Re: Thanks for support re esophagectomy

[Guest guest]

Wow you sound just like me. I keep wondering when I will have to get mine removed. How do the doctors make that decision to do that surgery. Sometimes I wonder if they should just get it over with and do the removal. Oh only time will tell with me. I wish you the best and hope all goes well.

in Suffolk

[Guest guest]

I agree there. Three week ago I was not able to eat or drink either. My "E" is also very distended and angulated. So I had a dilation done to tide me over for surgery. I am 2 weeks post op now. My first myotomy did not end up well and it was done lapro. This time I had it open. My surgeon this time said that the motomy was not far enough done onto the stomach and also that the wrap was to tight and not in the right place. He undid the wrap and extended the moytomy. He did not redo the wrap this time. He hope tha that will help in my eating. I still can feel food witting in my "E" cause of how angulated it is but I am eating better and with out pain. That is a pluss. I still wonder when and if I will have to have my "E" removed.

in Suffolk

[Guest guest]

Dr. Rice prefers minimally invasive, I believe, but also will "open you up" if needed to get the desired effect -- it just depends on each individual's situation. We had a member here who *thought* she had achalasia, but the true source of her problems was a majorly messed-up fundoplication surgery she'd had for her acid reflux a year or two previous. Dr. Rice thought he could go in and repair the damage laparoscopically, but then when he got in there the damage was too severe and he had to open her up. He ended up having to do a partial esophagectomy on her. (Another thing to consider -- do they need to remove your ENTIRE esophagus, or just the bottom portion?)

One thing to keep in mind, too, as you talk to different surgeons. The main reason for performing an esophagectomy is because of cancer of the esophagus. You might want to check and see if the various surgeons have any experience with achalasia and esophagectomy, too.

Debbi in Michigan

Thanks so much for all the responses. I read about woman who is having surgery this week. Wish her all the best. 1st off I am at work so don't have much time to write so will continue when I get home tonight. I live on Long Island ....Pittsburgh and Cleveland will be a trek but am willing to travel to get the best care. Do you know what kind of surgical approach Dr. Rice uses? These are the approaches I know about so far: Transhiatal (two incisions (one abdomen, one neck) or Thoracotomy and laparotomy (two or three major incisions) and minimally invasive thoracoscopic (VATS)/ laparoscopic with one major incision in the neck.) I have been in touch with Dr. Luketich's office at U of Pitts since he is developer of thoracoscopic/laparoscopic approach to esophagectomy. Have also consulted with thorasic and laparascopic surgeons in NYC at NY Presby-Columbia/Cornell Med Ctr. Had not heard of Dr. Rice in Cleveland since I was really concentrating on getting info on minimally invasive surgery. I have asked many, many questions but need to have info from a patient's perspective. Like how does one feel after surgery? where does it hurt? can you ever really eat a regular diet again (other than pureed/soft food)? I have not eaten normally in 30 years, even after myotomies. I have a 'mega- sygmoid- esophagus, very large and 'tortured' but the thought of losing it totally is still difficult. Also losing at least 1 third of my stomach to boot is another difficult thing to process. Also just feel so stressed, run down from not getting proper nutrition for months. I make of soymilk smoothies, eat creamed soups, lots of Ensure. But food is still sitting and rotting in my chest for days. My esophagus is never empty even after days on liquid diet. Anyway more later. Thanks again for support.

[Guest guest]

All doctors I have consulted have experience with achalasia. All

doctors who have treated my achalasia agree that it is time to take

out my esophagus. There is no peristalsis. It is quite eroded,

inflamed from food sitting in it constantly. It is about 2 to 3

times bigger than normal and very 'curved' (ie. tortured, sigmoid

shape) Risk of developing cancer is increased. Have had multiple

dilitations and 2 myotomies (with fundoplication and have had

fundoplication taken down as well). All to no avail.

> Dr. Rice prefers minimally invasive, I believe, but also will " open

you up " if needed to get the desired effect -- it just depends on

each individual's situation. We had a member here who *thought* she

had achalasia, but the true source of her problems was a majorly

messed-up fundoplication surgery she'd had for her acid reflux a year

or two previous. Dr. Rice thought he could go in and repair the

damage laparoscopically, but then when he got in there the damage was

too severe and he had to open her up. He ended up having to do a

partial esophagectomy on her. (Another thing to consider -- do they

need to remove your ENTIRE esophagus, or just the bottom portion?)

>

> One thing to keep in mind, too, as you talk to different surgeons.

The main reason for performing an esophagectomy is because of cancer

of the esophagus. You might want to check and see if the various

surgeons have any experience with achalasia and esophagectomy, too.

>

> Debbi in Michigan

>

> Thanks so much for all the responses. I read about woman who is

having

> surgery this week. Wish her all the best. 1st off I am at work

so

> don't have much time to write so will continue when I get home

> tonight.

