Re: New hope & energy / Rich and Tim

[Guest guest]

Hi,

Sorry for not responding to you sooner. I've been dealing with some issues

myself and I have obliged myself to not be active on this board for a while. So

to be honest I saw part of this post of yours while I was deleting all

non-personal mails in my inbox...

I have had a transhiatal esophagectomy myself March 31st last. I don't agree

that this isn't the appropriate type of -ectomy for achalasians, simply as I

think it differs from case to case. Of course the reason why you get the -ectomy

done matters, as well as the state of your stomach, together with the experience

of your surgeon. I bet there are several other reasons as well.

In my case we chose the TE, since my stomach lacked function already.

Furthermore the whole esophagus needed to be removed, as it was uncertain what

problems would remain if part of the esophagus remained in me. So I had little

choice...

I don't see why you would easier end up having swallowing issues after an TE

then after another type of -ectomy. The only reason why is if they rebuild the

esophagus too tight, which I believe only the inexperienced docs will do; or if

scar tissue builds up at the adhesion area. But if that tissue builds up, it

doesn't matter what type of -ectomy you had, an adhesion area will always be

part of the surgery...

Furthermore I don't agree that you end up with a new esophagus that is baggy as

a sigmoid shaped esophagus. They form your stomach into a tube and it looks

almost like a normal esophagus. The difference of course is that it lacks

muscles.

If I am honest, I'ld say he's more experienced in performing other types of

-ectomies and therefore he rather performs those, which is OK (the more

experience, the better it is)... Since I don't see the pro's/con's the way he

describes them.

One thing that I do see though is the small stomach... Since I have only little

stomach left nowadays. This causes me real trouble, the reason why I quit

reading/writing on this board for a while now. My stomach is only small and I

have lactose intolerance since the procedure. It is very hard for me to get

enough calories in, though I eat many times a day. On the other hand, because of

the scar tissue I have had many dilatations and only just now I can start to

learn how to live without my esophagus and eating on my own (without my feeding

tube). It's hard, but I am a quick learner. I now take lactose free milk

products and it works. I have lost a lot of weight, I am way too thin now. I am

thus underweight that I am often very tired, I lose hair and I skip

menstruations. That's not OK, yet it is normal after such procedure with such a

long recovery time. This recovery time wouldn't have been thus long if it hadn't

been for the scar tissue, which nobody could have foreseen (I just belonged to

the " lucky ones " , it could have happened with other types of -ectomies as well).

Last week my G.E. threatened me he would re-insert my J-tube... I freaked out.

This week my surgeon told me I could try to do it on my own, my body has proven

to be a strong one and my surgeon believes in me and my body. I do as well, I am

going to make it just fine. But it's a long long road.

I hope this isn't too negative, but from what I read I think you want an honest

opinion on -ectomies and on the different types of -ectomies.

What I wanted to do is give you honesty. Let you know that it isn't going to be

easy, it's not hurray hurray; if you go for an -ectomy you have a long tough

road ahead of you. But it's so much worth it!!!

Tim, I haven't been in touch with you lately either. I haven't forgotten about

you! I want you to know that I wish you all the luck and strength you need for

your -ectomy!!!

I won't be reading/writing on this board a lot the coming period of time. Sure

I'll keep myself posted where it comes to the -ectomies (Rich and Tim in

particular of course), but that is it for now, since it takes up too much energy

which I want to use for my healing process and my family.

Lots of love to you all,

Isabella

>

> Hello again everyone.

>

> I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

>

> Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

>

> But different kinds of esophajectomies??? Dr Luketich talked about an –ectomy

surgery I was totally unfamiliar with.

>

> Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It was

actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they do

it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the –ectomy that he does is minimally invasive. He was talking fast and I was

listening in utter amazement but what I wrote was that there are 3 incisions

about ½ inch each and 4 or 5 other " band aid " incisions and that they use

cameras and tools so that it's actually done laproscopically. With the TE

–ectomy, the surgeon actually puts his finger through a long incision and tears

blood vessels off the esophagus. He said that's fine for cancer patients but

dangerous for A patients because end stage A patients have well developed thick

blood vessels.

>

> Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my –ectomy on March 24th. This

is in response to the bleeding episode I wrote about in a previous post. Dr.

