Re: Re: Summary of my heller myotomy with dor fundoplication - hope this helps

April 25, 2011

Hi Cara,

I would like to think (no doubt, you as well) that if you take the best care you

can of your esophagus, get timely checkups, then there continues to exist the

very real possibility that you may be able to go thru the rest of your life

without having an ectomy. Only time will tell, of course.

As you know as well as I do there are many people who regularly participate on

this Board who have had ectomies and have done very well by it (no walk in the

park, but in the long run much better off for having it done.)

I wish you all the best and thank you for your continuing participation on this

Board, having helped a great many people.

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Mon, April 25, 2011 12:55:30 PM

Subject: Re: Summary of my heller myotomy with dor fundoplication -

hope this helps

Â

No worries Greg and I am glad you are aware because i really feel like i screwed

up by ignoring my Achalasia all those years after the dilatation. I think maybe

I could have prevented some of the damage if i had my myotomy 12 years sooner.

Now I have to face a potential esophagectomy at some point in my life.

i wish you much happy swallowing in the years to come!!

Cara

> > >

> > > I'm writing a summary of my experience with achalasia over the last year

so

>that those who are recently diagnosed or think they may have achalasia may

>benefit from my experience. Everyone's experience, treatment, and doctors are

>different, but here's what I went through - and just so you know up front, I

had

>surgery in December and it was totally successful. I met my surgeon 10 days ago

>for a follow up (including another barium study) and the results were so good

>that I don't need to see him again. Ever.

>

> > > So on with the show...

> > >

> > > After more than two years of intense, intermittent sub-sternal pain, which

>was originally diagnosed as GERD, and various treatment regimes (all of which

>failed to manage or control the pain, I began having difficulty swallowing in

>May of 2010. That same month I had my first EGD, which revealed no

>irregularities or erosion damage (performed at Presbyterian Hospital in

>Whittier, CA). By August, I was regurgitating about one-third of my meals,

>meaning that I would eat, feel like it was getting lodged, try to wash it down

>with water (which by then was essentially the only thing I was able to drink -

>carbonated beverages caused near immediate regurgitation every time), and would

>end up regurgitating my meal and the water.

>

> > >

> > > In August, a second EGD was performed at Pres. Hospital. They had

>originally been focused on the GERD-like symptoms, and hadn't taken biopsies of

>the esophagus the first time. You can imagine my frustration at the need for a

>second EGD simply to take biopsies that most likely should have been done the

>first time. (An economically valuable lesson: EGDs are much less expensive when

>performed in an out-patient GI clinic than in a hospital. If you have a high

>co-pay (which I do), go to the clinic rather than the hospital. The same doctor

>performed both procedures, but it cost 1/4 as much at the clinic.) Again, the

>EGD showed nothing of import - and specifically did not show any evidence of

the

>'rat tail' esophagus commonly associated with achalasia.

>

> > >

> > > My swallowing got progressively worse over the next few months. I was now

>beginning to lose significant amounts of weight. Probably about 15-20 pounds at

>that point. As I am an athlete in relatively good shape, I'd lost more than

just

>the little extra I was carrying around). By mid-october, I was regurgitating at

>least a portion of nearly every meal. We no longer went out to eat, and every

>meal was a worry - not only was I concerned about my inability to eat, but also

>about the social awkwardness of running to the bathroom every 3 minutes because

>I was too stubborn not to eat.

>

> > >

> > > A third EGD was performed at Cedars Sinai in LA in November, in order to

>insert a Bravo capsule, so they could monitor the pH levels in my esophagus

over

>a 48 hour period. The Bravo study revealed no significant pH changes in the

>esophagus. Soon thereafter, a esophageal manometry was scheduled, also at

>Cedars. The manometry is by far the worst test of the bunch. For those of you

>who have to have them, just know that they are necessary and the most important

>diagnostic tool currently available. Also know that they suck big time. My nose

>was numbed using some local anesthetic (which was applied on the end of a long

>swab that was jammed up my nostril and left there for a few minutes. And not

>just a little bit inside, but about 4 or so inches. It basically feels like

>they're swabbing your brain at that point). Then they take the manometry tool,

>which is a long tube, about as thick as a pencil, and insert it through the

nose

>and into the back of the throat. They ask you to swallow (if I was really

>capable of swallowing well, would I be having this test in the first place?)

