My DILEMMA

August 15, 2006

I wish you well

-- MY DILEMMA

For those of you who don't know me that well, I have had A for 24 years, an open Heller in 1991, and recently was told by a NY City surgeon that I should have an esophagectomy. He said there is time to wait, but not to wait forever. He could also do the surgery this Sept. He correctly observed that I was not ready to "sacrifice" my E to eat better, and I needed to hear it elsewhere.

Please excuse me for not giving the surgeon and gastroenterologists names at the moment.

Have your "scorecards" ready please.

The DILEMMA

Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. That day and time cannot be changed.

Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked him if he could see me late Thursday, or Friday afternoon. He actually emailed back within an hour to see him Thursday at 4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around the same time or on Friday.

On Monday I was told an appointment was set up to see Dr. G at 11AM, on Thursday at the same hospital in PHIL.

So far, so good. Thurs. 11 AM with Dr. G in PHIL

Thurs 4:30 PM with Dr. S. in PHIL

Friday 8:45 with Dr. H in BALT

But, I used to be a patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) and wanted to see him too. Today I asked if Dr. M could see me on Friday. They told me he was out on Friday, but could see me on Thursday at 3PM. I tentatively accepted the appointment.

So, it now looks like this:

Thurs. 11 AM with Dr. G in PHIL

Thurs 3PM with Dr. M in BALT

Thurs 4:30 PM with Dr. S. in PHIL

Friday 8:45 with Dr. H in BALT

It could take, door to door, about 2 hours to travel, or maybe less, but doctors are notorious for starting appointments late. It cannot remain this way.

Thoughts

To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. that morning.

To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office will contact me if they can move me up, but not until Thursday.

Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I might be able see him, then drive the 2 hours to BALT, returning there the next morning to see Dr. H, my surgeon. But Dr. M is not available that morning.

The office of Dr. M in BALT said I could drop off all my records, the X-rays and review them. I would have to have a copy of my Xrays made. He is the one who is head of the Gastro Dept at Hopkins and was seen by me a couple of times in the 1990's.

In spite of his kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are friends, perhaps they would be of the same mind (simplistic, I know), and I would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling out Dr. S at 4:30.

"What am I looking for exactly?"

I am looking for a surgeon or GI doctor who might tell me that there is a choice other than an esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy me time, or that there is a new surgery that the FDA will approve in a couple of years that will "fix" me. I am presently 57 years old. The descriptions I have read about the surgery (and I profusely thank those on this Board who have had esophagectomies for describing their surgeries), the possible complications, the mortality rates (various), and the risks involved during and after recoveries, lead me to think that I don't want to be a part of this.

Like from NY, who is a generation younger than me, we are basically feeling fine, but want to stay in control of our own destinies.

I'm still working (more than full time) and just can't hop in the car all the time to go check out doctors' opinions.

What are the risks of doing nothing? What kind of "behavior modification" should I do in order to extend the "life" of my esophagus. How much can this thing stretch before other organs become at risk? Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors.

I'm sorry if my description was confusing, and hopefully I did not foul up any of the doctors initials.

The doctors who I listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am seeing on Friday can only be seen on Friday.

I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the recent Xrays.

If anyone, who has survived this post up to this point, and would like to offer their opinion, which I would value, I would be most appreciative.

August 15, 2006

IMy last appt was with a doctor in NY presbeterian Hospital and he

said more otr less the same . The next step for me would be an

Esophagectomy but if i could live with the A as it is now I should

because the esophagectomy would be the last resort for me and it

would also be dramatically life changing so if your doc says to

wait ...you should wait

Just my opinion

>

> For those of you who don't know me that well, I have had A for 24

years, an

> open Heller in 1991, and recently was told by a NY City surgeon

that I should

> have an esophagectomy. He said there is time to wait, but not to

wait

> forever. He could also do the surgery this Sept. He correctly

observed that I

> was not ready to " sacrifice " my E to eat better, and I needed to

hear it

> elsewhere.

>

> Please excuse me for not giving the surgeon and

gastroenterologists names at

> the moment.

>

> Have your " scorecards " ready please.

>

> The DILEMMA

>

> Last Friday, an appointment was set up with Dr. H, in Baltimore,

(BALT) who

> did my open Heller in 1991 to see him this Friday in Baltimore at

8:45AM.

> That day and time cannot be changed.

>

> Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL)

and asked

> him if he could see me late Thursday, or Friday afternoon. He

actually

> emailed back within an hour to see him Thursday at 4:30, and

would try to set me

> up with a gastroenterologist (Dr. G,) for around the same time or

on Friday.

>

> On Monday I was told an appointment was set up to see Dr. G at

11AM, on

> Thursday at the same hospital in PHIL.

>

> So far, so good. Thurs. 11 AM with Dr. G in PHIL

> Thurs 4:30 PM with Dr. S. in

PHIL

> Friday 8:45 with Dr. H in BALT

>

> But, I used to be a patient of the chief of Gastroenterology at

s

> Hopkins until he retired (even though I am from NY). I knew his

successor, (Dr. M)

> and wanted to see him too. Today I asked if Dr. M could see me

on Friday.

