Re: Please help my family find a surgeon for my father.

[Guest guest]

I don't know how far you are open to traveling, but check s Hopkins in

Baltimore. I know they do the laparascopic procedures. Unfortunately I don't

have a name for you : (

>

> I was so happy to find this achalasia support group last night! I am hoping

that this wonderful group can help my family find a surgeon for my father who is

in need of a esophagectomy.

>

> My dad is 65.

>

> He has suffered from achalasia for at least 30 years.

>

> In 1987 he had a esophageal dilation that resulted in a esophageal rupture

that went undetected for 8 hours and had emergency surgery through his back &

ribs to repair this damage. He still says his ribs hurt - 25 years later.

>

> Throughout the past 25 years he has gone in for occasional dilations and botox

injections. He has not be pro-active about his care - with no insurance he

would sometimes let the situation get to the point where he just wished to die

before he would seek treatment - which always means a trip to the ER and a

couple days in the hospital to clean out the completely blocked esophagus.

>

> 14 months ago he was advised that his only option was a esophagectomy, but he

refused because he was terrified of the post operative recovery, and for a while

he did ok with a soft food only diet.

>

> at that time last year he had a study done and he has no motility at all and

the esophageal sphincter has no relaxation. He has slept upright in a recliner

for as long as I can remember now. His " treatment " plan when he has chest pain

and feels like he is blocked up is a combination of vinegar & baking soda -

basically causing an explosion and allowing him to throw up what is in his

esophagus.

>

> He has massive scarring throughout his thoracic cavity due to the initial

rupture and other surgeries for hernia repair. He has a blood clotting

disorder, and has had pulmonary embulisims and DVT. His allowing his esophagus

to get blocked so many times has resulted in shelves/pockets in his esophagus -

more easily allowing food to become trapped instead of being forced via gravity

into his stomach.

>

> He is not a candidate for any mimimally invasive surgery. He is currently in

a hospital in St. Louis, MO while we do this search for a surgeon who regularly

performs OPEN esophagectomies. Most of the places we find are associated with

cancer centers, and we've put in calls to a few, but we don't think he would be

accepted as a patient since he doesn't have cancer.

>

> As you can probably sense my dad is not the easiest man to deal with and

finding a doctor that does this type of surgery is going to be hard enough, much

less finding one that he can get along with.

>

> I would certainly appreciate any recommendations that you have for surgeons

that could possibly perform his esophagectomy. Most of my family is located in

Missouri, and I am in Houston. We are open to traveling to just about anywhere

if the surgical team and recovery team match up with the unique situation that

is my dad.

>

> Many thanks,

>

>

>

[Guest guest]

If you brouse this group you will find Dr. Rice at the Cleveland Clinic,

Cleveland Ohio and Dr. Patti in Chicago at Northwestern if believe. Both very

experienced and highly regardeed by members of this group. My wife has Dr.

Rice.

> >

> > I was so happy to find this achalasia support group last night! I am hoping

that this wonderful group can help my family find a surgeon for my father who is

in need of a esophagectomy.

> >

> > My dad is 65.

> >

> > He has suffered from achalasia for at least 30 years.

> >

> > In 1987 he had a esophageal dilation that resulted in a esophageal rupture

that went undetected for 8 hours and had emergency surgery through his back &

ribs to repair this damage. He still says his ribs hurt - 25 years later.

> >

> > Throughout the past 25 years he has gone in for occasional dilations and

botox injections. He has not be pro-active about his care - with no insurance

he would sometimes let the situation get to the point where he just wished to

die before he would seek treatment - which always means a trip to the ER and a

couple days in the hospital to clean out the completely blocked esophagus.

> >

> > 14 months ago he was advised that his only option was a esophagectomy, but

he refused because he was terrified of the post operative recovery, and for a

while he did ok with a soft food only diet.

> >

> > at that time last year he had a study done and he has no motility at all and

the esophageal sphincter has no relaxation. He has slept upright in a recliner

for as long as I can remember now. His " treatment " plan when he has chest pain

and feels like he is blocked up is a combination of vinegar & baking soda -

basically causing an explosion and allowing him to throw up what is in his

esophagus.

> >

> > He has massive scarring throughout his thoracic cavity due to the initial

rupture and other surgeries for hernia repair. He has a blood clotting

disorder, and has had pulmonary embulisims and DVT. His allowing his esophagus

to get blocked so many times has resulted in shelves/pockets in his esophagus -

more easily allowing food to become trapped instead of being forced via gravity

into his stomach.

> >

> > He is not a candidate for any mimimally invasive surgery. He is currently

in a hospital in St. Louis, MO while we do this search for a surgeon who

regularly performs OPEN esophagectomies. Most of the places we find are

associated with cancer centers, and we've put in calls to a few, but we don't

think he would be accepted as a patient since he doesn't have cancer.

