar tissue, this may be something that you want to discuss with your Dr before making the final choice. Good luck STEVEmommalay3 <lalay@...> wrote: My name is . I'm 37 and was diagnosed with Achalasia in February. I was referred to the Cleveland Clinic (I live in the Toledo area) and just came from my first appointment. The doctor said my two options are a balloon dilation and laparoscopic heller myotomy. My first reaction is fear of a possible tear with the balloon dilation needing a large open incision repair. Also, it seems that a good number of people who have the balloon dilation ultimately

end up needing the surgery anyway. I guess I'm leaning towards the surgery, but would appreciate any insight you can provide? Also, if I have the surgery at 37 - what do you do after that if it doesn't work or symptoms return later?Thanks so much.

Photos – NEW, now offering a quality print service from just 8p a photo.

[Guest guest]

I had 1 or 2 dilitations before opting for surgery. The dilitation

did not work for me and I continued to lose weight. Liquids and

solids didn't go down and the ongoing regurgitating was too much for

my body to take. I got an open heller at the Cleveland clinic in

sept of '93. It was a complete success although I have had

dilitations since. The pneumatic dilitation proved to be the best

way for me to go since the surgery. That was about 4 1/2 years ago

and I am doing really awesome. You can email me privately if you

would like.

Dawn in oHIo

>

> My name is . I'm 37 and was diagnosed with Achalasia in

> February. I was referred to the Cleveland Clinic (I live in the

> Toledo area) and just came from my first appointment. The doctor

> said my two options are a balloon dilation and laparoscopic heller

> myotomy. My first reaction is fear of a possible tear with the

> balloon dilation needing a large open incision repair. Also, it

> seems that a good number of people who have the balloon dilation

> ultimately end up needing the surgery anyway. I guess I'm leaning

> towards the surgery, but would appreciate any insight you can

> provide? Also, if I have the surgery at 37 - what do you do after

> that if it doesn't work or symptoms return later?

>

> Thanks so much.

>

[Guest guest]

--Hi ,

I was diagnosed in July 05 and had a dilation the nest day. This gave

me instant relief and could swallow food and drink. I couldn't at all

the week before that. It only lasted 2 weeks and symptoms began to

slowly go down hill after that. I had a myotomy Oct 2005 and am doing

much better. I have no regrets, I could not go on living with the

symtoms as bad a s they were. Fear is hard to deal with when we first

get diagnosed, we all go through the same thoughts you are now. Once

you can accept that this surgery will not cure it but make life

better for you, it is a little easier. We all hope that the surgery

is a long term prospect, which it is for many.

You need to try what is right for you, we will all be here to support

you, you are not alone here.

I hope you have someone close to you to help you through this too.

All the best

- In achalasia , " mommalay3 " <lalay@...> wrote:

>

> My name is . I'm 37 and was diagnosed with Achalasia in

> February. I was referred to the Cleveland Clinic (I live in the

> Toledo area) and just came from my first appointment. The doctor

> said my two options are a balloon dilation and laparoscopic heller

> myotomy. My first reaction is fear of a possible tear with the

> balloon dilation needing a large open incision repair. Also, it

> seems that a good number of people who have the balloon dilation

> ultimately end up needing the surgery anyway. I guess I'm leaning

> towards the surgery, but would appreciate any insight you can

> provide? Also, if I have the surgery at 37 - what do you do after

> that if it doesn't work or symptoms return later?

>

> Thanks so much.

>

[Guest guest]

Hi ,

I'm 26 and have had A for 6 years. I'm actually traveling to the

Cleveland Clinic for my heller myotomy surgery on May 10th, 2006. I'm

from Boston, MA. I've had two botox injections and two balloon

dilations. I wish I had gone straight to the surgery. Others on this

site who have had the surgery can share more about what happens when

repeat surgerie's need to be done.

Take Care,

Aileen

>

> My name is . I'm 37 and was diagnosed with Achalasia in

> February. I was referred to the Cleveland Clinic (I live in the

> Toledo area) and just came from my first appointment. The doctor

> said my two options are a balloon dilation and laparoscopic heller

> myotomy. My first reaction is fear of a possible tear with the

> balloon dilation needing a large open incision repair. Also, it

> seems that a good number of people who have the balloon dilation

> ultimately end up needing the surgery anyway. I guess I'm leaning

> towards the surgery, but would appreciate any insight you can

> provide? Also, if I have the surgery at 37 - what do you do after

> that if it doesn't work or symptoms return later?

>

> Thanks so much.

>

[Guest guest]

, welcome to the group. I know you have a lot of questions about what you should do and what is the best approach. First take a good look over the site and if you can read some of the old posts. There is a lot of information there for you.

I have had several dilation's some of them with botox. Looking back I should have gone with the surgery first. I would recommend the surgery unless there is other indications that surgery is not the best option for you. My first surgery was done lapro and I out of the hospital in about four days. I had a second surgery about two years after my first one. That surgery was done open and I was only in hospital for 5 days. I think that all the dilation's I had prior to my first surgery hindered the success of that surgery and leading to the second surgery.

In the end you need to make a decision that you feel is best for you. Ask as many questions as you can and get as much information as you can to help you in your decision.

