Re: Doing Nothing is not an Option - Part 7 - The Second Opinion

[Guest guest]

I’m so glad you found some peace. I wish Dr. Richter

was still over in Cleveland, but the last time I seen Dr. Achkar I really liked

him and I have Dr. Rice here too. I hope I have a long road before I have

to face what you have. I’m really happy that you feel better about

things.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of cynmark24@...

Sent: Monday, August 21, 2006 8:40 AM

achalasia

Cc: pestnsassy@...; .Dempsey@...;

Cynmark24@...

Subject: " Doing Nothing is not an Option " - Part 7

- The Second Opinion

This is the final chapter describing my journey facing an

esophagectomy (E'ectomy), specifically over the last 2 months, but historically

over the last 24 years. For our newbies here, I am 57, developed

achalasia in 1982, 5 dilatations later in 1991 I had an open Heller at s

Hopkins Hospital and nothing since. While living with Achalasia has never been

a walk in the park, I could not complain about my life-style. In January

of this year, I began to retain fluids & foods in my E and had awakening

regurgitations every night. Something had to be done. For the

complete story, please scroll down past today's post.

I saw Dr. Richter this past Thursday morning. Likeable,

self-assured, and (self-admittedly) the authority on achalasis, having trained

under the best, Dr. Hendrix, (coincidentally, my GI doctor for 10

years). This was going to be the doctor who was going to save

me. He asked me why I was here, and I answered him (for an

alternative to an E'ectomy) expecting that whatever it took, he was the

man to do it. I was wrong.

He reviewed my history, took me into the next room and gave me a

tutorial about my esophagus using the Xrays I had brought. My

mega-esophagus goes down to below the level of the stomach, then makes a right

angle, before going back up again to meet the stomach. The LES opening is

tiny. No matter what I do, there will always be rotting food or liquid

sitting there.

Bottom line, he told me " You will want an esophagectomy done

within the next few years, if not sooner. " There are

no practical alternatives. " A Heller will only give you

psychological improvement. " In addition to Dr. Dempsey, he named

four surgeons as the only ones who should do this surgery for me. Dr. Altorki

(the surgeon I saw in NY), Dr. Rice (Cleveland Clinic with whom he worked with

for 10 years, and is the most mentioned surgeon on this Board), Dr. Patti (who

is like God out on the West Coast, and well known to us members), and Dr.

Pellegrini, who is also well documented on this Board, also in California.

achalasia

: Message: Re: article on achalsia - basics.

Lifestyle changes, while always welcomed, will not prevent the need

for the E'ectomy. I did ask him about the stretching of the E, and could

it perforate if it got too stretched. He said it could.

He did tell me something that has been banging around in my head

for years. He revealed that the techniques used in my open Heller in

1991, with Belsey wrap, is not only considered " ancient, " but just

completely wrong, and patients who had it done that way have been returning

with conditions similar to mine. There was nothing that I could have

done, under these circumstances to have prevented it. At the time the

surgery was performed, I was aware that lap surgery was the " surgery of

the future " for A, but that too many surgeons were having trouble

mastering the technique, and I would have been a " guinea pig " for a

lap. At that point with my having a sigmoid esophagus I was told to

go with the " tried and true. " It was the right decision for the

time.

Dr. Richter had given me much of his time, no pressure to rush me

out, and made a " history lesson " of me to his GI fellow, learning

about Achalasia. I have to admit it was interesting being the subject of

how things were done back then, and how things are done now, but I did

feel like a relic. I asked Dr. Richter if there was anything

in the " pipeline " that might help me, and he said " no. "

I asked him if there was any point in waiting around to see

Dr. Dempsey (one of the top thoracic surgeons) 5 hours later. He

said I should. We almost canceled the appointment, to see Dr.

Ravich instead, chief GI doctor of s Hopkins Hospital (who I had seen back

in the early 1990's, under Dr. Hendrix.) We decided to stay (as a

courtesy), expecting nothing different to be said. We were wrong.

My appointment with Dr. Dempsey came as a result of an email I

sent to him the previous Sunday morning, in which he said he could see me

Thursday at 4:30 and that he would set up an appointment with Dr. Richter also

(per my request). One had to be impressed.

While hoping I could be fitted in earlier, all of a sudden at 3:30

he came storming into the waiting room telling us he could no longer see us at

4:30 since he had to operate, and could he see us now? One had to be

impressed.

In his office, " time " stopped. He first told us

that he had not spoken yet with Dr. Richter. No preconceived notions

then. Like Dr. Richter, he reviewed my medical history and Xrays, and

asked me about my weight (213 pounds at 6'1 " ), and had many

questions about my life style, in other words how achalasia was impacting on my

life. Remember, this was now a surgeon. His business is to

" cut. "

Dr. Dempsey offered me 4 alternatives. We knew he wasn't

talking dilatations or botox, but we could not figure out the last one.

He said we could " do nothing, " which he sheepishly said was not

really an option but could be considered one; I could have another Heller

Myotomy, but with limited benefit; I could have an E'ectomy, or something

else.

I came down to Philadelphia pretty well researched, as was my wife

(Cyndee). We were clueless. Slowly he said that he could do an

" esophagoplasty. "

define

esophagoplasty - Google Search

achalasia

esophagoplasty - Google Search

We had never heard of that, nor was it ever mentioned by anybody on

the achalasia board (unless they spelled it wrong) It took us time that

night to even find the term online, not knowing how to spell it (of course we

asked him, but that was the only question of the afternoon that he did not

answer!). He did try explaining, but I would have needed Notan with me to

better understand.

It is an extremely rare operation, more often performed on cancer

patients or people who have suffered acid (as in lye) damage to their esophagus

and required a reconstruction of their esophagus. To achalasia patients

this operation fell out of favor when the open Heller Myotomies became the

" rage " amongst thoracic surgeons. Dr. Dempsey said he had done

a few of them. Naturally, we all know that we want our surgeons to have

performed literally hundreds of these operations before even considering them,

but here was an operation that would take the " bucket " out of my

esophagus, yet leave my esophagus relatively intact!

There probably is no surgeon anywhere who has performed this with

any real frequency, at least not for achalasia.

I will be the first to admit that I really don't know enough about

this operation to start explaining it to the group. All I could say is

that it is the first time I heard of an alternative to an E'ectomy. The

fact that I am sitting across the room from the surgeon who would

also do it was like praying for a miracle, and having it handed to you!

Here's the " kicker, " and it does not start off with the

word " but. " While Dr. Dempsey is a surgeon, the esophagoplasty

did not end up being his first choice of which alternative I should

choose!

His first choice was for me to do nothing! His reasoning is

the following.

Other than having Achalasia, I am in excellent health. He did

not see the bucket esophagus as something life threatening, nor did he think

the esophagus would perforate from additional stretching. He saw nothing

wrong with my regurgitating before going to sleep (if needed) as long as I

took care of my teeth, and saw no harm in food going the other way

(upward) since the esophagus was only a conduit now and did not

function. Earlier in the week I spoke with my cardiologist and showed him

my Xrays and was told that he saw no future danger of the E crowding out the

heart. (I see a cardiologist because of my family history and high

cholesterol, well controlled by Lipitor, but not due to any heart problem)

Dr. Dempsey went on to say (in so many words), Why take a person

who is relatively healthy and subject him to a horrible operation, with so many

potential things that can go wrong, and a recovery period that can be in from

one to two years all problems considered, and can still leave you worse

off as to how you feel now. This is not to say that the operation does

not serve a good purpose. Like anything else, the condition of the

patient before choosing the surgery must be considered.I thought of , our

senior esophagectomy member who is dealing so well, and who recently had

it done and shared with us his experience.

There are no guarantees that come with this operation, nor

any operation. Why subject myself to it when there are so many inherent

risks, and when we talk mortality here, it can range from 2 to 5% or

higher. Remember, we are the ones who got achalasia in the first place

with a chance of .001% (1 in 100,000). A 2% mortality rate is 2,000 times

greater. In other words, we have a 2,000 times greater chance of dying

from an esophagectomy than we did from getting achalasia in the first

place!

Dr. Dempsey's conclusions were that if I can continue living the

way I am, then I should not have any surgery at all. Life style changes

will not improve the condition of my esophagus, but may possibly slow down its

decline. An esophagoplasty would be his first choice to perform, and

waiting to do it would not compromise the results. The bucket in my

esophagus is being supported by my diaphragm as far as its continuing to

sink.

