Re: had 2 myotemies already- NY

[Guest guest]

Hi,i also had two myotemies...things got real bad so they removed my esopagus

and pulled my colon up to act like an esop....had good luck for a few years but

the wrap they did a long time ago is starting to fail...vomiting much more

losing alot of weight...might have surgery again but they say it is a

complicated surgery...so here I go again...decisions!!!

had 2 myotemies already- NY

Hi im new- thanks everyone for all the great emails im glad im not completely

alone. what i am confused about is i had 2 myotemies already and can eat only if

i drink a lot of water with it. but generally am gaining weight and not vomiting

ever. i am worried because the barium studies show my esophagus keeps getting

bigger and bigger but i can still eat and gain weight and am worried to ignore

it. if there are no more options other than to remove the esophogus this seems

too extreme if i can tolerate the symptoms do you agree? in other words, if i am

told the only remaining option is to remove my esophogus why would i do that if

i can have a normal life except for having to chug water when i eat? thanks

mike in ny

28 yrs old

[Guest guest]

Hey MIKE-You are so not alone here and everyone is awesome!You have

found the right place : ) My son still has to use water to

get his food to go down as well and he too has had 2 myotomies as

well.He had it lapro and then open.He will always have to use water

cause the Esophagus doesnt work anymore so only water pushes his

food down.

As far as leaving things alone and not having a esophectomy if the

time should occur, is not a good thing.You will get to the point

that liquids will be an issue and basicaly have no choice.It sounds

like things are not to that point right yet.Have you been told you

need one? I would just enjoy thngs the way they are now until you

are told other wise.Your swallowing will never be normal and this

may be just what you will have to deal with for now.Monitor your

Achalasia and stay on top of things with yor DR.

Stay in touch-Good luck

Tonia Mom of age 15 (101 % teenager ugh!)

>

> Hi im new- thanks everyone for all the great emails im glad im not

completely alone. what i am confused about is i had 2 myotemies

already and can eat only if i drink a lot of water with it. but

generally am gaining weight and not vomiting ever. i am worried

because the barium studies show my esophagus keeps getting bigger

and bigger but i can still eat and gain weight and am worried to

ignore it. if there are no more options other than to remove the

esophogus this seems too extreme if i can tolerate the symptoms do

you agree? in other words, if i am told the only remaining option

is to remove my esophogus why would i do that if i can have a normal

life except for having to chug water when i eat? thanks

>

> mike in ny

> 28 yrs old

>

[Guest guest]

Mike wrote:

> ... i am worried because the barium studies show my esophagus keeps getting

bigger and bigger but i can still eat and gain weight and am worried to ignore

it. ...

Your esophagus can only get so big and then it is going to be a problem.

I don't know that will keep getting bigger but I see no reason it

wouldn't if you don't do anything. It may be that a dilatation or

another myotomy could help slow the progression or stop it. I don't know

if there is anything that will stop it in your case. If I were you I

would be talking to some of the top experts in the world, not just

locally, to see if they think they can do something to prevent it from

becoming a major problem.

notan

[Guest guest]

Hi Mike,

I wrote back to you yesterday about Dr. Richter and Dr. Traube; unfortunately my

message never got posted. 

    Mike, yours is the age-old question on this Board.  There are people here,

not much older than you who faced a situation very similar to yours.  In their

case, they sought many opinions from top doctors before making their decision to

take the next step.  Even though they probably will contribute their current

thoughts on this matter, I would suggest you put the term " esophagectomy " into

the search field and see what comes up.  Many of us have generously shared with

the group their thought process as we struggled with making a decision, much

like you are doing now.

 Probably closest to your situation would be , now 12 years older than

you, who had one myotomy in 1989, felt pretty good, but was told she should have

the ectomy, or in NY (upstate), who never had any surgery, felt pretty

good, but years of stretching caused her to have a mega-esophagus.  She was just

5 years older than you when she had her operation.  I have met the two of them,

in person and over the phone.  Both gave this a great deal of thought and came

to the right decision.

If I may share some of my thinking with you.  Its very difficult to conceive of

this operation as long as you are feeling well, but quite the contrary if you

are never able to get food and liquid down.  You need to try to project ahead

for the next 50 years or so, if that's possible how your life will be whether or

not you have the ectomy.  and felt that at some point they were

definitely going to have to have the surgery.  Why not have it when they are

younger and healthier, and do it on their terms exactly when they wanted to. 

Makes sense.  They have both said, hypothetically speaking, that knowing what

they have gone through, if they had a choice to never have it done, or to do it

again, they would make the same choice to do it.

Its been said that if a person can avoid surgery without sacrificing quality of

life, they should do so.  You have read my story, but my perspective is

different..  I am 31 years older than you.  When I was 28, I had 4 years of

trouble free eating to go, and you are 2 myotomies down with a mega-esophagus in

process.  Has it been discussed with you what a grossly dilated esophagus will

do to you over time.  You may reach the point where you won't be able to eat by

chugging down huge amounts of water. 

I don't think that in most cases (at age 28) it matters whether you remove the

esophagus now or in 5 or 10 years.  Either way, you're still young.  Its also

possible that some procedure may come along that doesn't exist now that might

relieve or correct your problem.  Cancer should not be a consideration at this

time.  You still have options. 

I think you should follow through and see Dr. Richter, Dr. Traube, and possibly

some other top names in the field, get more opinions from people here.  Nobody

here has an agenda.  They may favor one way or the other, but you want their

opinions, to hear what they faced and how it got resolved.  You should also be

aware that a few of us had ectomies done where time was of the essence.  There

are never any guarantees that if you must have the operation that you can have

it when you want to have it.

You are doing the right thing, as a first step soliciting opinions here, and to

research your situation, and then to see some of the top doctors and hear what

they are saying.  You may be surprised.  Please keep us up to date on your

" journey. "

had 2 myotemies already- NY

Hi im new- thanks everyone for all the great emails im glad im not completely

alone.  what i am confused about is i had 2 myotemies already and can eat only

if i drink a lot of water with it.  but generally am gaining weight and not

vomiting ever.  i am worried because the barium studies show my esophagus keeps

getting bigger and bigger but i can still eat and gain weight and am worried to

ignore it.  if there are no more options other than to remove the esophogus this

seems too extreme if i can tolerate the symptoms do you agree?  in other words,

if i am told the only remaining option is to remove my esophogus why would i do

that if i can have a normal life except for having to chug water when i eat? 

thanks

mike in ny

28 yrs old

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

[Guest guest]

thanks so much richard yes im going to see the 2 drs you recommended later this

month. i will search the forums some more. it just stinks when the doctors ive

seen aleady are so confused as if they are already giving up on me. and that i

have to go see them by myself it is upsetting and hard to stay positive. thanks

again im so glad i found this emails

> From: RICHARD FRIEDMAN <cynmark24@...>

> Subject: Re: had 2 myotemies already- NY

> achalasia

> Date: Tuesday, July 29, 2008, 8:03 PM

> Hi Mike,

> I wrote back to you yesterday about Dr. Richter and Dr.

> Traube; unfortunately my message never got posted. 

>     Mike, yours is the age-old question on this

> Board.  There are people here, not much older than you who

> faced a situation very similar to yours.  In their case,

> they sought many opinions from top doctors before making

> their decision to take the next step.  Even though they

> probably will contribute their current thoughts on this

> matter, I would suggest you put the term

> " esophagectomy " into the search field and see

> what comes up.  Many of us have generously shared with the

> group their thought process as we struggled with making a

> decision, much like you are doing now.

