Re: The Cleveland Clinic Esophageal Summit

[Guest guest]

I just wanted to add that Dr. Rice (who does the surgeries at the

Cleveland Clinic) wants to see his patients ONCE a year for a post

surgery check up and barium swallow!

Also, for anyone going in for a dilatation, " Rigiflex " are the preferred

dilators offering the best success rate.

Sandi

The Cleveland Clinic Esophageal Summit

Hey everyone!

I am home now, and I do have *some* information to share, but

unfortunately not nearly as much as I would have liked to have

gotten. Achalasia DEFINITELY took a back seat to GERD for the entire

summit. (

We were quite well received... every TCC staff member (or to be more

accurate, every staff member EXCEPT Dr. Richter, who never once even

approached us) seemed to go out of their way to make us feel

welcome. We had extensive conversations with Dr. Vaezi and Dr. Rice,

as well as Amy and , the nurses that do the manometry testing

at TCC. I also had a bit of a conversation with Dr. Ray Clouse

concerning Non-Cardiac Chest Pain (spasm pains) and the lack of

awareness about this problem in the field of Gastroenterology.

Also, those of you who are patients of Dr. Richter, he will be moving

to Philadelphia sometime this year -- if you need a follow up appt

with him, I would schedule it sooner rather than later. Based on my

conversations with some of these doctors this weekend, I would

recommend Dr. Vaezi as an alternative to Dr. Richter [if you don't

want to travel to Pennsylvania after Dr. Richter is gone to

Philadelphia.] Dr. Achkar also seemed quite personable and

knowledgeable, although I didn't have as much of an opportunity to

have an in-depth conversation with him like I did with Dr. Vaezi.

It's now after midnight and I have to get up in less than five hours,

so I'm going to do a TEENY little review of what I learned. I have a

HECK of a week ahead of me this week, and after that has calmed down

I will try to go into more depth on these subjects. If you have

questions about what I'm posting right now, please either direct them

to Sandi or wait until I can start posting regularly again (likely in

about seven days.) Sandi had some conversations that I didn't, and

vice versa, so depending on the subject matter, one or the other of

us might be better equipped to answer.

In no particular order and off the top of my sleep-deprived head:

-- Dilations after a myotomy are NOT due to " scar tissue from the

myotomy " as many have been led to believe, but rather due to scar

tissue [strictures] from GERD damage (and it IS possible to have GERD

and not have any pain from it.)

-- Low-dose antidepressant medications are emerging as the number-one

medication for treating NCCPs (spasm pains), which are believed to be

caused by a hypersensitivity in the BRAIN, rather than by bad signals

being sent by the damaged esophageal nerves.

-- Cancer of the esophagus is EXTREMELY rare and appears to be much

lower than what has been reported in the past, either b/c they are

treating achalasia better and so there is less stasis (retained food

rotting in the esophagus), or b/c achalasia is being properly

diagnosed more often (and so isn't nearly as rare as previously

thought), or b/c what in the past was attributed to post-achalasia

cancer development was actually " pseudoachalasia " that was caused by

a cancer that was MISSED in the first place (as we had happen this

last year to a member on this group), or a combination of these

factors. I believe that in all their time treating achalasia

patients, Dr. Rice and Dr. Richter said they have only ever had one

patient who went on to develop esophageal cancer... Dr. Rice operates

on 50 achalasia patients each year, and Dr. Rice and his associates

see about 250 per year, so they're going on some very large numbers.

--Post-myotomy checkups are recommended to keep an eye out for GERD-

related damage; they are not needed to keep an eye out for achalasia-

related cancer.

--There are still no good long-term numbers on Dilations vs Lap.

Heller Myotomies b/c the Lap. surgery is still relatively " young " ;

basically the only thing that they seemed to agree on was that the HM

surgery was more difficult on previously dilated/botoxed patients,

and that both surgical and dilated patients might need " touch ups "

(dilations) down the road, but there is as of yet no way of knowing

which patients will or won't respond to each type of treatment. In

general, though, the younger the patient, the more everyone seemed to

agree w/ surgery as the first treatment (under age 40 or so was

considered " younger " ). For unknown reasons, older women seem to do

better than younger women or men of any age with dilation -- possibly

as a result of decreased muscle tone.

--Botox is ONLY for those patients who cannot have surgery or a

dilation. It is NOT recommended for young patients at all -- young

patients should have surgery or dilations; the example they gave for

an ideal Botox patient was a 90-year-old man who had Botox injections

over a period of six years before he died of other causes.

--The Witzel dilator has gone by the wayside -- if you have a GI who

wants to dilate you w/ a Witzel, RUN AWAY!!!! (always ask the doc

what equipment he uses!)