> They told me he was out on Friday, but could see me on Thursday

at 3PM. I

> tentatively accepted the appointment.

>

> So, it now looks like this:

>

> Thurs. 11 AM with Dr. G in PHIL

> Thurs 3PM with Dr. M in

BALT

> Thurs 4:30 PM with Dr. S. in

PHIL

> Friday 8:45 with Dr. H in BALT

>

> It could take, door to door, about 2 hours to travel, or maybe

less, but

> doctors are notorious for starting appointments late. It cannot

remain this way.

>

> Thoughts

>

> To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is

in the O.R.

> that morning.

>

> To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday.

Their office

> will contact me if they can move me up, but not until Thursday.

>

> Dr. M, the GI in BALT is not available on Friday at all. The 3PM

seems

> pretty much fixed. If he had an 8AM appointment time available I

might be able

> see him, then drive the 2 hours to BALT, returning there the next

morning to

> see Dr. H, my surgeon. But Dr. M is not available that morning.

>

> The office of Dr. M in BALT said I could drop off all my records,

the X-rays

> and review them. I would have to have a copy of my Xrays made.

He is the

> one who is head of the Gastro Dept at Hopkins and was seen by me

a couple of

> times in the 1990's.

>

> In spite of his kindness in emailing me back, since Dr. S, the

surgeon and

> Dr. G, the GI, are friends, perhaps they would be of the same

mind

> (simplistic, I know), and I would not need to see both. If I

dropped the appointment

> with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of

my canceling

> out Dr. S at 4:30.

>

> " What am I looking for exactly? "

>

> I am looking for a surgeon or GI doctor who might tell me that

there is a

> choice other than an esophagectomy, plain and simple, that maybe

a lesser

> surgical procedure can buy me time, or that there is a new

surgery that the FDA

> will approve in a couple of years that will " fix " me. I am

presently 57 years

> old. The descriptions I have read about the surgery (and I

profusely thank

> those on this Board who have had esophagectomies for describing

their

> surgeries), the possible complications, the mortality rates

(various), and the risks

> involved during and after recoveries, lead me to think that I

don't want to

> be a part of this.

>

> Like from NY, who is a generation younger than me, we are

basically

> feeling fine, but want to stay in control of our own destinies.

>

> I'm still working (more than full time) and just can't hop in the

car all

> the time to go check out doctors' opinions.

>

> What are the risks of doing nothing? What kind of " behavior

modification "

> should I do in order to extend the " life " of my esophagus. How

much can this

> thing stretch before other organs become at risk? Can it ever

just stretch

> so far that it disintegrates? These are some of many questions I

have for the

> doctors.

>

> I'm sorry if my description was confusing, and hopefully I did

not foul up

> any of the doctors initials.

>

> The doctors who I listed as seeing on Thursday can only be seen

on Thursday,

> and the surgeon I am seeing on Friday can only be seen on

Friday.

>

> I would like, at some time, to send records to Dr. Patti in CA &

Dr. Rice at

> Cleveland Clinic, of course, including the recent Xrays.

>

> If anyone, who has survived this post up to this point, and would

like to

> offer their opinion, which I would value, I would be most

appreciative.

>

August 15, 2006

said,

How much can this thing stretch before other organs become at risk?

In my case it stretched so large that it thinned considerably and began to collapse in on itself, it also was putting pressure on my lungs. This from my Dr's.

Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors

I don't know if it would disintegrate as much as it would thin to the point of perforation. This is just my opinion.

The criteria that my Dr. set forth for me was that together we would make the decision for an esophagectomy and that I would be the one to know when that time came, and it would be based on the quality of my life. When I reached a point where I would decide that I can't live this way anymore. I reached that point age 59, after 40 years. Hoping that you can find the Dr. that will give you the information to know when that time will come. Wishing you the best.

F.

Attachment: vcard [not shown]

August 15, 2006

,

Sounds like you are biting off more than

you can chew (or swallow, in our case…..LOL……come on, you

have to keep your humor or you have nothing).

Anyway, I would say, if you can pull off

the Philly appts on Thursday and hit the Friday am in Baltimore, then that’s 3 other

opinions.

I think the additional Thursday appt in Baltimore (the 3pm) just isn’t feasible to

fit into the schedule, and you are going to make yourself crazy trying to make

it work.

Go with the original 3, and see what

happens. If you need to make additional appts from there, then so be it.

in NY

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

Sent: Tuesday, August 15, 2006 5:36 PM

achalasia

Subject: MY DILEMMA

For those of you who

don't know me that well, I have had A for 24 years, an open Heller in 1991, and

recently was told by a NY City surgeon that I should have an

esophagectomy. He said there is time to wait, but not to wait

forever. He could also do the surgery this Sept. He correctly

observed that I was not ready to " sacrifice " my E to eat better, and

I needed to hear it elsewhere.

Please excuse me for

not giving the surgeon and gastroenterologists names at the moment.

Have your

" scorecards " ready please.

The DILEMMA

Last Friday, an

appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller

in 1991 to see him this Friday in Baltimore

at 8:45AM. That day

and time cannot be changed.