I canceled my appoinment to see my 1991 surgeon scheduled for the

next morning in Baltimore.

For the E'ectomy sub-group here, I am much more than satisfied with

my visit to Dr. Dempsey. I feel alive and invigorated by what he

said. He is not only an exceptional surgeon, but an incredible human

being. I have a deep respect for anyone who could financially

benefit themselves but chooses to give advice from the heart instead.

Dr. Richter ended the guilt I have felt for so many years regarding

my conditon, and Dr. Dempsey gave me a future I did not think I had. I am

deeply indebted to both of them.

Dempsey, MD, F.A.C.S.

S. s, MD and Louise C. s

Chair

in Surgery

Specialty interests: Gastrointestinal surgery, laparoscopic surgery

Email: .Dempsey@...

Appointments:

215-707-3133

Department:

215-707-3133

Location:

Parkinson Pavilion, Fourth Floor

Broad and Tioga Streets

Philadelphia, PA 19140

Temple

University School of Medicine

Richter, MD

Chairman, Department of Medicine

Professor, Medicine

Telephone: 215-707-5069

FAX: 215-707-4756

Email: jrichter@...

---------------------------------------------------------------

" Doing Nothing

is not an Option " - Part 1 - Background Info (Posted

July 5, 2006)

Since January 2006 I have been posting here. Having suffered since

Feb

1982, with an open

Heller with Fundo in Dec 1991, I came here to share

experiences with

others. I have learned much from my fellow Achalasians. Much of what has

transpired, has been communicating with new sufferers and sharing experiences

hoping that it might be helpful.

While this should

continue as new people come to this Board for help, my

own situation has

suddenly changed.

3 years after I had my

surgery, my GI doctor (who I virtually

worshipped, Dr.

Hendrix) retired. With nobody of his caliber to take his place I stopped doing

my annual trek from New York to Baltimore, while at the same time, felt good

enough that I did not need to start " trying out " doctors in my home

area of Long Island, NY (not shabby, and just outside New York City).

Over the years I

always needed soda to get the food down, suffered

pneumonia once from

aspirating, experienced plenty of isolated

incidences where I

felt I was just a breath away from my last as food

and liquid got stuck,

and of course the famous (heart attack) spasms

that most of us learn

to deal with.

I viewed myself as the

person with the successful surgery, who after

nearly 15 years was

still doing great!

About 5 months ago,

the isolated episodes became regular episodes, where I could no longer sleep.

Regurgitations through the night, every night, became the rule. Most meals I

could get through, but it was becoming more difficult, and it took more soda to

" send it thru. "

Recalling our group

mantra, " Doing nothing is not an option, " I finally

called my wife's

former gastroenterologist, who specializes in

Achalasia. I had to

wait nearly 2 months for an appointment. A

consultation is

scheduled for tomorrow, and an endoscopy for Monday.

More recently I have

slept better by forcing up whatever is in my

esophagus before going

to sleep. (This is not the direction I want to

go).

Since we all benefit

from sharing information with each other, good,

bad, or otherwise, I

will report back the findings.

---------------------------------------------------------------

" Doing Nothing is not an Option " - Part 2 - The

Consultation (Posted July 7, 2006)

Yesterday I had my consultation with Dr. Brody. Even though we have

known each other for

years (through my wife's GERD), it was the first

time we met as

doctor/patient. She wanted to get to know me, my

symptoms, and my

medical history, in advance of Monday's endoscopy.

There was no

examination, nor did I expect one.

My 370 page medical

history from s Hopkins (1984 - 1994) was

filtered down to

around 110 pages and made for some eye-opening reading while I awaited my

appointment. I always felt somewhat ignorant in this group not knowing the name

of the wrap I had, plus being unsure how many dilatations I had (how can one

forget!) If there was one thing I learned from yesterday, we all should have

access to our detailed medical histories. There was much in there that

I was not aware of. Apparently, and maybe with the best of intentions,

doctors only tell you what they believe you should know. Having a friend who

thinks she has Cancer every time she has a new pain, I will admit that it is

sometimes in the patient's best interest that they are not told everything.

Based upon the

symptoms I described to Dr. Brody, she felt that I will

need on Monday a minor

dilatation, to clear away possible scar tissue

and a possible

narrowing in the LES.

---------------------------------------------------------------

" Doing Nothing is Not an Option " - Part 3 - the

Endoscopy (Posted July 10, 2006)

I am still amazed as to what propofol (the injected anesthesia)

does.

One moment I am on my

side with the " holder " in my mouth for the

endoscope waiting for

the injection, and then a " moment " later I am

still on my side, but

in a different room, and the endoscopy is finished

almost " before it

began. " Awesome stuff.

The good news was that

there was no Barrett's, no significant scar

tissue, no ulcers, no

growths. The bad news, and its only preliminary,

is that the esophagus

has gotten sigmoid in shape, grossly dilated, and

appears to have

" sunk " down lower than the stomach. Look at the piping

beneath your

bathroom sink. Most pipes go down low, and then come back up again

before exiting the room. That's my E, lower than my stomach. This would

explain all the middle of the night spontaneous

regurgitations I had

been suffering from, and why doing my own

regurgitation before

going to sleep, allowed me to sleep through the

night.

Dr. Brody mentioned

esophagectomy to me, but was not suggesting it

(yet). I need to get

the name of it, but there is a surgery where the

esophagus is pulled up

(probably like a marionette), and then there is

also the esophageal

resectioning.

Oh, and while she was

in there she did a minor dilatation hopefully to

give me some relief.

---------------------------------------------------------------

" Doing nothing is not an option " - Part 4 - The Barium

Swallow (Posted July 12, 2006)

,

As you know I have

always had a great interest and feeling for you and

what you have gone

through, and what you are facing. I just never

thought that I would

be facing a similar decision in the near future.

After reading your

message below, I feel very strongly connected to you.

Tragedies, disasters

and common health crises are very strong forces

that bring people of

distant origins very close together, forming an

exceptionally strong

bond. I had not heard from you for a while and was

wondering where you

were in your " journey? "

Today's barium swallow

was, of course, a piece of cake (I wish it was

cake). It just struck

me as kind of ironic that when I am lying on my

back when the tests

are finished, that I am told to to just stay there

while they review the

photos to see if anymore photos need to be done.

HELLO! I have

Achalasia, and you know it. You don't tell me to stay on

my back right after I

drank a liter of that poison! Ok, so without

further do I just sat

up and waited. 10 minutes later he came back that

it was all OK.

I got glimpses of my

esophagus on the screen while the tests were

performed, and it

didn't look like any esophagus that I've ever seen.

The radiologist would

not commit to saying that I had a mega-esophagus.

Its strange. I know

that I am not in a good situation at the moment.

What bothers me the

most going forward is the anticipation of what my

gastro doc is going to

say to me on Friday. Like knowing you are going

to get a bad report

card...you know its coming, but you can't bear to

hear the words

" You failed! " or " you've got one helluva gross esophagus

that's going to need

surgery like you've never had before! "

In my saner moments

right now, I know that I will be extremely upset at

first, then depressed,

will think about it, collect myself, then go

forward. Except for

the " anger " part does that sound anything like the

emotional stages one

goes thru when they are told that they are going to

die? Nobody is dying

over here, but the emotional stages remind me of

it.

, thank you so

much for your words. It really is amazing what a

therapeutic effect

they can have.

My dear friend, Lilac

Ann convinced me to go public with all of this

when I first started

facing it. For many reasons I now agree with her.

---------------------------------------------------------------

" Doing nothing is not an option " - Part 5 - Barium

Results (Posted July 14, 2006)

I think I have to take my understanding of achalasia to a new

level,

after hearing the

results of my barium swallow. If someone is reading

this

" series " for the first time, the previous four parts have been

copied below.

We are all here

because of a common " interest " that has been thrust upon us or a

family member. I might be joining the " group within the group " where

the word " esophagectomy " has been coming up much more recently.

My gastroenterologist

told me a few minutes ago that my esophagus has

become like a

" second stomach, " or like a " big bucket " in my chest. She

used the term

" burnt out achalasia. " Needless to say that I have a

sigmoid esophagus,

where the lower part of my esophagus then has to

travel upward to

connect to the stomach causing food and liquid

particles to sit there

until the next round of food and liquids comes

thru, explaining why I

have become such a good regurgitator before I go

to sleep (though the

recent dilatation has helped a little).