> >

> > As you can probably sense my dad is not the easiest man to deal with and

finding a doctor that does this type of surgery is going to be hard enough, much

less finding one that he can get along with.

> >

> > I would certainly appreciate any recommendations that you have for surgeons

that could possibly perform his esophagectomy. Most of my family is located in

Missouri, and I am in Houston. We are open to traveling to just about anywhere

if the surgical team and recovery team match up with the unique situation that

is my dad.

> >

> > Many thanks,

> >

> >

> >

>

[Guest guest]

Thank You so much - I had found his name mentioned numerous times on the board

and we called his office and his assistant a was the most helpful person we

have spoken with to date, she requested all my dad's records so hopefully we'll

know soon whether Dr. Rice will be able to accept him as a patient.

>

> If you brouse this group you will find Dr. Rice at the Cleveland Clinic,

Cleveland Ohio and Dr. Patti in Chicago at Northwestern if believe. Both very

experienced and highly regardeed by members of this group. My wife has Dr.

Rice.

>

>

[Guest guest]

See below, hope this helps...

Carolyn

Dr Janet Todorczuk- research on Elderly and Achalasia

Specialists in Gastroenterology

11525 Olde Cabin Road

St. Louis, MO 63141

(314) 997-0554

http://www.gidoctor.net/dr-janet-todorczuk.php

Center for Advanced Medicine

GI Center

4921 Parkview Place, 8th Floor, Suite C

St. Louis, MO 63110

Phone:  314-454-8877     Fax: 314-454-5396

Brent D. s, MD, FACS

http://wuphysicians.wustl.edu/physician2.aspx?PhysNum=3228

Marco G. Patti, MD

Professor of Surgery

Director, Center for Esophageal Diseases

University of Chicago Pritzker School of Medicine

5841 S. land Avenue, MC 5095, Room G 201

Chicago, IL 60637

Telephone: 773-702-4865

E-mail: mpatti@...

 

>

> >

> > I was so happy to find this achalasia support group last night! I am hoping

that this wonderful group can help my family find a surgeon for my father who is

in need of a esophagectomy.

> >

> > My dad is 65.

> >

> > He has suffered from achalasia for at least 30 years.

> >

> > In 1987 he had a esophageal dilation that resulted in a esophageal rupture

that went undetected for 8 hours and had emergency surgery through his back &

ribs to repair this damage. He still says his ribs hurt - 25 years later.

> >

> > Throughout the past 25 years he has gone in for occasional dilations and

botox injections. He has not be pro-active about his care - with no insurance

he would sometimes let the situation get to the point where he just wished to

die before he would seek treatment - which always means a trip to the ER and a

couple days in the hospital to clean out the completely blocked esophagus.

> >

> > 14 months ago he was advised that his only option was a esophagectomy, but

he refused because he was terrified of the post operative recovery, and for a

while he did ok with a soft food only diet.

> >

> > at that time last year he had a study done and he has no motility at all and

the esophageal sphincter has no relaxation. He has slept upright in a recliner

for as long as I can remember now. His " treatment " plan when he has chest pain

and feels like he is blocked up is a combination of vinegar & baking soda -

basically causing an explosion and allowing him to throw up what is in his

esophagus.

> >

> > He has massive scarring throughout his thoracic cavity due to the initial

rupture and other surgeries for hernia repair. He has a blood clotting

disorder, and has had pulmonary embulisims and DVT. His allowing his esophagus

to get blocked so many times has resulted in shelves/pockets in his esophagus -

more easily allowing food to become trapped instead of being forced via gravity

into his stomach.

> >

> > He is not a candidate for any mimimally invasive surgery. He is currently

in a hospital in St. Louis, MO while we do this search for a surgeon who

regularly performs OPEN esophagectomies. Most of the places we find are

associated with cancer centers, and we've put in calls to a few, but we don't

think he would be accepted as a patient since he doesn't have cancer.

> >

> > As you can probably sense my dad is not the easiest man to deal with and

finding a doctor that does this type of surgery is going to be hard enough, much

less finding one that he can get along with.

> >

> > I would certainly appreciate any recommendations that you have for surgeons

that could possibly perform his esophagectomy. Most of my family is located in

Missouri, and I am in Houston. We are open to traveling to just about anywhere

if the surgical team and recovery team match up with the unique situation that

is my dad.

> >

> > Many thanks,

> >

> >

> >

>

[Guest guest]

Go to Univ of Michigan Hospitals and see Dr Scheimann for Achalasia.He is the

one who finally told us that my daughter has A and pretty honest to tell you

what treatment is best for you.  Cleveland is only about 3 hrs drive. Good

LUCK!