Once again welcome to our family and I hope you are doing as well as can be right now.

in Suffolk

In a message dated 4/6/2006 9:20:37 PM GMT Standard Time, lalay@... writes:

My name is . I'm 37 and was diagnosed with Achalasia in February. I was referred to the Cleveland Clinic (I live in the Toledo area) and just came from my first appointment. The doctor said my two options are a balloon dilation and laparoscopic heller myotomy. My first reaction is fear of a possible tear with the balloon dilation needing a large open incision repair. Also, it seems that a good number of people who have the balloon dilation ultimately end up needing the surgery anyway. I guess I'm leaning towards the surgery, but would appreciate any insight you can provide? Also, if I have the surgery at 37 - what do you do after that if it doesn't work or symptoms return later?Thanks so much.

[Guest guest]

About the choice... There are people here who have had long term success w/ a dialation. But seems like many who post here eventually have surgery.

I had a dialation, then had a myotomy about 1.5 years later. There were a few days after my barium swallow, before the myotomy, when there was a possibility I had a pouch, possibly from waiting too long before going back for surgery. I sure kicked myself. Turns out it wasn't a pouch. My surgeon was cool about it, just said if it was, then surgery would be a little more complicated. But I could tell he was relieved there wasn't a pouch. It looked like a pouch, I think, because I may have vigorous achalasia, where the esophagus is constantly moving in spasms. (That is my simplified version.)

For those few days I was really disgusted with myself because I knew I needed surgery and had been putting it off until I couldn't live with it anymore.

I had the surgery and eat everything, and it has been about 2 years.

My gi, Dr. Ippoliti when I had the dialation in 2002 (I think) thought there was a good chance the dialation could last. Since then he recommends patients go direct to surgery based on his experience and longer term results.

As I see it, the consideration in getting a dialation first is that they do often lead to surgery eventually and we put it off, thus doing damage to our esophagus. As a metaphor, maybe an esophagus is similar to a uterus? After stretching out a few times I've heard the uterus just doesn't get back to the same size, our tummies sure don't. Not sure that is just my impression, but women who have had more babies can have more issues later.

Seems like the earlier people are treated and the less stretched the esophagus, the better the outcome, whether it is a dialation or surgery. If a person is young I'd especially suggest being very proactive in doing anything, whether dialation or surgery to keep food from backing up into the esophagus and stretching it. If you have trouble after surgery now, if a wrap is too tight, it seems beneficial to deal with it now instead of later.

If you have a dialation, and it starts to fail, don't wait until you are at 20% of normal to get more treatment. If food is backing up and you are regurgitating, I'd suggest going back to your doctors or seeking new ones. Don't give up. At least discuss with them the danger you might be doing to yourself by waiting. ly, it doesn't ever get better... you may be able to eat more, but seems like people who try that eventually come back saying their esophagus is all stretched out and the procedures are less likely to be as successful. They have also gotten older and may have other health issues that make surgery less attractive.

That is my impression after several years on this board, certainly not a scientific study. Also it is important to realize people who are successful with their first procedure aren't likely to come back here and report.

It also seems to me that if a procedure isn't going to be successful long term that people start having difficulty right away, even before 6 months. They seem to be the 10 or 20% that are just really harder to treat.

About alternative medicine. I didn't happen to grow up where alternative medical practices were common, except mustard plasters and alcohol being worth a try for anything before going to the doctor. I have had luck with bio feedback and yoga for some things since. I haven't tried acupuncture or the herbs... just so you know my background.... so I'm probably less expectant of alternatives being successful long term. Over the years, I can't remember anyone having more than relaxation type results with these alternatives. Doesn't mean it doesn't happen. My impression is that many have tried, few have succeeded beyond relaxation and acceptance of the disease over the long term. If any have been successful in stopping achalasia I can't remember any of them. Again, that doesn't mean it didn't happen and I also think there are short term benefits to alternative treatments, so please don't jump on me about how I'm against them, I'd just like to hear of some real success stories.

So if I may suggest, if you do try these methods, that you monitor your esophagus every 6 months or so with a barium swallow. If your methods are successful, it would be wonderful to hear about it (and I do mean that with a hopeful heart) but at the same time to be cautious with your own condition and don't let your esophagus stretch out. Achalasia can fool you, eating can become easier, but there can be more damage, making treatment less likely to be successful. It is easy to delay treatment, but my advice is that "a stitch in time saves nine."

Sandy in So Cal... Guess Uteruses were on my mind, ran into an old neighbor who keeps in contact with another old neighbor. They are having triplets after some fertility treatments where they put in 2 eggs. One divided, making identical twin girls and the other one is a boy. They just adopted a baby a year ago. The expectant Mom is 43. We were glad it wasn't us, although my friend would like another child. So they will have 4 kids at once in diapers. YIKES! That might even be too much for Cindi? I'm thrilled for them as they wanted kids desperately even before we had ours, but triplets and another one at home? That is a real handful. I kind of laugh a little because through the years of not having kids, they were slightly image conscious etc. That will change you think? They'll have to give up the 2 door cars and get the mini van, where things fall out when you open the doors. Would you ever get any sleep?