Dr. Brody used the

words again " Pexy Esophageal Diverticulum " which I

must look up. It

relates to an operation having to do with removing a

pouch that has formed.

Also mentioned was an esophagel resectioning

using some relatively

new tools such as esophageal surgical stapling to

reduce the size of the

esophagus. Question also is how thin are the

walls of my esophagus

and how much surgery can those walls take and

maintain their

integrity.

After reading 's

post to me last night I feel a little better than

I would have felt

without her encouragement. I'm human, this has

depressed me and upset

me. I also found out that the company that has

the films of my

barium, in the process of moving to a new location,

cannot find the film.

They just sent the report to my doctor.

I have discovered

since starting these posts something that I knew all

along, how many

wonderful and supportive people there are here, and how grateful I am to have

all of you in my time of need.

---------------------------------------------------------------

" Doing nothing is

not an option " - Part 6 - The Surgeon Appointment (Posted

August 1, 2006)

Since its no secret I have trouble getting

to the point sometimes, let's

cut to the chase then

back it up. The surgeon told me today that there

are no alternatives

for me, that I must have an esophagectomy, and a

near total one at

that. I will, of course go for 2nd, 3rd, whatever it

takes, opinions. I

will be setting up an appointment with my heller

myotomy surgeon in

Baltimore in the near future. I would like to stop

off in Philadelphia on

the way back. If anyone of you has the name of a

surgeon you would

unequivocably recommend to me on the way back from Baltimore to NY, please help

me in that respect. Philadelphia, in

particular. Btw,

anyone reading this who has not read the posts

preceding this one

(Parts 1 -5), they have been copied/pasted below.

Dr. Altorki, of NY

Hospital, told me that an HM at this point would be

of limited value and

then I would still have to have the E-ectomy done

(sound like something

in NY once said). I could have the surgery

this September (10

days in the hospital and 8 weeks to recuperate), or a

year from now. Other

body parts would not be affected in the interim,

and what's damaged with

me will be getting removed anyway. So, it seems that a relatively short wait

won't harm me. I can also wait a year,

give or take, and see

what the latest is in the surgical " green room. "

Those of you (Ed, and

others) who have had their E-ectomies done, I'd

appreciate if you

could tell me the name of your surgeon, where located,

and if you were

satisfied with how the whole " process " worked out.

Emotionally, I am

coping alright, looking forward to the day when I can tell people that I no

longer have achalasia! (and they'll say to me, " I thought you told me

there was no cure for it? " ). Sorry, " achalasia " humor again. You

esophagectomy alumni, if you want to share the wisdom of your experiences with

me, preferably on the Boards, I'm all ears. While I know I have helped a couple

of people here with their difficulties, I am somewhat troubled by the fact that

" how can I technically give any advice to anyone when I ended up

having my esophagus removed? " You don't see a person who crashed there car

giving drivers ed lessons, do you? There is something wrong there. I just

haven't figured it out yet.

[Guest guest]

,

I'm glad your journey has come together with a peaceful result for

you. It's been a long and tiring road and it's great that you have

some answers now. Thank you for sharing your experiences, they have

been informative and inspiring. Dr Dempsey seems like a great

surgeon, I like that he weighed the outcome of surgery v.s. risk's of

surgery. I'm very happy for you !

in Michigan

[Guest guest]

His first choice was for me to do nothing! Isn't it strange that sometimes doing nothing really is an option! Thank you for sharing the amazing amount of information you garnered in your quest. While I have thankfully not prgressed to the same level as you - and the other e-gectomy members - I have been following your story closely. This is all really good stuff to store in the memory banks if the day ever comes.mike in WI

Get your email and more, right on the new .com

[Guest guest]

Yes - Thank you for sharing you experiences with us. You too

have offered much needed and very valuable information to this

group.I wish you all the best !!!!-

-- In achalasia , mike in WI <dtfanx@...> wrote:

>

> His first choice was for me to do nothing!

>

> Isn't it strange that sometimes doing nothing really is an

option! Thank you for sharing the amazing amount of information you

garnered in your quest. While I have thankfully not prgressed to

the same level as you - and the other e-gectomy members - I have

been following your story closely. This is all really good stuff to

store in the memory banks if the day ever comes.

>

>

> mike in WI

>

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

> Get your email and more, right on the new .com

>

[Guest guest]

,

I am delighted that you have had this burden lifted, and can breathe a little easier. It is rare, but very uplifting to find a Dr. (Surgeon) who is forthright and honest. It is also rare to have people like yourself and Notan who do this research and present it to this to group so well. We are lucky to have both of you.

F

Attachment: vcard [not shown]

[Guest guest]

,

I am very happy for you. Sounds like you got great news from Dr.

Dempsey. Thank you for sharing all the information with us.

I am sorry to hear that you were feeling guilty about your

present condition. Seems as though you did everything you could.

So, I am glad it sounds as though the guilt has lessened.

Vicki (recoverying well after my lap myotomy)

>

>

> This is the final chapter describing my journey facing an

esophagectomy

> (E'ectomy), specifically over the last 2 months, but historically

over the last

> 24 years. For our newbies here, I am 57, developed achalasia in

1982, 5

> dilatations later in 1991 I had an open Heller at s Hopkins

Hospital and

> nothing since. While living with Achalasia has never been a walk

in the park, I

> could not complain about my life-style. In January of this year,

I began to

> retain fluids & foods in my E and had awakening regurgitations

every night.

> Something had to be done. For the complete story, please scroll

down past

> today's post.

>

> I saw Dr. Richter this past Thursday morning. Likeable,

self-assured,

> and (self-admittedly) the authority on achalasis, having trained

under the

> best, Dr. Hendrix, (coincidentally, my GI doctor for 10

years). This

> was going to be the doctor who was going to save me. He asked me

why I was

> here, and I answered him (for an alternative to an E'ectomy)

expecting that

> whatever it took, he was the man to do it. I was wrong.

>

> He reviewed my history, took me into the next room and gave me a

tutorial

> about my esophagus using the Xrays I had brought. My mega-

esophagus goes down

> to below the level of the stomach, then makes a right angle,

before going

> back up again to meet the stomach. The LES opening is tiny. No

matter what I

> do, there will always be rotting food or liquid sitting there.

>

> Bottom line, he told me " You will want an esophagectomy done

within the next

> few years, if not sooner. " There are no practical

alternatives. " A Heller

> will only give you psychological improvement. " In addition to

Dr. Dempsey,

> he named four surgeons as the only ones who should do this

surgery for me.

> Dr. Altorki (the surgeon I saw in NY), Dr. Rice (Cleveland Clinic

with whom he

> worked with for 10 years, and is the most mentioned surgeon on

this Board),

> Dr. Patti (who is like God out on the West Coast, and well known

to us

> members), and Dr. Pellegrini, who is also well documented on this

Board, also in

> California.

>

> _achalasia : Message: Re: article on achalsia -

basics._

> (achalasia/message/35171)

>

> Lifestyle changes, while always welcomed, will not prevent the

need for the

> E'ectomy. I did ask him about the stretching of the E, and could

it

> perforate if it got too stretched. He said it could.

>

> He did tell me something that has been banging around in my head

for years.

> He revealed that the techniques used in my open Heller in 1991,

with Belsey

> wrap, is not only considered " ancient, " but just completely

wrong, and

> patients who had it done that way have been returning with

conditions similar to

> mine. There was nothing that I could have done, under these

circumstances to

> have prevented it. At the time the surgery was performed, I was

aware that

> lap surgery was the " surgery of the future " for A, but that too

many surgeons

> were having trouble mastering the technique, and I would have

been a " guinea

> pig " for a lap. At that point with my having a sigmoid esophagus

I was told

> to go with the " tried and true. " It was the right decision for

the time.

>

> Dr. Richter had given me much of his time, no pressure to rush me

out, and

> made a " history lesson " of me to his GI fellow, learning about

Achalasia. I

> have to admit it was interesting being the subject of how things

were done

> back then, and how things are done now, but I did feel like a

relic. I asked

> Dr. Richter if there was anything in the " pipeline " that might

help me, and he

> said " no. "

>

> I asked him if there was any point in waiting around to see Dr.

Dempsey (one

> of the top thoracic surgeons) 5 hours later. He said I

should. We almost

> canceled the appointment, to see Dr. Ravich instead, chief GI

doctor of

> s Hopkins Hospital (who I had seen back in the early 1990's,

under Dr.