--No matter what you have done (surgery or dilation) it is IMPERATIVE

to go to an EXPERIENCED specialist. I know we've been harping on

that forever already, but even the specialists who are now " the kings

of achalasia treatment " talked about their steep Learning Curve in

perfecting their technique. Get someone who has done a hundred

(surgeries/dilations) already.... don't be someone's practice case.

--Heller Myotomies MUST go at least 2cm and preferably 3cm into the

stomach beyond the LES. There is a huge difference in successful

outcome for those that go less than 2cm into the stomach and those

that go more than 2cm into the stomach.

--The next generation of GI docs should be much better-informed about

achalasia. Dr. Clouse said they're even putting a question about the

NCCPs ( " spasm pains " ) on the exam for GI specialists. We're making

progress!

I'm sure there is more, but my notes are in the car and it's now

almost 1:00 and I still have things to do before I can go to bed...

more later!

Debbi

[Guest guest]

In a message dated 4/19/2004 5:32:27 PM Eastern Daylight Time, jmunoz@... writes:

I have never been dilated or anything besides the surgery.I hope that people don't wait until things get worse to dosomething about it. The sooner the better! I am now 15 weekspregnant and feeling terrific!Best of luck to all.Jenifer from Ohio

Jenifer,

I was just curious, I remember you wrote that you had your surgery in Columbus.

How did you find your surgeon, did the GI from Cleveland Clinic reccomend him, or did you have reccomendations from other doctors?

Thanks, and congrats on your happy healthy pregancy!

Jan in Northern KY

[Guest guest]

I had my surgery at 33 (Feb of 2003), very successful.

Also wanted to add I have been on zoloft for a little

over a year and I agree with what Debbi heard at TCC

it seems to help my spasms. I get a minor spasm once

a month if that in the middle of the

night. I have not been back to my doctor since my post-op

consult which was about a month after my surgery. Will look

into it. Since my surgery I don't even need liquid to wash

down food, except for when it is really bready, but I would

need something to wash that down with or without A.

I have never been dilated or anything besides the surgery.

I hope that people don't wait until things get worse to do

something about it. The sooner the better! I am now 15 weeks

pregnant and feeling terrific!

Best of luck to all.

Jenifer from Ohio

> Hey everyone!

>

> I am home now, and I do have *some* information to share, but

> unfortunately not nearly as much as I would have liked to have

> gotten. Achalasia DEFINITELY took a back seat to GERD for the

entire

> summit. (

>

> We were quite well received... every TCC staff member (or to be

more

> accurate, every staff member EXCEPT Dr. Richter, who never once

even

> approached us) seemed to go out of their way to make us feel

> welcome. We had extensive conversations with Dr. Vaezi and Dr.

Rice,

> as well as Amy and , the nurses that do the manometry

testing

> at TCC. I also had a bit of a conversation with Dr. Ray Clouse

> concerning Non-Cardiac Chest Pain (spasm pains) and the lack of

> awareness about this problem in the field of Gastroenterology.

>

> Also, those of you who are patients of Dr. Richter, he will be

moving

> to Philadelphia sometime this year -- if you need a follow up appt

> with him, I would schedule it sooner rather than later. Based on

my

> conversations with some of these doctors this weekend, I would

> recommend Dr. Vaezi as an alternative to Dr. Richter [if you don't

> want to travel to Pennsylvania after Dr. Richter is gone to

> Philadelphia.] Dr. Achkar also seemed quite personable and

> knowledgeable, although I didn't have as much of an opportunity to

> have an in-depth conversation with him like I did with Dr. Vaezi.

>

> It's now after midnight and I have to get up in less than five

hours,

> so I'm going to do a TEENY little review of what I learned. I have

a

> HECK of a week ahead of me this week, and after that has calmed

down

> I will try to go into more depth on these subjects. If you have

> questions about what I'm posting right now, please either direct

them

> to Sandi or wait until I can start posting regularly again (likely

in

> about seven days.) Sandi had some conversations that I didn't, and

> vice versa, so depending on the subject matter, one or the other of

> us might be better equipped to answer.

>

> In no particular order and off the top of my sleep-deprived head:

>

> -- Dilations after a myotomy are NOT due to " scar tissue from the

> myotomy " as many have been led to believe, but rather due to scar

> tissue [strictures] from GERD damage (and it IS possible to have

GERD

> and not have any pain from it.)

>

> -- Low-dose antidepressant medications are emerging as the number-

one

> medication for treating NCCPs (spasm pains), which are believed to

be

> caused by a hypersensitivity in the BRAIN, rather than by bad

signals

> being sent by the damaged esophageal nerves.