> >> > My name is . I'm 37 and was diagnosed with Achalasia in > > February. I was referred to the Cleveland Clinic (I live in the > > Toledo area) and just came from my first appointment. The doctor > > said my two options are a balloon dilation and laparoscopic heller > > myotomy. My first reaction is fear of a possible tear with the > > balloon dilation needing a large open incision repair. Also, it > > seems that a good number of people who have the balloon dilation > > ultimately end up needing the surgery anyway. I guess I'm leaning > > towards the surgery, but would appreciate any insight you can > > provide? Also, if I have the surgery at 37 - what do you do after > > that if it doesn't work or symptoms return later?> > > > Thanks so much.> >>

[Guest guest]

Steve,

Thanks for your insight. It has helped just hearing from others with this disorder.

I hope that you get some good options when you go to the Dr.

From: achalasia [mailto:achalasia ] On Behalf Of Steve LennoxSent: Thursday, April 06, 2006 4:33 PMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

Hi ,

Obviously I can not advise you, but I can share my experience. I initially tried the baloon dilatations. They were never really satisfactory and I think I had several more than I should have done. The surgery was never really offered me until 10 years later. I had the Myotomy laprascopically and was only in hospital over night. The results were excellent. The only food I couldn't really eat was Fish & Chips (I'm British:- what a drag that was). And I used to love thick chip sandwiches:-totally out of the question!

Now, thirteen years after the surgery the problem has reoccured and I await to find out what my options are (I find out tomorrow), but the last thirteen years have been great and I know that was the right decision for me at that time.

Ultimately you will make your own choice based on the information that is made available to you. I understand that dilatations do cause scar tissue, this may be something that you want to discuss with your Dr before making the final choice.

Good luck

STEVEmommalay3 <lalay@...> wrote:

My name is . I'm 37 and was diagnosed with Achalasia in February. I was referred to the Cleveland Clinic (I live in the Toledo area) and just came from my first appointment. The doctor said my two options are a balloon dilation and laparoscopic heller myotomy. My first reaction is fear of a possible tear with the balloon dilation needing a large open incision repair. Also, it seems that a good number of people who have the balloon dilation ultimately end up needing the surgery anyway. I guess I'm leaning towards the surgery, but would appreciate any insight you can provide? Also, if I have the surgery at 37 - what do you do after that if it doesn't work or symptoms return later?Thanks so much.

Photos – NEW, now offering a quality print service from just 8p a photo.

[Guest guest]

,

Thanks for the reply. All of the responses have been helpful. It's good to know I'm not alone in all this. My husband and kids have been great - but they don't really understand how difficult it can be, especially the kids as they are just too young.

From: achalasia [mailto:achalasia ] On Behalf Of ykosworksSent: Thursday, April 06, 2006 5:27 PMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

--Hi ,I was diagnosed in July 05 and had a dilation the nest day. This gave me instant relief and could swallow food and drink. I couldn't at all the week before that. It only lasted 2 weeks and symptoms began to slowly go down hill after that. I had a myotomy Oct 2005 and am doing much better. I have no regrets, I could not go on living with the symtoms as bad a s they were. Fear is hard to deal with when we first get diagnosed, we all go through the same thoughts you are now. Once you can accept that this surgery will not cure it but make life better for you, it is a little easier. We all hope that the surgery is a long term prospect, which it is for many.You need to try what is right for you, we will all be here to support you, you are not alone here.I hope you have someone close to you to help you through this too.All the best- In achalasia , "mommalay3" <lalay@...> wrote:>> My name is . I'm 37 and was diagnosed with Achalasia in > February. I was referred to the Cleveland Clinic (I live in the > Toledo area) and just came from my first appointment. The doctor > said my two options are a balloon dilation and laparoscopic heller > myotomy. My first reaction is fear of a possible tear with the > balloon dilation needing a large open incision repair. Also, it > seems that a good number of people who have the balloon dilation > ultimately end up needing the surgery anyway. I guess I'm leaning > towards the surgery, but would appreciate any insight you can > provide? Also, if I have the surgery at 37 - what do you do after > that if it doesn't work or symptoms return later?> > Thanks so much.>

[Guest guest]

My name is Vinnie and I am 36. I was diagnosed with A

in January and had the lap myotomy with toupet wrap in

Frbruary. I was out of the hospital the next day and

I was able to eat immediately. Within 5 days I was

pretty much eating anything. I still have some minor

swallowing issues, and I think someday I may need a

dilation or a second surgery, but without this initial

surgery I would have been worse off. I was losing 10

pounds a week (80 in 3 months). Since the surgery I

put on 20 pounds and eat anything I want. Some things

give me a little problem but everything goes down.

The recovery from surgery was not bad for me (I think

because I was young). Lots of diareha for a week (was

concerned but it went away), not much pain, just a

little uncomfortable for a week. It ttok me 2 weeks

to fully get my energy back. Never took anything

stronger than Tylenol PM for the pain. GET THE

SURGERY!!!!!!! Will things be perfect

afterwards---NO, but it will let you live again. You

will always worry about it getting worse, but you need

to live in the now. If it gets bad later I will deal

with it then. Hope this helps.