>

> I live on Long Island ....Pittsburgh and Cleveland will be a trek

but

> am willing to travel to get the best care. Do you know what kind

of

> surgical approach Dr. Rice uses? These are the approaches I know

about

> so far: Transhiatal (two incisions (one abdomen, one neck) or

> Thoracotomy and laparotomy (two or three major incisions) and

minimally

> invasive thoracoscopic (VATS)/ laparoscopic with one major

incision in

> the neck.)

>

> I have been in touch with Dr. Luketich's office at U of

Pitts

> since he is developer of thoracoscopic/laparoscopic approach to

> esophagectomy. Have also consulted with thorasic and laparascopic

> surgeons in NYC at NY Presby-Columbia/Cornell Med Ctr. Had not

heard

> of Dr. Rice in Cleveland since I was really concentrating on

getting

> info on minimally invasive surgery. I have asked many, many

questions

> but need to have info from a patient's perspective. Like how

does one

> feel after surgery? where does it hurt? can you ever really eat a

> regular diet again (other than pureed/soft food)? I have not

eaten

> normally in 30 years, even after myotomies. I have a 'mega-

sygmoid-

> esophagus, very large and 'tortured' but the thought of losing it

> totally is still difficult. Also losing at least 1 third of my

stomach

> to boot is another difficult thing to process. Also just feel so

> stressed, run down from not getting proper nutrition for months.

I make

> of soymilk smoothies, eat creamed soups, lots of Ensure. But

food is

> still sitting and rotting in my chest for days. My esophagus is

never

> empty even after days on liquid diet. Anyway more later. Thanks

again

> for support.

[Guest guest]

Debbi, I went to Dr. Rices site . UNfortunately, I did not see any

mention at all of esophagectomy. Went to the links as well for

thoracoscopic (minimally invasive) surgery and still no mention of

esophagectomy. Talks about the myotomy and fundoplication but

nothing about esophagectomy of any kind. Yup, am aware that

esophagectomy is most often performed on cancer patients but is

definitely used for 'end stage' achalasia and other conditions. And

yes, pretty much they all agree that my whole esophagus must come

out. The sphincter doesn't work but neither does the rest of it.

Also the incidence of very painful GERD is very much higher with

partial esophagectomy though I don't really get why. Seems that the

acid would just be getting into your throat and mouth instead of you

E but they say the acid production really goes down after the surgery

and you know all the precautions (not laying down for hours after

eating, eating small quantities) then there's always medication.

> Dr. Rice prefers minimally invasive, I believe, but also will " open

you up " if needed to get the desired effect -- it just depends on

each individual's situation. We had a member here who *thought* she

had achalasia, but the true source of her problems was a majorly

messed-up fundoplication surgery she'd had for her acid reflux a year

or two previous. Dr. Rice thought he could go in and repair the

damage laparoscopically, but then when he got in there the damage was

too severe and he had to open her up. He ended up having to do a

partial esophagectomy on her. (Another thing to consider -- do they

need to remove your ENTIRE esophagus, or just the bottom portion?)

>

> One thing to keep in mind, too, as you talk to different surgeons.

The main reason for performing an esophagectomy is because of cancer

of the esophagus. You might want to check and see if the various

surgeons have any experience with achalasia and esophagectomy, too.

>

> Debbi in Michigan

>

> Thanks so much for all the responses. I read about woman who is

having

> surgery this week. Wish her all the best. 1st off I am at work

so

> don't have much time to write so will continue when I get home

> tonight.

>

> I live on Long Island ....Pittsburgh and Cleveland will be a trek

but

> am willing to travel to get the best care. Do you know what kind

of

> surgical approach Dr. Rice uses? These are the approaches I know

about

> so far: Transhiatal (two incisions (one abdomen, one neck) or

> Thoracotomy and laparotomy (two or three major incisions) and

minimally

> invasive thoracoscopic (VATS)/ laparoscopic with one major

incision in

> the neck.)

>

> I have been in touch with Dr. Luketich's office at U of

Pitts

> since he is developer of thoracoscopic/laparoscopic approach to

> esophagectomy. Have also consulted with thorasic and laparascopic

> surgeons in NYC at NY Presby-Columbia/Cornell Med Ctr. Had not

heard

> of Dr. Rice in Cleveland since I was really concentrating on

getting

> info on minimally invasive surgery. I have asked many, many

questions

> but need to have info from a patient's perspective. Like how

does one

> feel after surgery? where does it hurt? can you ever really eat a

> regular diet again (other than pureed/soft food)? I have not

eaten

> normally in 30 years, even after myotomies. I have a 'mega-

sygmoid-

> esophagus, very large and 'tortured' but the thought of losing it

> totally is still difficult. Also losing at least 1 third of my

stomach

> to boot is another difficult thing to process. Also just feel so

> stressed, run down from not getting proper nutrition for months.