> Hendrix.) We decided to stay (as a courtesy), expecting nothing

different to be

> said. We were wrong.

>

> My appointment with Dr. Dempsey came as a result of an email I

sent to him

> the previous Sunday morning, in which he said he could see me

Thursday at 4:30

> and that he would set up an appointment with Dr. Richter also

(per my

> request). One had to be impressed.

>

> While hoping I could be fitted in earlier, all of a sudden at

3:30 he came

> storming into the waiting room telling us he could no longer see

us at 4:30

> since he had to operate, and could he see us now? One had to be

impressed.

>

> In his office, " time " stopped. He first told us that he had not

spoken yet

> with Dr. Richter. No preconceived notions then. Like Dr.

Richter, he

> reviewed my medical history and Xrays, and asked me about my

weight (213 pounds at

> 6'1 " ), and had many questions about my life style, in other words

how

> achalasia was impacting on my life. Remember, this was now a

surgeon. His

> business is to " cut. "

>

> Dr. Dempsey offered me 4 alternatives. We knew he wasn't talking

> dilatations or botox, but we could not figure out the last one.

He said we could " do

> nothing, " which he sheepishly said was not really an option but

could be

> considered one; I could have another Heller Myotomy, but with

limited benefit; I

> could have an E'ectomy, or something else.

>

> I came down to Philadelphia pretty well researched, as was my

wife (Cyndee).

> We were clueless. Slowly he said that he could do

an " esophagoplasty. "

>

> _define esophagoplasty - Google Search_

> (http://www.google.com/search?hl=en & ie=ISO-8859-

1 & q=define+esophagoplasty & btnG=Google+Search)

>

> _achalasia esophagoplasty - Google Search_

> (http://www.google.com/search?hl=en & lr= & ie=ISO-8859-

1 & q=achalasia+esophagoplasty & btnG=Search)

>

> We had never heard of that, nor was it ever mentioned by anybody

on the

> achalasia board (unless they spelled it wrong) It took us time

that night to

> even find the term online, not knowing how to spell it (of course

we asked him,

> but that was the only question of the afternoon that he did not

answer!). He

> did try explaining, but I would have needed Notan with me to

better

> understand.

>

> It is an extremely rare operation, more often performed on cancer

patients

> or people who have suffered acid (as in lye) damage to their

esophagus and

> required a reconstruction of their esophagus. To achalasia

patients this

> operation fell out of favor when the open Heller Myotomies became

the " rage "

> amongst thoracic surgeons. Dr. Dempsey said he had done a few of

them. Naturally,

> we all know that we want our surgeons to have performed literally

hundreds

> of these operations before even considering them, but here was an

operation

> that would take the " bucket " out of my esophagus, yet leave my

esophagus

> relatively intact!

> There probably is no surgeon anywhere who has performed this with

any real

> frequency, at least not for achalasia.

>

> I will be the first to admit that I really don't know enough

about this

> operation to start explaining it to the group. All I could say

is that it is the

> first time I heard of an alternative to an E'ectomy. The fact

that I am

> sitting across the room from the surgeon who would also do it was

like praying

> for a miracle, and having it handed to you!

>

> Here's the " kicker, " and it does not start off with the

word " but. " While

> Dr. Dempsey is a surgeon, the esophagoplasty did not end up being

his first

> choice of which alternative I should choose!

>

> His first choice was for me to do nothing! His reasoning is the

following.

> Other than having Achalasia, I am in excellent health. He did

not see the

> bucket esophagus as something life threatening, nor did he think

the esophagus

> would perforate from additional stretching. He saw nothing wrong

with my

> regurgitating before going to sleep (if needed) as long as I took

care of my

> teeth, and saw no harm in food going the other way (upward) since

the esophagus

> was only a conduit now and did not function. Earlier in the week

I spoke

> with my cardiologist and showed him my Xrays and was told that he

saw no future

> danger of the E crowding out the heart. (I see a cardiologist

because of my

> family history and high cholesterol, well controlled by Lipitor,

but not due

> to any heart problem)

>

> Dr. Dempsey went on to say (in so many words), Why take a person

who is

> relatively healthy and subject him to a horrible operation, with

so many

> potential things that can go wrong, and a recovery period that can

be in from one to

> two years all problems considered, and can still leave you worse

off as to

> how you feel now. This is not to say that the operation does not

serve a good

> purpose. Like anything else, the condition of the patient before

choosing

> the surgery must be considered.I thought of , our senior

esophagectomy

> member who is dealing so well, and who recently had it done

and shared

> with us his experience.

>

> There are no guarantees that come with this operation, nor any

operation.

> Why subject myself to it when there are so many inherent risks,

and when we

> talk mortality here, it can range from 2 to 5% or higher.

Remember, we are

> the ones who got achalasia in the first place with a chance

of .001% (1 in

> 100,000). A 2% mortality rate is 2,000 times greater. In other

words, we have a

> 2,000 times greater chance of dying from an esophagectomy than we

did from

> getting achalasia in the first place!

>

> Dr. Dempsey's conclusions were that if I can continue living the

way I am,

> then I should not have any surgery at all. Life style changes

will not

> improve the condition of my esophagus, but may possibly slow down

its decline. An

> esophagoplasty would be his first choice to perform, and waiting

to do it

> would not compromise the results. The bucket in my esophagus is

being supported

> by my diaphragm as far as its continuing to sink.

>

> I canceled my appoinment to see my 1991 surgeon scheduled for the

next

> morning in Baltimore.

>

> For the E'ectomy sub-group here, I am much more than satisfied

with my visit

> to Dr. Dempsey. I feel alive and invigorated by what he said.

He is not

> only an exceptional surgeon, but an incredible human being. I

have a deep

> respect for anyone who could financially benefit themselves but

chooses to give

> advice from the heart instead.

>

> Dr. Richter ended the guilt I have felt for so many years

regarding my

> conditon, and Dr. Dempsey gave me a future I did not think I

had. I am deeply

> indebted to both of them.

>

>

>

> Dempsey, MD, F.A.C.S.

> S. s, MD and Louise C. s Chair

> in Surgery

> Specialty interests: Gastrointestinal surgery, laparoscopic

surgery

> Email: _.Dempsey@..._

> (mailto:.Dempsey@...)

> Appointments: 215-707-3133 Department: 215-707-3133 Location:

> Parkinson Pavilion, Fourth Floor

> Broad and Tioga Streets

> Philadelphia, PA 19140

>

>

>

> _Temple University School of Medicine_

> (http://www.temple.edu/medicine/faculty/r/richterj.htm)

>

> Richter, MD

> Chairman, Department of Medicine

> Professor, Medicine

> Telephone: 215-707-5069

> FAX: 215-707-4756

> Email: _jrichter@..._ (mailto:jrichter@...)

>

>

>

>

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

> " Doing Nothing is not an Option " - Part 1 - Background Info

(Posted July 5,

> 2006)

>

>

> Since January 2006 I have been posting here. Having suffered

since Feb

> 1982, with an open Heller with Fundo in Dec 1991, I came here to

share

> experiences with others. I have learned much from my fellow

Achalasians.

> Much of what has transpired, has been communicating with new

sufferers and

> sharing experiences hoping that it might be helpful.

>

> While this should continue as new people come to this Board for

help, my

> own situation has suddenly changed.

>

> 3 years after I had my surgery, my GI doctor (who I virtually

> worshipped, Dr. Hendrix) retired. With nobody of his

caliber to take

> his place I stopped doing my annual trek from New York to

Baltimore, while at

> the same time, felt good enough that I did not need to

start " trying out "

> doctors in my home area of Long Island, NY (not shabby, and just

outside New

> York City).

>

> Over the years I always needed soda to get the food down, suffered

> pneumonia once from aspirating, experienced plenty of isolated

> incidences where I felt I was just a breath away from my last as

food

> and liquid got stuck, and of course the famous (heart attack)

spasms

> that most of us learn to deal with.

>

> I viewed myself as the person with the successful surgery, who

after

> nearly 15 years was still doing great!

>

> About 5 months ago, the isolated episodes became regular

episodes, where I

> could no longer sleep. Regurgitations through the night, every

night, became

> the rule. Most meals I could get through, but it was becoming

more difficult,

> and it took more soda to " send it thru. "

>

> Recalling our group mantra, " Doing nothing is not an option, " I

finally

> called my wife's former gastroenterologist, who specializes in

> Achalasia. I had to wait nearly 2 months for an appointment. A

> consultation is scheduled for tomorrow, and an endoscopy for

Monday.

