Feedback

[Guest guest]

Everyone's feedback is great. I feel that with the open heller

failing after only 10 months, and the dilitation not really working,

I don't know what else to do. This Dr. is suppose to be one of the

best. I will ask him what he thinks about botox and scaring.

I too wish when I was first diagnosed that they did the myotomy first

without all the dilitations. You stretch and band so many times and

the only thing it's going to do is break, and that's my fear.

I would love to take you up on your offer susan but realistically it

just would not be possible. Now if I happened to take a trip and have

an emergency and have coverage, that may be a different matter lol.

Let's put it this way. I want to hear feedback. Put yourself in my

shoes, if you have had A for over twenty years, 4 dilitations (I lost

count), and open heller (that failed), and the Dr. suggested botox

for the fist time, would you do it?

I'm guessing no, but I would like to see what others say.

That way I can ask Dr. Marcon and see what his reaction is.

I liked my original Dr. Diamant better but I was told he retired. He

teached at University of Toronto and probably trained Dr. Rice lol.

He was old school, neve wanted to do surgery.

Again, I look forward to hearing from everyone.

[Guest guest]

Hi ,

You make a point that nearly sounds valid when you say,

" and the Dr. suggested botox

for the first time, would you do it? "

That answer depends what as to what your expectations are.  For that we need to

hear again from you.  Are you alright with a procedure that usually has

decreasing returns.  You've read up enough to know that 6 months of relief is an

average expectation, but it is often less.  While there may not be any great

answers, there could be other alternatives.  Sometimes a superior surgeon can

fix the damage done by a previous myotomy.  10 months benefit from a

first myotomy almost sounds like an inferior surgery.

I'm sorry that this has gone so poorly for you .  I would guess that at

this point you see botox as the only way to obtain relief, and if you need to

repeat it over and over again, it beats having an ectomy.

Feedback

Everyone's feedback is great. I feel that with the open heller

failing after only 10 months, and the dilitation not really working,

I don't know what else to do. This Dr. is suppose to be one of the

best. I will ask him what he thinks about botox and scaring.

I too wish when I was first diagnosed that they did the myotomy first

without all the dilitations. You stretch and band so many times and

the only thing it's going to do is break, and that's my fear.

I would love to take you up on your offer susan but realistically it

just would not be possible. Now if I happened to take a trip and have

an emergency and have coverage, that may be a different matter lol.

Let's put it this way. I want to hear feedback. Put yourself in my

shoes, if you have had A for over twenty years, 4 dilitations (I lost

count), and open heller (that failed), and the Dr. suggested botox

for the fist time, would you do it?

I'm guessing no, but I would like to see what others say.

That way I can ask Dr. Marcon and see what his reaction is.

I liked my original Dr. Diamant better but I was told he retired. He

teached at University of Toronto and probably trained Dr. Rice lol.

He was old school, neve wanted to do surgery.

Again, I look forward to hearing from everyone.

[Guest guest]

I'm sorry I thought you were in the US. So many great people, hard to keep track

as to where they are.

 

The more feedback I get the more confused I get lol.  It's all great. I am

willing to do the most permanent solution I can get right now. Like

said, botox is temp. I know that, that's why I suggested to the Dr. another

surgery instead.

 

It's not like I can't eat, but every time I eat I get regergitation and I can

feel the food sitting in my throat. It sucks. I'm just tired of it all. I'm sure

you know how I feel first hand.

 

If you have any more info, please email me, it would be greatly appreciated.

 

My Dr. is Dr. Norman Marcon at St. 's in Toronto. Nice guy. I was

referred by my surgeon who did my myotomy. He said if I needed more surgery he

wouldn't do it, and referred me to Dr. Marcon.

 

Anyhow, please any info you can share would be great. I greatly appreciate it.

 

From: <_40@...>

Subject: RE: Feedback

achalasia

Date: Tuesday, September 9, 2008, 12:05 AM

Hi ,

We live in Canada. The only cost I had was paying a ridiculous amount for the TV

in my room. I didn't even bother with the phone because I rarely felt up to

chatting. I was in a private room and we only have semi-private coverage. The

worst thing would be that you would have to share a room in a ward, but I highly

doubt that due to the nature of your surgery. (Just wanted to throw that in)

Whatever you decide, I'll be cheering for you!