>  Probably closest to your situation would be , now

> 12 years older than you, who had one myotomy in 1989, felt

> pretty good, but was told she should have the ectomy, or

> in NY (upstate), who never had any surgery, felt

> pretty good, but years of stretching caused her to have a

> mega-esophagus.  She was just 5 years older than you when

> she had her operation.  I have met the two of them, in

> person and over the phone.  Both gave this a great deal of

> thought and came to the right decision.

> If I may share some of my thinking with you.  Its very

> difficult to conceive of this operation as long as you are

> feeling well, but quite the contrary if you are never able

> to get food and liquid down.  You need to try to project

> ahead for the next 50 years or so, if that's possible

> how your life will be whether or not you have the ectomy. 

> and felt that at some point they were

> definitely going to have to have the surgery.  Why not

> have it when they are younger and healthier, and do it on

> their terms exactly when they wanted to.  Makes sense. 

> They have both said, hypothetically speaking, that knowing

> what they have gone through, if they had a choice to never

> have it done, or to do it again, they would make the same

> choice to do it.

> Its been said that if a person can avoid surgery without

> sacrificing quality of life, they should do so.  You have

> read my story, but my perspective is different..  I am 31

> years older than you.  When I was 28, I had 4 years of

> trouble free eating to go, and you are 2 myotomies down

> with a mega-esophagus in process.  Has it been discussed

> with you what a grossly dilated esophagus will do to you

> over time.  You may reach the point where you won't be

> able to eat by chugging down huge amounts of water. 

> I don't think that in most cases (at age 28) it matters

> whether you remove the esophagus now or in 5 or 10 years. 

> Either way, you're still young.  Its also possible

> that some procedure may come along that doesn't exist

> now that might relieve or correct your problem.  Cancer

> should not be a consideration at this time.  You still

> have options. 

> I think you should follow through and see Dr. Richter, Dr.

> Traube, and possibly some other top names in the field, get

> more opinions from people here.  Nobody here has an

> agenda.  They may favor one way or the other, but you want

> their opinions, to hear what they faced and how it got

> resolved.  You should also be aware that a few of us had

> ectomies done where time was of the essence.  There are

> never any guarantees that if you must have the operation

> that you can have it when you want to have it.

> You are doing the right thing, as a first step soliciting

> opinions here, and to research your situation, and then to

> see some of the top doctors and hear what they are

> saying.  You may be surprised.  Please keep us up to date

> on your " journey. "

>

>

>

>

> had 2 myotemies already- NY

>

> Hi im new- thanks everyone for all the great emails im glad

> im not completely alone.  what i am confused about is i had

> 2 myotemies already and can eat only if i drink a lot of

> water with it.  but generally am gaining weight and not

> vomiting ever.  i am worried because the barium studies

> show my esophagus keeps getting bigger and bigger but i can

> still eat and gain weight and am worried to ignore it.  if

> there are no more options other than to remove the

> esophogus this seems too extreme if i can tolerate the

> symptoms do you agree?  in other words, if i am told the

> only remaining option is to remove my esophogus why would i

> do that if i can have a normal life except for having to

> chug water when i eat?  thanks

>

> mike in ny

> 28 yrs old

>

>

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

>

>

[Guest guest]

I agree w/ Notan, you are really young!!! Most of us are in our 40's

AT LEAST. You never know what lies ahead in your health, as we age,

things happen and achalasia can be a complication. Many people live

MANY years with a myotomy, but seems like problems don't get better.

The longer you can keep/save your esophagus the better. Because of

your age I really look into dialations or a redo of the myotomy.

Likely your wrap is too tight if you have one, or scar tissue is

tightening the sphincter more. If you keep it more open, your

esophagus is less likely and slower to stretch.

An unusual treatment, just a few of us, have VATS surgery which

doesn't have a wrap, only available, apparently at Cedars in Los

Angeles they do VATS so there isn't a wrap. I'd suggest contacting

all the top surgeons mentioned, summarizing your tests and emailing

them. They LOVE to have us as patients and will contact you. They

may be on vacations now, but persist. They will call you back and

email. Some of them (seems like mostly West Coast) have office

personnel barriers, but persist over them. The surgeons and gi's

want us!!!!

Save what you have. It is kind of like sun lotion. Even though you

have burns (myotomies) maybe a few skin cancers removed, you still

need to preserve what you have and use sun lotion. Save your

esophagus, don't let it stretch. The techniques some may use, such

as huge bottles of water gulped down, may get the food down, but may

be stretching your esophagus.

As I've mentioned many times, and others find it too painful. I saw

on the machine at the end of a barium test, how the carbonated water

pushed the barium down. Those of you getting bariums, see if it

works for you also.

Also many of us have weight issues, we tend to eat high fat foods and

still be overweight with achalasia, even well-treated achalasia.

Less informed gi's will see the weight gain as a sign your stretching

esophagus is NOT a problem... they are wrong, in my humble opinion,

which is non-medical. Some here have achalasia after, and before

gastric bypass, so don't let weight be a sign of the condition of

your esophagus.

Totally guessing, I would say a dialation or two may be what you

need, but you still must go to someone VERY experienced in doing

that, as it can rupture and lead to surgery. Whatever surgery you

need to try to keep your esophagus from stretching, I'd suggest doing

at your age. If you were in your sunset years, then live with it,

but you have way too much life to enjoy ahead of you. You will

likely recover quickly and be up and about while the rest of us are

still trying to walk down the hallway.

Sandy in So Cal

> > ... i am worried because the barium studies show my esophagus

keeps getting bigger and bigger but i can still eat and gain weight

and am worried to ignore it. ...

>

> Your esophagus can only get so big and then it is going to be a

problem.

> I don't know that will keep getting bigger but I see no reason it

> wouldn't if you don't do anything. It may be that a dilatation or

> another myotomy could help slow the progression or stop it. I don't

know

> if there is anything that will stop it in your case. If I were you

I

> would be talking to some of the top experts in the world, not just

> locally, to see if they think they can do something to prevent it

from

> becoming a major problem.

>

> notan

>

[Guest guest]

richard- thanks for your continued help i made appointments with richter in pa,

and the people at nyu

sandy-supposedly i had the wrap removed and scar tissue taken out with the

second myotemy this year. neither operation really helped although i am not

losing weight or having problems aside from the water and the potential esophgus

stretching i dont know about. but michelle is right i try to eat food that will

make me gain weight like carb overload, etc, so who really knows if it is better

or worse???

michelle- thanks for your point of view. i guess i need to decide how long i

can wait but considering i just had a myotemy surgery 6 months ago and i had a

VERY hard time recovering im not looking forward to removing my esophogus! i

hope the answer will become clearer. it is hard because i feel like i can do

nothing and be comfortable for now. i gained 15 pounds since the surgery in

december this year.

gail- had one myotemy in 2001 and another this year. so i had the problem since

2000 to 2008.

thanks everyone so much im so glad i dont have to try to figure this out by

myself anymore. i really appreciate it.

mike in ny

28

> From: toomuchclutter <sandycarroll@...>

> Subject: Re: had 2 myotemies already- NY

> achalasia

> Date: Wednesday, July 30, 2008, 12:42 AM

>

> I agree w/ Notan, you are really young!!! Most of us are

> in our 40's

> AT LEAST. You never know what lies ahead in your health,

> as we age,

> things happen and achalasia can be a complication. Many

> people live

> MANY years with a myotomy, but seems like problems

> don't get better.

> The longer you can keep/save your esophagus the better.

> Because of

> your age I really look into dialations or a redo of the

> myotomy.

> Likely your wrap is too tight if you have one, or scar

> tissue is

> tightening the sphincter more. If you keep it more open,

> your

> esophagus is less likely and slower to stretch.