> More recently I have slept better by forcing up whatever is in my

> esophagus before going to sleep. (This is not the direction I

want to

> go).

>

> Since we all benefit from sharing information with each other,

good,

> bad, or otherwise, I will report back the findings.

>

>

>

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

> " Doing Nothing is not an Option " - Part 2 - The Consultation

(Posted July 7,

> 2006)

>

>

> Yesterday I had my consultation with Dr. Brody. Even though we

have

> known each other for years (through my wife's GERD), it was the

first

> time we met as doctor/patient. She wanted to get to know me, my

> symptoms, and my medical history, in advance of Monday's

endoscopy.

> There was no examination, nor did I expect one.

>

> My 370 page medical history from s Hopkins (1984 - 1994) was

> filtered down to around 110 pages and made for some eye-opening

reading

> while I awaited my appointment. I always felt somewhat ignorant

in this group not

> knowing the name of the wrap I had, plus being unsure how many

dilatations I

> had (how can one forget!) If there was one thing I learned from

yesterday,

> we all should have access to our detailed medical histories.

There was much in

> there that I was not aware of. Apparently, and maybe with the

best of

> intentions, doctors only tell you what they believe you should

know. Having a

> friend who thinks she has Cancer every time she has a new pain, I

will admit that

> it is sometimes in the patient's best interest that they are not

told

> everything.

>

> Based upon the symptoms I described to Dr. Brody, she felt that I

will

> need on Monday a minor dilatation, to clear away possible scar

tissue

> and a possible narrowing in the LES.

>

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

>

> " Doing Nothing is Not an Option " - Part 3 - the Endoscopy (Posted

July 10,

> 2006)

>

>

>

> I am still amazed as to what propofol (the injected anesthesia)

does.

> One moment I am on my side with the " holder " in my mouth for the

> endoscope waiting for the injection, and then a " moment " later I

am

> still on my side, but in a different room, and the endoscopy is

finished

> almost " before it began. " Awesome stuff.

>

> The good news was that there was no Barrett's, no significant scar

> tissue, no ulcers, no growths. The bad news, and its only

preliminary,

> is that the esophagus has gotten sigmoid in shape, grossly

dilated, and

> appears to have " sunk " down lower than the stomach. Look at the

piping

> beneath your bathroom sink. Most pipes go down low, and then

come back up

> again before exiting the room. That's my E, lower than my

stomach. This

> would explain all the middle of the night spontaneous

> regurgitations I had been suffering from, and why doing my own

> regurgitation before going to sleep, allowed me to sleep through

the

> night.

>

> Dr. Brody mentioned esophagectomy to me, but was not suggesting it

> (yet). I need to get the name of it, but there is a surgery where

the

> esophagus is pulled up (probably like a marionette), and then

there is

> also the esophageal resectioning.

>

> Oh, and while she was in there she did a minor dilatation

hopefully to

> give me some relief.

>

>

>

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

>

> " Doing nothing is not an option " - Part 4 - The Barium Swallow

(Posted July

> 12, 2006)

>

> ,

>

> As you know I have always had a great interest and feeling for

you and

> what you have gone through, and what you are facing. I just never

> thought that I would be facing a similar decision in the near

future.

> After reading your message below, I feel very strongly connected

to you.

> Tragedies, disasters and common health crises are very strong

forces

> that bring people of distant origins very close together, forming

an

> exceptionally strong bond. I had not heard from you for a while

and was

> wondering where you were in your " journey? "

>

> Today's barium swallow was, of course, a piece of cake (I wish it

was

> cake). It just struck me as kind of ironic that when I am lying

on my

> back when the tests are finished, that I am told to to just stay

there

> while they review the photos to see if anymore photos need to be

done.

> HELLO! I have Achalasia, and you know it. You don't tell me to

stay on

> my back right after I drank a liter of that poison! Ok, so without

> further do I just sat up and waited. 10 minutes later he came

back that

> it was all OK.

>

> I got glimpses of my esophagus on the screen while the tests were

> performed, and it didn't look like any esophagus that I've ever

seen.

> The radiologist would not commit to saying that I had a mega-

esophagus.

>

> Its strange. I know that I am not in a good situation at the

moment.

> What bothers me the most going forward is the anticipation of

what my

> gastro doc is going to say to me on Friday. Like knowing you are

going

> to get a bad report card...you know its coming, but you can't

bear to

> hear the words " You failed! " or " you've got one helluva gross

esophagus

> that's going to need surgery like you've never had before! "

>

> In my saner moments right now, I know that I will be extremely

upset at

> first, then depressed, will think about it, collect myself, then

go

> forward. Except for the " anger " part does that sound anything

like the

> emotional stages one goes thru when they are told that they are

going to

> die? Nobody is dying over here, but the emotional stages remind

me of

> it.

>

> , thank you so much for your words. It really is amazing

what a

> therapeutic effect they can have.

>

> My dear friend, Lilac Ann convinced me to go public with all of

this

> when I first started facing it. For many reasons I now agree

with her.

>

>

>

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

>

> " Doing nothing is not an option " - Part 5 - Barium Results

(Posted July 14,

> 2006)

>

>

> I think I have to take my understanding of achalasia to a new

level,

> after hearing the results of my barium swallow. If someone is

reading

> this " series " for the first time, the previous four parts have

been

> copied below.

>

> We are all here because of a common " interest " that has been

thrust upon us

> or a family member. I might be joining the " group within the

group " where the

> word " esophagectomy " has been coming up much more recently.

>

> My gastroenterologist told me a few minutes ago that my esophagus

has

> become like a " second stomach, " or like a " big bucket " in my

chest. She

> used the term " burnt out achalasia. " Needless to say that I have a

> sigmoid esophagus, where the lower part of my esophagus then has

to

> travel upward to connect to the stomach causing food and liquid

> particles to sit there until the next round of food and liquids

comes

> thru, explaining why I have become such a good regurgitator before

I go

> to sleep (though the recent dilatation has helped a little).

>

> Dr. Brody used the words again " Pexy Esophageal Diverticulum "

which I

> must look up. It relates to an operation having to do with

removing a

> pouch that has formed. Also mentioned was an esophagel

resectioning

> using some relatively new tools such as esophageal surgical

stapling to

> reduce the size of the esophagus. Question also is how thin are

the

> walls of my esophagus and how much surgery can those walls take

and

> maintain their integrity.

>

> After reading 's post to me last night I feel a little

better than

> I would have felt without her encouragement. I'm human, this has

> depressed me and upset me. I also found out that the company that

has

> the films of my barium, in the process of moving to a new

location,

> cannot find the film. They just sent the report to my doctor.

>

> I have discovered since starting these posts something that I

knew all

> along, how many wonderful and supportive people there are here,

and how

> grateful I am to have all of you in my time of need.

>

>

>

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

> " Doing nothing is not an option " - Part 6 - The Surgeon

Appointment (Posted

> August 1, 2006)

>

>

> Since its no secret I have trouble getting to the point

sometimes, let's

> cut to the chase then back it up. The surgeon told me today that

there

> are no alternatives for me, that I must have an esophagectomy,

and a

> near total one at that. I will, of course go for 2nd, 3rd,

whatever it

> takes, opinions. I will be setting up an appointment with my

heller

> myotomy surgeon in Baltimore in the near future. I would like to

stop

> off in Philadelphia on the way back. If anyone of you has the

name of a

> surgeon you would unequivocably recommend to me on the way back

from

> Baltimore to NY, please help me in that respect. Philadelphia, in

> particular. Btw, anyone reading this who has not read the posts

> preceding this one (Parts 1 -5), they have been copied/pasted

below.

> Dr. Altorki, of NY Hospital, told me that an HM at this point

would be

> of limited value and then I would still have to have the E-ectomy

done

> (sound like something in NY once said). I could have the

surgery

> this September (10 days in the hospital and 8 weeks to

recuperate), or a

> year from now. Other body parts would not be affected in the

interim,

> and what's damaged with me will be getting removed anyway. So, it

seems that

> a relatively short wait won't harm me. I can also wait a year,

> give or take, and see what the latest is in the surgical " green

room. "

> Those of you (Ed, and others) who have had their E-ectomies done,

I'd

> appreciate if you could tell me the name of your surgeon, where

located,

> and if you were satisfied with how the whole " process " worked

out.