.

achalasia@grou ps.comFrom: jamiemcrae33Date: Tue, 9 Sep 2008

03:28:54 +0000Subject: Feedback

Everyone's feedback is great. I feel that with the open heller failing after

only 10 months, and the dilitation not really working, I don't know what else to

do. This Dr. is suppose to be one of the best. I will ask him what he thinks

about botox and scaring. I too wish when I was first diagnosed that they did the

myotomy first without all the dilitations. You stretch and band so many times

and the only thing it's going to do is break, and that's my fear. I would love

to take you up on your offer susan but realistically it just would not be

possible. Now if I happened to take a trip and have an emergency and have

coverage, that may be a different matter lol.Let's put it this way. I want to

hear feedback. Put yourself in my shoes, if you have had A for over twenty

years, 4 dilitations (I lost count), and open heller (that failed), and the Dr.

suggested botox for the fist time, would you do it?I'm guessing no, but I would

like to see what others say. That

way I can ask Dr. Marcon and see what his reaction is. I liked my original Dr.

Diamant better but I was told he retired. He teached at University of Toronto

and probably trained Dr. Rice lol. He was old school, neve wanted to do surgery.

Again, I look forward to hearing from everyone.

____________ _________ _________ _________ _________ _________ _

[Guest guest]

Dear ,

 

You ask what one would do if he were in your shoes... I know what I did, after

15 years of achalasia; 5 balloon dilatations; 1st open Heller's; 1 Savary

dilatation; 2nd open Heller's... I went for the Botox. Why? Because it was a

bridge to my next surgery, it had me live through the months that I took for

deciding what the next step would be and through the months that I was put on

the waiting list. At that time I had no option but having Botox done, as

dilatations would probably tear my esophagus (I had had perforations 5 months

earlier during my 2nd open myotomy).

 

First of all you should find out why your myotomy failed. In my case the main

reason probably is the fact that my achalasia was not only in the lower part of

the esophagus, but very high up as well. They did the myotomy over as much

length as possible, but it just wasn't enough. Then there was my scar tissue

etc.

 

If you know why your myotomy failed, you know whether a re-do could do the trick

or not. If you know that, you can decide whether to try that or whether to go

for the -ectomy or not.

 

I know it's confusing and I know you want to have that answer in your head

today, but you're going to have to be patient and find the right doctor for you.

You need to get second opinions.

 

Botox worked miracles for me, but it only lasted a very short while. You should

also bear in mind that Botox only works about 5 times in a person, after that

your body doesn't fall for the trick anymore. So, say it would work for you for

4 months (a nice average) and say it would do so 5 times (another nice average),

this would mean you would have relief a good 20 months of your life... Maybe you

should consider it bearing that in mind... relief for only 20 months of your

life... Would that be worth it?

 

What I want to add once again, is that I cannot imagine that there aren't

experienced -ectomy doctors in your area. Once you know what your best option is

and should that be the -ectomy, I don't think it would be the biggest problem to

find a great surgeon somewhere in your area. It is very " common " cancer

treatment all over the world.

 

Wishing you lots of strength,

Isabella

Feedback

Everyone's feedback is great. I feel that with the open heller

failing after only 10 months, and the dilitation not really working,

I don't know what else to do. This Dr. is suppose to be one of the

best. I will ask him what he thinks about botox and scaring.

I too wish when I was first diagnosed that they did the myotomy first

without all the dilitations. You stretch and band so many times and

the only thing it's going to do is break, and that's my fear.

I would love to take you up on your offer susan but realistically it

just would not be possible. Now if I happened to take a trip and have

an emergency and have coverage, that may be a different matter lol.

Let's put it this way. I want to hear feedback. Put yourself in my

shoes, if you have had A for over twenty years, 4 dilitations (I lost

count), and open heller (that failed), and the Dr. suggested botox

for the fist time, would you do it?

I'm guessing no, but I would like to see what others say.

That way I can ask Dr. Marcon and see what his reaction is.

I liked my original Dr. Diamant better but I was told he retired. He

teached at University of Toronto and probably trained Dr. Rice lol.

He was old school, neve wanted to do surgery.

Again, I look forward to hearing from everyone.