I make

> of soymilk smoothies, eat creamed soups, lots of Ensure. But

food is

> still sitting and rotting in my chest for days. My esophagus is

never

> empty even after days on liquid diet. Anyway more later. Thanks

again

> for support.

[Guest guest]

, I guess it was decided because I pretty much stopped eating

and am losing weight and nothing else is working. My last

laparoscopic surgeon thought maybe just maybe I should try a couple

of botox injections but the doctors at Cornell think that would be

throwing out money. Also the chief bariatric surgeon as

Columbia/Cornell suggested a new technique that would totally

eliminate the sphincter and unify the stomack and esophagus. That

sounded good to me. But when he did an endoscopic examination saw

that my esophagus was so far gone he was not willing to do this less

radical surgery. So there is a concensus. You gotta eat to live and

you want to avoid the thing becoming cancerous.

> Wow you sound just like me. I keep wondering when I will have to

get mine

> removed. How do the doctors make that decision to do that

surgery. Sometimes

> I wonder if they should just get it over with and do the removal.

Oh only

> time will tell with me. I wish you the best and hope all goes

well.

>

> in Suffolk

[Guest guest]

I don't have experience having had this procedure but the father of a

girl I work with had a gastric pull up which is I believe what you are

talking about where most of his esophagus was removed and his stomach

essentially pulled up into his chest. (his was required due to cancer,

not achalasia) I asked her about how he is doing now (about 2 years

later) and she said he is fine. He eats all normal things but just

has to eat smaller amounts at a time and eat slowly which as you know

would be a drastic improvement over what you have been doing. I am

sure others will relay their personal experience but while I wouldn't

be excited about having this done it sounds like your alternative is

pretty awful so good luck to you

Liz

[Guest guest]

Yes Liz, exactly. A gastric pull-up. Thanks for letting me know about

your friend's father. I have been eating very slowly for years so have

lots of practice there. Small quantities too are very much a part of my

life style. Very, very small quantities.

-- In achalasia , " lizzie2542 " <lsloan@c...> wrote:

> I don't have experience having had this procedure but the father of a

> girl I work with had a gastric pull up which is I believe what you

are

> talking about where most of his esophagus was removed and his stomach

> essentially pulled up into his chest. (his was required due to

cancer,

> not achalasia) I asked her about how he is doing now (about 2 years

> later) and she said he is fine. He eats all normal things but just

> has to eat smaller amounts at a time and eat slowly which as you know

> would be a drastic improvement over what you have been doing. I am

> sure others will relay their personal experience but while I wouldn't

> be excited about having this done it sounds like your alternative is

> pretty awful so good luck to you

> Liz

[Guest guest]

In a message dated 6/6/2005 1:32:04 P.M. Eastern Daylight Time, cnkalvar@... writes:

I have asked many, many questions but need to have info from a patient's perspective. Like how does one feel after surgery? where does it hurt? can you ever really eat a regular diet again (other than pureed/soft food)? I have not eaten normally in 30 years, even after myotomies. I have a 'mega- sygmoid- esophagus, very large and 'tortured' but the thought of losing it totally is still difficult.

Hi,

Dr Rice at the Cleveland clinic did my partial esophagectomy last August.

I believe his approach was transhitial(sp?)- abdominal and neck. Dr. Rice's patients cover most of the 7th floor at Cleveland Clinic. I live about 5 hrs away from Cleveland, so Dr. Rice would not release me to go home for 3 weeks and one week in a step down unit.

He watched me carefully for correct digestive ability to break down fats, etc. He did a gastric pull up, using part of my stomach as a food tube. When I went home, I had to be released in the morning so that a home health care nurse could see me that day and get me started using a tube feeding pump and formula at home. I had a tube called a "J" tube because it was inserted into the jejunum intestine.

I was on the feeding tube for about three weeks before Dr. Rice cleared me for transitioning back onto soft foods and liquids. It was really hard before that time. I wasn't in a lot of pain, but the J tube was uncomfortable. I felt really weak and did not do too much except take care of the tube feeding and administering medicines to myself all day!

I was off work for 2 and a half months. When I went back to work I was tired, but happy to be back at work and my coworkers were so happy to see me eating again!

Now, 10 months later, I can swallow and eat anything I want, except for two things.

One, I cant eat very much because my stomach is much smaller. But that's okay, I am 5 ft tall and weigh about 120 lbs. which is fine.

Two, I cant seem to eat and drink at the same time, there just isn't enough room.

I wont lie to you, this was the toughest ordeal I've ever been through in my life.

The surgery and recovery was a bear, and I was far from home.

But now, I feel like I do have a better quality of life than I did before.

I also need to tell you that I needed this surgery not for achalasia, but because I had a messed up Nissen fundoplication surgery that no local Cincinnati surgeon would touch. They all looked at me and told me to just live with my inability to swallow and get by on liquid nutrition.

I just couldn't see spending the rest of my life like that, so I opted for surgery with Dr. Rice.

I am now happy I did.

Jan in Northern KY