the

>tube so they can get it into the esophagus and begin the test. Assume you're

>going to gag, and perhaps even heave on the nurse/doctor. I managed to avoid

>throwing up on them, though I have no idea how. After the tube is inserted, you

>swallow as directed by the doc over a 60-90 second period. That's easy. The

>tough part is NOT swallowing other than when he tells you to. If you swallow

>even once when not told to, you have to start over, like I did. Sucky. After

the

>first test, then they do it again, only with applesauce. They measure not only

>the action of the esophagus, but the pressure of the lower esophageal sphincter

>(LES), which is pretty much the culprit of all of our problems.

>

> > >

> > > The manometry revealed classic achalasia, with 0% peristaltic activity.

For

>those of you new to this - unlike most people, whose esophagi contract

>rhythmically and help push food down to their stomach in a process called

>peristalsis, those of us lucky enough to have achalasia don't do this right (or

>sometimes at all). So the manometry confirmed what everyone thought at that

>point based on my symptoms - I have achalasia. Which they were nice enough to

>confirm with a timed barium study.

>

> > >

> > > Yes, a timed barium study is the way they confirm that you have a disorder

>that makes it very difficult, if not impossible, for you to swallow

>successfully. You're given a cup of very thick, viscous liquid as you stand in

>front of a fluoroscopy machine (a type of x-ray machine that will take video),

>and asked to drink as much of it as possible as fast as possible. They might as

>well have asked me to fly. They then time how long it takes for the fluid to

>pass from the esophagus into the stomach.

> > >

> > > I managed to drink a few sips without regurgitating it all over their

fancy

>machine. The result - zero spontaneous passage of the liquid into the stomach

at

>0, 1, or 5 minutes. They gave me a few crystals and some water to drink which

>drove the barium liquid through the LES and into the stomach. And this is

>considered a successful test because it confirms what the manometry told them -

>I have achalasia.

>

> > >

> > > By now it is late November, and I'm down 25 lbs or more. Since I am

>otherwise very health and only 35 years old, my doctors and I decide that

>surgery rather than botox injection or balloon dilation is the best

alternative.

>Now it is time to find a surgeon. I'm very fortunate in that my father is a

>physician (though on the other coast) and my primary care physician is my best

>friend's father. So they were both very active in helping identify potential

>surgeons. Additionally, and perhaps most importantly, my fiancee is an

>anesthetist at Kaiser, and asked every surgeon she worked with about their

>recommendations for a surgeon to perform my myotomy.

>

> > >

> > > Living in LA, there are three legitimate hospital options, all of which

>have GI clinics that treat achalasia frequently (or as frequently as is

possible

>given the extreme rarity of the condition): Cedars, UCLA, and USC.

>

> > >

> > > One of the surgeons at Kaiser had recommended a doc at UCLA, and I met

with

>him almost right away. He walked me through the surgery, and what I could

expect

>afterwards. I felt very comfortable with him, and the UCLA facility is

>beautiful. I left the meeting and started to work with his assistant to

schedule

>the procedure for mid-December. (It was vital that I get it done as quickly as

>possible for both health reasons and financial reasons - I'd met both my

>deductible as well as my out-of-pocket maximum for the year and didn't want to

>have to pay another $5,000.)

> > >

> > > During that time, we received a half dozen more recommendations for

another

>surgeon at USC. Given how many doctors were recommending him, I went to meet

>with Dr. Hagen. I was also comfortable with him, and since so many doctors (and

>my fiancee) were insistent that he was the one I should use, I scheduled

surgery

>with him for mid-December.

>

> > >

> > > The weekend prior to surgery, my primary care physician and the GI doc at

>Cedars that had done the manomtery decided that they were uncomfortable with

how

>rapidly the condition had developed - usually achalasia comes on slowly over

>years, not over the course of a few months. They decided they wanted to rule

out

>a tumor or mass sitting on the outside of the esophagus, so they scheduled me

>for an abdominal CT scan. I had that done, and there were no anomalies seen, so

>surgery was a go.