>

> An unusual treatment, just a few of us, have VATS surgery

> which

> doesn't have a wrap, only available, apparently at

> Cedars in Los

> Angeles they do VATS so there isn't a wrap. I'd

> suggest contacting

> all the top surgeons mentioned, summarizing your tests and

> emailing

> them. They LOVE to have us as patients and will contact

> you. They

> may be on vacations now, but persist. They will call you

> back and

> email. Some of them (seems like mostly West Coast) have

> office

> personnel barriers, but persist over them. The surgeons

> and gi's

> want us!!!!

>

> Save what you have. It is kind of like sun lotion. Even

> though you

> have burns (myotomies) maybe a few skin cancers removed,

> you still

> need to preserve what you have and use sun lotion. Save

> your

> esophagus, don't let it stretch. The techniques some

> may use, such

> as huge bottles of water gulped down, may get the food

> down, but may

> be stretching your esophagus.

>

> As I've mentioned many times, and others find it too

> painful. I saw

> on the machine at the end of a barium test, how the

> carbonated water

> pushed the barium down. Those of you getting bariums, see

> if it

> works for you also.

>

> Also many of us have weight issues, we tend to eat high fat

> foods and

> still be overweight with achalasia, even well-treated

> achalasia.

> Less informed gi's will see the weight gain as a sign

> your stretching

> esophagus is NOT a problem... they are wrong, in my humble

> opinion,

> which is non-medical. Some here have achalasia after, and

> before

> gastric bypass, so don't let weight be a sign of the

> condition of

> your esophagus.

>

> Totally guessing, I would say a dialation or two may be

> what you

> need, but you still must go to someone VERY experienced in

> doing

> that, as it can rupture and lead to surgery. Whatever

> surgery you

> need to try to keep your esophagus from stretching, I'd

> suggest doing

> at your age. If you were in your sunset years, then live

> with it,

> but you have way too much life to enjoy ahead of you. You

> will

> likely recover quickly and be up and about while the rest

> of us are

> still trying to walk down the hallway.

>

> Sandy in So Cal

>

> > > ... i am worried because the barium studies show

> my esophagus

> keeps getting bigger and bigger but i can still eat and

> gain weight

> and am worried to ignore it. ...

> >

> > Your esophagus can only get so big and then it is

> going to be a

> problem.

> > I don't know that will keep getting bigger but I

> see no reason it

> > wouldn't if you don't do anything. It may be

> that a dilatation or

> > another myotomy could help slow the progression or

> stop it. I don't

> know

> > if there is anything that will stop it in your case.

> If I were you

> I

> > would be talking to some of the top experts in the

> world, not just

> > locally, to see if they think they can do something to

> prevent it

> from

> > becoming a major problem.

> >

> > notan

> >

[Guest guest]

I wish I had more suggestions, you sound knowledgeable and like you

are taking all the right steps. All I can suggest is keeping a

journal with all your gest results and surgery reports from the past

and future and summarizing and emailing to the top doctors. Maybe

your insurance will cover the cost of a long distance consult? Or

the doctors will call or email you. Then look at your before and

afters and see what makes sense to you.

I wish you the best, let us know.

Sandy

> > I agree w/ Notan, you are really young!!! Most of us are

> > in our 40's

> > AT LEAST. You never know what lies ahead in your health,

> > as we age,

> > things happen and achalasia can be a complication. Many

> > people live

> > MANY years with a myotomy, but seems like problems

> > don't get better.

> > The longer you can keep/save your esophagus the better.

> > Because of

> > your age I really look into dialations or a redo of the

> > myotomy.

> > Likely your wrap is too tight if you have one, or scar

> > tissue is

> > tightening the sphincter more. If you keep it more open,

> > your

> > esophagus is less likely and slower to stretch.

> >

> > An unusual treatment, just a few of us, have VATS surgery

> > which

> > doesn't have a wrap, only available, apparently at

> > Cedars in Los

> > Angeles they do VATS so there isn't a wrap. I'd

> > suggest contacting

> > all the top surgeons mentioned, summarizing your tests and

> > emailing

> > them. They LOVE to have us as patients and will contact

> > you. They

> > may be on vacations now, but persist. They will call you

> > back and

> > email. Some of them (seems like mostly West Coast) have

> > office

> > personnel barriers, but persist over them. The surgeons

> > and gi's

> > want us!!!!

> >

> > Save what you have. It is kind of like sun lotion. Even

> > though you

> > have burns (myotomies) maybe a few skin cancers removed,

> > you still

> > need to preserve what you have and use sun lotion. Save

> > your

> > esophagus, don't let it stretch. The techniques some

> > may use, such

> > as huge bottles of water gulped down, may get the food

> > down, but may

> > be stretching your esophagus.

> >

> > As I've mentioned many times, and others find it too

> > painful. I saw

> > on the machine at the end of a barium test, how the

> > carbonated water

> > pushed the barium down. Those of you getting bariums, see

> > if it

> > works for you also.

> >

> > Also many of us have weight issues, we tend to eat high fat

> > foods and

> > still be overweight with achalasia, even well-treated

> > achalasia.

> > Less informed gi's will see the weight gain as a sign

> > your stretching

> > esophagus is NOT a problem... they are wrong, in my humble

> > opinion,

> > which is non-medical. Some here have achalasia after, and

> > before

> > gastric bypass, so don't let weight be a sign of the

> > condition of

> > your esophagus.

> >

> > Totally guessing, I would say a dialation or two may be

> > what you

> > need, but you still must go to someone VERY experienced in

> > doing

> > that, as it can rupture and lead to surgery. Whatever

> > surgery you

> > need to try to keep your esophagus from stretching, I'd

> > suggest doing

> > at your age. If you were in your sunset years, then live

> > with it,

> > but you have way too much life to enjoy ahead of you. You

> > will

> > likely recover quickly and be up and about while the rest

> > of us are

> > still trying to walk down the hallway.

> >

> > Sandy in So Cal

> >

> > > > ... i am worried because the barium studies show

> > my esophagus

> > keeps getting bigger and bigger but i can still eat and

> > gain weight

> > and am worried to ignore it. ...

> > >

> > > Your esophagus can only get so big and then it is

> > going to be a

> > problem.

> > > I don't know that will keep getting bigger but I

> > see no reason it

> > > wouldn't if you don't do anything. It may be

> > that a dilatation or

> > > another myotomy could help slow the progression or

> > stop it. I don't

> > know

> > > if there is anything that will stop it in your case.

> > If I were you

> > I

> > > would be talking to some of the top experts in the

> > world, not just

> > > locally, to see if they think they can do something to

> > prevent it

> > from

> > > becoming a major problem.

> > >

> > > notan

> > >

>

[Guest guest]

Hi Mike,

I may have missed this in the postings, but where in NY are you? I'm upstate,

about an hour and half south of Syracuse - near the Binghamton area just over

the NY/PA border.

I'll spare you all the long details unless we need to go there, but I would

highly recommend you go out to The Cleveland Clinic in OH and see Dr.

Rice. He is an expert in his field, and one of the top surgeons in the country

for achalasia. He did my esophagectomy in March 2007, and I am doing fabulous.

From where I live it's about a 5 1/2 hour drive, but completely worth it.

Actually I just had a follow-up appointment last week with him and he was very

pleased with how I am doing and I don't have to go back for two years, which is

great. He also gave me clearance (his blessing as I like to say) to have another

baby if my husband and I so choose - not sure yet, but had asked the question so

we could make a decision).