>

> -- Cancer of the esophagus is EXTREMELY rare and appears to be much

> lower than what has been reported in the past, either b/c they are

> treating achalasia better and so there is less stasis (retained

food

> rotting in the esophagus), or b/c achalasia is being properly

> diagnosed more often (and so isn't nearly as rare as previously

> thought), or b/c what in the past was attributed to post-achalasia

> cancer development was actually " pseudoachalasia " that was caused

by

> a cancer that was MISSED in the first place (as we had happen this

> last year to a member on this group), or a combination of these

> factors. I believe that in all their time treating achalasia

> patients, Dr. Rice and Dr. Richter said they have only ever had one

> patient who went on to develop esophageal cancer... Dr. Rice

operates

> on 50 achalasia patients each year, and Dr. Rice and his associates

> see about 250 per year, so they're going on some very large numbers.

>

> --Post-myotomy checkups are recommended to keep an eye out for GERD-

> related damage; they are not needed to keep an eye out for

achalasia-

> related cancer.

>

> --There are still no good long-term numbers on Dilations vs Lap.

> Heller Myotomies b/c the Lap. surgery is still relatively " young " ;

> basically the only thing that they seemed to agree on was that the

HM

> surgery was more difficult on previously dilated/botoxed patients,

> and that both surgical and dilated patients might need " touch ups "

> (dilations) down the road, but there is as of yet no way of knowing

> which patients will or won't respond to each type of treatment. In

> general, though, the younger the patient, the more everyone seemed

to

> agree w/ surgery as the first treatment (under age 40 or so was

> considered " younger " ). For unknown reasons, older women seem to do

> better than younger women or men of any age with dilation --

possibly

> as a result of decreased muscle tone.

>

> --Botox is ONLY for those patients who cannot have surgery or a

> dilation. It is NOT recommended for young patients at all -- young

> patients should have surgery or dilations; the example they gave

for

> an ideal Botox patient was a 90-year-old man who had Botox

injections

> over a period of six years before he died of other causes.

>

> --The Witzel dilator has gone by the wayside -- if you have a GI

who

> wants to dilate you w/ a Witzel, RUN AWAY!!!! (always ask the doc

> what equipment he uses!)

>

> --No matter what you have done (surgery or dilation) it is

IMPERATIVE

> to go to an EXPERIENCED specialist. I know we've been harping on

> that forever already, but even the specialists who are now " the

kings

> of achalasia treatment " talked about their steep Learning Curve in

> perfecting their technique. Get someone who has done a hundred

> (surgeries/dilations) already.... don't be someone's practice case.

>

> --Heller Myotomies MUST go at least 2cm and preferably 3cm into the

> stomach beyond the LES. There is a huge difference in successful

> outcome for those that go less than 2cm into the stomach and those

> that go more than 2cm into the stomach.

>

> --The next generation of GI docs should be much better-informed

about

> achalasia. Dr. Clouse said they're even putting a question about

the

> NCCPs ( " spasm pains " ) on the exam for GI specialists. We're making

> progress!

>

>

> I'm sure there is more, but my notes are in the car and it's now

> almost 1:00 and I still have things to do before I can go to bed...

> more later!

>

> Debbi

[Guest guest]

Jan,

I found my surgeon on a recommendation from my GI, Dr. Fromkes.

He told me about Dr. Melvin. I met with him and really

liked him. I asked other Doctors I knew if

they knew who he was and they all said he is one of the best

lap surgeons. I also met with Dr. Richtor at the Cleveland Clinic,

not too impressed, he wanted to dilate me the next day. He said I

was very early in the disease so he would rather dilate me than do

surgery at that point. I knew things would just get worse and did

not want to have to deal with it in another year or so, I wanted a

longer term fix. I consulted with my GI, Dr. Fromkes and he said

NO WAY to a dilation, I was too young.

I know Dr. Richtor treated many on this site with success, I just was

not comfortable with his recommendations to me.

Good luck! I wish I knew about the web site going into this, I

would not have felt so alone.

Jenifer

I asked Dr. Melvin for recommendations from people who he had

performed the surgery on. He put me in contact with a

couple and they both told me if they had to do it over again they

would in a minute. I agree. They also both really liked Dr. Melvin.

> In a message dated 4/19/2004 5:32:27 PM Eastern Daylight Time,

> jmunoz@l... writes:

> I have never been dilated or anything besides the surgery.

>

> I hope that people don't wait until things get worse to do

> something about it. The sooner the better! I am now 15 weeks

> pregnant and feeling terrific!

>

> Best of luck to all.

>

> Jenifer from Ohio

> Jenifer,

> I was just curious, I remember you wrote that you had your surgery

in

> Columbus.

> How did you find your surgeon, did the GI from Cleveland Clinic

reccomend

> him, or did you have reccomendations from other doctors?

> Thanks, and congrats on your happy healthy pregancy!

> Jan in Northern KY