> Emotionally, I am coping alright, looking forward to the day when

I can tell

> people that I no longer have achalasia! (and they'll say to

me, " I thought

> you told me there was no cure for it? " ). Sorry, " achalasia " humor

again. You

> esophagectomy alumni, if you want to share the wisdom of your

experiences with

> me, preferably on the Boards, I'm all ears. While I know I have

helped a

> couple of people here with their difficulties, I am somewhat

troubled by the

> fact that " how can I technically give any advice to anyone when I

ended up

> having my esophagus removed? " You don't see a person who crashed

there car giving

> drivers ed lessons, do you? There is something wrong there. I

just haven't

> figured it out yet.

>

>

>

[Guest guest]

Hello . What a day you had!

wrote:

He revealed that the

techniques used in my open Heller in 1991, with Belsey wrap, is not

only considered "ancient," but just completely wrong, and patients who

had it done that way have been returning with conditions similar to

mine.

How timely that you have this information. I have been wondering about

the Belsey fundoplication as it relates to VATS.

We had never heard of

that, nor was it ever mentioned by anybody on the achalasia board

(unless they spelled it wrong) ...

It was probably never mentioned. The closest to it would be: cardioplasty also called esophagocardioplasty.

"Cardio" in this case refers to the LES and "plasty" means molding or

forming surgically. So, esophagoplasty is the forming or reforming of

an esophagus, or part of it, such as "a defect in the wall of the

esophagus." See: message 24045,

achalasia/message/24045

notan

[Guest guest]

,

I read your post twice...after reading this,

I feel that Dr.Dempsey is simply fantastic ..

He clearly seems to be the best doctor

For your case...

I wish you all the best...

Mukesh

" Doing Nothing is not an Option " - Part 7 - The Second

Opinion

This is the final chapter describing my journey facing an esophagectomy

(E'ectomy), specifically over the last 2 months, but historically over the last

24 years. For our newbies here, I am 57, developed achalasia in 1982, 5

dilatations later in 1991 I had an open Heller at s Hopkins Hospital and

nothing since. While living with Achalasia has never been a walk in the park, I

could not complain about my life-style. In January of this year, I began to

retain fluids & foods in my E and had awakening regurgitations every night

Something had to be done. For the complete story, please scroll down past

today's post.

I saw Dr. Richter this past Thursday morning. Likeable, self-assured,

and (self-admittedly) the authority on achalasis, having trained under the

best, Dr. Hendrix, (coincidentally, my GI doctor for 10 years). This

was going to be the doctor who was going to save me. He asked me why I was

here, and I answered him (for an alternative to an E'ectomy) expecting that

whatever it took, he was the man to do it. I was wrong.

He reviewed my history, took me into the next room and gave me a tutorial

about my esophagus using the Xrays I had brought. My mega-esophagus goes down

to below the level of the stomach, then makes a right angle, before going

back up again to meet the stomach. The LES opening is tiny. No matter what I

do, there will always be rotting food or liquid sitting there.

Bottom line, he told me " You will want an esophagectomy done within the next

few years, if not sooner. " There are no practical alternatives. " A Heller

will only give you psychological improvement. " In addition to Dr. Dempsey,

he named four surgeons as the only ones who should do this surgery for me.

Dr. Altorki (the surgeon I saw in NY), Dr. Rice (Cleveland Clinic with whom he

worked with for 10 years, and is the most mentioned surgeon on this Board),

Dr. Patti (who is like God out on the West Coast, and well known to us

members), and Dr. Pellegrini, who is also well documented on this Board, also

in

California.

_achalasia : Message: Re: article on achalsia - basics._

(achalasia/message/35171)

Lifestyle changes, while always welcomed, will not prevent the need for the

E'ectomy. I did ask him about the stretching of the E, and could it

perforate if it got too stretched. He said it could.

He did tell me something that has been banging around in my head for years

He revealed that the techniques used in my open Heller in 1991, with Belsey

wrap, is not only considered " ancient, " but just completely wrong, and

patients who had it done that way have been returning with conditions similar

to

mine. There was nothing that I could have done, under these circumstances to

have prevented it. At the time the surgery was performed, I was aware that

lap surgery was the " surgery of the future " for A, but that too many surgeons

were having trouble mastering the technique, and I would have been a " guinea

pig " for a lap. At that point with my having a sigmoid esophagus I was told

to go with the " tried and true. " It was the right decision for the time.

Dr. Richter had given me much of his time, no pressure to rush me out, and

made a " history lesson " of me to his GI fellow, learning about Achalasia. I

have to admit it was interesting being the subject of how things were done

back then, and how things are done now, but I did feel like a relic. I asked

Dr. Richter if there was anything in the " pipeline " that might help me, and he

said " no. "

I asked him if there was any point in waiting around to see Dr. Dempsey (one

of the top thoracic surgeons) 5 hours later. He said I should. We almost

canceled the appointment, to see Dr. Ravich instead, chief GI doctor of

s Hopkins Hospital (who I had seen back in the early 1990's, under Dr.

Hendrix.) We decided to stay (as a courtesy), expecting nothing different to

be

said. We were wrong.

My appointment with Dr. Dempsey came as a result of an email I sent to him

the previous Sunday morning, in which he said he could see me Thursday at 4:30

and that he would set up an appointment with Dr. Richter also (per my

request). One had to be impressed.

While hoping I could be fitted in earlier, all of a sudden at 3:30 he came

storming into the waiting room telling us he could no longer see us at 4:30

since he had to operate, and could he see us now? One had to be impressed

[Guest guest]

,

I am pleased for you. Your current presentation sounds very similar to my current presentation and I notice your onset was January and mine was February and here we both are now going through the oesophagectomy story.

I don't want to comment specifically on your advice as it clearly was right for you.

But, for those of you in the UK I want to reassure you we have some good surgeons here and you don't need to book your flights to the USA quite yet. My surgeon suggested that I should do nothing and we also discussed the oesophagoplasty but eventually we came to the conclusion that the oesophagus should be "whipped out" (his words not mine). Interestingly we came to this conclusion mainly due to my age (he suggested that at 42 my risks are almost zero (but not actually zero).

I just want to reassure people that I was given similar alternatives and that the strategies offered are available in the UK too. We have very strict rules here on who can and can not do oesophageal surgery (especially the oesophagectomy) and I find this very reassuring.

All the best . It has made me question my decision and I clearly need to work this through for myself. Your information has been very valuable.

STEVE

"Doing Nothing is not an Option" - Part 7 - The Second Opinion

This is the final chapter describing my journey facing an esophagectomy (E'ectomy), specifically over the last 2 months, but historically over the last 24 years. For our newbies here, I am 57, developed achalasia in 1982, 5 dilatations later in 1991 I had an open Heller at s Hopkins Hospital and nothing since. While living with Achalasia has never been a walk in the park, I could not complain about my life-style. In January of this year, I began to retain fluids & foods in my E and had awakening regurgitations every night. Something had to be done. For the complete story, please scroll down past today's post.I saw Dr. Richter this past Thursday morning. Likeable, self-assured, and (self-admittedly) the authority on achalasis, having trained under the best,