Luketich thought that was unnecessary and wouldn't do anything to address the

bleeding problem especially since I am tolerating Ensure. I love this guy.

>

> : Is this the –ectomy you had with Dr.Luketch.?

> : Is this the –ectomy you had with Dr. Rice?

> : Could this be considered a reprieve even though it's still an

–ectomy?

> Everyone: What do you know about the different kinds of –ectomies?

>

> I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

>

> I deeply appreciate any and all feedback.

>

[Guest guest]

Hi Isabella

You describe in your recent post exactly what I went through and am still going

through post ectomy. I had the Ivor- Oesophagectomy done through abdominal

and left, yes left Thoracotomy incisions. I too had a J-Tube fittes and removed

8 months post ectomy and lost a lot of weight.. That is why I had to simply had

to have another J-Tube fitted and of course I now have other issues as you know.

I slept a great deal when I lost my weight and I am now worried for your health.

Please, please keep in touch as you are an inspiration to us all on this group.

I have just spent 2 weeks in hospital under the care of my GI doc and guess

what? My J-Tube still leaks and horrifically too. They gave me some blood tests

the day I was admitted and an Ultrasound scan and they were left baffled as to

why I leak so much. I mean gush out. Example:- I went for a shower and removed

the soiled dressing and stepped under the water. The bile just poured out and

after being in the shower for 35 minutes a nurse knocked on the door and asked

if I was allright so I told her that I was dealing with a leak and she sent for

a doc to see the amount I was leaking. Anyhow to cut a long story short I have

been referred urgently to see a specialist in complex GI disorders at another

hospital in Hope Hospital in Manchester, UK. So now I wait to see this new

specialist.

Please, please have another J-Tube if you must. It is important that you keep

your nutritiion up to help gain some weight. I am very worried for you after

reading your post. You may now feel depression too and feel as if you are taking

1 step forward and 3 back. Keep fighting Isabella.

________________________________

From: Isabella Arnold <arnoldisabella@...>

achalasia

Sent: Friday, March 13, 2009 1:31:53 PM

Subject: Re: New hope & energy / Rich and Tim

Hi,

Sorry for not responding to you sooner. I've been dealing with some issues

myself and I have obliged myself to not be active on this board for a while. So

to be honest I saw part of this post of yours while I was deleting all

non-personal mails in my inbox...

I have had a transhiatal esophagectomy myself March 31st last. I don't agree

that this isn't the appropriate type of -ectomy for achalasians, simply as I

think it differs from case to case. Of course the reason why you get the -ectomy

done matters, as well as the state of your stomach, together with the experience

of your surgeon. I bet there are several other reasons as well.

In my case we chose the TE, since my stomach lacked function already.

Furthermore the whole esophagus needed to be removed, as it was uncertain what

problems would remain if part of the esophagus remained in me. So I had little

choice...

I don't see why you would easier end up having swallowing issues after an TE

then after another type of -ectomy. The only reason why is if they rebuild the

esophagus too tight, which I believe only the inexperienced docs will do; or if

scar tissue builds up at the adhesion area. But if that tissue builds up, it

doesn't matter what type of -ectomy you had, an adhesion area will always be

part of the surgery....

Furthermore I don't agree that you end up with a new esophagus that is baggy as

a sigmoid shaped esophagus. They form your stomach into a tube and it looks

almost like a normal esophagus. The difference of course is that it lacks

muscles.

If I am honest, I'ld say he's more experienced in performing other types of

-ectomies and therefore he rather performs those, which is OK (the more

experience, the better it is)... Since I don't see the pro's/con's the way he

describes them.

One thing that I do see though is the small stomach... Since I have only little

stomach left nowadays. This causes me real trouble, the reason why I quit

reading/writing on this board for a while now. My stomach is only small and I

have lactose intolerance since the procedure. It is very hard for me to get

enough calories in, though I eat many times a day. On the other hand, because of

the scar tissue I have had many dilatations and only just now I can start to

learn how to live without my esophagus and eating on my own (without my feeding

tube). It's hard, but I am a quick learner. I now take lactose free milk

products and it works. I have lost a lot of weight, I am way too thin now. I am

thus underweight that I am often very tired, I lose hair and I skip

menstruations. That's not OK, yet it is normal after such procedure with such a

long recovery time. This recovery time wouldn't have been thus long if it hadn't

been for the scar tissue, which nobody

could have foreseen (I just belonged to the " lucky ones " , it could have

happened with other types of -ectomies as well). Last week my G.E. threatened me

he would re-insert my J-tube... I freaked out. This week my surgeon told me I

could try to do it on my own, my body has proven to be a strong one and my

surgeon believes in me and my body. I do as well, I am going to make it just

fine. But it's a long long road.