Anyway, unlike you, I had not had any surgeries - only dilitations when I was

younger and first diagnosed. My esophagus had gotten enourmous, completely

stretched out and sigmoid. Basically I had an extra bucket where all the food

sat....and sat....and sat. It is not a good situation. You are at an increased

risk for aspiration and pneumonia as a result, which I had. You are probably not

getting proper nutrition because the food goes down so slowly. You should

definitely get yourself checked out. Like you, I had minimal symptoms, which is

why I didn't know how bad things had gotten. I had the usual difficulties, but I

also think after years of it being that way, we tend to adapt to it and not

realize how bad it really is (kind of like when your eyes start going but you

deny how much you are squinting and how blurry things are - it's like you over

compensate). I was 33 when I had my esophagectomy, and it was definitely scary.

On the flip side, having recovered from very severe aspiration pneumonia and

knowing things were a ticking time bomb and that I had two little kids to take

care of kind of made it an easy decision. (I say that lightly - it was anything

but easy). But I was at the point that the myotomy surgery would not have helped

me, and if it did, it would have been just a matter of time and the

esophagectomy would have been in my future. I chose to do it at a younger age,

while recovery would be easier and I would be at less risk for complications.

Also it was better for us to do it on our terms so we could arrange for care for

the kids and not have it be an emergency situation.

The most important thing for you to do is to see GI doctors and surgeons that

are HIGHLY experienced with achalasia. And get second and third opinions and

make an educated decision.

Good luck and keep us posted,

in NY

---- " mikemellia@... " <mikemellia@...> wrote:

> Hi im new- thanks everyone for all the great emails im glad im not completely

alone. what i am confused about is i had 2 myotemies already and can eat only

if i drink a lot of water with it. but generally am gaining weight and not

vomiting ever. i am worried because the barium studies show my esophagus keeps

getting bigger and bigger but i can still eat and gain weight and am worried to

ignore it. if there are no more options other than to remove the esophogus this

seems too extreme if i can tolerate the symptoms do you agree? in other words,

if i am told the only remaining option is to remove my esophogus why would i do

that if i can have a normal life except for having to chug water when i eat?

thanks

>

> mike in ny

> 28 yrs old

>

[Guest guest]

thanks very much. i live in manhattan. im going to see richter in philadelphia

and dr morris at nyu esophogus center i manhattan. i already see lambroza,

pomp, and fowler for the past few years all in nyc. maybe i will try to get to

OH also but it is not easy. i dont have aspiration problems because i sleep in

a chair which feels amazing but i know that does not solve the real problem.

thanks very much for the tip i will definitely look into it. what happens if

your esophogus gets removed and then you still cant eat sounds like you are

really left with no choices then. thanks again

mike nyc

28

> > Hi im new- thanks everyone for all the great emails im

> glad im not completely alone. what i am confused about is i

> had 2 myotemies already and can eat only if i drink a lot of

> water with it. but generally am gaining weight and not

> vomiting ever. i am worried because the barium studies show

> my esophagus keeps getting bigger and bigger but i can still

> eat and gain weight and am worried to ignore it. if there

> are no more options other than to remove the esophogus this

> seems too extreme if i can tolerate the symptoms do you

> agree? in other words, if i am told the only remaining

> option is to remove my esophogus why would i do that if i

> can have a normal life except for having to chug water when

> i eat? thanks

> >

> > mike in ny

> > 28 yrs old

> >

[Guest guest]

Mike,

Sounds like you are on the right track with seeing experienced doctors. Another

doctor in Philly you may want to look into is Dr. (?) Luketich, who I

believe is at UPMC. He is very experienced, and he was next on my list if I had

not gone to Cleveland when I did. Also, there is a doctor s at

Strong Memorial in Rochester, NY. I saw him first - he's a surgeon - this was

before I saw (or really knew about) Dr. Rice in Cleveland. Dr. s used to be

a bigwig at USC in California, and moved east a number of years ago - also very

competent and very experienced. Just some other options for you.

Again, I will beat the dead horse and keep saying - the most important thing is

for you to see experienced achalasia doctors. Seeing just any GI doc who has

only done a few surgeries will not be of help to you. And with two myotomies

under your belt already, this is crucial for you. I understand a trip to

Cleveland is difficult - it wasn't easy for us either - it is a long trip, we

have two little kids to think about every time we go, and he was out of network

for insurance. But we made it work and it was well worth it. Even if you just

make contact with him and send him your records to review - you may be able to

get some information out of him. I started off sending him and out of the blue

email - I wasn't a patient yet - just describing where I was at and what I had

done - the following night he called me at home himself. It's worth a shot.

First off, before I say anymore, I am not saying you should have the surgery, or

that if you do you should do it immediately. You cannot make any decisions until

you see at least one or two seriously experienced surgeons that do the

esophagectomy surgery many times a year. That being said, I can't speak of

someone having the surgery and not being able to eat again. I can honestly say I

understand your fears, as I was the same way when I first got the news that it

was what I needed. I am great - I eat everything and anything I want. Yes, it

takes a while during recovery to get back to normal, and even now on occassions

if I eat too much overall, or overdo certain things, I can pay the price. But I

can eat and swallow with no issues. I feel normal - which I never did

previously. It's been great. Hard at times - YES of course, but I am doing very

well. If you want to talk at any point just let me know. I'd be happy to share

my experience with you. But I think you should see the surgeons first and then

see where you think you will go with it and what they are recommending.

Good luck - I know from experience that you have some difficult decisions to

make. You will be in my thoughts.

in NY

---- " mikemellia@... " <mikemellia@...> wrote:

> thanks very much. i live in manhattan. im going to see richter in

philadelphia and dr morris at nyu esophogus center i manhattan. i already see

lambroza, pomp, and fowler for the past few years all in nyc. maybe i will try

to get to OH also but it is not easy. i dont have aspiration problems because i

sleep in a chair which feels amazing but i know that does not solve the real

problem. thanks very much for the tip i will definitely look into it. what

happens if your esophogus gets removed and then you still cant eat sounds like

you are really left with no choices then. thanks again

>

> mike nyc

> 28

>

>

>

> > > Hi im new- thanks everyone for all the great emails im

> > glad im not completely alone. what i am confused about is i

> > had 2 myotemies already and can eat only if i drink a lot of

> > water with it. but generally am gaining weight and not

> > vomiting ever. i am worried because the barium studies show

> > my esophagus keeps getting bigger and bigger but i can still

> > eat and gain weight and am worried to ignore it. if there

> > are no more options other than to remove the esophogus this

> > seems too extreme if i can tolerate the symptoms do you

> > agree? in other words, if i am told the only remaining

> > option is to remove my esophogus why would i do that if i

> > can have a normal life except for having to chug water when

> > i eat? thanks

> > >

> > > mike in ny

> > > 28 yrs old

> > >

[Guest guest]

Actually Mike, there are still " choices, " for there has to be a reason why you

are unable to eat if you have had your esophagus removed, and those reasons can

often be corrected without further surgery.  I suggest you check out the posts

of Isabella, presently on holiday, who has become a dear friend of mine.  She

suffered for a very long time after having two myotomies, some botox shots given

for temporary relief, followed by an ectomy that has not left her eating as well

as expected.  However, she and her doctors have been attacking the problem, and

they are optimistic that within a year after having the surgery, she should be

eating normally again.  While its not the results you would expect after putting

yourself thru an ectomy, the point is that its not all black and white. 

Good luck with Drs. Richter and Traube, and please make sure, especially with

Dr. Richter, that you have all your questions written down in advance.

