Re: Still Unsure & Worried

[Guest guest]

, I am so sorry for the discouraging news today. I

can understand your confusion, and how disheartening it

can be.

Did you happen to think to mention to Dr. Rice what Dr.

Patti had written you? This is a tough decision for you.

On the one hand, was Dr. Rice's answers due to Dr. Achkar

being negative or because he simply does not treat that

many patients with DES?

I think, if I were in your shoes, I'd still want to see what

Dr. Patti had to say before making a final decision, whether

is was before or after a consult with Dr. Rice.

Yes, sometimes things do seem to attach us all at once. Never

hesitate to vent here. We care.

Big hugs to you both,

Maggie

Alabama

[Guest guest]

Dear ,I have been following your posts with interest and concern. I have not replied before because I have felt that I have had nothing to say which would be of help, but at this point I DO want to say something. My true knowledge of what is wrong with your husband is minimal, but I have very good instincts. I don't even know the Surgeons you refer to, but I got very good vibes from you when you were talking about Dr Patti. He sounded as if he WANTED to help and was sincerely interested in the challenge it presented. I have read what you have said about all the inconvenience and travelling and fully understand your concerns, but I really think you should consider putting your dear husband's health in his willing hands.As I said, I cannot speak from knowledge, but I speak from the heart. Lots of English love is flying your way at this very minute, from Ann xxx>> Hello, all!> We finally got a call from Dr. Rice's office today. They set up a> consult appointment with him for Jan. 31st. When my husband went to> ask a question (if he treats Diffuse Esophageal Spasm with laproscopic> or thorascopic surgery), they transferred him to Dr. Rice's secretary.> At that point, my husband handed me the phone to ask the questions. > When I talked about his case, I could tell she was cringing when I> told her that he has had 3 rounds of Botox injections. I made sure to> mention that Dr. Achkar (also of Cleveland Clinic) had administered> the last one. When I told her that his diagnosis was DES, she said> that Dr. Rice would have to talk to Dr. Achkar about the case.> About 45 minutes later, Dr. Rice called and spoke to my husband. > He seemed pretty negative about things and I know my husband wasn't> too happy. He told us what we already knew that it is a rare disease,> but he added that it would be with him the rest of his life (I knew A> is that way, but I was somehow hoping DES wasn't). He talked about> doing a long myotomy. He asked "What if I make things worse when I> get in there?" He said that my husband would have to live with> whatever outcome for the rest of his life (more gloom & doom talk, in> my opinion). He also mentioned that esophagectomy would probably be> down the road for him (which surprised my husband). I don't think my> husband had even thought of that, since he doesn't read most of the> group's posts. Maybe I was sheltering him too much by not telling him> the worst of what I read (or maybe I was hoping these things didn't> apply to DES). Not that e-gectomy is the end of the world, though,> just a shock for him to hear. > He never got to ask whether or not it would be an open surgery,> so I called Dr. Rice's secretary back and asked. She said it depends> on the case and that is what we would discuss at the consult. Dr.> Rice has ordered pulmonary tests, a repeat barium swallow and I think> a CT scan and someone will call us to schedule those. We're not sure> if that can be done before the consult appointment or not (may have to> change that date). > Sorry to make a book out of this. We were so discouraged by> what Dr. Rice said that we considered bypassing Cleveland altogether> and just consulting with Dr. Patti. It's a longer travel, but in Dr.> Patti's e mail, he said "a long myotomy was used many years ago and> has been abandoned." Also, "I think that the best treatment today is> a laparoscopic Heller myotomy with Dor fundoplication, no need for a> thoracotomy." Now that I put it in writing, it looks like that's the> solution, but could such a skilled surgeon as Dr. Rice be out of date> with DES? Any advise?> It's been a depressing day... Dr. Rice wasn't optimistic, my> hubby has missed his 2nd day in a row from work because of spasms> (rare for him to have 2 bad days in a row), I'm coming down with a> cold, and we're having trouble with our furnace today! Sorry to vent,> I know it could be worse!> > in Michigan>

[Guest guest]

In a message dated 1/10/2006 3:49:33 P.M. Eastern Standard Time, brendacoyle@... writes:

Sorry to make a book out of this. We were so discouraged bywhat Dr. Rice said that we considered bypassing Cleveland altogetherand just consulting with Dr. Patti. It's a longer travel, but in Dr.Patti's e mail, he said "a long myotomy was used many years ago andhas been abandoned." Also, "I think that the best treatment today isa laparoscopic Heller myotomy with Dor fundoplication, no need for athoracotomy." Now that I put it in writing, it looks like that's thesolution, but could such a skilled surgeon as Dr. Rice be out of datewith DES? Any advise? It's been a depressing day... Dr. Rice wasn't optimistic, myhubby has missed his 2nd day in a row from work because of spasms(rare for him to have 2 bad days in a row), I'm coming down with acold, and we're having trouble with our furnace today! Sorry to vent,I know it could be worse! in Michigan

,

I'm sorry you and your husband had such bad news.