Sunday morning I

emailed a surgeon (Dr. S) in Philadelphia

(PHIL) and asked him if he could see me late Thursday, or Friday

afternoon. He actually emailed back within an hour to see him Thursday at

4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around

the same time or on Friday.

On Monday I was told an

appointment was set up to see Dr. G at 11AM,

on Thursday at the same hospital in PHIL.

So far, so

good. Thurs. 11 AM

with Dr. G in PHIL

Thurs 4:30 PM with

Dr. S. in PHIL

Friday

8:45 with Dr. H in BALT

But, I used to be a

patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am

from NY). I knew his successor, (Dr. M) and wanted to see him too.

Today I asked if Dr. M could see me on Friday. They told me he was out on

Friday, but could see me on Thursday at 3PM.

I tentatively accepted the appointment.

So, it now looks like

this:

Thurs.

11 AM with Dr. G in PHIL

Thurs 3PM

with Dr. M in BALT

Thurs 4:30 PM with

Dr. S. in PHIL

Friday

8:45 with Dr. H in BALT

It could take, door to

door, about 2 hours to travel, or maybe less, but doctors are notorious for

starting appointments late. It cannot remain this way.

Thoughts

To try to move Dr. S to

9am (from 4:30PM) on Thursday, but he is in

the O.R. that morning.

To try to move Dr. S.

to 12 noon (from 4:30PM) on Thursday. Their

office will contact me if they can move me up, but not until Thursday.

Dr. M, the GI in BALT

is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I

might be able see him, then drive the 2 hours to BALT, returning there the next

morning to see Dr. H, my surgeon. But Dr. M is not available that

morning.

The office of Dr. M in

BALT said I could drop off all my records, the X-rays and review them. I

would have to have a copy of my Xrays made. He is the one who is head of

the Gastro Dept at Hopkins

and was seen by me a couple of times in the 1990's.

In spite of his

kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are

friends, perhaps they would be of the same mind (simplistic, I know), and I

would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my

canceling out Dr. S at 4:30.

" What am I looking

for exactly? "

I am looking for a

surgeon or GI doctor who might tell me that there is a choice other than an

esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy

me time, or that there is a new surgery that the FDA will approve in a couple

of years that will " fix " me. I am presently 57 years old.

The descriptions I have read about the surgery (and I profusely thank those on

this Board who have had esophagectomies for describing their surgeries), the

possible complications, the mortality rates (various), and the risks involved

during and after recoveries, lead me to think that I don't want to be a part of

this.

Like from NY, who

is a generation younger than me, we are basically feeling fine, but want to

stay in control of our own destinies.

I'm still working (more

than full time) and just can't hop in the car all the time to go check out

doctors' opinions.

What are the risks of

doing nothing? What kind of " behavior modification " should I do

in order to extend the " life " of my esophagus. How much can

this thing stretch before other organs become at risk? Can it ever just

stretch so far that it disintegrates? These are some of many questions I

have for the doctors.

I'm sorry if my

description was confusing, and hopefully I did not foul up any of the doctors

initials.

The doctors who I

listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am

seeing on Friday can only be seen on Friday.

I would like, at some

time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the

recent Xrays.

If anyone, who has

survived this post up to this point, and would like to offer their opinion,

which I would value, I would be most appreciative.

August 19, 2006

,

Goodness knows how you can manage that diary clash. But on your other points;

As you know I too am facing this. I decided not to go for the "official" second opinion, although technically my GI doctor and then the Upper GI surgeon both agreed that it was the only real option. Like yourself I have been told this is not too urgent, although some times I am so bad I wonder how bad urgent is. Again, like yourself I do not want this procedure. The thought terrifies me and any conversations about it bring me into a cold sweat. But I know something needs to be done. My oesophagus is affecting other organs, I am breathless this morning as either My oesophagus is occupying the space my lungs wants to be in or I have inhailed (unlikely). I think I also have some malnutrition going on as I feel quite rough this morning.

I strongly suggest you keep a diary of how you are feeling. This really is helping me come to terms with the pathway that I am on. I traffic light each day into green, amber or red. Red is I have to do something, amber is Hmmm possibly, green is I'm fine (I have a slightly more complicated system behined that). I have kept it on an excell spread sheet and there is just far too much red on it for my liking.

The decision I made with my surgeon was to have the procedure but to wait several months (November). I could then use this time to check with myself that I had made the right decision as I found this easier than still trying to decide what to do. It's just a small play on psychology but it has helped me. Also, the long lead in time is also so that I can suffer slightly this is only so that should I have a post operative complication I do not get angry for having the procedure. I really need to know for myself that there is no othger choice.

People search for second opinions for many reasons and sometimes people don't stop until they find the message they are looking for and this isn't necessarily the right opinion. In my case it wasn't so much the words in that I found a surgeon I trusted. I know that professionally he can not offer this procedure if the benefits did not out weigh the risks. Please do find someone you trust rather than find someone who says the right thing. I hope this makes sense.

All the best, keep us updated.

STEVE (Terrifiied of London)

MY DILEMMA