Vinnie

--- aileenmonroe <axbarbet@...> wrote:

> Hi ,

> I'm 26 and have had A for 6 years. I'm actually

> traveling to the

> Cleveland Clinic for my heller myotomy surgery on

> May 10th, 2006. I'm

> from Boston, MA. I've had two botox injections and

> two balloon

> dilations. I wish I had gone straight to the

> surgery. Others on this

> site who have had the surgery can share more about

> what happens when

> repeat surgerie's need to be done.

> Take Care,

> Aileen

>

>

>

> >

> > My name is . I'm 37 and was diagnosed with

> Achalasia in

> > February. I was referred to the Cleveland Clinic

> (I live in the

> > Toledo area) and just came from my first

> appointment. The doctor

> > said my two options are a balloon dilation and

> laparoscopic heller

> > myotomy. My first reaction is fear of a possible

> tear with the

> > balloon dilation needing a large open incision

> repair. Also, it

> > seems that a good number of people who have the

> balloon dilation

> > ultimately end up needing the surgery anyway. I

> guess I'm leaning

> > towards the surgery, but would appreciate any

> insight you can

> > provide? Also, if I have the surgery at 37 - what

> do you do after

> > that if it doesn't work or symptoms return later?

> >

> > Thanks so much.

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear ,

Welcome to the Group. Obviously you are the only one who can make that decision, but my advice is to go straight for the myotomy. When I went for my consultation I was described the three alternative treatments and the Doctor actually said to me that if he was the patient he would choose the myotomy.

It's likely that you will have to have a follow up dilation at some point after the op because of scar tissue forming.

Please keep in touch and let us know what you decide. You will find lots of support on this Board, both medically and emotionally.

Best Wishes from Ann in England.>> My name is . I'm 37 and was diagnosed with Achalasia in > February. I was referred to the Cleveland Clinic (I live in the > Toledo area) and just came from my first appointment. The doctor > said my two options are a balloon dilation and laparoscopic heller > myotomy. My first reaction is fear of a possible tear with the > balloon dilation needing a large open incision repair. Also, it > seems that a good number of people who have the balloon dilation > ultimately end up needing the surgery anyway. I guess I'm leaning > towards the surgery, but would appreciate any insight you can > provide? Also, if I have the surgery at 37 - what do you do after > that if it doesn't work or symptoms return later?> > Thanks so much.>

[Guest guest]

Aileen,

Good luck on your surgery! I'll keep you in my thoughts and prayers.

I think I am leaning towards the surgery, but have not yet been able to speak to the surgeon. How long did it take them to get you scheduled? Also, can you tell me the name of the surgeon - I forgot to ask? How comfortable were you with his/her pre-surgery consultation and information? How long did they say you'd likely be in the hospital and then off work (if you work).

Sorry for all of the questions, but I always seem to have more questions after I leave the doctor's office!

Thanks,

[mailto:achalasia ] On Behalf Of aileenmonroeSent: Thursday, April 06, 2006 8:10 PMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

Hi ,I'm 26 and have had A for 6 years. I'm actually traveling to the Cleveland Clinic for my heller myotomy surgery on May 10th, 2006. I'm from Boston, MA. I've had two botox injections and two balloon dilations. I wish I had gone straight to the surgery. Others on this site who have had the surgery can share more about what happens when repeat surgerie's need to be done.Take Care,Aileen>> My name is . I'm 37 and was diagnosed with Achalasia in > February. I was referred to the Cleveland Clinic (I live in the > Toledo area) and just came from my first appointment. The doctor > said my two options are a balloon dilation and laparoscopic heller > myotomy. My first reaction is fear of a possible tear with the > balloon dilation needing a large open incision repair. Also, it > seems that a good number of people who have the balloon dilation > ultimately end up needing the surgery anyway. I guess I'm leaning > towards the surgery, but would appreciate any insight you can > provide? Also, if I have the surgery at 37 - what do you do after > that if it doesn't work or symptoms return later?> > Thanks so much.>

[Guest guest]

Sandy,

I had not really thought about the possibility of damaging my esophagus further by putting off surgery. That is a very valid point. It sure does seem that everything is pointing to just going ahead with the surgery now.

Thanks so much!

From: achalasia [mailto:achalasia ] On Behalf Of toomuchclutterSent: Friday, April 07, 2006 1:43 AMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

About the choice... There are people here who have had long term success w/ a dialation. But seems like many who post here eventually have surgery.

I had a dialation, then had a myotomy about 1.5 years later. There were a few days after my barium swallow, before the myotomy, when there was a possibility I had a pouch, possibly from waiting too long before going back for surgery. I sure kicked myself. Turns out it wasn't a pouch. My surgeon was cool about it, just said if it was, then surgery would be a little more complicated. But I could tell he was relieved there wasn't a pouch. It looked like a pouch, I think, because I may have vigorous achalasia, where the esophagus is constantly moving in spasms. (That is my simplified version.)

For those few days I was really disgusted with myself because I knew I needed surgery and had been putting it off until I couldn't live with it anymore.

I had the surgery and eat everything, and it has been about 2 years.

My gi, Dr. Ippoliti when I had the dialation in 2002 (I think) thought there was a good chance the dialation could last. Since then he recommends patients go direct to surgery based on his experience and longer term results.

As I see it, the consideration in getting a dialation first is that they do often lead to surgery eventually and we put it off, thus doing damage to our esophagus. As a metaphor, maybe an esophagus is similar to a uterus? After stretching out a few times I've heard the uterus just doesn't get back to the same size, our tummies sure don't. Not sure that is just my impression, but women who have had more babies can have more issues later.

Seems like the earlier people are treated and the less stretched the esophagus, the better the outcome, whether it is a dialation or surgery. If a person is young I'd especially suggest being very proactive in doing anything, whether dialation or surgery to keep food from backing up into the esophagus and stretching it. If you have trouble after surgery now, if a wrap is too tight, it seems beneficial to deal with it now instead of later.

If you have a dialation, and it starts to fail, don't wait until you are at 20% of normal to get more treatment. If food is backing up and you are regurgitating, I'd suggest going back to your doctors or seeking new ones. Don't give up. At least discuss with them the danger you might be doing to yourself by waiting. ly, it doesn't ever get better... you may be able to eat more, but seems like people who try that eventually come back saying their esophagus is all stretched out and the procedures are less likely to be as successful. They have also gotten older and may have other health issues that make surgery less attractive.

That is my impression after several years on this board, certainly not a scientific study. Also it is important to realize people who are successful with their first procedure aren't likely to come back here and report.

It also seems to me that if a procedure isn't going to be successful long term that people start having difficulty right away, even before 6 months. They seem to be the 10 or 20% that are just really harder to treat.

About alternative medicine. I didn't happen to grow up where alternative medical practices were common, except mustard plasters and alcohol being worth a try for anything before going to the doctor. I have had luck with bio feedback and yoga for some things since. I haven't tried acupuncture or the herbs... just so you know my background.... so I'm probably less expectant of alternatives being successful long term. Over the years, I can't remember anyone having more than relaxation type results with these alternatives. Doesn't mean it doesn't happen. My impression is that many have tried, few have succeeded beyond relaxation and acceptance of the disease over the long term. If any have been successful in stopping achalasia I can't remember any of them. Again, that doesn't mean it didn't happen and I also think there are short term benefits to alternative treatments, so please don't ! jump on me about how I'm against them, I'd just like to hear of some real success stories.

So if I may suggest, if you do try these methods, that you monitor your esophagus every 6 months or so with a barium swallow. If your methods are successful, it would be wonderful to hear about it (and I do mean that with a hopeful heart) but at the same time to be cautious with your own condition and don't let your esophagus stretch out. Achalasia can fool you, eating can become easier, but there can be more damage, making treatment less likely to be successful. It is easy to delay treatment, but my advice is that "a stitch in time saves nine."

Sandy in So Cal... Guess Uteruses were on my mind, ran into an old neighbor who keeps in contact with another old neighbor. They are having triplets after some fertility treatments where they put in 2 eggs. One divided, making identical twin girls and the other one is a boy. They just adopted a baby a year ago. The expectant Mom is 43. We were glad it wasn't us, although my friend would like another child. So they will have 4 kids at once in diapers. YIKES! That might even be too much for Cindi? I'm thrilled for them as they wanted kids desperately even before we had ours, but triplets and another one at home? That is a real handful. I kind of laugh a little because through the years of not having kids, they were slightly image conscious etc. That will change you think? They'll have to give up the 2 door cars and get the mini van, where things fall out ! when you open the doors. Would you ever get any sleep?

> >> > My name is . I'm 37 and was diagnosed with Achalasia in > > February. I was referred to the Cleveland Clinic (I live in the > > Toledo area) and just came from my first appointment. The doctor > > said my two options are a bal! loon dilation and laparoscopic heller > > myotomy. My first reaction is fear of a possible tear with the > > balloon dilation needing a large open incision repair. Also, it > > seems that a good number of people who have the balloon dilation > > ultimately end up needing the surgery anyway. I guess I'm leaning > > towards the surgery, but would appreciate any insight you can > > provide? Also, if I have the surgery at 37 - what do you do after > > that if it doesn't work or symptoms return later?> > > > Thanks so much.> >>

[Guest guest]

,

I have been asking a ton of questions... and always then seem to come up with more.

Too bad it won't all just go away.

I appreciate your (and all of the other responders) willingness to share your experience.

Thanks,

From: achalasia [mailto:achalasia ] On Behalf Of muellmeris@...Sent: Friday, April 07, 2006 2:29 AMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

, welcome to the group. I know you have a lot of questions about what you should do and what is the best approach. First take a good look over the site and if you can read some of the old posts. There is a lot of information there for you.

I have had several dilation's some of them with botox. Looking back I should have gone with the surgery first. I would recommend the surgery unless there is other indications that surgery is not the best option for you. My first surgery was done lapro and I out of the hospital in about four days. I had a second surgery about two years after my first one. That surgery was done open and I was only in hospital for 5 days. I think that all the dilation's I had prior to my first surgery hindered the success of that surgery and leading to the second surgery.

In the end you need to make a decision that you feel is best for you. Ask as many questions as you can and get as much information as you can to help you in your decision.