I hope this isn't too negative, but from what I read I think you want an honest

opinion on -ectomies and on the different types of -ectomies.

What I wanted to do is give you honesty. Let you know that it isn't going to be

easy, it's not hurray hurray; if you go for an -ectomy you have a long tough

road ahead of you. But it's so much worth it!!!

Tim, I haven't been in touch with you lately either. I haven't forgotten about

you! I want you to know that I wish you all the luck and strength you need for

your -ectomy!!!

I won't be reading/writing on this board a lot the coming period of time. Sure

I'll keep myself posted where it comes to the -ectomies (Rich and Tim in

particular of course), but that is it for now, since it takes up too much energy

which I want to use for my healing process and my family.

Lots of love to you all,

Isabella

>

> Hello again everyone.

>

> I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

>

> Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

>

> But different kinds of esophajectomies? ?? Dr Luketich talked about an

–ectomy surgery I was totally unfamiliar with.

>

> Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It was

actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they do

it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the –ectomy that he does is

minimally invasive. He was talking fast and I was listening in utter amazement

but what I wrote was that there are 3 incisions about ½ inch each and 4 or 5

other " band aid " incisions and that they use cameras and tools so that it's

actually done laproscopically. With the TE –ectomy, the surgeon actually puts

his finger through a long incision and tears blood vessels off the esophagus. He

said that's fine for cancer patients but dangerous for A patients because end

stage A patients have well developed thick blood vessels.

>

> Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my –ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

>

> : Is this the –ectomy you had with Dr.Luketch.?

> : Is this the –ectomy you had with Dr. Rice?

> : Could this be considered a reprieve even though it's still an

–ectomy?

> Everyone: What do you know about the different kinds of –ectomies?

>

> I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

>

> I deeply appreciate any and all feedback.

>

[Guest guest]

Thank you Isabella for sharing your experience with me.

I agree with you and I'm planning to proceed with a transhiatal -ectomy. It's

scheduled for one week from today at U-M with Dr. Chang. I haven't found any

evidense that one -ectomy is superior to another. Even the stomach issue, if you

have some stomach left but you've also had the plyora (sp) muscle cut (which I

understand they are dong now with all the etcomies - including Dr. Luketich) I

think it's moot. The food isn't going to stay in there long at all. It's going

to move strait through cause there's nothing stopping it. Like a bucket with a

hole in the bottom. I am praying that your recovery speeds up, you get your

vitality back and start feeling wonderful in very short order.

Have a good day!

Rich

> >

> > Hello again everyone.

> >

> > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> >

> > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> >

> > But different kinds of esophajectomies??? Dr Luketich talked about an

–ectomy surgery I was totally unfamiliar with.

> >

> > Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the –ectomy that he does is minimally invasive. He was talking fast and I was

listening in utter amazement but what I wrote was that there are 3 incisions

about ½ inch each and 4 or 5 other " band aid " incisions and that they use

cameras and tools so that it's actually done laproscopically. With the TE

–ectomy, the surgeon actually puts his finger through a long incision and tears

blood vessels off the esophagus. He said that's fine for cancer patients but

dangerous for A patients because end stage A patients have well developed thick

blood vessels.

> >

> > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my –ectomy on March 24th. This

is in response to the bleeding episode I wrote about in a previous post. Dr.

Luketich thought that was unnecessary and wouldn't do anything to address the

bleeding problem especially since I am tolerating Ensure. I love this guy.

> >

> > : Is this the –ectomy you had with Dr.Luketch.?

> > : Is this the –ectomy you had with Dr. Rice?

> > : Could this be considered a reprieve even though it's still an

–ectomy?

> > Everyone: What do you know about the different kinds of –ectomies?

> >

> > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> >

> > I deeply appreciate any and all feedback.