Dr. Hendrix, (coincidentally, my GI doctor for 10 years). This was going to be the doctor who was going to save me. He asked me why I was here, and I answered him (for an alternative to an E'ectomy) expecting that whatever it took, he was the man to do it. I was wrong. He reviewed my history, took me into the next room and gave me a tutorial about my esophagus using the Xrays I had brought. My mega-esophagus goes down to below the level of the stomach, then makes a right angle, before going back up again to meet the stomach. The LES opening is tiny. No matter what I do, there will always be rotting food or liquid sitting there.Bottom line, he told me "You will want an esophagectomy done within the next few years, if not

sooner." There are no practical alternatives. "A Heller will only give you psychological improvement." In addition to Dr. Dempsey, he named four surgeons as the only ones who should do this surgery for me. Dr. Altorki (the surgeon I saw in NY), Dr. Rice (Cleveland Clinic with whom he worked with for 10 years, and is the most mentioned surgeon on this Board), Dr. Patti (who is like God out on the West Coast, and well known to us members), and Dr. Pellegrini, who is also well documented on this Board, also in California. _achalasia : Message: Re: article on achalsia - basics._ (achalasia/message/35171) Lifestyle changes, while always welcomed, will not prevent

the need for the E'ectomy. I did ask him about the stretching of the E, and could it perforate if it got too stretched. He said it could. He did tell me something that has been banging around in my head for years. He revealed that the techniques used in my open Heller in 1991, with Belsey wrap, is not only considered "ancient," but just completely wrong, and patients who had it done that way have been returning with conditions similar to mine. There was nothing that I could have done, under these circumstances to have prevented it. At the time the surgery was performed, I was aware that lap surgery was the "surgery of the future" for A, but that too many surgeons were having trouble mastering the technique, and I would have been a "guinea pig" for a

lap. At that point with my having a sigmoid esophagus I was told to go with the "tried and true." It was the right decision for the time. Dr. Richter had given me much of his time, no pressure to rush me out, and made a "history lesson" of me to his GI fellow, learning about Achalasia. I have to admit it was interesting being the subject of how things were done back then, and how things are done now, but I did feel like a relic. I asked Dr. Richter if there was anything in the "pipeline" that might help me, and he said "no."I asked him if there was any point in waiting around to see Dr. Dempsey (one of the top thoracic surgeons) 5 hours later. He said I should. We almost canceled the appointment, to see Dr. Ravich instead, chief GI doctor

of s Hopkins Hospital (who I had seen back in the early 1990's, under Dr. Hendrix.) We decided to stay (as a courtesy), expecting nothing different to be said. We were wrong.My appointment with Dr. Dempsey came as a result of an email I sent to him the previous Sunday morning, in which he said he could see me Thursday at 4:30 and that he would set up an appointment with Dr. Richter also (per my request). One had to be impressed. While hoping I could be fitted in earlier, all of a sudden at 3:30 he came storming into the waiting room telling us he could no longer see us at 4:30 since he had to operate, and could he see us now? One had to be impressed.In his office, "time" stopped. He first told us that he had not spoken yet with Dr.

Richter. No preconceived notions then. Like Dr. Richter, he reviewed my medical history and Xrays, and asked me about my weight (213 pounds at 6'1"), and had many questions about my life style, in other words how achalasia was impacting on my life. Remember, this was now a surgeon. His business is to "cut."Dr. Dempsey offered me 4 alternatives. We knew he wasn't talking dilatations or botox, but we could not figure out the last one. He said we could "do nothing," which he sheepishly said was not really an option but could be considered one; I could have another Heller Myotomy, but with limited benefit; I could have an E'ectomy, or something else. I came down to Philadelphia pretty well researched, as was my wife (Cyndee). We were clueless. Slowly

he said that he could do an "esophagoplasty." _define esophagoplasty - Google Search_ (http://www.google.com/search?hl=en & ie=ISO-8859-1 & q=define+esophagoplasty & btnG=Google+Search) _achalasia esophagoplasty - Google Search_ (http://www.google.com/search?hl=en & lr= & ie=ISO-8859-1 & q=achalasia+esophagoplasty & btnG=Search) We had never heard of that, nor was it ever mentioned by anybody on the achalasia board (unless they spelled it wrong) It took us time that night to even find the term online, not knowing how to spell it (of course we asked

him, but that was the only question of the afternoon that he did not answer!). He did try explaining, but I would have needed Notan with me to better understand.It is an extremely rare operation, more often performed on cancer patients or people who have suffered acid (as in lye) damage to their esophagus and required a reconstruction of their esophagus. To achalasia patients this operation fell out of favor when the open Heller Myotomies became the "rage" amongst thoracic surgeons. Dr. Dempsey said he had done a few of them. Naturally, we all know that we want our surgeons to have performed literally hundreds of these operations before even considering them, but here was an operation that would take the "bucket" out of my esophagus, yet leave my esophagus relatively

intact!There probably is no surgeon anywhere who has performed this with any real frequency, at least not for achalasia. I will be the first to admit that I really don't know enough about this operation to start explaining it to the group. All I could say is that it is the first time I heard of an alternative to an E'ectomy. The fact that I am sitting across the room from the surgeon who would also do it was like praying for a miracle, and having it handed to you! Here's the "kicker," and it does not start off with the word "but." While Dr. Dempsey is a surgeon, the esophagoplasty did not end up being his first choice of which alternative I should choose! His first choice was for me to do nothing! His reasoning is the following.Other than having Achalasia, I am

in excellent health. He did not see the bucket esophagus as something life threatening, nor did he think the esophagus would perforate from additional stretching. He saw nothing wrong with my regurgitating before going to sleep (if needed) as long as I took care of my teeth, and saw no harm in food going the other way (upward) since the esophagus was only a conduit now and did not function. Earlier in the week I spoke with my cardiologist and showed him my Xrays and was told that he saw no future danger of the E crowding out the heart. (I see a cardiologist because of my family history and high cholesterol, well controlled by Lipitor, but not due to any heart problem)Dr. Dempsey went on to say (in so many words), Why take a person who is relatively healthy and subject him

to a horrible operation, with so many potential things that can go wrong, and a recovery period that can be in from one to two years all problems considered, and can still leave you worse off as to how you feel now. This is not to say that the operation does not serve a good purpose. Like anything else, the condition of the patient before choosing the surgery must be considered.I thought of , our senior esophagectomy member who is dealing so well, and who recently had it done and shared with us his experience. There are no guarantees that come with this operation, nor any operation. Why subject myself to it when there are so many inherent risks, and when we talk mortality here, it can range from 2 to 5% or higher. Remember, we are the ones

who got achalasia in the first place with a chance of .001% (1 in 100,000). A 2% mortality rate is 2,000 times greater. In other words, we have a 2,000 times greater chance of dying from an esophagectomy than we did from getting achalasia in the first place! Dr. Dempsey's conclusions were that if I can continue living the way I am, then I should not have any surgery at all. Life style changes will not improve the condition of my esophagus, but may possibly slow down its decline. An esophagoplasty would be his first choice to perform, and waiting to do it would not compromise the results. The bucket in my esophagus is being supported by my diaphragm as far as its continuing to sink.I canceled my appoinment to see my 1991 surgeon scheduled

for the next morning in Baltimore.For the E'ectomy sub-group here, I am much more than satisfied with my visit to Dr. Dempsey. I feel alive and invigorated by what he said. He is not only an exceptional surgeon, but an incredible human being. I have a deep respect for anyone who could financially benefit themselves but chooses to give advice from the heart instead.Dr. Richter ended the guilt I have felt for so many years regarding my conditon, and Dr. Dempsey gave me a future I did not think I had. I am deeply indebted to both of them. Dempsey, MD, F.A.C.S. S. s, MD and Louise C. s Chair in Surgery Specialty interests: Gastrointestinal surgery, laparoscopic

surgery Email: _.Dempsey@..._ (mailto:.Dempsey@...) Appointments: 215-707-3133 Department: 215-707-3133 Location: Parkinson Pavilion, Fourth FloorBroad and Tioga StreetsPhiladelphia, PA 19140_Temple University School of Medicine_ (http://www.temple.edu/medicine/faculty/r/richterj.htm) Richter, MD Chairman, Department of Medicine Professor, Medicine Telephone: 215-707-5069 FAX: 215-707-4756 Email: _jrichter@..._ (mailto:jrichter@...) ---------------------------------------------------------------"Doing Nothing is not an Option" - Part 1 - Background Info (Posted