________________________________

From: DM <dgmatousek@...>

achalasia

Sent: Tue, March 8, 2011 12:10:30 PM

Subject: Re: Please help my family find a surgeon for my father.

 

If you brouse this group you will find Dr. Rice at the Cleveland Clinic,

Cleveland Ohio and Dr. Patti in Chicago at Northwestern if believe. Both very

experienced and highly regardeed by members of this group. My wife has Dr. Rice.

> >

> > I was so happy to find this achalasia support group last night! I am hoping

>that this wonderful group can help my family find a surgeon for my father who

is

>in need of a esophagectomy.

> >

> > My dad is 65.

> >

> > He has suffered from achalasia for at least 30 years.

> >

> > In 1987 he had a esophageal dilation that resulted in a esophageal rupture

>that went undetected for 8 hours and had emergency surgery through his back &

>ribs to repair this damage. He still says his ribs hurt - 25 years later.

> >

> > Throughout the past 25 years he has gone in for occasional dilations and

>botox injections. He has not be pro-active about his care - with no insurance

he

>would sometimes let the situation get to the point where he just wished to die

>before he would seek treatment - which always means a trip to the ER and a

>couple days in the hospital to clean out the completely blocked esophagus.

> >

> > 14 months ago he was advised that his only option was a esophagectomy, but

he

>refused because he was terrified of the post operative recovery, and for a

while

>he did ok with a soft food only diet.

> >

> > at that time last year he had a study done and he has no motility at all and

>the esophageal sphincter has no relaxation. He has slept upright in a recliner

>for as long as I can remember now. His " treatment " plan when he has chest pain

>and feels like he is blocked up is a combination of vinegar & baking soda -

>basically causing an explosion and allowing him to throw up what is in his

>esophagus.

> >

> > He has massive scarring throughout his thoracic cavity due to the initial

>rupture and other surgeries for hernia repair. He has a blood clotting

disorder,

>and has had pulmonary embulisims and DVT. His allowing his esophagus to get

>blocked so many times has resulted in shelves/pockets in his esophagus - more

>easily allowing food to become trapped instead of being forced via gravity into

>his stomach.

> >

> > He is not a candidate for any mimimally invasive surgery. He is currently in

>a hospital in St. Louis, MO while we do this search for a surgeon who regularly

>performs OPEN esophagectomies. Most of the places we find are associated with

>cancer centers, and we've put in calls to a few, but we don't think he would be

>accepted as a patient since he doesn't have cancer.

> >

> > As you can probably sense my dad is not the easiest man to deal with and

>finding a doctor that does this type of surgery is going to be hard enough,

much

>less finding one that he can get along with.

> >

> > I would certainly appreciate any recommendations that you have for surgeons

>that could possibly perform his esophagectomy. Most of my family is located in

>Missouri, and I am in Houston. We are open to traveling to just about anywhere

>if the surgical team and recovery team match up with the unique situation that

>is my dad.

> >

> > Many thanks,

> >

> >

> >

>

[Guest guest]

wrote:

> Most of the places we find are associated with cancer centers, and we've put

in calls to a few, but we don't think he would be accepted as a patient since he

doesn't have cancer.

Most of the surgeons that do esophagectomies for achalasia do most of

their esophagectomies on cancer patients. Even so, it is best to get a

surgeon that also does a lot of myotomies for achalasia. There are not

very many esophagectomies done for achalasia. Much less than for

myotomies. You want someone that does a lot of them and that probably

means they have to do cancer patients to have enough to stay sharp at it.

notan

[Guest guest]

hi doc who did my dau A surgery was an esoph cancer doc who also specialist in

HM  refered by our GI. They have been doing HM surg..

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Wed, March 9, 2011 12:31:55 AM

Subject: Re: Please help my family find a surgeon for my father.

 

wrote:

> Most of the places we find are associated with cancer centers, and we've put

in

>calls to a few, but we don't think he would be accepted as a patient since he

>doesn't have cancer.

Most of the surgeons that do esophagectomies for achalasia do most of

their esophagectomies on cancer patients. Even so, it is best to get a

surgeon that also does a lot of myotomies for achalasia. There are not

very many esophagectomies done for achalasia. Much less than for

myotomies. You want someone that does a lot of them and that probably

means they have to do cancer patients to have enough to stay sharp at it.

notan

[Guest guest]

Dr. Rice removed my esophagus in 2008. I highly recommend him. Also, a

Stepnick, his case manager, is fantastic.

InVA

> >

> > If you brouse this group you will find Dr. Rice at the Cleveland Clinic,

Cleveland Ohio and Dr. Patti in Chicago at Northwestern if believe. Both very

experienced and highly regardeed by members of this group. My wife has Dr.

Rice.

> >

> >

>