> >

>

[Guest guest]

Hi Rich,

Things certainly go fast now for you, eh, one week from today.... Just one more

week and it would have been on my first anniversary... My -ectomy was done March

31st 2008. How are you coping mentally? From what I read you seem to be

handling things pretty objective, strong and positive. I hope I read that right,

since that's a great spirit to go into such major surgery.

About the stomach issue. I didn't have a pyloromyotomy, since my doc's didn't

agree with the American surgeons it would be a good thing to do. This since a

pyloromyotomy might increase dumping issues. Regarding the issues I now have,

without a pyloromyotomy, I am glad they decided that way and truly refused. I

can only try to imagine how huge my dumping issues would have gotten if they did

perform that extra procedure (regarding the issues I am facing already without

that procedure). It isn't necessary to perform the P.M. together with the

-ectomy, it can always be done afterwards, when it appears to be necessary

because of issues you find. The P.M. cannot be undone.

You should have your B12 levels monitored regularly after your -ectomy

procedure, since your stomach probably won't be able to absorb B12 anymore (it

lacks the function to produce the chemical that makes absorbtion possible).

Usually you have a back up of B12 for about a year, but in many achalasians

because of malnutrition and/or prior surgeries the B12 back up is way too low

and you need injections soon after the procedure. If your B12 level is too low,

you aren't able to absorb enough iron, which results in anaemia. Shortage of B12

can be disguised, since good folic acid levels might make absorbtion of iron

possible and if not tested separately the B12 shortage won't be noticed because

of that. This would be a bad thing, as lasting B12 shortage might result in

permanent nerve damage. Just a tip, so that you get yourself checked regularly.

As for me, I can tell you that I am doing well at the moment. The mental stress

I had concerning the tube has lessened and that makes it easier for me to cope

with the things I need to cope with now where it comes to dumping/malnutrition

etc. I am sleeping better now and feel my energy coming back. I stopped counting

calories and very slowly it's beginning to be a joy to eat now. it has been such

a very long road and I'm still not where I need and want to be. But I'm getting

there, that's an absolute certainty.

I wish you the very very best for your upcoming surgery and if there's anything

I can do for you, just let me know. Though I am not " on board " really right now,

I do check the -ectomy posts, especially your's and Tim's.

Isabella

________________________________

From: " rbailhe@... " <rbailhe@...>

achalasia

Sent: Tuesday, March 17, 2009 3:28:30 PM

Subject: Re: New hope & energy / Rich and Tim

Thank you Isabella for sharing your experience with me.

I agree with you and I'm planning to proceed with a transhiatal -ectomy. It's

scheduled for one week from today at U-M with Dr. Chang. I haven't found any

evidense that one -ectomy is superior to another. Even the stomach issue, if you

have some stomach left but you've also had the plyora (sp) muscle cut (which I

understand they are dong now with all the etcomies - including Dr. Luketich) I

think it's moot. The food isn't going to stay in there long at all. It's going

to move strait through cause there's nothing stopping it. Like a bucket with a

hole in the bottom. I am praying that your recovery speeds up, you get your

vitality back and start feeling wonderful in very short order.

Have a good day!

Rich

> >

> > Hello again everyone.

> >

> > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> >

> > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> >

> > But different kinds of esophajectomies? ?? Dr Luketich talked about an

–ectomy surgery I was totally unfamiliar with.

> >

> > Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the –ectomy that he does

is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each and

4 or 5 other " band aid " incisions and that they use cameras and tools so that

it's actually done laproscopically. With the TE –ectomy, the surgeon actually

puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> >

> > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my –ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> >

> > : Is this the –ectomy you had with Dr.Luketch.?

> > : Is this the –ectomy you had with Dr. Rice?

> > : Could this be considered a reprieve even though it's still an

–ectomy?

> > Everyone: What do you know about the different kinds of –ectomies?

> >

> > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> >

> > I deeply appreciate any and all feedback.

