Re: ectomy groupies

[Guest guest]

Hi Kristi,

You're not alone, I know how you are feeling and so do many others here on the board.

I am going to have my -ectomy done soon too, I am 34 years old now and have 2 children (aged 5 and 9). is having her -ectomy done in a about a week and she's 39 if I am correct here, than there is who's in her 30's too and many others aged the same.

An -ectomy at our age is rare, but that is because it is mostly done in cancer patients, which we are not (thank God).

I have been doubting to go for it for months! One day feeling I should go for it, another feeling no way. I was told 10 years ago already that I might one day be facing the decision and shut eyes and ears for it. When you read here on the board, you might find the same as I did: everyone is happy about having it done and everyone would do it over again.

This week is a week of remembering for me. Coming Saturday it is exactly one year ago my second myotomy failed. I know from day to day what happened and the feeling at New Years Day was double, last year I promised myself never to have to undergo another esophagael surgery and look at me now... Yet, I feel totally positive towards the -ectomy. I really really know about all ins and outs, though I am not in medicine. I have been very ill last year because of complications with my myotomy and I have informed myself thoroughly concerning the -ectomy. I even discussed which types of tubes will be used on me!

The thought of having to undergo such major surgery is heavy, I know. But once you've found yourself a good surgeon, with whom you feel at ease and with whom you can discuss your doubts and fears (which I find very important to discuss with the surgeon), you'll find it much easier.

What helped me see things clear was making a mindmap. In this mindmap I put all my options (another kind of myotomy -TSE-, an -ectomy, doing nothing). I wrote down all pros, cons and questions with each option. This mindmap pointed me straight into the direction of the -ectomy. If you want to, I can send you a copy of it.

By the way, have you thought of Prof. Luketich to perform your surgery? He's great (spoke to him on the phone, though I am from The Netherlands-Europe). He's performing 's -ectomy too.

Got to run now, to work.

Let me know if you want the mindmap, I'll send you a copy than.

Love,

Isabella

ectomy groupies

I have never been so confused in all my life. Who do I let perform this procedure. Rice and I didn't hit it off and he is way to controlling, close minded, and arrogant. But I hear he is good. I loved Dr Ferguson at chicago but he doesn't do near as many. Than there is the doctor is Pa. Do I dare make another appt with another Dr when I can hardly eat now. I'm scared out of my witts. 40 is too young to be having this kind of surgical procedure. I guess another reason I'm so scared Is because I work for a cardiothoracic surgeon as his assistant in the OR. We perform these procedures from time to time and I know way to much. I'm really concerned about losing weight. I only weigh 126 now. My prayers are with all of youKristi

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I know this is a difficult time and very confusing BUT ...I am just

going to be blunt here and hope it doesnt defend you but it has to

be said.

Do you want a DR that is one of the best out there for this disease

or do you want the DR who you like or love? This is not about who

you like or love its about the experience they have to get you

better.

It does mean alot to like your Dr dont get me wrong, but in this

case when its such a rare disease, we have to put that to the side

and go with who has the most experience and knowledge.

..

I have been there and done this! I went to DR Rice myself for my 12

year old son cause another DR I " liked " an thought was

a " specialist " but he screwed up my son!

I didnt know about Rice in the beginning but really was blinded by

this wonderfully kind and thought knowledgable DR.Ended up making my

son worse and wanted to tell me after his sugery his worse eating

issues werent from him not doing the surgery right, it was in MY

SONS HEAD. WHAT??????????This nice DR would say that to me??He doen

nothing to see what was wrong, it was all my son.

This is when I had to begin my journey to really find a specialist

and found this group and heard about DR Rice.I called and talked

with him on the phone and he about had me in tears he was so blunt

and seemed so uncaring. EVERYONE here told me how he was but also

said he was the best!

It was very hard for me to deal with him as he was for you,and to

think I needed him to operate on my son.I didnt like his attitude or

anything BUT I HAD TO PUT THAT TO THE SIDE TO GET MY SON

BETTER!!!!!!!This was really hard for me to do cause I wanted to

like him ( as we all would like to be able to like our DRs)and have

some kind of a bond feeling but I just wasnt getting it.BUT HE WAS

ONE OF THE BEST AND MY SON DESERVED THAT THIS TIME

Point of the story.... I went ,he told me my sons surgery was done

wrong from start to finish and was gonna require a SERIUOS open

surgery NOW.