>

> > >

> > > The plan was for surgery on the 17th, discharge on the 19th. Needless to

>say, I was nervous. The morning of surgery, I arrived at the hospital at about

>7:00. They called me in around 8:30 for pre-op prep - the usual stuff: the

>oh-so-fashionable hospital gown, the weigh in, the IV start). So now I'm just

>waiting on the doctors.

>

> > >

> > > The anesthesiologist came over to discuss her part of the surgery. Since I

>had my own expert with me (thank you, financee!) that part went pretty quickly.

>Rapid induction and treating me like I had a full stomach because there would

>invariably be fluid in my esophagus even though I had been NPO for 12 hours

>(nothing by mouth).

>

> > >

> > > The surgical residents came over to talk about the surgery itself (though

I

>had heard all of this about ten times by now). So we're just waiting for Dr.

>Hagen to be ready - he was in a meeting or at another surgery.

>

> > >

> > > I was very anxious and would very much have appreciated (and in fact I had

>expected) some anti-anxiety meds at this point. But though I asked the

>anesthesiologist and the residents about this, and was assured it was

>forthcoming, it never happened.

> > >

> > > Finally, Dr. Hagen showed up, there was a flurry of activity, some

>propofol, and ....

> > >

> > > I woke up and was in considerable discomfort. And I was pissed off that I

>hurt. Basically, I was a real pain in the ass for a bit, until the nurse showed

>up and whacked me up on some morphine.

>

> > >

> > > The next two days in the hospital weren't overly fun, as you can imagine.

>Welcome to the wonderful world of foley catheters, limited movements and

>morphine. Though I did stat to wean myself off the morphine after 24 hours, and

>was completely off it after 36 and on a form of liquid vicodin instead. The

>morning after surgery, they make you do another barium swallow to make certain

>there are no leaks. Pain management was an issue. My doc had me on morphine

>every 4 hours via IM injection (so they'd come in and give me a shot in a

muscle

>every 4 hours rather than just give it to me via the IV). For me, it wore off

>after 2.5 - 3 hours every time, so I'd be awake and staring at the clock

waiting

>for the next injection for at least an hour. I'd recommend working out with

your

>doc in advance what your pain management plan is going to be.

>

> > >

> > > Once the hospital is convinced your GI tract is awake and functioning, you

>can go home. I left Friday afternoon as scheduled. The ride home wasn't much

>fun. Twenty minutes in a bouncing car left me feeling jostled, sore and

>irritated.

>

> > >

> > > Once home, it was a liquid diet for about a week. After that, it was soft

>foods only for another two weeks, slowly titrating in a more complete diet.

>

> > >

> > > My first bite of solid food (albeit soft) was portobello ravioli, and I

>swear it was the best thing I have ever tasted in my life. My last solid food

>had been more than a month prior to that, and it tasted like the food of the

>gods.

> > >

> > > I had 5 incisions in my abdomen, and they were quite sore for about 2-3

>weeks post. The little ends of the internal sutures were visible for about two

>months, after which they dissolved and fell off. The scars now are pretty

>minimal and actually much less noticeable than I expected.

>

> > >

> > > For the first 10 weeks post-surgery, I had a much reduced appetite

relative

>to the " normal " I'd had before everything started. I ate much smaller portions,

>felt full very quickly, and had 4 episodes where I regurgitated a little food

>(and every time it was because I ate a little too quickly and didn't chew

>enough. As I began feeling better, I became less conscious of the act of

eating,

>and pushed it too far too fast). However, starting in about week 11, I noticed

I

>was eating more and more easily. By 12 weeks post, I was pretty much eating

>everything without problems, and eating like a " normal " person. I was regaining

>weight, and was back to normal physical activity.

>

> > >

> > > For 12 weeks following surgery, my physical activity was severely

>restricted - I was not allowed to lift anything more than 5 pounds for 8 weeks,

>and nothing more than 10 pounds for the 4 weeks after that. I wasn't allowed to

>do anything more than walk during the entire 12 week period. Starting in the

>12th week, I resumed normal physical activity, though it was no surprise that I

>was essentially completely deconditioned. That was tough, because I am a soccer

>player and biker, and had been in superb cardio shape prior to this whole

>adventure.