> >

>

[Guest guest]

Hi Isabella

Good to hear from you. While I was in hospital recently and had my extreme bile

leaks monitored and seen for themselves I met a patient who had Oesophageal

Cancer who was 74 years old. As she said she was diagnosed too late and although

still hanging on there her mind is as bright as a button. I contact the hospital

daily to say hello to her as we both got close when I was there. To compound her

cander she is registered blind and partially deaf. We had some great moments

together. Although she had a PEG fitted and bearing in mind her health she asked

for it to be removed as she like me was having a lot of leaks. While I was with

her we set up a competition on who could leak the most. Just goes to show the

humour that I have admired in her and always will. We had many chats about the

inability to swallow and while there encouraged her to eat what she could

swallow and if she fancied a cold glass of milk then that is what I fetched for

her from the ward

mini kitchen. I am waiting to hear when I can see the Gastro Professor about my

leaks and will keep the group informed about the outcome. Please keep your

spirits up and keep up your fighting spirit and continued support for everyone

in this group. My weigh is now down to 87lbs and my dietician is worried as well

as my medics. Good Luck for you future.

________________________________

From: Isabella Arnold <arnoldisabella@...>

achalasia

Sent: Tuesday, March 17, 2009 7:59:45 PM

Subject: Re: Re: New hope & energy / Rich and Tim

Hi Rich,

Things certainly go fast now for you, eh, one week from today.... Just one more

week and it would have been on my first anniversary. .. My -ectomy was done

March 31st 2008. How are you coping mentally? From what I read you seem to be

handling things pretty objective, strong and positive. I hope I read that right,

since that's a great spirit to go into such major surgery.

About the stomach issue. I didn't have a pyloromyotomy, since my doc's didn't

agree with the American surgeons it would be a good thing to do. This since a

pyloromyotomy might increase dumping issues. Regarding the issues I now have,

without a pyloromyotomy, I am glad they decided that way and truly refused. I

can only try to imagine how huge my dumping issues would have gotten if they did

perform that extra procedure (regarding the issues I am facing already without

that procedure). It isn't necessary to perform the P.M. together with the

-ectomy, it can always be done afterwards, when it appears to be necessary

because of issues you find. The P.M. cannot be undone.

You should have your B12 levels monitored regularly after your -ectomy

procedure, since your stomach probably won't be able to absorb B12 anymore (it

lacks the function to produce the chemical that makes absorbtion possible).

Usually you have a back up of B12 for about a year, but in many achalasians

because of malnutrition and/or prior surgeries the B12 back up is way too low

and you need injections soon after the procedure. If your B12 level is too low,

you aren't able to absorb enough iron, which results in anaemia. Shortage of B12

can be disguised, since good folic acid levels might make absorbtion of iron

possible and if not tested separately the B12 shortage won't be noticed because

of that. This would be a bad thing, as lasting B12 shortage might result in

permanent nerve damage. Just a tip, so that you get yourself checked regularly.

As for me, I can tell you that I am doing well at the moment. The mental stress

I had concerning the tube has lessened and that makes it easier for me to cope

with the things I need to cope with now where it comes to dumping/malnutritio n

etc. I am sleeping better now and feel my energy coming back. I stopped counting

calories and very slowly it's beginning to be a joy to eat now. it has been such

a very long road and I'm still not where I need and want to be. But I'm getting

there, that's an absolute certainty.

I wish you the very very best for your upcoming surgery and if there's anything

I can do for you, just let me know. Though I am not " on board " really right now,

I do check the -ectomy posts, especially your's and Tim's.

Isabella

____________ _________ _________ __

From: " rbailhemea (DOT) org " <rbailhemea (DOT) org>

achalasia@grou ps.com

Sent: Tuesday, March 17, 2009 3:28:30 PM

Subject: Re: New hope & energy / Rich and Tim

Thank you Isabella for sharing your experience with me.

I agree with you and I'm planning to proceed with a transhiatal -ectomy. It's

scheduled for one week from today at U-M with Dr. Chang. I haven't found any

evidense that one -ectomy is superior to another. Even the stomach issue, if you

have some stomach left but you've also had the plyora (sp) muscle cut (which I

understand they are dong now with all the etcomies - including Dr. Luketich) I

think it's moot. The food isn't going to stay in there long at all. It's going

to move strait through cause there's nothing stopping it. Like a bucket with a

hole in the bottom. I am praying that your recovery speeds up, you get your

vitality back and start feeling wonderful in very short order.

Have a good day!

Rich

> >

> > Hello again everyone.