Dr. Rice did my surgery, and he did take really good care of me.

But you have to go with your best instincts-

Good Luck,

Jan

[Guest guest]

let45ride wrote:

.... He asked "What if I make things worse when I

get in there?" He said that my husband would have to live with

whatever outcome for the rest of his life (more gloom & doom talk, in

my opinion). He also mentioned that esophagectomy would probably be

down the road for him (which surprised my husband). ...

It is hard to tell what this means. If he makes things worse, but

then does an esophagectomy and that improves things, in the end things

would be better. The way you tell it, it sounds like he even makes the

esophagectomy sound negative. I had wondered why they never said

anything about esophagectomy. Now we know it is in their bag of tricks

for DES. It may be for your benefit or it may be for their's that they

have chosen to respond the way they do.

....in Dr.

Patti's e mail, he said "a long myotomy was used many years ago and

has been abandoned." Also, "I think that the best treatment today is

a laparoscopic Heller myotomy with Dor fundoplication, no need for a

thoracotomy." Now that I put it in writing, it looks like that's the

solution, but could such a skilled surgeon as Dr. Rice be out of date

with DES? ...

Perhaps Dr. Patti has over stated it when saying it "has been

abandoned." Equally skilled doctors can disagree.

I don't know enough about the problem, the treatments, or the doctors

to know if the negative approach is better of if the positive approach

of Patti is better. Who do you trust? Maybe you need to meet Patti

before you can decide.

notan

[Guest guest]

- This must be a very stressful time for you and your husband. If you are leaning to seeing Dr Patti, why don't you contact the hospital and see if they have a Hospitality House available? Sometimes hospitals have facilities for families of patients who live far away, or, they may have special arrangements with nearby hotels. I am hearing that you are not satisfied with the responses that you are getting from Dr Rice, and you are getting more positive answers from Dr Patti. I would advise that at the very least you arrange to meet with Dr Patti before making your final decision. As always, we are here for you, just as you have been for many of us. Jolet45ride <brendacoyle@...> wrote: Hello, all! We finally got a call from Dr. Rice's office today. They set up

aconsult appointment with him for Jan. 31st. When my husband went toask a question (if he treats Diffuse Esophageal Spasm with laproscopicor thorascopic surgery), they transferred him to Dr. Rice's secretary.At that point, my husband handed me the phone to ask the questions. When I talked about his case, I could tell she was cringing when Itold her that he has had 3 rounds of Botox injections. I made sure tomention that Dr. Achkar (also of Cleveland Clinic) had administeredthe last one. When I told her that his diagnosis was DES, she saidthat Dr. Rice would have to talk to Dr. Achkar about the case. About 45 minutes later, Dr. Rice called and spoke to my husband. He seemed pretty negative about things and I know my husband wasn'ttoo happy. He told us what we already knew that it is a rare disease,but he added that it would be with him the rest of his life (I knew Ais that way, but I was

somehow hoping DES wasn't). He talked aboutdoing a long myotomy. He asked "What if I make things worse when Iget in there?" He said that my husband would have to live withwhatever outcome for the rest of his life (more gloom & doom talk, inmy opinion). He also mentioned that esophagectomy would probably bedown the road for him (which surprised my husband). I don't think myhusband had even thought of that, since he doesn't read most of thegroup's posts. Maybe I was sheltering him too much by not telling himthe worst of what I read (or maybe I was hoping these things didn'tapply to DES). Not that e-gectomy is the end of the world, though,just a shock for him to hear. He never got to ask whether or not it would be an open surgery,so I called Dr. Rice's secretary back and asked. She said it dependson the case and that is what we would discuss at

the consult. Dr.Rice has ordered pulmonary tests, a repeat barium swallow and I thinka CT scan and someone will call us to schedule those. We're not sureif that can be done before the consult appointment or not (may have tochange that date). Sorry to make a book out of this. We were so discouraged bywhat Dr. Rice said that we considered bypassing Cleveland altogetherand just consulting with Dr. Patti. It's a longer travel, but in Dr.Patti's e mail, he said "a long myotomy was used many years ago andhas been abandoned." Also, "I think that the best treatment today isa laparoscopic Heller myotomy with Dor fundoplication, no need for athoracotomy." Now that I put it in writing, it looks like that's thesolution, but could such a skilled surgeon as Dr. Rice be out of datewith DES? Any advise? It's been a depressing day... Dr.

Rice wasn't optimistic, myhubby has missed his 2nd day in a row from work because of spasms(rare for him to have 2 bad days in a row), I'm coming down with acold, and we're having trouble with our furnace today! Sorry to vent,I know it could be worse! in Michigan

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[Guest guest]

Ann,

You are so kind! Thanks for your kind words and concern!