>

> > >

> > > From the first EGD in May to the lowest point, I lost 44 pounds. Once I

was

>able to begin eating normally, I started putting back on weight. I've regained

>about 20 lbs at this point (about 5 and a half months post surgery).

>

> > >

> > > For those considering surgery and checking surgeons, I whole-heartedly

>recommend Dr. Hagen. Though he isn't the warmest and most endearing of doctors

>in terms of bedside manner, the results I achieved were outstanding and I'd

>choose to go with him 100 out of 100 times if given the choice again.

>

> > >

> > > I realize this is a very long post, but if you've read this far, hopefully

>it will help you as you try to navigate the uncertain waters of dealing with

>achalasia, and give you a sense of what the tests are, what the surgery is

like,

>and most importantly, what the recovery is like.

>

> > >

> > > Good luck!

> > >

> >

>

April 25, 2011

Cara,

You mentioned that if you had regular checkups you could have had the surgery12

years sooner, from reading all the posts it sounds like even the surgery has

15-20 years relief and then another surgery is most likely needed.Â After the

2nd surgery most folks end up getting esophagectomy.Â So it seems like 14 years

of relief for you after dilation made you face the same situation at the end of

it so why would having a surgery earlier would have better.Â Does anyone know

how many times a surgery can be performed before esophagectomy may be

required?Â Sorry for any ignorant remark. just reading and understanding what

we achalasian may need to encounter in the future.

Thanks

From: spotoca <cspoto@...>

Subject: Re: Summary of my heller myotomy with dor fundoplication -

hope this helps

achalasia

Date: Monday, April 25, 2011, 9:55 AM

Â

No worries Greg and I am glad you are aware because i really feel like i

screwed up by ignoring my Achalasia all those years after the dilatation. I

think maybe I could have prevented some of the damage if i had my myotomy 12

years sooner. Now I have to face a potential esophagectomy at some point in my

life.

i wish you much happy swallowing in the years to come!!

Cara

> > >

> > > I'm writing a summary of my experience with achalasia over the last year

so that those who are recently diagnosed or think they may have achalasia may

benefit from my experience. Everyone's experience, treatment, and doctors are

different, but here's what I went through - and just so you know up front, I had

surgery in December and it was totally successful. I met my surgeon 10 days ago

for a follow up (including another barium study) and the results were so good

that I don't need to see him again. Ever.

> > > So on with the show...

> > >

> > > After more than two years of intense, intermittent sub-sternal pain, which

was originally diagnosed as GERD, and various treatment regimes (all of which

failed to manage or control the pain, I began having difficulty swallowing in

May of 2010. That same month I had my first EGD, which revealed no

irregularities or erosion damage (performed at Presbyterian Hospital in

Whittier, CA). By August, I was regurgitating about one-third of my meals,

meaning that I would eat, feel like it was getting lodged, try to wash it down

with water (which by then was essentially the only thing I was able to drink -

carbonated beverages caused near immediate regurgitation every time), and would

end up regurgitating my meal and the water.

> > >

> > > In August, a second EGD was performed at Pres. Hospital. They had

originally been focused on the GERD-like symptoms, and hadn't taken biopsies of

the esophagus the first time. You can imagine my frustration at the need for a

second EGD simply to take biopsies that most likely should have been done the

first time. (An economically valuable lesson: EGDs are much less expensive when

performed in an out-patient GI clinic than in a hospital. If you have a high

co-pay (which I do), go to the clinic rather than the hospital. The same doctor

performed both procedures, but it cost 1/4 as much at the clinic.) Again, the

EGD showed nothing of import - and specifically did not show any evidence of the

'rat tail' esophagus commonly associated with achalasia.

> > >

> > > My swallowing got progressively worse over the next few months. I was now

beginning to lose significant amounts of weight. Probably about 15-20 pounds at

that point. As I am an athlete in relatively good shape, I'd lost more than just

the little extra I was carrying around). By mid-october, I was regurgitating at

least a portion of nearly every meal. We no longer went out to eat, and every

meal was a worry - not only was I concerned about my inability to eat, but also

about the social awkwardness of running to the bathroom every 3 minutes because

I was too stubborn not to eat.