> >

> > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> >

> > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> >

> > But different kinds of esophajectomies? ?? Dr Luketich talked about an

–ectomy surgery I was totally unfamiliar with.

> >

> > Dr.. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the –ectomy that he does

is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each and

4 or 5 other " band aid " incisions and that they use cameras and tools so that

it's actually done laproscopically. With the TE –ectomy, the surgeon actually

puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> >

> > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my –ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> >

> > : Is this the –ectomy you had with Dr.Luketch.?

> > : Is this the –ectomy you had with Dr. Rice?

> > : Could this be considered a reprieve even though it's still an

–ectomy?

> > Everyone: What do you know about the different kinds of –ectomies?

> >

> > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> >

> > I deeply appreciate any and all feedback.

> >

>

[Guest guest]

Hi Isabella,

I was starting to lose it when all I could drink was Ensure. Now I'm a on a

dobhoff feeding tube which I didn't want at first but it's giving me better

nutrition and I feel stronger. Even walking a couple of miles on the treadmill

(in segments) in prep for the surgery.

I think I'm doing well mentally. Though I am a bit like a snow skier who has a

precognition that he's about to go off a cliff and wondering how much it's going

to hurt, etc. I can't imagine what it's going to be like waking up from the

surgery. I hope they have some GREAT drugs.

That's very interesting about the stomach issue. I wonder why the US surgeons

are doing the pyloromytomy. It makes sense to me to wait and see.

Thank you for the information on B-12 which could be invaluable. I will make

sure my doctors monitor that very closely!

It sounds like you are starting to turn the corner which I am glad to hear.

Thanks so much for wishing me the best and offering your help.

Rich

> > >

> > > Hello again everyone.

> > >

> > > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> > >

> > > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> > >

> > > But different kinds of esophajectomies? ?? Dr Luketich talked about an

†" ectomy surgery I was totally unfamiliar with.

> > >

> > > Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the †" ectomy that he does

> is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each and

4 or 5 other " band aid " incisions and that they use cameras and tools so that

it's actually done laproscopically. With the TE †" ectomy, the surgeon actually

puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> > >

> > > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my †" ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> > >

> > > : Is this the †" ectomy you had with Dr.Luketch.?

> > > : Is this the †" ectomy you had with Dr. Rice?

> > > : Could this be considered a reprieve even though it's still an

†" ectomy?

> > > Everyone: What do you know about the different kinds of †" ectomies?

> > >

> > > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> > >

> > > I deeply appreciate any and all feedback.

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

Hi Rich

After having the ectomy myself and was warned before hand what to expect

afterwards. I was told beforehand that having the ectomy is akin to being in a

multicar pileup or being hit by a train and this was by the Thoracic Consultant

who performed my op. Mine took 10 hours and yes they do have marvelous

painkillers but do not try and be brave with the pain. When you have pain or

feel uncomfortable tell them and take all your meds as it is important to keep

on top of the pain. Good Luck.

(from the UK)

________________________________

From: " rbailhe@... " <rbailhe@...>

achalasia

Sent: Wednesday, March 18, 2009 5:22:55 PM

Subject: Re: New hope & energy / Rich and Tim

Hi Isabella,

I was starting to lose it when all I could drink was Ensure. Now I'm a on a

dobhoff feeding tube which I didn't want at first but it's giving me better

nutrition and I feel stronger. Even walking a couple of miles on the treadmill

(in segments) in prep for the surgery.

I think I'm doing well mentally. Though I am a bit like a snow skier who has a

precognition that he's about to go off a cliff and wondering how much it's going

to hurt, etc. I can't imagine what it's going to be like waking up from the

surgery. I hope they have some GREAT drugs.

That's very interesting about the stomach issue. I wonder why the US surgeons

are doing the pyloromytomy. It makes sense to me to wait and see.

Thank you for the information on B-12 which could be invaluable. I will make

sure my doctors monitor that very closely!

It sounds like you are starting to turn the corner which I am glad to hear.

Thanks so much for wishing me the best and offering your help.

Rich

> > >

> > > Hello again everyone.

> > >

> > > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> > >

> > > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> > >

> > > But different kinds of esophajectomies? ?? Dr Luketich talked about an

†" ectomy surgery I was totally unfamiliar with.