I knew he had the experience and knowledge that my husband and I

wanted a Dr to have this time to get our son better dispite how he

acted.I talked with numerous of his patients and got all positive

things about him except his bedside manner.We put that to the side-

we had to!!!

I will say Dr Rice improved alot once we began our journey with

him.My son was in ICU for 8 1/2 days and DR Rice was in that room

daily checking on him and even rubbing my sons shoulder.Amswering

all questions and doing exactly what a DR needed to do for us and my

sons care and comfort.Can you imagine that? lol

He was a great DR through out once I got past his not so great

bedside manner. : )

You just kinda gotta let him be who he is and you dish it back to

him if needed ; )He really is not that bad at all once you get to

know him.

You need a specialist and he is it! There are a few others out here

but very limited.Dr Rice is not the only one but hes within the few

top.Once again ----You cant base who is gonna operate on you by who

you like, it has to be who has the experience!!!!!!!!!!!!!!!If you

just cant dea with DR Rice there is a few other that are top notch

with him.

Please... I am only trying to getthe point across that even though

you dont like them you need the experience.Dont settle for anything

any less.You deserve to be better and you have to have specialist or

your gonna end up like my so going through it worse the next time

around cuase you didnt go with the right DR . I am here for you t

help in any way.I hope this email doesnt upset you cause thats not

my intention.heres my home e mail if ya want to talk about anything

ok.

Tonia in Va

>

> I have never been so confused in all my life. Who do I let perform

this procedure. Rice and I

> didn't hit it off and he is way to controlling, close minded, and

arrogant. But I hear he is

> good. I loved Dr Ferguson at chicago but he doesn't do near as

many. Than there is the

> doctor is Pa. Do I dare make another appt with another Dr when I

can hardly eat now. I'm

> scared out of my witts. 40 is too young to be having this kind of

surgical procedure. I guess

> another reason I'm so scared Is because I work for a

cardiothoracic surgeon as his assistant

> in the OR. We perform these procedures from time to time and I

know way to much. I'm really

> concerned about losing weight. I only weigh 126 now. My prayers

are with all of you

>

>

> Kristi

>

[Guest guest]

Kristi,

I am 34 years old and just had an esophagectomy in March 2007. Dr.

Rice did my surgery (at the time I was 33). While it is young to have

it done, we also have the benefit of having our age and otherwise good

health on our side. And, I have two young children and in my mind it

was a way to take control over my achalasia and not let the

uncertainty of getting sick run my life. I was also to the point that

nothing else could be done for me. Like you, I was not heavy to begin

with. I went into surgery at 128 pounds, and am now at 118, which has

been my stable weight since the surgery. While I haven't been able to

gain back that 10 pounds, I am not losing weight either.

As for Dr. Rice, yes he is controlling - but it is in your best

interest. Let me tell you, he runs that place. When he says jump, they

ask how high. But the reason for all of that is to make sure that you

get exactly what you need when you need it and it is all done his way.

Yes he is also arrogant, but that is in your best interest also and it

is because he knows his stuff. He is one of the top achalasia surgeons

in the country, and his success rate is incredible - frankly, he has a

right to be arrogant. On the flip side, while he is arrogant, you will

also see a compassionate side to him as well. He may be fast paced and

busy, but he will make the time for you. I can't tell you how many

times I called and left a message for him with a question, or emailed

him and got a phone call back directly from him that same evening on

what should be his own time. He does care about his patients, and he

is an excellent surgeon. I totally understand where you are coming

from, but frankl

y, is your goal to make a new friend, or is your goal to be treated by

a surgeon that has the highest level of expertise with a very detailed

and serious surgery? If you can get past the personality conflict you

have with him, you will find yourself in excellent hands, and his

experience and knowledge is what really counts for YOUR long term

success.

I am at work so I don't have time to go into much more detail, but let

me know if you have any other questions. If you want to email me

offline that's fine too.

in NY

ectomy groupies

achalasia

> I have never been so confused in all my life. Who do I let perform

> this procedure. Rice and I

> didn't hit it off and he is way to controlling, close minded, and

> arrogant. But I hear he is

> good. I loved Dr Ferguson at chicago but he doesn't do near as

> many. Than there is the

> doctor is Pa. Do I dare make another appt with another Dr when I

> can hardly eat now. I'm

> scared out of my witts. 40 is too young to be having this kind of

> surgical procedure. I guess

> another reason I'm so scared Is because I work for a

> cardiothoracic surgeon as his assistant

> in the OR. We perform these procedures from time to time and I

> know way to much. I'm really

> concerned about losing weight. I only weigh 126 now. My prayers

> are with all of you

>

>

> Kristi

>

>

[Guest guest]

Hi a - UGH! it can so confusing - you want to cry sometimes!!