> > >

> > > A third EGD was performed at Cedars Sinai in LA in November, in order to

insert a Bravo capsule, so they could monitor the pH levels in my esophagus over

a 48 hour period. The Bravo study revealed no significant pH changes in the

esophagus. Soon thereafter, a esophageal manometry was scheduled, also at

Cedars. The manometry is by far the worst test of the bunch. For those of you

who have to have them, just know that they are necessary and the most important

diagnostic tool currently available. Also know that they suck big time. My nose

was numbed using some local anesthetic (which was applied on the end of a long

swab that was jammed up my nostril and left there for a few minutes. And not

just a little bit inside, but about 4 or so inches. It basically feels like

they're swabbing your brain at that point). Then they take the manometry tool,

which is a long tube, about as thick as a pencil, and insert it through the nose

and into the back of the

throat. They ask you to swallow (if I was really capable of swallowing well,

would I be having this test in the first place?) the tube so they can get it

into the esophagus and begin the test. Assume you're going to gag, and perhaps

even heave on the nurse/doctor. I managed to avoid throwing up on them, though I

have no idea how. After the tube is inserted, you swallow as directed by the

doc over a 60-90 second period. That's easy. The tough part is NOT swallowing

other than when he tells you to. If you swallow even once when not told to, you

have to start over, like I did. Sucky. After the first test, then they do it

again, only with applesauce. They measure not only the action of the esophagus,

but the pressure of the lower esophageal sphincter (LES), which is pretty much

the culprit of all of our problems.

> > >

> > > The manometry revealed classic achalasia, with 0% peristaltic activity.

For those of you new to this - unlike most people, whose esophagi contract

rhythmically and help push food down to their stomach in a process called

peristalsis, those of us lucky enough to have achalasia don't do this right (or

sometimes at all). So the manometry confirmed what everyone thought at that

point based on my symptoms - I have achalasia. Which they were nice enough to

confirm with a timed barium study.

> > >

> > > Yes, a timed barium study is the way they confirm that you have a disorder

that makes it very difficult, if not impossible, for you to swallow

successfully. You're given a cup of very thick, viscous liquid as you stand in

front of a fluoroscopy machine (a type of x-ray machine that will take video),

and asked to drink as much of it as possible as fast as possible. They might as

well have asked me to fly. They then time how long it takes for the fluid to

pass from the esophagus into the stomach.

> > >

> > > I managed to drink a few sips without regurgitating it all over their

fancy machine. The result - zero spontaneous passage of the liquid into the

stomach at 0, 1, or 5 minutes. They gave me a few crystals and some water to

drink which drove the barium liquid through the LES and into the stomach. And

this is considered a successful test because it confirms what the manometry told

them - I have achalasia.

> > >

> > > By now it is late November, and I'm down 25 lbs or more. Since I am

otherwise very health and only 35 years old, my doctors and I decide that

surgery rather than botox injection or balloon dilation is the best alternative.

Now it is time to find a surgeon. I'm very fortunate in that my father is a

physician (though on the other coast) and my primary care physician is my best

friend's father. So they were both very active in helping identify potential

surgeons. Additionally, and perhaps most importantly, my fiancee is an

anesthetist at Kaiser, and asked every surgeon she worked with about their

recommendations for a surgeon to perform my myotomy.

> > >

> > > Living in LA, there are three legitimate hospital options, all of which

have GI clinics that treat achalasia frequently (or as frequently as is possible

given the extreme rarity of the condition): Cedars, UCLA, and USC.

> > >

> > > One of the surgeons at Kaiser had recommended a doc at UCLA, and I met

with him almost right away. He walked me through the surgery, and what I could

expect afterwards. I felt very comfortable with him, and the UCLA facility is

beautiful. I left the meeting and started to work with his assistant to schedule

the procedure for mid-December. (It was vital that I get it done as quickly as

possible for both health reasons and financial reasons - I'd met both my

deductible as well as my out-of-pocket maximum for the year and didn't want to

have to pay another $5,000.)