> >

> > Hello, all!

> > We finally got a call from Dr. Rice's office today. They set up a

> > consult appointment with him for Jan. 31st. When my husband went to

> > ask a question (if he treats Diffuse Esophageal Spasm with laproscopic

> > or thorascopic surgery), they transferred him to Dr. Rice's secretary.

> > At that point, my husband handed me the phone to ask the questions.

> > When I talked about his case, I could tell she was cringing when I

> > told her that he has had 3 rounds of Botox injections. I made sure to

> > mention that Dr. Achkar (also of Cleveland Clinic) had administered

> > the last one. When I told her that his diagnosis was DES, she said

> > that Dr. Rice would have to talk to Dr. Achkar about the case.

> > About 45 minutes later, Dr. Rice called and spoke to my husband.

> > He seemed pretty negative about things and I know my husband wasn't

> > too happy. He told us what we already knew that it is a rare disease,

> > but he added that it would be with him the rest of his life (I knew A

> > is that way, but I was somehow hoping DES wasn't). He talked about

> > doing a long myotomy. He asked " What if I make things worse when I

> > get in there? " He said that my husband would have to live with

> > whatever outcome for the rest of his life (more gloom & doom talk, in

> > my opinion). He also mentioned that esophagectomy would probably be

> > down the road for him (which surprised my husband). I don't think my

> > husband had even thought of that, since he doesn't read most of the

> > group's posts. Maybe I was sheltering him too much by not telling him

> > the worst of what I read (or maybe I was hoping these things didn't

> > apply to DES). Not that e-gectomy is the end of the world, though,

> > just a shock for him to hear.

> > He never got to ask whether or not it would be an open surgery,

> > so I called Dr. Rice's secretary back and asked. She said it depends

> > on the case and that is what we would discuss at the consult. Dr.

> > Rice has ordered pulmonary tests, a repeat barium swallow and I think

> > a CT scan and someone will call us to schedule those. We're not sure

> > if that can be done before the consult appointment or not (may have to

> > change that date).

> > Sorry to make a book out of this. We were so discouraged by

> > what Dr. Rice said that we considered bypassing Cleveland altogether

> > and just consulting with Dr. Patti. It's a longer travel, but in Dr.

> > Patti's e mail, he said " a long myotomy was used many years ago and

> > has been abandoned. " Also, " I think that the best treatment today is

> > a laparoscopic Heller myotomy with Dor fundoplication, no need for a

> > thoracotomy. " Now that I put it in writing, it looks like that's the

> > solution, but could such a skilled surgeon as Dr. Rice be out of date

> > with DES? Any advise?

> > It's been a depressing day... Dr. Rice wasn't optimistic, my

> > hubby has missed his 2nd day in a row from work because of spasms

> > (rare for him to have 2 bad days in a row), I'm coming down with a

> > cold, and we're having trouble with our furnace today! Sorry to vent,

> > I know it could be worse!

> >

> > in Michigan

> >

>

[Guest guest]

Maggie,

Thanks for your encouragement! My husband didn't mention to Dr.

Rice about what Dr. Patti said in his e mail. If we go there for a

consult, we will definitely bring it up! So far, they haven't called

to set up the testing he wanted before a consult.

>

> , I am so sorry for the discouraging news today. I

> can understand your confusion, and how disheartening it

> can be.

>

> Did you happen to think to mention to Dr. Rice what Dr.

> Patti had written you? This is a tough decision for you.

> On the one hand, was Dr. Rice's answers due to Dr. Achkar

> being negative or because he simply does not treat that

> many patients with DES?

>

> I think, if I were in your shoes, I'd still want to see what

> Dr. Patti had to say before making a final decision, whether

> is was before or after a consult with Dr. Rice.

>

> Yes, sometimes things do seem to attach us all at once. Never

> hesitate to vent here. We care.

>

> Big hugs to you both,

> Maggie

> Alabama

>

[Guest guest]

Notan,

Thanks for your input! You may be right, that in the long run an

e-gectomy may be a good thing, if it relieves his symptoms.

Hopefully, after a few days to digest (sorry for the pun) what Dr.

Rice said, my husband will be better able to make some decision.

Consulting with both doctors may be the best course of action. I

agree that going with someone you trust and maybe following your

instincts may be the best course of action.

in rainy, gloomy Michigan

[Guest guest]

Personally, I think it means this Doc is way too

negative to cut on me.

--- notan ostrich <notan_ostrich@...> wrote:

---------------------------------

let45ride wrote:

.... He asked " What if I make things worse when Iget in

there? " He said that my husband would have to live

withwhatever outcome for the rest of his life (more

gloom & doom talk, inmy opinion). He also mentioned

that esophagectomy would probably bedown the road for

him (which surprised my husband). ...

It is hard to tell what this means.

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