Re: had 2 myotemies already- NY

thanks very much.  i live in manhattan.  im going to see richter in philadelphia

and dr morris at nyu esophogus center i manhattan.  i already see lambroza,

pomp, and fowler for the past few years all in nyc.  maybe i will try to get to

OH also but it is not easy.  i dont have aspiration problems because i sleep in

a chair which feels amazing but i know that does not solve the real problem. 

thanks very much for the tip i will definitely look into it.  what happens if

your esophogus gets removed and then you still cant eat sounds like you are

really left with no choices then.  thanks again

mike nyc

28

> > Hi im new- thanks everyone for all the great emails im

> glad im not completely alone.  what i am confused about is i

> had 2 myotemies already and can eat only if i drink a lot of

> water with it.  but generally am gaining weight and not

> vomiting ever.  i am worried because the barium studies show

> my esophagus keeps getting bigger and bigger but i can still

> eat and gain weight and am worried to ignore it.  if there

> are no more options other than to remove the esophogus this

> seems too extreme if i can tolerate the symptoms do you

> agree?  in other words, if i am told the only remaining

> option is to remove my esophogus why would i do that if i

> can have a normal life except for having to chug water when

> i eat?  thanks

> >

> > mike in ny

> > 28 yrs old

> >

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

[Guest guest]

thanks again richard and tracy. i have been going to all the doctors by myself,

but i usually just listen to whatever they say which is not that helpful and

dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

> > > Hi im new- thanks everyone for all the great

> emails im

> > glad im not completely alone.  what i am confused

> about is i

> > had 2 myotemies already and can eat only if i drink a

> lot of

> > water with it.  but generally am gaining weight and

> not

> > vomiting ever.  i am worried because the barium

> studies show

> > my esophagus keeps getting bigger and bigger but i can

> still

> > eat and gain weight and am worried to ignore it.  if

> there

> > are no more options other than to remove the esophogus

> this

> > seems too extreme if i can tolerate the symptoms do

> you

> > agree?  in other words, if i am told the only

> remaining

> > option is to remove my esophogus why would i do that

> if i

> > can have a normal life except for having to chug water

> when

> > i eat?  thanks

> > >

> > > mike in ny

> > > 28 yrs old

> > >

>

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

>

>

[Guest guest]

> > > > Hi im new- thanks everyone for all the great

> > emails im

> > > glad im not completely alone. what i am confused

> > about is i

> > > had 2 myotemies already and can eat only if i drink a

> > lot of

> > > water with it. but generally am gaining weight and

> > not

> > > vomiting ever. i am worried because the barium

> > studies show

> > > my esophagus keeps getting bigger and bigger but i can

> > still

> > > eat and gain weight and am worried to ignore it. if

> > there

> > > are no more options other than to remove the esophogus

> > this

> > > seems too extreme if i can tolerate the symptoms do

> > you

> > > agree? in other words, if i am told the only

> > remaining

> > > option is to remove my esophogus why would i do that

> > if i

> > > can have a normal life except for having to chug water

> > when

> > > i eat? thanks

> > > >

> > > > mike in ny

> > > > 28 yrs old

> > > >

> >

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

> >

> >

[Guest guest]

Oops, maybe I'm confused Mike, did you have your esophagus removed

already, I assumed that.

If you still can't eat, have you had dialations? If not, that

usually helps. LIkely your wraps were too tight or they have

scarred, causing you trouble, if you still have your esophagus.

Venable in the San Francisco area has had several myotomies

trying to keep her esophagus and is doing fairly well. Several

surgeons told her to remove it and she is trying to avoid that.

Overall, you have to do what you have to do, from the best

surgeon/doctors you can get to that have the most experience. Eating

is worth it! Emotionally and physically you will be better off.

Sandy

> > > > Hi im new- thanks everyone for all the great

> > emails im

> > > glad im not completely alone.  what i am confused

> > about is i

> > > had 2 myotemies already and can eat only if i drink a

> > lot of

> > > water with it.  but generally am gaining weight and

> > not

> > > vomiting ever.  i am worried because the barium

> > studies show

> > > my esophagus keeps getting bigger and bigger but i can

> > still

> > > eat and gain weight and am worried to ignore it.  if

> > there

> > > are no more options other than to remove the esophogus

> > this

> > > seems too extreme if i can tolerate the symptoms do

> > you

> > > agree?  in other words, if i am told the only

> > remaining

> > > option is to remove my esophogus why would i do that

> > if i

> > > can have a normal life except for having to chug water

> > when

> > > i eat?  thanks

> > > >

> > > > mike in ny

> > > > 28 yrs old

> > > >

> >

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

> >

> >

[Guest guest]

Hi Mike,

Over the years the topic of what questions to ask a doctor has come up, and in

our database, courtesy of Debbi, there is a list of questions to ask.

achalasia/database?method=reportRows & tbl=12

There are really only a couple I can see you asking, but perhaps it will give

you some thoughts as to what you would like to ask.  Some patients, regardless

of the disease can find doctors abrupt and intimidating and never get to say to

them what is really on their mind, thus the need to try to plan ahead of time

what to ask and have it written down.  I went with two pages of questions (hand

written and large print for ease of use).  Since our situations are similar I

wish I still had it to share with you.  Over the years some people have posted

their question, but that might be difficult to search for.  But, as you have

asked questions here, ask questions of them, (off the top of my head) such as:

What if I don't have the surgery, what may I expect?

Are you aware of any other option now, or sometime in the future?

What would you do, personally if you were in my position?

What are the downsides to having the surgery?

What if the surgery doesn't help me, what then?

Can I continue living my life this way without having the surgery?

What can I do to improve the quality of my life without having the surgery?

Are there other doctors you would recommend my getting an opinion from?

Should I have the surgery now, or would it make any difference if I waited?

What are the risks for waiting on having the surgery, or not having it at all?

How often should I be monitored if I don't have the surgery and what tests do

you recommend I have?

I could probably go on all day, but if everyone reading your message contributed

a question, you would be well prepared.

Some doctors appreciate their patients asking questions, while for others they

would rather not bother - after all they are telling you what to do, then you

should just do it.

Ultiimately, this is your body, your life, your decision.  Some people, for

support, are accompanied by their spouse or significant other, and sometimes

that person asks the question (your advocate).

Give this thought and always do what is best for you.

Re: had 2 myotemies already- NY

thanks again richard and tracy.  i have been going to all the doctors by myself,

but i usually just listen to whatever they say which is not that helpful and

dont usually ask a lot of questions.  i started bringing my girlfriend to ask

questions for me.  i know this sounds dumb but what do you think i should be

asking these doctors?  they always just say they dont know what the best outcome

is and just send me somewhere else.  i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up.  so i

know this sounds dumb but what do you ask your doctors?  thanks again

> > > Hi im new- thanks everyone for all the great

> emails im

> > glad im not completely alone.  what i am confused

> about is i

> > had 2 myotemies already and can eat only if i drink a

> lot of

> > water with it.  but generally am gaining weight and

> not

> > vomiting ever.  i am worried because the barium

> studies show

> > my esophagus keeps getting bigger and bigger but i can

> still

> > eat and gain weight and am worried to ignore it.  if

> there

> > are no more options other than to remove the esophogus

> this

> > seems too extreme if i can tolerate the symptoms do

> you

> > agree?  in other words, if i am told the only

> remaining

> > option is to remove my esophogus why would i do that

> if i

> > can have a normal life except for having to chug water

> when

> > i eat?  thanks

> > >

> > > mike in ny

> > > 28 yrs old

> > >

>

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

>

>

[Guest guest]

thanks again richarad and sandy im glad you are here

> From: toomuchclutter <sandycarroll@...>

> Subject: Re: had 2 myotemies already- NY

> achalasia

> Date: Wednesday, August 6, 2008, 2:04 AM

> Oops, maybe I'm confused Mike, did you have your

> esophagus removed

> already, I assumed that.

>

> If you still can't eat, have you had dialations? If

> not, that

> usually helps. LIkely your wraps were too tight or they

> have

> scarred, causing you trouble, if you still have your

> esophagus.

