myotomy

[Guest guest]

My husband has had the following in the last month due to not being

able to eat solids, sometimes liquid, Barrium Swallow, Chest Xrays, CT

Scan, Enodoscopy with dialiation, which didn't do a darn thing to help

at all, and Manometry. Now, we are waiting for the medical

comfirmation of the Manometry so that surgery can be done. My

question, what are the statistics of this working? We don't have

insurance and don't qualify for Medicaid, so, it will be self pay. My

husband is very worried about money at this point. We have spent over

$1,500 so far just for the tests. The reason that I'm asking is

because, I have seen some horror stories of botched myotomy's and

having to have more than one and still can't eat right. My husband is

wanting to back out of the surgery and just deal with liquid the rest

of his life, because he doesn't want to waste the money if it isn't

going to help. He's only 43!! He can't live this way forever. He's

already dropped 18 lbs, and can't work very well from getting so

tired. He has actually gained a couple of pounds from drinking Ensure

all the time.

Someone please put my mind at ease here. The surgeon that is suppose

to do this is highly recommended for this. Seems this is his

specialty.

[Guest guest]

To all of you that have responded to me, thank you so much.

We are going for a second opinion on the 26th. The manometry showed

his LES to be working normally 100%, so, what was the dialation for???

It showed his parastalsis to be 60%. Not sure what it all means. I've

been looking it all up on the internet, but, I would like to find a

doctor that will treat us better. I no longer trust this doctor. He

treats us as though he is a god and that we would never understand

anything he says. He put him on Metoclopramide, although there is

nothing wrong with his LES or stomach!! He just said, " Let's see if

this helps " WHATEVER!!! I'm tired mentally, physically and

financially. I can only imagine what my husband is feeling. He's not

letting it get him down though. I just want to find someone here that

can help him and talk to us like we are people!! BTW, we live about 60

miles east of Dallas, Texas.

[Guest guest]

texasdeaton wrote:

> ... The manometry showed

> his LES to be working normally 100%, so, what was the dialation for???

>

Are they still calling it achalasia? It may still be. The lack of proper

peristalsis's is the main symptom. The better the LES is working the

less likely treatment of the LES is going to help. Sounds like the

second opinion is going to be a good thing.

> ... He put him on Metoclopramide, although there is

> nothing wrong with his LES or stomach!!

Metoclopramide can increase peristalsis. Knowing if it works or not may

be helpful in determining how else to treat him.

You said he had a chest x-ray. Was that a barium swallow? It probably

was. What did it show. Before the CT did they give him anything to drink

and did he have an IV?

notan

[Guest guest]

Hi ,

Welcome to our group. You've come to the right place for both technical and emotional support. I've read your post a number of times and it is just "begging" for me to ask you a number of questions.

So I shall.

First before you think I am nosy (you should see my nose), please realize that often by first asking questions, we can better answer your questions by knowing more about you.

While everyone is different, most members of this Board do not "succeed" for 20 years with dilatations alone. How many have you had, and how long did you usually go between dilatations? I gather that they don't keep you going for as long as they used to? Also, how old are you now?

What are the risk factors that you were told that makes you ineligible for a lap Heller?

You do realize, in fact I'm sure you do, that an open Heller is significantly greater surgery, with much more trauma on the body, with a much longer time in the hospital and recovery time afterwards? I wonder how the risk factors differ for this? I will learn something new from your answer.

I had the open Heller done in 1991 (since you asked), after 9 years of dilatatins. There are at least two different ways that the surgeon approaches the LES. My surgeon had to spread my ribs wide apart, keep them that way, while collapsing my left lung. I needed to rehab myself quite a bit to get my lung capacity back (which I did), and rid myself of the pain of my ribs healing (don't dare laugh, sneeze or cough). I have a long 7 inch incision along my back, near the side of my body. , the happy swallower, had a "frontal approach" done. She showed me her scar over her abdomen. While the location of a scar should not be the reason to choose one surgical method over another, she sees it all the time (more prominent than mine), and I have to turn my body to look at mine (quite faded). However, she got much better results. In the end, when it comes to eating, I would choose results over cosmetics. Could it have been the surgeon? Maybe. Yet I had chosen the best thoracic surgeon at s Hopkins Hospital. Whatever the case, you need to go to the best surgeon available, even if you must go traveling (which I did). Where are you located, and which hospital and surgeon do you intend on using?

My outcome today is that I face an esophagectomy and does not. Is my case representative of the general achalasia population having had that kind of surgery? Probably not.

Since most of the Myotomies today are done laparoscopically, I would suggest that you make sure that your surgeon is well experienced in doing it on an open basis. Obviously, its much more involved, and generally speaking there are more risks (except in your special case). Many surgeons don't do it "open" anymore.

, hope to hear back from you soon.

In a message dated 4/16/2007 8:18:59 P.M. Eastern Daylight Time, jamiemcrae33@... writes:

Hi everyone, I am new to this group and just had a question.I have had achalasia for 20 years and was informed that I should have a myotomy, as the dilations just aren't enough anymore.Because of my risk factors, I am not eligible to have it done through a laporoscopy.Had anyone had it done through a large incision? and if so, what was the out come.I hope to hear back soon.

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[Guest guest]

Hi Tammy,

I survived the weather pretty well on LI, while others were less fortunate if they were near rivers (their homes became "one with the river.") We had a warmer winter than spring so far.

The open I had in 1991, one could only guess why it did not last. I can tell you a few things. For one, I was also told that this was the best "fixit" available and once done, that would be it. No mention of failure, nor esophagectomy. However, for reasons never explained to me (perhaps medical liability), my surgery was, early on, deemed the first failure by my surgeon, doing this operation. At the time, he was Hopkins' rising star. The doctors and nurses all called and treated him like God. He was like the Dr. Kildaire of the hospital. Maybe they waited too long to do the surgery and I was no longer as good a candidate for it. I was helped by it. It did last for a long time, far better than any dilatation. But Heller's, especially the older type, may not be forever. What might have been key here was that I was never cautioned about missing followups, and what might happen. For several years I religiously went down from NY to Baltimore for my annual checkups. Then my gastro Doc retired and I was not thrilled with his replacement. Since I felt pretty good, I pretty much stopped getting checked, for years. Moral: let this thing go and it will come back to haunt you.

What caused the E to stretch so much? I did not always drink enough with my meals. There were times I would eat without drinking since it seemed the food did go down. However, it only went as far down as my LES and then it just sat there, slowly over the years wearing the elasticity of the muscle and the E away, until it sank and formed a bucket below my stomach. And that is why, when you read enough of my posts, you see I have become a huge proponent of drinking whatever works best to get the food down. Food that sits, stays, or comes back up. There is no crime in drinking a lot of liquids. It doesn't mean the operation failed. With no peristalsis, we must do everything we can to facilitate getting the food down to the stomach ASAP, regardless of how good we might feel. Don't wait for food to get stuck to drink something. Drink all along during the meal so that does not happen and just take your time eating. If I can't eat slowly, I'm not going to eat. (Easy for me to say today, facing an esophagectomy), but that doesn't have to be your fate.

never had a Heller. She had a dilatation as a teenager. Unfortunately, there was really no followup with her. Good information back then was not easily available as it is now. Her esophagus just continued to stretch and stretch over the years. One might think a larger esophagus would better accommodate food by being larger, but that's not the idea. Like a balloon, it can only be stretched so far before it becomes permanently damaged.

Tammy, please keep in mind that we all have our own "war" stories and mine is not necessarily representative of anyone else's or the group as a whole. By hearing medical histories from various people, it might give you a better perspective of where you are now and where you are going. I would be very curious as to how this surgeon feels that he will have you fixed for the rest of your life....that is, unless you start eating again.

In a message dated 4/16/2007 9:23:18 P.M. Eastern Daylight Time, stla_c@... writes:

:

Wondering how you survived the weather...sounded like you took a beating. FL managed well - we only got a little rain and mostly wind. Hot in 80's tomorrow.

Another question - i know you had an 'open' in 81 with not as much technology but am wondering why it didn't last. What caused your E. to stretch so much. That is one concern I have....will the HM last. The surgeon that will be doing mine stated "the rest of your life". I didn't dare ask how long he thought that would be!!! Also , with , why did she end up with an esophagectomy. Did she have a HM years ago?

Thanks for your info.

Tammy -FL

Re: Myotomy

Hi ,

Welcome to our group. You've come to the right place for both technical and emotional support. I've read your post a number of times and it is just "begging" for me to ask you a number of questions.

So I shall.

First before you think I am nosy (you should see my nose), please realize that often by first asking questions, we can better answer your questions by knowing more about you.

While everyone is different, most members of this Board do not "succeed" for 20 years with dilatations alone. How many have you had, and how long did you usually go between dilatations? I gather that they don't keep you going for as long as they used to? Also, how old are you now?

What are the risk factors that you were told that makes you ineligible for a lap Heller?

You do realize, in fact I'm sure you do, that an open Heller is significantly greater surgery, with much more trauma on the body, with a much longer time in the hospital and recovery time afterwards? I wonder how the risk factors differ for this? I will learn something new from your answer.

I had the open Heller done in 1991 (since you asked), after 9 years of dilatatins. There are at least two different ways that the surgeon approaches the LES. My surgeon had to spread my ribs wide apart, keep them that way, while collapsing my left lung. I needed to rehab myself quite a bit to get my lung capacity back (which I did), and rid myself of the pain of my ribs healing (don't dare laugh, sneeze or cough). I have a long 7 inch incision along my back, near the side of my body. , the happy swallower, had a "frontal approach" done. She showed me her scar over her abdomen. While the location of a scar should not be the reason to choose one surgical method over another, she sees it all the time (more prominent than mine), and I have to turn my body to look at mine (quite faded). However, she got much better results. In the end, when it comes to eating, I would choose results over cosmetics. Could it have been the surgeon? Maybe. Yet I had chosen the best thoracic surgeon at s Hopkins Hospital. Whatever the case, you need to go to the best surgeon available, even if you must go traveling (which I did). Where are you located, and which hospital and surgeon do you intend on using?

My outcome today is that I face an esophagectomy and does not. Is my case representative of the general achalasia population having had that kind of surgery? Probably not.

Since most of the Myotomies today are done laparoscopically, I would suggest that you make sure that your surgeon is well experienced in doing it on an open basis. Obviously, its much more involved, and generally speaking there are more risks (except in your special case). Many surgeons don't do it "open" anymore.

, hope to hear back from you soon.

In a message dated 4/16/2007 8:18:59 P.M. Eastern Daylight Time, jamiemcrae33 writes:

Hi everyone, I am new to this group and just had a question.I have had achalasia for 20 years and was informed that I should have a myotomy, as the dilations just aren't enough anymore.Because of my risk factors, I am not eligible to have it done through a laporoscopy.Had anyone had it done through a large incision? and if so, what was the out come.I hope to hear back soon.

See what's free at AOL.com.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

See what's free at AOL.com.

[Guest guest]

Hi Welcome to the board.

My son had to have the open myotomy back in October.What would you

like to know,just ask and I will be more than happy to help as much

as I can.

Why cant you have lapro?

Tonia

>

> Hi everyone, I am new to this group and just had a question.

>

> I have had achalasia for 20 years and was informed that I should

have a

> myotomy, as the dilations just aren't enough anymore.

>

> Because of my risk factors, I am not eligible to have it done

through a

> laporoscopy.

>

> Had anyone had it done through a large incision? and if so, what

was

> the out come.

>

> I hope to hear back soon.

>

>

>

[Guest guest]

Hi ,

While its not usually my style to write (relatively) short responses, in the States it is "Tax Day" today, and being a CPA have no time for anything else, plus its my 36th wedding anniversary today. But I wanted to get back to you.

Btw, people affected, or pretending to be affected by the Nor'Easter we just had, you get 2 extra days to file. Just mark "April 16 Storm" on your return.

. Please, no matter what it costs, seek out another opinion. You say the doctor wants to do it open, but you also said that is the only way he does it. Its possible he is acting more in his own self-interest, based upon his experience, then what is best for you. I don't know what is best for you, but you owe it to yourself to get more input.

You also mentioned that you have a mega-esophagus (my words), though you're "severely dilated at the bottom." Forgive me if I'm wrong; did you mean to say that or that your esophagus was very tightly contracted (at the bottom), thus giving you more problems? Regardless, I strongly believe that after you complete your latest rounds of tests that you take the films to another doctor for an evaluation. There is just too much riding on this for one surgeon who doesn't do a lap to possibly blame your weight.

Possibly other members in Canada, or many knowledgeable members in the US could suggest another doctor to see in Canada, or in closer by cities in the US.

You've waited this long, a little longer might prove to be a wiser choice.

In a message dated 4/17/2007 9:38:01 A.M. Eastern Daylight Time, jamiemcrae33@... writes:

Hi there, Thank you for your welcoming response, and no you are not nosey.I was diagnosed when I was 23. At that time it was so severe that I couldn't even swallow water. Lost 75 lbs in 2 months.I am now 44. I've had 3 dilitations. I guess it just becomes a way of life. It was tollerable. Last dilitatios was about 6 years ago. Most recently for the last year and a half I have been coughing, losing my voice and the pain of the spasms usually happen at once a day. What brought me to this point though, I was getting a different pain in my chest and thought it was my heart. The radiologist that read the CT scan was not familiar with achalasia and said I had ruputured my esophagus. Thankfully, it was the long easter weekend and the thorasic surgeon was not available, and they put me on high does antibiotics and nothing at all by mouth. Eventually they did a swallow and realized it was my achalasia. So I went to see the surgeon when I got out.He is a thorasic surgeon and only does procedures through the chest. He said he is going through the back, like you. My esophagus is huge from all the stretching but of course is severly dilated at the botton. He felt because of that and I am fairly heavy, the best way to do it is through a large incision.He was also recommended by the gastroenterologist.So I am going for a scope next week and then we will schedule the surgery after that. He said no longer than 2 month wait.I live in Canada. Oshawa Ontario. I will be going to Lakeridge Health in Oshawa, and my surgeon is Dr. H. I. Marcus.I am very nervous because about 10 years ago I had my vocal cords operated on and they gave my some kind of (drink) to prevent reflux before putting me under and I through up under antistetic.Anyway, I've yapped long enough. I wish everyone the best and look forward to you comments.Have a great day.

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[Guest guest]

Hi there,

Thank you for your welcoming response, and no you are not nosey.

I was diagnosed when I was 23. At that time it was so severe that I

couldn't even swallow water. Lost 75 lbs in 2 months.

I am now 44. I've had 3 dilitations. I guess it just becomes a way of

life. It was tollerable. Last dilitatios was about 6 years ago.

Most recently for the last year and a half I have been coughing,

losing my voice and the pain of the spasms usually happen at once a

day. What brought me to this point though, I was getting a different

pain in my chest and thought it was my heart. The radiologist that

read the CT scan was not familiar with achalasia and said I had

ruputured my esophagus. Thankfully, it was the long easter weekend

and the thorasic surgeon was not available, and they put me on high

does antibiotics and nothing at all by mouth. Eventually they did a

swallow and realized it was my achalasia. So I went to see the

surgeon when I got out.

He is a thorasic surgeon and only does procedures through the chest.

He said he is going through the back, like you.

My esophagus is huge from all the stretching but of course is severly

dilated at the botton. He felt because of that and I am fairly heavy,

the best way to do it is through a large incision.

He was also recommended by the gastroenterologist.

So I am going for a scope next week and then we will schedule the

surgery after that. He said no longer than 2 month wait.

I live in Canada. Oshawa Ontario. I will be going to Lakeridge Health

in Oshawa, and my surgeon is Dr. H. I. Marcus.

I am very nervous because about 10 years ago I had my vocal cords

operated on and they gave my some kind of (drink) to prevent reflux

before putting me under and I through up under antistetic.

Anyway, I've yapped long enough. I wish everyone the best and look

forward to you comments.

Have a great day.

[Guest guest]

Hi Tammy,

My guess is exactly what you are saying. I think because it would

have been mid eighties when I was first diagnosed that dilatation was

the choice of treatment. Then botox came along, and I just didn't

like the idea of putting botchulism in my body.

My gastro dr. is one of the best in Canada, and I trusted him. I

would suggest surgery, he would not advise it. I think he's just old

school. Very nice, but old school. But, after a about in the hospital

over easter weekend, I realized I'm tired of being in pain daily, and

coughing everytime I eat a meal. My esophogus is so large, it holds

liquid and food there and turns to mucous. I have been having this

for over a year now. The clinic drs just kept treating for the flu

like symptoms It took going to the hospital to get anywhere. My

gastro dr is retired, so I had no choice. So upon the recommendation

of the gastr dr I say in er, and the ct scan, I am going to have

surgery. I am a large lady and to do it through the laporoscopy would

be more difficult and higher risk of perforation.

From everything I have read, the myotomy has the highest, long term

success rate out of all the procedures. Here's hoping.

Thank you for your reply, it's nice to chat with people who acutally

know what achalasia is.

Have a great day and chat soon,

[Guest guest]

jamiemcrae33 wrote:

> ... I through up under antistetic. ...

>

Be sure to let them know that you have that concern. They can give you

medication to help prevent that. I get nauseated from narcotics and

tried to let them know but they didn't think what and how they gave me

would be a problem. It was not a problem until a nurse decided I need to

stand up so she could change the bedding. I stood up and started dry

heaving. Now I have a paraesophageal hernia that was probably caused by

that. It has not been a problem for me, though it may be the cause for

me needing to take Nexium. I would rather not have it even if it is not

a problem.

notan

[Guest guest]

Hello , I find it kind of strange that a surgeon already says surgery cannot be done laparoscopically. It is no problem to start laparoscopically and switch over to an open myotomy, shout that become necessary (this has happened in my case). Nevertheless, I have never had a problem with the fact that my surgeries were both open ones (I had two myotomies). I don't know from experience if recovery takes longer with an open one, but I guess so. My scar never hurt me, not even immediately after surgery when it still had to heal. So I cannot imagine that there is a difference in feeling pain. On the inside the surgery is still the same, it are just simply different cuts. Your internal wounds are the wounds you feel, not your external ones. Indeed you do get a large scar (from the middle of your breasts untill your belly button), but I never had a problem with that. In fact I

went for a swim in my bikini last Friday, while my scar is still "fresh" (a little purple, one can see it quite well, this will fade away a bit in future). On one hand I was proud of myself, having the guts to wear a bikini again. On the other hand I think: what the heck; who doesn't want to see it can look the other way! Achalasia is part of me and so are all my scars (I've got plenty, we don't need a road map, you can just take my belly to find your way around Europe, I guess). So don't worry, an open surgery is not the end of the world. Yet, your story really makes me wonder about your surgeon's experience performing myotomies! Be carefull! Make sure the surgeon who's operating on you has got enough experience and is well known (amongst achalasians). You can find many names etc. here on this forum. As I am from Europe I cannot help you on that one. Don't be afraid and get a

second opinion! This surgery is so important for your future, make sure you get the best possible treatment by the best possible surgeon. You must do that!!! Isabella jamiemcrae33 <jamiemcrae33@...> wrote: Hi there, Thank you for your welcoming response, and no you are not nosey.I was diagnosed when I was 23. At that time it was so severe that I couldn't even swallow water. Lost 75 lbs in 2 months.I am now 44. I've had 3

dilitations. I guess it just becomes a way of life. It was tollerable. Last dilitatios was about 6 years ago. Most recently for the last year and a half I have been coughing, losing my voice and the pain of the spasms usually happen at once a day. What brought me to this point though, I was getting a different pain in my chest and thought it was my heart. The radiologist that read the CT scan was not familiar with achalasia and said I had ruputured my esophagus. Thankfully, it was the long easter weekend and the thorasic surgeon was not available, and they put me on high does antibiotics and nothing at all by mouth. Eventually they did a swallow and realized it was my achalasia. So I went to see the surgeon when I got out.He is a thorasic surgeon and only does procedures through the chest. He said he is going through the back, like you. My esophagus is huge from all the stretching but of course is severly

dilated at the botton. He felt because of that and I am fairly heavy, the best way to do it is through a large incision.He was also recommended by the gastroenterologist.So I am going for a scope next week and then we will schedule the surgery after that. He said no longer than 2 month wait.I live in Canada. Oshawa Ontario. I will be going to Lakeridge Health in Oshawa, and my surgeon is Dr. H. I. Marcus.I am very nervous because about 10 years ago I had my vocal cords operated on and they gave my some kind of (drink) to prevent reflux before putting me under and I through up under antistetic.Anyway, I've yapped long enough. I wish everyone the best and look forward to you comments.Have a great day.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.