Once again welcome to our family and I hope you are doing as well as can be right now.

in Suffolk

In a message dated 4/6/2006 9:20:37 PM GMT Standard Time, lalay@... writes:

My name is . I'm 37 and was diagnosed with Achalasia in February. I was referred to the Cleveland Clinic (I live in the Toledo area) and just came from my first appointment. The doctor said my two options are a balloon dilation and laparoscopic heller myotomy. My first reaction is fear of a possible tear with the balloon dilation needing a large open incision repair. Also, it seems that a good number of people who have the balloon dilation ultimately end up needing the surgery anyway. I guess I'm leaning towards the surgery, but would appreciate any insight you can provide? Also, if I have the surgery at 37 - what do you do after that if it doesn't work or symptoms return later?Thanks so much.

[Guest guest]

Vinnie,

Thanks for your reply. How long were you having symptoms before your diagnosis?

I really can't remember swallowing problems until maybe 6 - 8 months ago. I did have very sharp chest pains for several years before that though. My doctor said that I must have been having swallowing issues even then, but I truly don't remember anything. Even now, it is hard to eat and swallow - it takes me a very long time, requires tiny bites, and I have to stop before my food is gone - but I can still eat. I have only thrown up once every couple of weeks or so. I suppose that I should move forward with the surgery now so that I don't get to the more extreme vomiting and eating problems I've heard about from this group. Hopefully, anyway. It all sounds quite scary.

From: achalasia [mailto:achalasia ] On Behalf Of vincent murraySent: Friday, April 07, 2006 9:03 AMachalasia Subject: Re: Re: I can't decide between balloon dilation and myotomy... help!

My name is Vinnie and I am 36. I was diagnosed with Ain January and had the lap myotomy with toupet wrap inFrbruary. I was out of the hospital the next day andI was able to eat immediately. Within 5 days I waspretty much eating anything. I still have some minorswallowing issues, and I think someday I may need adilation or a second surgery, but without this initialsurgery I would have been worse off. I was losing 10pounds a week (80 in 3 months). Since the surgery Iput on 20 pounds and eat anything I want. Some thingsgive me a little problem but everything goes down. The recovery from surgery was not bad for me (I thinkbecause I was young). Lots of diareha for a week (wasconcerned but it went away), not much pain, just alittle uncomfortable for a week. It ttok me 2 weeksto fully get my energy back. Never took anythingstronger than Tylenol PM for the pain. GET THESURGERY!!!!!!! Will things be perfectafterwards---NO, but it will let you live again. Youwill always worry about it getting worse, but you needto live in the now. If it gets bad later I will dealwith it then. Hope this helps.Vinnie--- aileenmonroe <axbarbet@...> wrote:> Hi ,> I'm 26 and have had A for 6 years. I'm actually> traveling to the > Cleveland Clinic for my heller myotomy surgery on> May 10th, 2006. I'm > from Boston, MA. I've had two botox injections and> two balloon > dilations. I wish I had gone straight to the> surgery. Others on this > site who have had the surgery can share more about> what happens when > repeat surgerie's need to be done.> Take Care,> Aileen> > > > >> > My name is . I'm 37 and was diagnosed with> Achalasia in > > February. I was referred to the Cleveland Clinic> (I live in the > > Toledo area) and just came from my first> appointment. The doctor > > said my two options are a balloon dilation and> laparoscopic heller > > myotomy. My first reaction is fear of a possible> tear with the > > balloon dilation needing a large open incision> repair. Also, it > > seems that a good number of people who have the> balloon dilation > > ultimately end up needing the surgery anyway. I> guess I'm leaning > > towards the surgery, but would appreciate any> insight you can > > provide? Also, if I have the surgery at 37 - what> do you do after > > that if it doesn't work or symptoms return later?> > > > Thanks so much.> >> > > > > > __________________________________________________

[Guest guest]

Ann,

Thanks. I'm impressed that your doctor actually recommended one over the other. I couldn't get mine to commit - both are viable options...

I haven't yet heard from anyone who says to go with the balloon first. My leaning was already towards the surgery - not that anyone ever wants to have to have surgery - but if most of us end up there anyway - why delay?

I'll be sure to let the group know what I decide.

From: achalasia [mailto:achalasia ] On Behalf Of AnnSent: Friday, April 07, 2006 9:05 AMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

Dear ,

Welcome to the Group. Obviously you are the only one who can make that decision, but my advice is to go straight for the myotomy. When I went for my consultation I was described the three alternative treatments and the Doctor actually said to me that if he was the patient he would choose the myotomy.

It's likely that you will have to have a follow up dilation at some point after the op because of scar tissue forming.

Please keep in touch and let us know what you decide. You will find lots of support on this Board, both medically and emotionally.