I had forgotten about Dr. Patti moving to Chicago (thanks again,

Carolyn!) If you don't like Dr. Rice, and you don't want to go to PA

to see Dr. Luketich (it may take you until Feb. to get in with him, I

would suggest waiting for Dr. Patti. He is very experienced, well

respected and liked by all who go to see him. His name appears on

NUMEROUS studies - he really seems to know his stuff.

Call and/or email now (I've heard great stuff about him too)

and maybe you can send copies of your most recent test results to

them and get scheduled in early Feb - I know it's a month away but it

is SO VERY WORTH it to wait and see the best.

In the meantime, try drinking some ensure to keep your weight up.

Hang in there sister. We're here for you.

- in NC

9 days...

>

> I have never been so confused in all my life. Who do I let perform

this procedure. Rice and I

> didn't hit it off and he is way to controlling, close minded, and

arrogant. But I hear he is

> good. I loved Dr Ferguson at chicago but he doesn't do near as

many. Than there is the

> doctor is Pa. Do I dare make another appt with another Dr when I

can hardly eat now. I'm

> scared out of my witts. 40 is too young to be having this kind of

surgical procedure. I guess

> another reason I'm so scared Is because I work for a cardiothoracic

surgeon as his assistant

> in the OR. We perform these procedures from time to time and I know

way to much. I'm really

> concerned about losing weight. I only weigh 126 now. My prayers are

with all of you

>

>

> Kristi

>

[Guest guest]

michelle wrote:

> ...I would suggest waiting for Dr. Patti. He is very experienced, ...

With something like an esophagectomy it is important to also consider

the medical center's record and volume for the surgery. I would guess

the center he will be at will have a strong record, but it would be good

to get numbers and compare to the others. Most of the numbers will be

for cancer patients and will show mortality and morbidity rates higher

than we should expect for otherwise healthy achalasia patients, but

numbers that indicate better for cancer should also mean better for

achalasia. In general a lower volume center is a worse risk. The surgeon

is only part of the team, though a very important part.

notan

[Guest guest]

Notan is so right here! Indeed we keep informing ourselves about the most experienced surgeons, but tend to forget that when such surgeon changes hospital one should be aware of the fact that the hospital he starts working for might not (yet) be as experienced with -ectomies as the surgeon is.

I wrote it before here on the board, but I think it's pretty important so I'm writing it again now: in Holland several hospitals (indeed hospitals, not surgeons) have been forbidden to perform -ectomies because of lack of experience. When a hospital performs less than 15 of these surgeries a year, it is not allowed to do them any more over here, as mortal risks become to high. It's the whole team that prevents mortal risks to get too high, not only the surgeon. E.g. after surgery you are taken care of by the team of the intensive care, they must have enough experience to recognise the life threatening complications etc.

So please take Notan's advice and do not only go for an experienced surgeon, but also for an experienced hospital. It's the combination of them that does the trick.

Isabella

Re: Re: ectomy groupies

michelle wrote:> ...I would suggest waiting for Dr. Patti. He is very experienced, ...With something like an esophagectomy it is important to also consider the medical center's record and volume for the surgery. I would guess the center he will be at will have a strong record, but it would be good to get numbers and compare to the others. Most of the numbers will be for cancer patients and will show mortality and morbidity rates higher than we should expect for otherwise healthy achalasia patients, but numbers that indicate better for cancer should also mean better for achalasia. In general a lower volume center is a worse risk. The surgeon is only part of the team, though a very important part.notan

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Kristi, I have to back up Tonia and on this one. Dr Rice did my Heller Myotomy this past July and I will continue to travel to Cleveland to see him. I was lucky to have found Tonia and she clued me in on his lack of "bedside" manner and his abruptness so I felt somewhat prepared the first time I met him. But at the same time he blew me away with his directness. Our bad for not letting you know that he is going to tell you like it is, like or not. Does he agree that you need a Ectomy? Correct me if I am wrong Rice fans but I think he only operates on the E an no other body parts. He knows his stuff so don't rule him out just yet. in VA

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

I for one will never see anyone but Dr. Rice…I am 5 years

out and still eating!!!!!! That’s good enough for me…I don’t

care if he is my friend as long as he took care of me, which he did and fixed

me, which he did!!!

now in Arkansas

From:

achalasia [mailto:achalasia ] On Behalf Of katie

gibbens

Sent: Thursday, January 03, 2008 5:29 PM

achalasia

Subject: Re: ectomy groupies

Kristi, I have to back up Tonia and on this one. Dr

Rice did my Heller Myotomy this past July and I will continue to travel to

Cleveland to see him. I was lucky to have found Tonia and she clued me in on

his lack of " bedside " manner and his abruptness so I felt somewhat

prepared the first time I met him. But at the same time he blew me away with

his directness. Our bad for not letting you know that he is going to tell you

like it is, like or not. Does he agree that you need a Ectomy? Correct me if I

am wrong Rice fans but I think he only operates on the E an no other body

parts. He knows his stuff so don't rule him out just yet.

in VA

Looking for last minute shopping deals? Find

them fast with Search.

[Guest guest]

Say What?? What am I reading? Yes Dr. Rice can be somewhat

direct..but we do not need sugar coating. Plus I think the guy is a

whole heck of alot busier since we are giving him LOTS of business.

And yeah...when I had my heller by him in '93, he operated on the

lady next to me who had lung cancer. He is a THORACIC SURGEON.

Dawn in Ohio

P>S>...He is the best of the best.

>

> I have never been so confused in all my life. Who do I let perform

this procedure. Rice and I

> didn't hit it off and he is way to controlling, close minded, and

arrogant. But I hear he is

> good. I loved Dr Ferguson at chicago but he doesn't do near as

many. Than there is the

> doctor is Pa. Do I dare make another appt with another Dr when I

can hardly eat now. I'm

> scared out of my witts. 40 is too young to be having this kind of

surgical procedure. I guess

> another reason I'm so scared Is because I work for a cardiothoracic

surgeon as his assistant

> in the OR. We perform these procedures from time to time and I know

way to much. I'm really

> concerned about losing weight. I only weigh 126 now. My prayers are

with all of you

>

>

> Kristi

>

[Guest guest]

-Dr. Rice did my myotomy in March 07 and I am able to eat most

everything I want. I found comfort to find someone who knew what he

was doing and who was so confident in his abilities. He definitely

tells you how it is but isn't that what we expect from a doctor?

JoAnn in New Mexico

-- In achalasia , " dawn " <rirey20@...> wrote:

>

> Say What?? What am I reading? Yes Dr. Rice can be somewhat

> direct..but we do not need sugar coating. Plus I think the guy is a

> whole heck of alot busier since we are giving him LOTS of business.

> And yeah...when I had my heller by him in '93, he operated on the

> lady next to me who had lung cancer. He is a THORACIC SURGEON.

>

> Dawn in Ohio

> P>S>...He is the best of the best.

>

>

>

>

>

>

> >

> > I have never been so confused in all my life. Who do I let

perform

> this procedure. Rice and I

> > didn't hit it off and he is way to controlling, close minded, and

> arrogant. But I hear he is

> > good. I loved Dr Ferguson at chicago but he doesn't do near as

> many. Than there is the

> > doctor is Pa. Do I dare make another appt with another Dr when I

> can hardly eat now. I'm

> > scared out of my witts. 40 is too young to be having this kind of

> surgical procedure. I guess

> > another reason I'm so scared Is because I work for a

cardiothoracic

> surgeon as his assistant

> > in the OR. We perform these procedures from time to time and I

know

> way to much. I'm really

> > concerned about losing weight. I only weigh 126 now. My prayers

are

> with all of you

> >

> >

> > Kristi

> >

>

[Guest guest]

Have you spoken to Micahel Marohn - surgeon at s Hopkins, MD he

is the kindest most prof. man I ever met and VERY experienced, I was

reffered to him by Wiliam Ravich GI in Lutherville MD, I live in FL!

410-502-0723, mmarohnq1@...

>

> I have never been so confused in all my life. Who do I let perform

this procedure. Rice and I

> didn't hit it off and he is way to controlling, close minded, and

arrogant. But I hear he is

> good. I loved Dr Ferguson at chicago but he doesn't do near as

many. Than there is the

> doctor is Pa. Do I dare make another appt with another Dr when I

can hardly eat now. I'm

> scared out of my witts. 40 is too young to be having this kind of

surgical procedure. I guess

> another reason I'm so scared Is because I work for a cardiothoracic

surgeon as his assistant

> in the OR. We perform these procedures from time to time and I know

way to much. I'm really

> concerned about losing weight. I only weigh 126 now. My prayers are

with all of you

>

>

> Kristi

>