> > >

> > > During that time, we received a half dozen more recommendations for

another surgeon at USC. Given how many doctors were recommending him, I went to

meet with Dr. Hagen. I was also comfortable with him, and since so many doctors

(and my fiancee) were insistent that he was the one I should use, I scheduled

surgery with him for mid-December.

> > >

> > > The weekend prior to surgery, my primary care physician and the GI doc at

Cedars that had done the manomtery decided that they were uncomfortable with how

rapidly the condition had developed - usually achalasia comes on slowly over

years, not over the course of a few months. They decided they wanted to rule out

a tumor or mass sitting on the outside of the esophagus, so they scheduled me

for an abdominal CT scan. I had that done, and there were no anomalies seen, so

surgery was a go.

> > >

> > > The plan was for surgery on the 17th, discharge on the 19th. Needless to

say, I was nervous. The morning of surgery, I arrived at the hospital at about

7:00. They called me in around 8:30 for pre-op prep - the usual stuff: the

oh-so-fashionable hospital gown, the weigh in, the IV start). So now I'm just

waiting on the doctors.

> > >

> > > The anesthesiologist came over to discuss her part of the surgery. Since I

had my own expert with me (thank you, financee!) that part went pretty quickly.

Rapid induction and treating me like I had a full stomach because there would

invariably be fluid in my esophagus even though I had been NPO for 12 hours

(nothing by mouth).

> > >

> > > The surgical residents came over to talk about the surgery itself (though

I had heard all of this about ten times by now). So we're just waiting for Dr.

Hagen to be ready - he was in a meeting or at another surgery.

> > >

> > > I was very anxious and would very much have appreciated (and in fact I had

expected) some anti-anxiety meds at this point. But though I asked the

anesthesiologist and the residents about this, and was assured it was

forthcoming, it never happened.

> > >

> > > Finally, Dr. Hagen showed up, there was a flurry of activity, some

propofol, and ....

> > >

> > > I woke up and was in considerable discomfort. And I was pissed off that I

hurt. Basically, I was a real pain in the ass for a bit, until the nurse showed

up and whacked me up on some morphine.

> > >

> > > The next two days in the hospital weren't overly fun, as you can imagine.

Welcome to the wonderful world of foley catheters, limited movements and

morphine. Though I did stat to wean myself off the morphine after 24 hours, and

was completely off it after 36 and on a form of liquid vicodin instead. The

morning after surgery, they make you do another barium swallow to make certain

there are no leaks. Pain management was an issue. My doc had me on morphine

every 4 hours via IM injection (so they'd come in and give me a shot in a muscle

every 4 hours rather than just give it to me via the IV). For me, it wore off

after 2.5 - 3 hours every time, so I'd be awake and staring at the clock waiting

for the next injection for at least an hour. I'd recommend working out with your

doc in advance what your pain management plan is going to be.

> > >

> > > Once the hospital is convinced your GI tract is awake and functioning, you

can go home. I left Friday afternoon as scheduled. The ride home wasn't much

fun. Twenty minutes in a bouncing car left me feeling jostled, sore and

irritated.

> > >

> > > Once home, it was a liquid diet for about a week. After that, it was soft

foods only for another two weeks, slowly titrating in a more complete diet.

> > >

> > > My first bite of solid food (albeit soft) was portobello ravioli, and I

swear it was the best thing I have ever tasted in my life. My last solid food

had been more than a month prior to that, and it tasted like the food of the

gods.

> > >

> > > I had 5 incisions in my abdomen, and they were quite sore for about 2-3

weeks post. The little ends of the internal sutures were visible for about two

months, after which they dissolved and fell off. The scars now are pretty

minimal and actually much less noticeable than I expected.

> > >

> > > For the first 10 weeks post-surgery, I had a much reduced appetite

relative to the " normal " I'd had before everything started. I ate much smaller

portions, felt full very quickly, and had 4 episodes where I regurgitated a

little food (and every time it was because I ate a little too quickly and didn't

chew enough. As I began feeling better, I became less conscious of the act of

eating, and pushed it too far too fast). However, starting in about week 11, I

noticed I was eating more and more easily. By 12 weeks post, I was pretty much

eating everything without problems, and eating like a " normal " person. I was

regaining weight, and was back to normal physical activity.

> > >

> > > For 12 weeks following surgery, my physical activity was severely

restricted - I was not allowed to lift anything more than 5 pounds for 8 weeks,

and nothing more than 10 pounds for the 4 weeks after that. I wasn't allowed to

do anything more than walk during the entire 12 week period. Starting in the

12th week, I resumed normal physical activity, though it was no surprise that I

was essentially completely deconditioned. That was tough, because I am a soccer

player and biker, and had been in superb cardio shape prior to this whole

adventure.

> > >

> > > From the first EGD in May to the lowest point, I lost 44 pounds. Once I

was able to begin eating normally, I started putting back on weight. I've

regained about 20 lbs at this point (about 5 and a half months post surgery).

> > >

> > > For those considering surgery and checking surgeons, I whole-heartedly

recommend Dr. Hagen. Though he isn't the warmest and most endearing of doctors

in terms of bedside manner, the results I achieved were outstanding and I'd

choose to go with him 100 out of 100 times if given the choice again.

> > >

> > > I realize this is a very long post, but if you've read this far, hopefully

it will help you as you try to navigate the uncertain waters of dealing with

achalasia, and give you a sense of what the tests are, what the surgery is like,

and most importantly, what the recovery is like.

> > >

> > > Good luck!

> > >

> >

>

April 26, 2011

Preeti wrote:

>

> ... Does anyone know how many times a surgery can be performed before

> esophagectomy may be required?

>

After a myotomy the typical reasons another surgery would be done is

because the fist on was not complete or needs to be extended, or the

myotomy had regrown or scarred, or a fundoplication had to be taken down

or redone. You can only make a myotomy so complete or extended before

there is no reason to do more. So most likely that would be a one time

redo. The regrowth and scarring don't seem to happen a lot so that is

not something most of us even need to worry about once. One redo on the

fundoplication is probably all that make sense and this is also

something that does not happen much. The big problem with surgery is

that over the years acid reflux tends to become more of a problem. That

can result in esophagitis, scarring, Barrett's and sometimes cancer.

Another thing that can happen is that the esophagus can become sigmoid

(shaped like an S). Sometimes, but not always, at that point the only

thing that can be done it to remove it.

Here is an interesting study. Three groups, group I, with 80 to 119

months of follow-up after surgery (15 patients); group II, with 120 to

239 months follow-up (35 patients); and group III, with more than 240

months follow-up (17 patients). That last group has more than 20 years

of follow-up.

Very Late Results of Esophagomyotomy for Patients With Achalasia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448918/

You can follow the notes in that study for other long-term studies. You

can also find a list of these kind of studies at:

http://www.zotero.org/groups/achalasia_atheneum/items/collection/RRFRKAB6

Hopefully Zotero will behave. It sometimes does not load the pages, but

seems to be working well today. Maybe they fixed it. It didn't like

large collections like the Achalasia Atheneum.

In that study, (above), the three groups look a lot alike, symptom wise,

radiologically and manometrically, except for the problems with acid

reflux. They didn't include 5 esophagectomy patients. I don't know what

their stories are, other than they were sigmoid.

notan

April 26, 2011

Notan,

Thank you for the education on the surgery.Â I got most of it.

I am relieved to analyze that in most cases if surgery goes well the 1st time

and no other complication like scarring and other reasons happen then that could

be close to permanent fix for achalasia for ever (I was under the presumption

that it is good for maximum 20 years and then another surgery or dilation is

need).Â Ofcourse need to remember Cara's advise to keep up with the follow up

tests.

Also, it seems like big % of people get success with the surgery and go on in

life without any further surgery or dilation and may not require

esophagectomy.Â Do I have it correct?

I was so sacred as it sounded like from reading posts that most people needed

2nd surgery or dilation's and eventually ended up with esophagectomy.Â Does age

of the patient play any role in all this research?

Thank you for the explanation.

Priti