Best Wishes from Ann in England.>> My name is . I'm 37 and was diagnosed with Achalasia in > February. I was referred to the Cleveland Clinic (I live in the > Toledo area) and just came from my first appointment. The doctor > said my two options are a balloon dilation and laparoscopic heller > myotomy. My first reaction is fear of a possible tear with the > balloon dilation needing a large open incision repair. Also, it > seems that a good number of people who have the balloon dilation > ultimately end up needing the surgery anyway. I guess I'm leaning > towards the surgery, but would appreciate any insight you can > provide? Also, if I have the surgery at 37 - what do you do after > that if it doesn't work or symptoms return later?> > Thanks so much.>

[Guest guest]

Any time. Try nad write all your questions down that way you will not forget to ask them. If you have any more questions to ask us please feel free to do so. If you wnat ot talk to me on the side you may do that as well. I have had this disease for over 10 years now.

in Suffolk

In a message dated 4/7/2006 6:59:35 PM GMT Standard Time, lalay@... writes:

,

I have been asking a ton of questions... and always then seem to come up with more.

Too bad it won't all just go away.

I appreciate your (and all of the other responders) willingness to share your experience.

Thanks,

From: achalasia [mailto:achalasia ] On Behalf Of muellmeris@...Sent: Friday, April 07, 2006 2:29 AMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

, welcome to the group. I know you have a lot of questions about what you should do and what is the best approach. First take a good look over the site and if you can read some of the old posts. There is a lot of information there for you.

I have had several dilation's some of them with botox. Looking back I should have gone with the surgery first. I would recommend the surgery unless there is other indications that surgery is not the best option for you. My first surgery was done lapro and I out of the hospital in about four days. I had a second surgery about two years after my first one. That surgery was done open and I was only in hospital for 5 days. I think that all the dilation's I had prior to my first surgery hindered the success of that surgery and leading to the second surgery.

In the end you need to make a decision that you feel is best for you. Ask as many questions as you can and get as much information as you can to help you in your decision.

Once again welcome to our family and I hope you are doing as well as can be right now.

in Suffolk

In a message dated 4/6/2006 9:20:37 PM GMT Standard Time, lalay@... writes:

My name is . I'm 37 and was diagnosed with Achalasia in February. I was referred to the Cleveland Clinic (I live in the Toledo area) and just came from my first appointment. The doctor said my two options are a balloon dilation and laparoscopic heller myotomy. My first reaction is fear of a possible tear with the balloon dilation needing a large open incision repair. Also, it seems that a good number of people who have the balloon dilation ultimately end up needing the surgery anyway. I guess I'm leaning towards the surgery, but would appreciate any insight you can provide? Also, if I have the surgery at 37 - what do you do after that if it doesn't work or symptoms return later?Thanks so much.

[Guest guest]

, first of all, it was very scary. But it all

works out fine. I had my first symptoms last May.

Had some very minor swallowing problems and bad chest

pains that I thought was heartburn. It could have

been heartburn? I figured it was bad reflux and

prilosec seemed to clear it up. In August it got real

bad. I had bad pain and could relly eat or drink very

little. Again, I took Prilosec and it cleared up.

Looking back now I think that the Prilosec had nothing

to do with me feeling better. I think the Achalasia

just relaxed. I was pretty much ok until November.

This is where it went downhill in a hurry. I could

not eat or drink anything until the surgery in

February. I lost 85 pounds in that time. Had to

resort to yogurt with suppliments as the only thing I

ate. I do not look at the food comming back up as

throwing up. I would eat, it would stay down in my

esophogus, and I would physically be able to bring it

back up. There were many times I ate a lot just to

feel normal. All of that food that went down ( not to

the stomach), I brought back up. I had red cups with

regurgitated food in them all over the kitchen. I

never want to see a red cup again. I only remember

violently throwing up 2 times. Nights were not too

bad for me because I made sure that everything was

already out of me before I slept. Some water would

come up at night but it was not to bad. With all of

this weight loss and food comming up and not getting

any liquids or nutrients, I was a disaster. I had no

energy ( the suppliments in yogurt helped a lot. The

yogurt would just slide down my throat. Probably

60-70 % of the yogurt went down ) , I was very

dehydrated. Until the week before the surgery I was

somehow still at work. I was really disconnected and

just going through the motions. I got diagnosed this

January with Achalasia. It seemed like the whole

process took forever with the doctors, but after a

couple of barium swallows, an endscopy, and the

pressure measurments in my esophogus, they decided on

surgery. Like I told you before all is fine now. I

would reccomend the surgery to everyone. This disease

takes a toll on every part of your life. The surgery

is scary, but when it was over I laughed at how

relativly easy it was. They seemed to think I bounced

back so fast because of my age. It should be the same

for you. If you need to contact me you can e-mail me

at coachvmurray@... . Hope this helps.

Vinnie

--- " Lay, A. " <lalay@...>

wrote:

> Vinnie,

>

> Thanks for your reply. How long were you having

> symptoms before your

> diagnosis?

>

> I really can't remember swallowing problems until

> maybe 6 - 8 months

> ago. I did have very sharp chest pains for several

> years before that

> though. My doctor said that I must have been having

> swallowing issues

> even then, but I truly don't remember anything.

> Even now, it is hard to

> eat and swallow - it takes me a very long time,

> requires tiny bites, and

> I have to stop before my food is gone - but I can

> still eat. I have

> only thrown up once every couple of weeks or so. I

> suppose that I

> should move forward with the surgery now so that I

> don't get to the more

> extreme vomiting and eating problems I've heard

> about from this group.

> Hopefully, anyway. It all sounds quite scary.