> > >

> > > Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the †" ectomy that he

does

> is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each

and 4 or 5 other " band aid " incisions and that they use cameras and tools so

that it's actually done laproscopically. With the TE †" ectomy, the surgeon

actually puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> > >

> > > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my †" ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> > >

> > > : Is this the †" ectomy you had with Dr.Luketch.?

> > > : Is this the †" ectomy you had with Dr. Rice?

> > > : Could this be considered a reprieve even though it's still an

†" ectomy?

> > > Everyone: What do you know about the different kinds of †" ectomies?

> > >

> > > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> > >

> > > I deeply appreciate any and all feedback.

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

Hi Rich,

Indeed being on the tube is not something one looks forward to, but it does

help, eh? It's worth it when it helps you stay stronger and more energetic.

Good to hear you're doing fine mentally. I understand your fears concerning the

pain you will have etc. I had those fears myself and I think everyone else who

has to undergo surgery will as well.

Honestly I haven't been in any pain at all!!! Absolutely not! In my hospital

they say it's not necessary to be in pain, they really monitor one very well and

do their utmost to make on feel comfortable, since pain stands in the way of

recovery. I am confident your docs will do their utmost to make you feel as

comfortable! You won't be feeling great, of course, but I think you'll be

surprised how little pain you will have.

Indeed I also feel that I am starting to trun the corner, it's about time, eh? I

feel more positive nowadays and I am working very very hard to fully recover. I

am going to be exactly where I want to be, of that I am sure now! It's hard

work, but it's worth it. Food tastes so good! You will experience that in a

short period of time yourself!

Love,

Isabella

________________________________

From: " rbailhe@... " <rbailhe@...>

achalasia

Sent: Wednesday, March 18, 2009 6:22:55 PM

Subject: Re: New hope & energy / Rich and Tim

Hi Isabella,

I was starting to lose it when all I could drink was Ensure. Now I'm a on a

dobhoff feeding tube which I didn't want at first but it's giving me better

nutrition and I feel stronger. Even walking a couple of miles on the treadmill

(in segments) in prep for the surgery.

I think I'm doing well mentally. Though I am a bit like a snow skier who has a

precognition that he's about to go off a cliff and wondering how much it's going

to hurt, etc. I can't imagine what it's going to be like waking up from the

surgery. I hope they have some GREAT drugs.

That's very interesting about the stomach issue. I wonder why the US surgeons

are doing the pyloromytomy. It makes sense to me to wait and see.

Thank you for the information on B-12 which could be invaluable. I will make

sure my doctors monitor that very closely!

It sounds like you are starting to turn the corner which I am glad to hear.

Thanks so much for wishing me the best and offering your help.

Rich

> > >

> > > Hello again everyone.

> > >

> > > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> > >

> > > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that a

myotomy was not going to work for me. That's valuable info.

> > >

> > > But different kinds of esophajectomies? ?? Dr Luketich talked about an

†" ectomy surgery I was totally unfamiliar with.

> > >

> > > Dr. L said that in Michigan they do transhiatal esophajectomies (TE). (It

was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else they

do it or how many on the Board have had this type) Dr. Luketich said that he

believes TE is not an appropriate surgery for an achalasia patient and that he

disagrees with the approach. He said that with the TE, they bring the stomach up

and it ends up being baggy and not unlike the shape of the sigmoid esophagus I

have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the †" ectomy that he

does

> is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each

and 4 or 5 other " band aid " incisions and that they use cameras and tools so

that it's actually done laproscopically. With the TE †" ectomy, the surgeon

actually puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> > >

> > > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my †" ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> > >

> > > : Is this the †" ectomy you had with Dr.Luketch.?

> > > : Is this the †" ectomy you had with Dr. Rice?

> > > : Could this be considered a reprieve even though it's still an

†" ectomy?

> > > Everyone: What do you know about the different kinds of †" ectomies?

> > >

> > > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> > >

> > > I deeply appreciate any and all feedback.

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

,

That's sort of funny. The only difference between actually being in the

muticar pileup or being hit by a train is that you will actually be in the

hospital operating room right when it happens. No waiting for help to arrive, no

ambulance ride, etc. So that's a big advantage. Am I an optimist or what? : )

Thanks for the advice! I will not hesitate to tell them when I am

uncomfortable.