July 5, 2006)Since January 2006 I have been posting here. Having suffered since Feb1982, with an open Heller with Fundo in Dec 1991, I came here to shareexperiences with others. I have learned much from my fellow Achalasians. Much of what has transpired, has been communicating with new sufferers and sharing experiences hoping that it might be helpful.While this should continue as new people come to this Board for help, myown situation has suddenly changed.3 years after I had my surgery, my GI doctor (who I virtuallyworshipped, Dr. Hendrix) retired. With nobody of his caliber to take his place I stopped doing my annual trek from New York to Baltimore, while at the same time, felt good enough that I did not need to start "trying out" doctors in my home area

of Long Island, NY (not shabby, and just outside New York City).Over the years I always needed soda to get the food down, sufferedpneumonia once from aspirating, experienced plenty of isolatedincidences where I felt I was just a breath away from my last as foodand liquid got stuck, and of course the famous (heart attack) spasmsthat most of us learn to deal with.I viewed myself as the person with the successful surgery, who afternearly 15 years was still doing great!About 5 months ago, the isolated episodes became regular episodes, where I could no longer sleep. Regurgitations through the night, every night, became the rule. Most meals I could get through, but it was becoming more difficult, and it took more soda to "send it thru."Recalling our group mantra, "Doing nothing is

not an option," I finallycalled my wife's former gastroenterologist, who specializes inAchalasia. I had to wait nearly 2 months for an appointment. Aconsultation is scheduled for tomorrow, and an endoscopy for Monday.More recently I have slept better by forcing up whatever is in myesophagus before going to sleep. (This is not the direction I want togo).Since we all benefit from sharing information with each other, good,bad, or otherwise, I will report back the findings.---------------------------------------------------------------"Doing Nothing is not an Option" - Part 2 - The Consultation (Posted July 7, 2006)Yesterday I had my consultation with Dr. Brody. Even though we haveknown each other for years (through my wife's GERD), it was the firsttime we met as doctor/patient. She

wanted to get to know me, mysymptoms, and my medical history, in advance of Monday's endoscopy.There was no examination, nor did I expect one.My 370 page medical history from s Hopkins (1984 - 1994) wasfiltered down to around 110 pages and made for some eye-opening reading while I awaited my appointment. I always felt somewhat ignorant in this group not knowing the name of the wrap I had, plus being unsure how many dilatations I had (how can one forget!) If there was one thing I learned from yesterday, we all should have access to our detailed medical histories. There was much in there that I was not aware of. Apparently, and maybe with the best of intentions, doctors only tell you what they believe you should know. Having a friend who thinks she has Cancer every time she has a new pain, I will admit

that it is sometimes in the patient's best interest that they are not told everything.Based upon the symptoms I described to Dr. Brody, she felt that I willneed on Monday a minor dilatation, to clear away possible scar tissueand a possible narrowing in the LES.---------------------------------------------------------------"Doing Nothing is Not an Option" - Part 3 - the Endoscopy (Posted July 10, 2006)I am still amazed as to what propofol (the injected anesthesia) does.One moment I am on my side with the "holder" in my mouth for theendoscope waiting for the injection, and then a "moment" later I amstill on my side, but in a different room, and the endoscopy is finishedalmost "before it began." Awesome stuff.The good news was that there was no Barrett's, no significant scartissue, no ulcers,

no growths. The bad news, and its only preliminary,is that the esophagus has gotten sigmoid in shape, grossly dilated, andappears to have "sunk" down lower than the stomach. Look at the pipingbeneath your bathroom sink. Most pipes go down low, and then come back up again before exiting the room. That's my E, lower than my stomach. This would explain all the middle of the night spontaneousregurgitations I had been suffering from, and why doing my ownregurgitation before going to sleep, allowed me to sleep through thenight.Dr. Brody mentioned esophagectomy to me, but was not suggesting it(yet). I need to get the name of it, but there is a surgery where theesophagus is pulled up (probably like a marionette), and then there isalso the esophageal resectioning.Oh,

and while she was in there she did a minor dilatation hopefully togive me some relief.---------------------------------------------------------------"Doing nothing is not an option" - Part 4 - The Barium Swallow (Posted July 12, 2006),As you know I have always had a great interest and feeling for you andwhat you have gone through, and what you are facing. I just neverthought that I would be facing a similar decision in the near future.After reading your message below, I feel very strongly connected to you.Tragedies, disasters and common health crises are very strong forcesthat bring people of distant origins very close together, forming anexceptionally strong bond. I had not heard from you for a while and waswondering where you were in

your "journey?"Today's barium swallow was, of course, a piece of cake (I wish it was cake). It just struck me as kind of ironic that when I am lying on myback when the tests are finished, that I am told to to just stay therewhile they review the photos to see if anymore photos need to be done.HELLO! I have Achalasia, and you know it. You don't tell me to stay onmy back right after I drank a liter of that poison! Ok, so withoutfurther do I just sat up and waited. 10 minutes later he came back thatit was all OK.I got glimpses of my esophagus on the screen while the tests wereperformed, and it didn't look like any esophagus that I've ever seen.The radiologist would not commit to saying that I had a mega-esophagus.Its strange. I know that I am not in a good situation at the

moment.What bothers me the most going forward is the anticipation of what mygastro doc is going to say to me on Friday. Like knowing you are goingto get a bad report card...you know its coming, but you can't bear tohear the words "You failed!" or "you've got one helluva gross esophagusthat's going to need surgery like you've never had before!"In my saner moments right now, I know that I will be extremely upset at first, then depressed, will think about it, collect myself, then goforward. Except for the "anger" part does that sound anything like theemotional stages one goes thru when they are told that they are going todie? Nobody is dying over here, but the emotional stages remind me ofit., thank you so much for your words. It really is amazing what a therapeutic effect they can

have.My dear friend, Lilac Ann convinced me to go public with all of thiswhen I first started facing it. For many reasons I now agree with her.---------------------------------------------------------------"Doing nothing is not an option" - Part 5 - Barium Results (Posted July 14, 2006)I think I have to take my understanding of achalasia to a new level,after hearing the results of my barium swallow. If someone is readingthis "series" for the first time, the previous four parts have beencopied below.We are all here because of a common "interest" that has been thrust upon us or a family member. I might be joining the "group within the group" where the word "esophagectomy" has been coming up much more recently. My gastroenterologist told me a few minutes

ago that my esophagus hasbecome like a "second stomach," or like a "big bucket" in my chest. Sheused the term "burnt out achalasia." Needless to say that I have asigmoid esophagus, where the lower part of my esophagus then has totravel upward to connect to the stomach causing food and liquidparticles to sit there until the next round of food and liquids comesthru, explaining why I have become such a good regurgitator before I goto sleep (though the recent dilatation has helped a little).Dr. Brody used the words again "Pexy Esophageal Diverticulum" which Imust look up. It relates to an operation having to do with removing apouch that has formed. Also mentioned was an esophagel resectioningusing some relatively new tools such as esophageal surgical stapling toreduce the size of the esophagus.

Question also is how thin are thewalls of my esophagus and how much surgery can those walls take andmaintain their integrity.After reading 's post to me last night I feel a little better thanI would have felt without her encouragement. I'm human, this hasdepressed me and upset me. I also found out that the company that hasthe films of my barium, in the process of moving to a new location,cannot find the film. They just sent the report to my doctor.I have discovered since starting these posts something that I knew allalong, how many wonderful and supportive people there are here, and how grateful I am to have all of you in my time of need.---------------------------------------------------------------"Doing nothing is not an option" - Part 6 - The Surgeon Appointment (Posted

August 1, 2006)Since its no secret I have trouble getting to the point sometimes, let'scut to the chase then back it up. The surgeon told me today that thereare no alternatives for me, that I must have an esophagectomy, and anear total one at that. I will, of course go for 2nd, 3rd, whatever ittakes, opinions. I will be setting up an appointment with my hellermyotomy surgeon in Baltimore in the near future. I would like to stopoff in Philadelphia on the way back. If anyone of you has the name of asurgeon you would unequivocably recommend to me on the way back from Baltimore to NY, please help me in that respect. Philadelphia, inparticular. Btw, anyone reading this who has not read the postspreceding this one (Parts 1 -5), they have been copied/pasted below. Dr. Altorki, of NY

Hospital, told me that an HM at this point would beof limited value and then I would still have to have the E-ectomy done(sound like something in NY once said). I could have the surgerythis September (10 days in the hospital and 8 weeks to recuperate), or ayear from now. Other body parts would not be affected in the interim,and what's damaged with me will be getting removed anyway. So, it seems that a relatively short wait won't harm me. I can also wait a year,give or take, and see what the latest is in the surgical "green room." Those of you (Ed, and others) who have had their E-ectomies done, I'dappreciate if you could tell me the name of your surgeon, where located,and if you were satisfied with how the whole "process" worked out. Emotionally, I am coping alright, looking forward to the day

when I can tell people that I no longer have achalasia! (and they'll say to me, "I thought you told me there was no cure for it?"). Sorry, "achalasia" humor again. You esophagectomy alumni, if you want to share the wisdom of your experiences with me, preferably on the Boards, I'm all ears. While I know I have helped a couple of people here with their difficulties, I am somewhat troubled by the fact that "how can I technically give any advice to anyone when I ended up having my esophagus removed?" You don't see a person who crashed there car giving drivers ed lessons, do you? There is something wrong there. I just haven't figured it out yet.