> Venable in the San Francisco area has had several

> myotomies

> trying to keep her esophagus and is doing fairly well.

> Several

> surgeons told her to remove it and she is trying to avoid

> that.

>

> Overall, you have to do what you have to do, from the best

> surgeon/doctors you can get to that have the most

> experience. Eating

> is worth it! Emotionally and physically you will be better

> off.

>

>

>

> Sandy

>

>

> > > > > Hi im new- thanks everyone for all the

> great

> > > emails im

> > > > glad im not completely alone.  what i am

> confused

> > > about is i

> > > > had 2 myotemies already and can eat only if

> i drink a

> > > lot of

> > > > water with it.  but generally am gaining

> weight and

> > > not

> > > > vomiting ever.  i am worried because the

> barium

> > > studies show

> > > > my esophagus keeps getting bigger and bigger

> but i can

> > > still

> > > > eat and gain weight and am worried to ignore

> it.  if

> > > there

> > > > are no more options other than to remove the

> esophogus

> > > this

> > > > seems too extreme if i can tolerate the

> symptoms do

> > > you

> > > > agree?  in other words, if i am told the

> only

> > > remaining

> > > > option is to remove my esophogus why would i

> do that

> > > if i

> > > > can have a normal life except for having to

> chug water

> > > when

> > > > i eat?  thanks

> > > > >

> > > > > mike in ny

> > > > > 28 yrs old

> > > > >

> > >

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

> > >

> > >

[Guest guest]

Hi Mike,

As I've been away for our summer holidays I haven't been on board the last

couple of weeks.

already wrote about me having had 2 mytomies (first Dec. 1995, second

Jan. 2007) and the -ectomy (31 March last).

I don't have an answer for you what your next step should be, other than to go

on with what you are doing right now: researching your options.

What I did when I was in somewhat the same shoes that you are in right now, is

ask ask ask. I have been in touch with several of the most renowned doc's in the

world. I was recommended having an -ectomy by my own hospital (the whole

experienced team) in Utrecht (The Netherlands, where I am from), by Prof. Lerut

(Belgium), Prof. Luketich (Pittsburgh) and Dr. Rice (Cleveland). The only one

against it all was Dr. Schulz (Germany), he wanted to give me a new type of

myotomy, but because of lack of experience and all risks involved I decided

against this one.

I mindmapped the whole thing. I'll include a copy of my mindmap (PDF-file) in

this post. Mindmapping my thoughts, questions and fears helped me a lot seeing

things clearer. Please be aware that this mindmap is personal; my thoughts,

questions and fears might change from yours. It's just an example of what one

can do to make the right choice in his own situation.

said she didn't know of anyone having had an -ectomy done and it not being

successfull... Well, I must admit she's not right at the moment. is

having serious trouble after her -ectomy and honestly things aren't all that

great in my case yet either.

I can add to that, that my problems are probably temporarily, I am not sure if

the same goes for (though I do hope and think so). Scar tissue closes

up my new esophagus over and over again, which is a normal complication to come

with this type of surgery at this young age (I was 34 at the moment of surgery).

Eating sometimes is true hell for me, worse than it was before my -ectomy. Each

and every day again swallowing means fighting for me, it never is fun. The first

few weeks after the surgery I felt like living a dream, now I hope that dream

will honestly come true for me like everyone promises. I need dilatations every

other week to push the scar tissue aside. As we were on holidays I couldn't have

my treatment and I notice I am now still able to get about 20 bites of food (the

mushy ones etc.) down daily, which is a slight improvement. For the rest I am on

tube right now.

The scar tissue will stop growing within the year. Furthermore it will lose it's

elasticity within the year and thus stop being a problem. My gastro-enterologist

says he already notices a huge difference now, as in the beginning he had to use

force to get the tube (for dilatation) down, whereas it slides down a lot easier

nowadays.

I honestly believe that this problem of mine will be solved within the year. I

just need to be patient and hang in there. It's just very very hard to do so,

after fighting against the achalasia for over 15 years. My surgeon does this

surgery a lot yearly, but only on cancer patients. These patients have other

problems going on, much more severe than mine of course. But there is a huge

difference in them and us: they are scared because of their cancer; we are

scared that we won't ever be able to eat normally again. In cancer patients the

scar tissue issue of course is common as well, but that doesn't scare them as

much as it scares us. My surgeon never had to deal with someone fearing these

swallowing issues as much as me, I can tell you that. Furthermore I can tell you

from the bottom of my heart, that this horrible thought (of never being able to

eat normally) keeps crossing my mind daily a whole lot of times. I KNOW I will

be fine, I KNOW it's a matter

of time, I KNOW I need to stay positive and hang in there, but I just get so

scared at times. I am so scared that I went through this whole thing to end up

even worse than I was before. I KNOW this is nonsens and I KNOW it's just not

the reality, but living with these problems just gives you these fears.

I don't want to scare you with my feelings and story, but it would be unfair not

telling you this, as you don't know what will happen in your case and as you

might have to deal with a situation similar to mine. If you are prepared you

might be facing another year with severe swallowing problems after an -ectomy,

things might just be little easier to handle mentally. I wish I had known this

upfront myself... Recovering from an -ectomy is no piece of cake, so you are

doing the right thing checking all your options.

Keep us posted on who you are seeing and what they advise, as well as how you

feel about this all.

Isabella

Re: had 2 myotemies already- NY

thanks again richard and tracy. i have been going to all the doctors by myself,

but i usually just listen to whatever they say which is not that helpful and

dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

> > > Hi im new- thanks everyone for all the great

> emails im

> > glad im not completely alone.  what i am confused

> about is i

> > had 2 myotemies already and can eat only if i drink a

> lot of

> > water with it.  but generally am gaining weight and

> not

> > vomiting ever.  i am worried because the barium

> studies show

> > my esophagus keeps getting bigger and bigger but i can

> still

> > eat and gain weight and am worried to ignore it.  if

> there

> > are no more options other than to remove the esophogus

> this

> > seems too extreme if i can tolerate the symptoms do

> you

> > agree?  in other words, if i am told the only

> remaining

> > option is to remove my esophogus why would i do that

> if i

> > can have a normal life except for having to chug water

> when

> > i eat?  thanks

> > >

> > > mike in ny

> > > 28 yrs old

> > >

>

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

>

>

[Guest guest]

Hey

Come on Isabella - more of the positive thinking please - it will be worth

it just hang on in there...

Andy

[Guest guest]

isabella thanks for the info i hope you are doing well.  as andrew said i also

have been struggling for many years and it really makes a big difference to

focus on the positive and to be working on something to distract you.  im taking

italian lessons and studying poker to stay positive right now !  thanks again. 

im goign to philadelphia tomorrow to se the doctors at temple and to nyu

esophegus center to see another dr on tuesday.  i will let you guys know if they

say anything helpful for you guys also.  thanks -mike in nyc- 28

From: Haigh <mr.gadget1961@...>

Subject: Re: Re: had 2 myotemies already- NY

achalasia

Date: Thursday, August 14, 2008, 3:31 PM

Hey

Come on Isabella - more of the positive thinking please - it will be worth

it just hang on in there...

Andy

[Guest guest]

Mike,

Good luck with your pursuit of answers.  While I can't predict how Dr. Richter

will be " speaking " to you, to me he came off rather aggressively and tried to

intimidate with a couple of his opening questions.  At the time, I was a bit

heavier than I normally am, so he was like saying to me:  " So, what's wrong, you

don't look like you have any problem at all eating, why are you here? "   As soon

as he saw my Xrays, plus the questions I had prepared in advance, his tone

quickly changed.  He's not a bad person, just his mannerisms can be a bit rough,

not unlike Dr. Rice (who he worked with for many yearss.  He has an

extraordinary amount of knowledge about achalasia.  As I said in earlier emails,

in so many words, make sure that anything that is on your mind that you want to

ask him, or just comment on, you get to do.  Sometimes a doctor's approach with

a patient can get them flustered, and the intended purpose of the consultation

does not always

result in a satisfactory experience.

You will find a different one on one " climate " with Dr. Traube.  They may both

say the same thing, but you need to know what your available options are.  I'm

hoping for the best!

   

Re: Re: had 2 myotemies already- NY

achalasia@grou ps.com

Date: Thursday, August 14, 2008, 3:31 PM

Hey

Come on Isabella - more of the positive thinking please - it will be worth

it just hang on in there...

Andy

[Guest guest]

Hi all,

Just want to clarify the part of Isabella's note that states:

" said she didn't know of anyone having had an -ectomy done and it not

being successfull... "

I never said that - there are quite a few people that have had some ongoing

complications. I would like to point out that " complications " do not necessarily

equate to an unsuccessful 'ectomy. Complications such as a build-up of scar

tissue at the connection site is a very common " complication " which may require

ongoing dilitations before the issue is resolved. I was lucky enough to not have

this issue, however many on the board have had it and some like Isabella are

still dealing with it. For some it is more severe than others. Another common

complication is the dumping syndrome, which again, does not mean the 'ectomy was

unsuccessful. While I have had some dumping on occassion, in comparison to some

I have been rather lucky. I think part of that is figuring out what works for

each person. One thing that works for me is to basically not drink anything when

I eat (or only have a few ounces of something).

I just want to clarify that I certainly do not make light of the complications

some people are facing, and I understand it can be very difficult. I went

through the surgery myself, and it is difficult and I faced my own hard times

with it. However, in stating that I was lucky to not have had many

complications, it may have been misinterpreted. Certainly there are people that

have complications, but again I would disagree that complications (especially

those that are still happening within a year of surgery) mean the 'ectomy itself

is unsuccessful.

Regardless, sorry if there was confusion.

in NY

---- Isabella Arnold <arnoldisabella@...> wrote:

> Hi Mike,

> As I've been away for our summer holidays I haven't been on board the last

couple of weeks.

> already wrote about me having had 2 mytomies (first Dec. 1995, second

Jan. 2007) and the -ectomy (31 March last).

> I don't have an answer for you what your next step should be, other than to go

on with what you are doing right now: researching your options.

> What I did when I was in somewhat the same shoes that you are in right now, is

ask ask ask. I have been in touch with several of the most renowned doc's in the

world. I was recommended having an -ectomy by my own hospital (the whole

experienced team) in Utrecht (The Netherlands, where I am from), by Prof. Lerut

(Belgium), Prof. Luketich (Pittsburgh) and Dr. Rice (Cleveland). The only one

against it all was Dr. Schulz (Germany), he wanted to give me a new type of

myotomy, but because of lack of experience and all risks involved I decided

against this one.

> I mindmapped the whole thing. I'll include a copy of my mindmap (PDF-file) in

this post. Mindmapping my thoughts, questions and fears helped me a lot seeing

things clearer. Please be aware that this mindmap is personal; my thoughts,

questions and fears might change from yours. It's just an example of what one

can do to make the right choice in his own situation.

> said she didn't know of anyone having had an -ectomy done and it not

being successfull... Well, I must admit she's not right at the moment.

is having serious trouble after her -ectomy and honestly things aren't all that

great in my case yet either.

> I can add to that, that my problems are probably temporarily, I am not sure if

the same goes for (though I do hope and think so). Scar tissue closes

up my new esophagus over and over again, which is a normal complication to come

with this type of surgery at this young age (I was 34 at the moment of surgery).

Eating sometimes is true hell for me, worse than it was before my -ectomy. Each

and every day again swallowing means fighting for me, it never is fun. The first

few weeks after the surgery I felt like living a dream, now I hope that dream

will honestly come true for me like everyone promises. I need dilatations every

other week to push the scar tissue aside. As we were on holidays I couldn't have

my treatment and I notice I am now still able to get about 20 bites of food (the

mushy ones etc.) down daily, which is a slight improvement. For the rest I am on

tube right now.

> The scar tissue will stop growing within the year. Furthermore it will lose

it's elasticity within the year and thus stop being a problem. My

gastro-enterologist says he already notices a huge difference now, as in the

beginning he had to use force to get the tube (for dilatation) down, whereas it

slides down a lot easier nowadays.

> I honestly believe that this problem of mine will be solved within the year. I

just need to be patient and hang in there. It's just very very hard to do so,

after fighting against the achalasia for over 15 years. My surgeon does this

surgery a lot yearly, but only on cancer patients. These patients have other

problems going on, much more severe than mine of course. But there is a huge

difference in them and us: they are scared because of their cancer; we are

scared that we won't ever be able to eat normally again. In cancer patients the

scar tissue issue of course is common as well, but that doesn't scare them as

much as it scares us. My surgeon never had to deal with someone fearing these

swallowing issues as much as me, I can tell you that. Furthermore I can tell you

from the bottom of my heart, that this horrible thought (of never being able to

eat normally) keeps crossing my mind daily a whole lot of times. I KNOW I will

be fine, I KNOW it's a matter

> of time, I KNOW I need to stay positive and hang in there, but I just get so

scared at times. I am so scared that I went through this whole thing to end up

even worse than I was before. I KNOW this is nonsens and I KNOW it's just not

the reality, but living with these problems just gives you these fears.

> I don't want to scare you with my feelings and story, but it would be unfair

not telling you this, as you don't know what will happen in your case and as you

might have to deal with a situation similar to mine. If you are prepared you

might be facing another year with severe swallowing problems after an -ectomy,

things might just be little easier to handle mentally. I wish I had known this

upfront myself... Recovering from an -ectomy is no piece of cake, so you are

doing the right thing checking all your options.

> Keep us posted on who you are seeing and what they advise, as well as how you

feel about this all.

> Isabella

>

>

>

> Re: had 2 myotemies already- NY

>

>

> thanks again richard and tracy. i have been going to all the doctors by

myself, but i usually just listen to whatever they say which is not that helpful

and dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

>

>

> > > > Hi im new- thanks everyone for all the great

> > emails im

> > > glad im not completely alone.  what i am confused

> > about is i

> > > had 2 myotemies already and can eat only if i drink a

> > lot of

> > > water with it.  but generally am gaining weight and

> > not

> > > vomiting ever.  i am worried because the barium

> > studies show

> > > my esophagus keeps getting bigger and bigger but i can

> > still

> > > eat and gain weight and am worried to ignore it.  if

> > there

> > > are no more options other than to remove the esophogus

> > this

> > > seems too extreme if i can tolerate the symptoms do

> > you

> > > agree?  in other words, if i am told the only

> > remaining

> > > option is to remove my esophogus why would i do that

> > if i

> > > can have a normal life except for having to chug water

> > when

> > > i eat?  thanks

> > > >

> > > > mike in ny

> > > > 28 yrs old

> > > >

> >

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

> >

> >

[Guest guest]

Hi ,

 

Indeed there has been some misinterpretation, but that doesn't mean that I ever

thought you made light of the complications one might undergo after an -ectomy.

I know you take everyone's problems serious, but I misinterpreted you by

thinking you might have forgotten for just a second while typing your message

that there are some fighting huge complications after their -ectomy and losing

hope on a positive outcome. Sorry for that.

 

What I wanted to point out, is that one shouldn't think that an -ectomy is the

hurray surgery, as is simply isn't. If there is anyone out there that might be

facing an -ectomy, I want them to know all there is to know about it. They

should know about the hurray outcomes, as well as about the

disappointments. It's a huge disappointment after undergoing this surgery to

find out that you still cannot eat.

 

My -ectomy certainly feels like an unsuccessfull one. Sure the -ectomy is

successfull: my esophagus is out and therefore so is my achalasia. But what does

it bring one if troubles are as hard or even harder as during the achalasia

days? The only difference right now is that it's not called achalasia anymore

but scar tissue...

 

In 's case the -ectomy has been done a long time ago already. That

makes one wonder when one gets the complications...

 

Like I wrote before: at the moment I am doing much better again mentally. But

it's all against a very very high price.

 

After 15 years I finally wanted to eat again and just like after my

unsuccessfull myotomy last year I was given the opportunity to do so, but only

for such short a while. This really makes one wonder and there's nothing or

nobody that can stop these doubts untill the problem has been solved. The only

thing that's left for us here again is hope and positivity. I am very thankfull

to have regained that the last couple of days.

 

It would have been so much easier to cope with all of this if I had known

upfront that this might happen. I had heard about scar tissue, but I from what I

read I never expected things to get as bad as they did in me (and ).

 

Love,

Isabella

 

 

Re: had 2 myotemies already- NY

>

>

> thanks again richard and tracy. i have been going to all the doctors by

myself, but i usually just listen to whatever they say which is not that helpful

and dont usually ask a lot of questions. i started bringing my girlfriend to ask

questions for me. i know this sounds dumb but what do you think i should be

asking these doctors? they always just say they dont know what the best outcome

is and just send me somewhere else. i usually say " ok i guess this guy doesnt

know what to do " and then dont really ask too many questions and give up. so i

know this sounds dumb but what do you ask your doctors? thanks again

>

>

> > > > Hi im new- thanks everyone for all the great

> > emails im

> > > glad im not completely alone.  what i am confused

> > about is i

> > > had 2 myotemies already and can eat only if i drink a

> > lot of

> > > water with it.  but generally am gaining weight and

> > not

> > > vomiting ever.  i am worried because the barium

> > studies show

> > > my esophagus keeps getting bigger and bigger but i can

> > still

> > > eat and gain weight and am worried to ignore it.  if

> > there

> > > are no more options other than to remove the esophogus

> > this

> > > seems too extreme if i can tolerate the symptoms do

> > you

> > > agree?  in other words, if i am told the only

> > remaining

> > > option is to remove my esophogus why would i do that

> > if i

> > > can have a normal life except for having to chug water

> > when

> > > i eat?  thanks

> > > >

> > > > mike in ny

> > > > 28 yrs old

> > > >

> >

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

> >

> >

[Guest guest]

Isabella- I am sorry to hear of all these ongoing issues! I thought

that this whole ectomy thing was the end,the final,the no more

problems, the finally norm,....and its not.Im very concerned cause I

know the day may come when may need one and I cant say " This is

the fix finally " cause in reality I now see its not.II thought it

was.

I do not see how you have been hanging in and being so positive and

not being able to open up to your family about your on going still

problems.It would be better if you have people to talk to about

it.Do you talk with your friends about your disappointments and such?

Its just not good to keep things bottled up inside.Do know I am here

if you ever want to talk!!

I hope to soon see things get better for you-enough is enough! Im

thinking about you girl.

Tonia

> > > > > Hi im new- thanks everyone for all the great

> > > emails im

> > > > glad im not completely alone.  what i am confused

> > > about is i

> > > > had 2 myotemies already and can eat only if i drink a

> > > lot of

> > > > water with it.  but generally am gaining weight and

> > > not

> > > > vomiting ever.  i am worried because the barium

> > > studies show

> > > > my esophagus keeps getting bigger and bigger but i can

> > > still

> > > > eat and gain weight and am worried to ignore it.  if

> > > there

> > > > are no more options other than to remove the esophogus

> > > this

> > > > seems too extreme if i can tolerate the symptoms do

> > > you

> > > > agree?  in other words, if i am told the only

> > > remaining

> > > > option is to remove my esophogus why would i do that

> > > if i

> > > > can have a normal life except for having to chug water

> > > when

> > > > i eat?  thanks

> > > > >

> > > > > mike in ny

> > > > > 28 yrs old

> > > > >

> > >

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

> > >

> > >

[Guest guest]

Dear Tonia,

I am sorry to hear how worried you are concerning ' situation, though I

very much understand why that is. If he were my son, I'ld probably be as

concerned as you are.

Regarding the -ectomy... well, it's just not plain black and white. In some

patients it's THE solution, in others it just takes a long time before going

through it all pays off, guess I belong to the second group...

It's not that I am totally negative about my surgery. I needed it and there was

no other option for me. It was a wise decision. It's only a pity (and a huge

disappointment) that it is taking me so long to recover and that my body forms

this amount of scar tissue.

When I wrote my messages on the negative sides of the -ectomy I didn't intend to

take anyone's hope or positivity regarding this surgery. What needs to be done

just needs to be done and we're all going to make it, no matter how hard it

sometimes might be. We all know that it's no walk in the parc, piece of cake or

whatever one names it. It's major surgery with major consequences. But by the

looks of it, it still is the one and only surgery that definitely puts an end to

the achalasia (though it might take one over a year to get to that point, I

honestly don't see me back to " normal " eating within one year post-surgery).

Never forget that everyone is different and every body reacts different, heals

different and has different needs. Tonia, you know the positive stories as well.

Bear those in mind, that's important. If you combine it with a realistic view on

the negatives of the -ectomy the circle is round and you have the right

expectations and won't be so disappointed should it ever come this far.

You are right where it concerns the need of friends to talk to about my

situation. Of course my family knows about my inability to eat and my need for

dilatations etc. Yet, they didn't know about my pessimism earlier on. It's good

to have friends one is able to talk to about this. Of course (my Dutch

-ectomy friend) is there for me, we are in very close contact. Furthermore I

have a few other very very dear achalasian friends to help me get through this.

It's so good to have this board as well. This board is very important to me and

helps me a great deal.

Thanks, Tonia!

Love,

Isabella

Re: had 2 myotemies already- NY

Isabella- I am sorry to hear of all these ongoing issues! I thought

that this whole ectomy thing was the end,the final,the no more

problems, the finally norm,....and its not.Im very concerned cause I

know the day may come when may need one and I cant say " This is

the fix finally " cause in reality I now see its not.II thought it

was.

I do not see how you have been hanging in and being so positive and

not being able to open up to your family about your on going still

problems.It would be better if you have people to talk to about

it.Do you talk with your friends about your disappointments and such?

Its just not good to keep things bottled up inside.Do know I am here

if you ever want to talk!!

I hope to soon see things get better for you-enough is enough! Im

thinking about you girl.

Tonia

> > > > > Hi im new- thanks everyone for all the great

> > > emails im

> > > > glad im not completely alone.  what i am confused

> > > about is i

> > > > had 2 myotemies already and can eat only if i drink a

> > > lot of

> > > > water with it.  but generally am gaining weight and

> > > not

> > > > vomiting ever.  i am worried because the barium

> > > studies show

> > > > my esophagus keeps getting bigger and bigger but i can

> > > still

> > > > eat and gain weight and am worried to ignore it.  if

> > > there

> > > > are no more options other than to remove the esophogus

> > > this

> > > > seems too extreme if i can tolerate the symptoms do

> > > you

> > > > agree?  in other words, if i am told the only

> > > remaining

> > > > option is to remove my esophogus why would i do that

> > > if i

> > > > can have a normal life except for having to chug water

> > > when

> > > > i eat?  thanks

> > > > >

> > > > > mike in ny

> > > > > 28 yrs old

> > > > >

> > >

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

> > >

> > >