>

>

>

> ________________________________

>

> From: achalasia

> [mailto:achalasia ] On

> Behalf Of vincent murray

> Sent: Friday, April 07, 2006 9:03 AM

> achalasia

> Subject: Re: Re: I can't decide between

> balloon dilation and

> myotomy... help!

>

>

> My name is Vinnie and I am 36. I was diagnosed with

> A

> in January and had the lap myotomy with toupet wrap

> in

> Frbruary. I was out of the hospital the next day

> and

> I was able to eat immediately. Within 5 days I was

> pretty much eating anything. I still have some

> minor

> swallowing issues, and I think someday I may need a

> dilation or a second surgery, but without this

> initial

> surgery I would have been worse off. I was losing

> 10

> pounds a week (80 in 3 months). Since the surgery I

> put on 20 pounds and eat anything I want. Some

> things

> give me a little problem but everything goes down.

> The recovery from surgery was not bad for me (I

> think

> because I was young). Lots of diareha for a week

> (was

> concerned but it went away), not much pain, just a

> little uncomfortable for a week. It ttok me 2 weeks

> to fully get my energy back. Never took anything

> stronger than Tylenol PM for the pain. GET THE

> SURGERY!!!!!!! Will things be perfect

> afterwards---NO, but it will let you live again.

> You

> will always worry about it getting worse, but you

> need

> to live in the now. If it gets bad later I will

> deal

> with it then. Hope this helps.

>

> Vinnie

>

> --- aileenmonroe <axbarbet@...> wrote:

>

> > Hi ,

> > I'm 26 and have had A for 6 years. I'm actually

> > traveling to the

> > Cleveland Clinic for my heller myotomy surgery on

> > May 10th, 2006. I'm

> > from Boston, MA. I've had two botox injections and

> > two balloon

> > dilations. I wish I had gone straight to the

> > surgery. Others on this

> > site who have had the surgery can share more about

> > what happens when

> > repeat surgerie's need to be done.

> > Take Care,

> > Aileen

> >

> >

> >

> > >

> > > My name is . I'm 37 and was diagnosed with

> > Achalasia in

> > > February. I was referred to the Cleveland

> Clinic

> > (I live in the

> > > Toledo area) and just came from my first

> > appointment. The doctor

> > > said my two options are a balloon dilation and

> > laparoscopic heller

> > > myotomy. My first reaction is fear of a

> possible

> > tear with the

> > > balloon dilation needing a large open incision

> > repair. Also, it

> > > seems that a good number of people who have the

> > balloon dilation

> > > ultimately end up needing the surgery anyway. I

> > guess I'm leaning

> > > towards the surgery, but would appreciate any

> > insight you can

> > > provide? Also, if I have the surgery at 37 -

> what

> > do you do after

> > > that if it doesn't work or symptoms return

> later?

> > >

> > > Thanks so much.

> > >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Weight lost is a big problem. I lost 30 pounds in 8 months. getting

things down is everyday fight. it is so precious to be health when

you are sick. however, people just take for granted.

Quincia

> > >

> > > My name is . I'm 37 and was diagnosed with

> > Achalasia in

> > > February. I was referred to the Cleveland Clinic

> > (I live in the

> > > Toledo area) and just came from my first

> > appointment. The doctor

> > > said my two options are a balloon dilation and

> > laparoscopic heller

> > > myotomy. My first reaction is fear of a possible

> > tear with the

> > > balloon dilation needing a large open incision

> > repair. Also, it

> > > seems that a good number of people who have the

> > balloon dilation

> > > ultimately end up needing the surgery anyway. I

> > guess I'm leaning

> > > towards the surgery, but would appreciate any

> > insight you can

> > > provide? Also, if I have the surgery at 37 - what

> > do you do after

> > > that if it doesn't work or symptoms return later?

> > >

> > > Thanks so much.

> > >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Aileen,

Thinking about you and wishing you a speedy recovery and happy swallowing after your surgery tomorrow. Let us know how you're doing.

Love from

From: achalasia [mailto:achalasia ] On Behalf Of aileenmonroeSent: Thursday, April 06, 2006 8:10 PMachalasia Subject: Re: I can't decide between balloon dilation and myotomy... help!

Hi ,I'm 26 and have had A for 6 years. I'm actually traveling to the Cleveland Clinic for my heller myotomy surgery on May 10th, 2006. I'm from Boston, MA. I've had two botox injections and two balloon dilations. I wish I had gone straight to the surgery. Others on this site who have had the surgery can share more about what happens when repeat surgerie's need to be done.Take Care,Aileen>> My name is . I'm 37 and was diagnosed with Achalasia in > February. I was referred to the Cleveland Clinic (I live in the > Toledo area) and just came from my first appointment. The doctor > said my two options are a balloon dilation and laparoscopic heller > myotomy. My first reaction is fear of a possible tear with the > balloon dilation needing a large open incision repair. Also, it > seems that a good number of people who have the balloon dilation > ultimately end up needing the surgery anyway. I guess I'm leaning > towards the surgery, but would appreciate any insight you can > provide? Also, if I have the surgery at 37 - what do you do after > that if it doesn't work or symptoms return later?> > Thanks so much.>