Rich

>

> Hi Rich

> After having the ectomy myself and was warned before hand what to expect

afterwards. I was told beforehand that having the ectomy is akin to being in a

multicar pileup or being hit by a train and this was by the Thoracic Consultant

who performed my op. Mine took 10 hours and yes they do have marvelous

painkillers but do not try and be brave with the pain. When you have pain or

feel uncomfortable tell them and take all your meds as it is important to keep

on top of the pain. Good Luck.

> (from the UK)

[Guest guest]

Hi Isabella,

The feeding tube really does help. Many people I see mention that except for

the 14 inch rubber tubing hanging out of my nose (which I throw over my ear -

very stylish) that I look pretty good. And they express some amazement at that.

I've gained 3 pounds since I started on the feeding tube one week ago!

Your words are reassuring about the pain. I'm so glad you are turning the

corner. When you wrote, " Food tastes so good! You will experience that in a

short period of time yourself! " , I could almost feel my mouth watering. We just

cannot fully appreciate things until we don't have them. Right now, just the

thought of eating something as simple as cream cheese and crackers sounds like

ecstacy!

Love,

Rich

> > > >

> > > > Hello again everyone.

> > > >

> > > > I sent my records to Drs Rice, Patti, and Luketich this past Saturday

guaranteed delivery by 10am Monday morning. I received a call from Dr. Rice at

7:30am this morning (Tuesday) and a call from Dr Luketich at 5:30pm this

afternoon (Tuesday)! I am so impressed they would respond this quickly. What

great advice so many of you gave me to send records and then to provide me with

contact information etc. Thanks!

> > > >

> > > > Both Dr. Rice and Dr Luketich agreed with my U-M surgeon Dr. Chang that

a myotomy was not going to work for me. That's valuable info.

> > > >

> > > > But different kinds of esophajectomies? ?? Dr Luketich talked about an

†" ectomy surgery I was totally unfamiliar with.

> > > >

> > > > Dr. L said that in Michigan they do transhiatal esophajectomies (TE).

(It was actually developed at U-M in 1977 by Dr. Orringer. (I wonder where else

they do it or how many on the Board have had this type) Dr. Luketich said that

he believes TE is not an appropriate surgery for an achalasia patient and that

he disagrees with the approach. He said that with the TE, they bring the stomach

up and it ends up being baggy and not unlike the shape of the sigmoid esophagus

I have now but with no actual stomach left. He said you can still end up with

swallowing problems. With his method (and I didn't get the name for it) the

stomach is shaped into a 2 and 1/2 centimeter tube, the same size the esophagus

is supposed to be and 60 percent of the stomach is preserved. Dr L went on to

say that if you had a barium esophagram later on, the radiologist would be

hard-pressed to even know that you had an -ectomy. I find that amazing. He said

the †" ectomy that he

> does

> > is minimally invasive. He was talking fast and I was listening in utter

amazement but what I wrote was that there are 3 incisions about ½ inch each

and 4 or 5 other " band aid " incisions and that they use cameras and tools so

that it's actually done laproscopically. With the TE †" ectomy, the surgeon

actually puts his finger through a long incision and tears blood vessels off the

esophagus. He said that's fine for cancer patients but dangerous for A patients

because end stage A patients have well developed thick blood vessels.

> > > >

> > > > Dr. Chang (my current Doc at U-M) wants to insert a Dobhoff feeding tube

through my nose tomorrow and leave it there until my †" ectomy on March 24th.

This is in response to the bleeding episode I wrote about in a previous post.

Dr. Luketich thought that was unnecessary and wouldn't do anything to address

the bleeding problem especially since I am tolerating Ensure. I love this guy.

> > > >

> > > > : Is this the †" ectomy you had with Dr.Luketch.?

> > > > : Is this the †" ectomy you had with Dr. Rice?

> > > > : Could this be considered a reprieve even though it's still an

†" ectomy?

> > > > Everyone: What do you know about the different kinds of †" ectomies?

> > > >

> > > > I feel excited and energized and am really now leaning heavily toward

cancelling my surgery at U-M and scheduling it with Dr. Luketich who said he

could do it in two weeks or sooner if it's an emergency and is having his

assistant call me tomorrow with more information.

> > > >

> > > > I deeply appreciate any and all feedback.

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >