Anyone had an esophagectomy?

[Guest guest]

....I was wondering if anyone has had this procedure and how life is

afterwards? I am supposed to go to s Hopkins, MD (I am in FL) to

get their opinion on what to do next since I am still " broke " after two

surgeries here in FL.

[Guest guest]

Hi. I love your E-mail address.

There are about 9 of us who regularly post on this board that have had the oesophagectomy procedure and we are all willing to share our experiences and thoughts. Some had their 'ectomy some time ago and I think their perspective would be very valuable for you as mine is still healing. On the whole, I am really glad I had it done (or at least I am now, 2 months later). But, I was so bad pre opertaively I left myself with very little choice for a good quality of life (I am 43). Happy to answer any specific questions you may have either openly through the board or in private (as most regular posters have heard me say it all before).

All the best

STEVE

Anyone had an esophagectomy?

....I was wondering if anyone has had this procedure and how life is afterwards? I am supposed to go to s Hopkins, MD (I am in FL) to get their opinion on what to do next since I am still "broke" after two surgeries here in FL.

The all-new goes wherever you go - free your email address from your Internet provider.

[Guest guest]

OH great (I mean not that the 9 of you had it - but that you are all

here to talk about the experience)! I wonder where I can find your

old posts so you dont have to repeat yourself? Isnt that surgery

kind of the last resort? How do they decide to finally do that

procedure? Do you know who is considered the best hospitals/surgeons

i the world for that procedure?

>

> Hi. I love your E-mail address.

>

> There are about 9 of us who regularly post on this board that have

had the oesophagectomy procedure and we are all willing to share our

experiences and thoughts. Some had their 'ectomy some time ago and I

think their perspective would be very valuable for you as mine is

still healing. On the whole, I am really glad I had it done (or at

least I am now, 2 months later). But, I was so bad pre opertaively I

left myself with very little choice for a good quality of life (I am

43). Happy to answer any specific questions you may have either

openly through the board or in private (as most regular posters have

heard me say it all before).

>

> All the best

>

> STEVE

>

>

> Anyone had an esophagectomy?

>

> ...I was wondering if anyone has had this procedure and how life is

> afterwards? I am supposed to go to s Hopkins, MD (I am in FL)

to

> get their opinion on what to do next since I am still " broke " after

two

> surgeries here in FL.

>

>

>

>

>

>

> ___________________________________________________________

> What kind of emailer are you? Find out today - get a free analysis

of your email personality. Take the quiz at the

Championship.

> http://uk.rd./evt=44106/*http://mail..net/uk

>

[Guest guest]

Hi, OK let's take them in turn.

Isn't that surgery kind of the last resort?

This is tricky (I find most questions tricky as they are so personally driven). Out of all the things that can be done for achalasia the oesophagectomy carries the greatest risks, so I guess it is an intervention that is reserved until all other lower risk alternatives have been tried. These alternative interventions tend to work. However, there is a condition called "End Stage Achalasia" and this is exactly what it says it is. It tends to be the phase of the illness where none of the other interventions work. Consequently the oesophagus dilates up even more, sometimes it twists in on itself, this makes the problem even worse and we then end up in a surgeon's clinic as the weight is pouring off us. The majority of Achalasians never get to this stage, they manage very well on the other treatments. But a few of us do get there. This is what I call

the last resort. However, there is enormous variation across the world with this particualr procedure. Some centres carry a mortality rate of over 20% and some have a mortality rate of under 1% (there are explanations for this). There are many other procedures that carry a risk of greater than 1% and they are not referred to as last resorts. Also, there is a choice. I could have decided to carry on with the achalasia. So, for me I don't consider this a last resort. I saw it as taking control and doing my best to erradicate the old problem (and OK, get a new one instead!).

How do they decide to fnally do that procedure?

That's more easy. It was 100% my decision. In terms of the best surgical approach and technique. That was decided by the surgeon in discussion with myself.

Do you know who is considered the best hospitals/surgeons in the world?

Unfortunately I have no knowledge of the USA centres and others on this board may be able to assist you with that. I know that in the UK Newcastle and St ' are world centres for oesophagectomy.

Happy to answer any other questions you may have. You can E-mail me privately if you prefer, although some people prefer an open discussion so that they can also read the answers.

STEVE

Anyone had an esophagectomy?> > ...I was wondering if anyone has had this procedure and how life is > afterwards? I am supposed to go to s Hopkins, MD (I am in FL) to > get their opinion on what to do next since I am still "broke" after two > surgeries here in FL.>

> > > > > > ____________ _________ _________ _________ _________ _________ _ > What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Championship. > http://uk.rd. / evt=44106/ *http://mail. .net/ uk>

New is the ultimate force in competitive emailing. Find out more at the Championships. Plus: play games and win prizes.

[Guest guest]

Great email address! HERE ! HERE ! Still "broke"?! Gads, that's not fair. This "A" thing has a lot to answer to. I hope you get some good advice and help from this website and from s Hopkins, too. In the meantime, hang in there. The stories I've read here are nothing short of heroic. You and I are in good company! Deborah

[Guest guest]

Hello:

My name is Mike (in Virginia) and I'm one of the " lucky " 9 who have

had the espohagectomy surgery. Mine was on Sept 14th. I joined this

group not long before my surgery and have made several " progress

report " postings since. Look for them as well as some of the other

folks and I think you'll find some useful info.

If you'd like me to answer any specific questions, just let me know

and I'll do my best. If you go this route, the first 2 months or so

afterwards is a " bumpy ride " but I think all-in-all worth the trip.

Regardless of your decision I hope all goes well for you.

Mike in VA

> >

> > Hi. I love your E-mail address.

> >

> > There are about 9 of us who regularly post on this board that

have

> had the oesophagectomy procedure and we are all willing to share

our

> experiences and thoughts. Some had their 'ectomy some time ago

and I

> think their perspective would be very valuable for you as mine is

> still healing. On the whole, I am really glad I had it done (or

at

> least I am now, 2 months later). But, I was so bad pre

opertaively I

> left myself with very little choice for a good quality of life (I

am

> 43). Happy to answer any specific questions you may have either

> openly through the board or in private (as most regular posters

have

> heard me say it all before).

> >

> > All the best

> >

> > STEVE

> >

> >

> > Anyone had an esophagectomy?

> >

> > ...I was wondering if anyone has had this procedure and how life

is

> > afterwards? I am supposed to go to s Hopkins, MD (I am in

FL)

> to

> > get their opinion on what to do next since I am still " broke "

after

> two

> > surgeries here in FL.

> >

> >

> >

> >

> >

> >

> > ___________________________________________________________

> > What kind of emailer are you? Find out today - get a free

analysis

> of your email personality. Take the quiz at the

> Championship.

> > http://uk.rd./evt=44106/*http://mail..net/uk

> >

>

[Guest guest]

Where in FL are you? We are in Orlando. Who did your previous surgeries? Patty in FLachalasiagoaway <achalasiagoaway@...> wrote: ...I was wondering if anyone has had this procedure and how life is afterwards? I am supposed to go to s Hopkins, MD (I am in FL) to get their opinion on what to do next since I am still "broke" after two surgeries here in FL.

Everyone is raving about the all-new beta.

[Guest guest]

Central near Daytona, am only 45 min from North Orlando (downtown).

My surgeries were at the Mayo Clinic in Jax.

> ...I was wondering if anyone has had this procedure and

how life is

> afterwards? I am supposed to go to s Hopkins, MD (I am in FL)

to

> get their opinion on what to do next since I am still " broke " after

two

> surgeries here in FL.

>

>

>

>

>

>

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

> Everyone is raving about the all-new beta.

>

[Guest guest]

I thought it was the last resort, just kind of figured two myotomy's

was about the limit, maybe not? I will try it again with a different

surgeon though. If the best are in the UK I would sell it all to pay

my way to have it done there, whatever it takes - you only live once

(at least I think so !) - if not this life is punishment for all

the bad things I did in my past life or all the fun I had - who

knows? !

> >

> > Hi. I love your E-mail address.

> >

> > There are about 9 of us who regularly post on this board that

have

> had the oesophagectomy procedure and we are all willing to share

our

> experiences and thoughts. Some had their 'ectomy some time ago and

I

> think their perspective would be very valuable for you as mine is

> still healing. On the whole, I am really glad I had it done (or at

> least I am now, 2 months later). But, I was so bad pre opertaively

I

> left myself with very little choice for a good quality of life (I

am

> 43). Happy to answer any specific questions you may have either

> openly through the board or in private (as most regular posters

have

> heard me say it all before).

> >

> > All the best

> >

> > STEVE

> >

> >

> > Anyone had an esophagectomy?

> >

> > ...I was wondering if anyone has had this procedure and how life

is

> > afterwards? I am supposed to go to s Hopkins, MD (I am in FL)

> to

> > get their opinion on what to do next since I am still " broke "

after

> two

> > surgeries here in FL.

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ _________ _________ _________ _

> > What kind of emailer are you? Find out today - get a free

analysis

> of your email personality. Take the quiz at the

> Championship.

> > http://uk.rd. / evt=44106/ *http://mail. .net/ uk

> >

>

>

>

>

>

>

> ___________________________________________________________

> The all-new goes wherever you go - free your email

address from your Internet provider.

http://uk.docs./nowyoucan.html

>

[Guest guest]

Where did you have it done and do you feel they were the best, did

you research them or get a referral or ??? How many myotomys didi

you have prior to making this decision? Thank you! Steph

> > >

> > > Hi. I love your E-mail address.

> > >

> > > There are about 9 of us who regularly post on this board that

> have

> > had the oesophagectomy procedure and we are all willing to share

> our

> > experiences and thoughts. Some had their 'ectomy some time ago

> and I

> > think their perspective would be very valuable for you as mine is

> > still healing. On the whole, I am really glad I had it done (or

> at

> > least I am now, 2 months later). But, I was so bad pre

> opertaively I

> > left myself with very little choice for a good quality of life (I

> am

> > 43). Happy to answer any specific questions you may have either

> > openly through the board or in private (as most regular posters

> have

> > heard me say it all before).

> > >

> > > All the best

> > >

> > > STEVE

> > >

> > >

> > > Anyone had an esophagectomy?

> > >

> > > ...I was wondering if anyone has had this procedure and how

life

> is

> > > afterwards? I am supposed to go to s Hopkins, MD (I am in

> FL)

> > to

> > > get their opinion on what to do next since I am still " broke "

> after

> > two

> > > surgeries here in FL.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ___________________________________________________________

> > > What kind of emailer are you? Find out today - get a free

> analysis

> > of your email personality. Take the quiz at the

> > Championship.

> > > http://uk.rd./evt=44106/*http://mail..net/uk

> > >

> >

>

[Guest guest]

I had mine done at UVA (University of Virginia) Medical Center by

Dr. in Sept.I was referred by my local GI doctor who

interned with Dr. at UVA. I did do some research on Dr.

prior to the surgery (not so much about UVA - it's a teaching

hospital so I was OK with it). I had my myotomy in 1976 - it was an

open one (only option back then). My endoscope showed that my

condition was " end stage " and my E was very sigmoid (distorted and

enlarged).

It wasn't really a tough decision for me. I was told that it was my

choice but if I waited that in a few years I'd " be lucky to be able

to swallow my own saliva. " So it was really a no brainer. The

procedure is a major surgery but the 7 days in the hospital went

quick. The recoup at home seemed to drag on. The worst was the

feeding tube in for 5 weeks. Didn't need it but there " just in

case. " Once it came out I instantly felt about 70% better.

It's been 4 months and I'm still not 100%. That will take up to a

year. I can eat whatever I want and having absolutely NO problems

with food going down. No reflux problems and I'm on no meds. I can't

eat as much and have to be aware of dumping issues (which seem to be

under control for the most part). Hope this helps

Mike in VA

> > > >

> > > > Hi. I love your E-mail address.

> > > >

> > > > There are about 9 of us who regularly post on this board

that

> > have

> > > had the oesophagectomy procedure and we are all willing to

share

> > our

> > > experiences and thoughts. Some had their 'ectomy some time

ago

> > and I

> > > think their perspective would be very valuable for you as mine

is

> > > still healing. On the whole, I am really glad I had it done

(or

> > at

> > > least I am now, 2 months later). But, I was so bad pre

> > opertaively I

> > > left myself with very little choice for a good quality of life

(I

> > am

> > > 43). Happy to answer any specific questions you may have

either

> > > openly through the board or in private (as most regular

posters

> > have

> > > heard me say it all before).

> > > >

> > > > All the best

> > > >

> > > > STEVE

> > > >

> > > >

> > > > Anyone had an esophagectomy?

> > > >

> > > > ...I was wondering if anyone has had this procedure and how

> life

> > is

> > > > afterwards? I am supposed to go to s Hopkins, MD (I am

in

> > FL)

> > > to

> > > > get their opinion on what to do next since I am

still " broke "

> > after

> > > two

> > > > surgeries here in FL.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ___________________________________________________________

> > > > What kind of emailer are you? Find out today - get a free

> > analysis

> > > of your email personality. Take the quiz at the

> > > Championship.

> > > > http://uk.rd./evt=44106/*http://mail..net/uk

> > > >

> > >

> >

>

[Guest guest]

You are NOT being punished!!!! None of us picked this disease or

did anything to deserve it!! I have also had two myotomy’s, on both sides

of my E. So I know my next resort is a removal if no more dilations work.

I’ve had two since my last surgery, and I will continue with them until

they don’t work anymore. Then I will have a choice to make.

Hopefully that’s a ways away from now. As I am not a good

patient!! I don’t like being out of control of situations!! Get all

the info that you can, and if you are here in the states I’m sure that we

could find a doctor here that could perform the surgery for you once we all put

our brains together.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of achalasiagoaway

Sent: Sunday, January 21, 2007 12:06 AM

achalasia

Subject: Re: Anyone had an esophagectomy?

I thought it was the last resort, just kind of

figured two myotomy's

was about the limit, maybe not? I will try it again with a different

surgeon though. If the best are in the UK I would sell it all to pay

my way to have it done there, whatever it takes - you only live once

(at least I think so !) - if not this life is punishment for all

the bad things I did in my past life or all the fun I had - who

knows? !

> >

> > Hi. I love your E-mail address.

> >

> > There are about 9 of us who regularly post on this board that

have

> had the oesophagectomy procedure and we are all willing to share

our

> experiences and thoughts. Some had their 'ectomy some time ago and

I

> think their perspective would be very valuable for you as mine is

> still healing. On the whole, I am really glad I had it done (or at

> least I am now, 2 months later). But, I was so bad pre opertaively

I

> left myself with very little choice for a good quality of life (I

am

> 43). Happy to answer any specific questions you may have either

> openly through the board or in private (as most regular posters

have

> heard me say it all before).

> >

> > All the best

> >

> > STEVE

> >

> >

> > Anyone had an esophagectomy?

> >

> > ...I was wondering if anyone has had this procedure and how life

is

> > afterwards? I am supposed to go to s Hopkins, MD (I am in FL)

> to

> > get their opinion on what to do next since I am still

" broke "

after

> two

> > surgeries here in FL.

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ _________ _________ _________ _

> > What kind of emailer are you? Find out today - get a free

analysis

> of your email personality. Take the quiz at the

> Championship.

> > http://uk.rd. / evt=44106/ *http://mail. .net/ uk

> >

>

>

>

>

>

>

> __________________________________________________________

> The all-new goes wherever you go - free your email

address from your Internet provider.

http://uk.docs./nowyoucan.html

>

[Guest guest]

Thank you! I go for a barium swallow next Fri at Mayo again and will

see what they say, then same deal plus endo flouro in Baltimore at

s Hopkins at end of Feb, sounds like they are real good

there...so we will see! I am just so discouraged I dont know how

people survive if they dont have disability insurance or something, I

am SO sick and not sure what to do, I want to lie in bed because my

body aches from assumably the malnourishment, etc... I started to

apply for SSD and the online deal is so time consuming, I have no

memory and cant sit at the computer that long so who knows when I

will finish. I did speak with about half a dozen attys that do SSD

appeals/claims and they said a good case takes up to 2.5 years to be

approved, holy cow, how can one be without income that long - beats

me!

I definately would like to know all the Dr.'s out there that have

done esophagectomys that the folks are actually pleased with, I

understand mortality rate is lower when they have done more of them

so needless to say if and only if this is the only option I want to

go to the place where they have done the most wherever that may be.

> > >

> > > Hi. I love your E-mail address.

> > >

> > > There are about 9 of us who regularly post on this board that

> have

> > had the oesophagectomy procedure and we are all willing to share

> our

> > experiences and thoughts. Some had their 'ectomy some time ago

and

> I

> > think their perspective would be very valuable for you as mine is

> > still healing. On the whole, I am really glad I had it done (or

at

> > least I am now, 2 months later). But, I was so bad pre

opertaively

> I

> > left myself with very little choice for a good quality of life (I

> am

> > 43). Happy to answer any specific questions you may have either

> > openly through the board or in private (as most regular posters

> have

> > heard me say it all before).

> > >

> > > All the best

> > >

> > > STEVE

> > >

> > >

> > > Anyone had an esophagectomy?

> > >

> > > ...I was wondering if anyone has had this procedure and how

life

> is

> > > afterwards? I am supposed to go to s Hopkins, MD (I am in

FL)

> > to

> > > get their opinion on what to do next since I am still " broke "

> after

> > two

> > > surgeries here in FL.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ _________ _________ _________

_

> > > What kind of emailer are you? Find out today - get a free

> analysis

> > of your email personality. Take the quiz at the

> > Championship.

> > > http://uk.rd. / evt=44106/ *http://mail. .net/ uk

> > >

> >

> >

> >

> >

> >

> >

> > __________________________________________________________

> > The all-new goes wherever you go - free your email

> address from your Internet provider.

> http://uk.docs./nowyoucan.html

> >

>