Re: Post-fundo update

[Guest guest]

Did he recommend this after having you do an upper GI and/or a endoscope? Have you had a manometery to rule out Achalasia? I cannot recall if you have had those tests yet? It would seem to me to have them done first. If you do not need a myotomy then I would not have it done. I would echo the fact about maybe having the wrap redone. Just some things to ponder over and maybe ask your doctors.

in Suffolk

In a message dated 5/30/2006 9:33:42 PM GMT Standard Time, nrtl888@... writes:

Hi Everyone,I'm the one who has developed achalasia-like symptoms since my fundo 4 months ago. I just had an appointment with Dr. Patti and he echoed Dr. Way's recommendation to have a myotomy with partial or 180 fundo. Because my original problem was reflux, I just can't see myself getting a myotomy, so at this point I am scared to death, confused and don't know what to do. I feel like I have run out of doctors and surgeons to even ask. I could try getting a dilation, but even that I am not sure about anymore (I have had one dilation to only 15 mm or so I believe), since I have heard of fundo patients being worse off after them.Terry

[Guest guest]

Terry, does Dr. Patti not have an email address? Why not

write him if he does. List all your questions and concerns

and ask him to address them one by one. I'd simple say

that since I left his office, I realized I still had a lot of

questions and concerns and before you booked something

as radical as surgery, you'd like to have answers to those

questions. At least that way if you wish to get another

opinion, you'll know exactly why he decided on the myotomy

instead of the redo to base a second opinion on.

If he doesn't have email, then I'd call him with a list of

questions in hand and make notes as he answers them.

Good luck and best wishes.

Maggie

Alabama

[Guest guest]

Hi ,

I have had many barium swallows since the fundo. They all showed

delayed emptying of the esophagus, but did not make any definitive

statements about a specific disorder. I have had two endoscopies

since the fundo (at the medical clinic where I got the fundo).

Neither reported there being anything amiss with the fundo, but I

don't believe the doctor performing them is a fundo or achalasia

expert. I've had 2 manometries since the fundo. The last one

indicated achalasia. The one before that showed something

progressing towards achalasia I believe (some lack of peristalsis).

I just think my swallowing gets worse as time progresses.

Terry

>

>

> Did he recommend this after having you do an upper GI and/or a

endoscope?

> Have you had a manometery to rule out Achalasia? I cannot recall

if you have

> had those tests yet? It would seem to me to have them done

first. If you do

> not need a myotomy then I would not have it done. I would echo

the fact

> about maybe having the wrap redone. Just some things to ponder

over and maybe

> ask your doctors.

>

>

> in Suffolk

>

>

>

> In a message dated 5/30/2006 9:33:42 PM GMT Standard Time,

nrtl888@...

> writes:

>

> Hi Everyone,

>

> I'm the one who has developed achalasia-like symptoms since my

fundo 4

> months ago. I just had an appointment with Dr. Patti and he

echoed Dr.

> Way's recommendation to have a myotomy with partial or 180 fundo.

> Because my original problem was reflux, I just can't see myself

getting

> a myotomy, so at this point I am scared to death, confused and

don't

> know what to do. I feel like I have run out of doctors and

surgeons to

> even ask. I could try getting a dilation, but even that I am not

sure

> about anymore (I have had one dilation to only 15 mm or so I

believe),

> since I have heard of fundo patients being worse off after them.

>

> Terry

>

>

>

>

>

>

>

[Guest guest]

Terry,

I am not trying to pressure you to see Dr. Morton but I did want

to mention that he is a surgeon instead of a GI doctor so you could

probably see him even though you already saw Dr. Lowe. But your

insurance may require a referal etc.

I really liked Maggie's suggestion. Dr. Patti's assistant is

Rodriquez. He had told me I could email him questions about

my surgery to pass onto Dr. Patti. It may be better if you don't

mention you got his email from me, but it is

rodriquezf@.... I also just found Dr. Patti's address

from an article online: pattim@....

Feel free to post a draft list of questions to Dr. Patti for us to

review before you email him if you want suggestions from us about

them etc.

I can understand your not wanting to travel far to see someone.

Hopefully, Dr. Patti can clarify things.

Vicki

>

> Terry, does Dr. Patti not have an email address? Why not

> write him if he does. List all your questions and concerns

> and ask him to address them one by one. I'd simple say

> that since I left his office, I realized I still had a lot of

> questions and concerns and before you booked something

> as radical as surgery, you'd like to have answers to those

> questions. At least that way if you wish to get another

> opinion, you'll know exactly why he decided on the myotomy

> instead of the redo to base a second opinion on.

>

> If he doesn't have email, then I'd call him with a list of

> questions in hand and make notes as he answers them.

>

> Good luck and best wishes.

>

> Maggie

> Alabama

>

[Guest guest]

Dear Terry,

Your story pulls at my heart because you are so DONE with the whole thing. Aren't you the one I told to puff out your chest and push and shove...

So that didn't seem to work, so let me back up. I really think you are wasting your time and right now, even more important, your energy and spirit with doctors that aren't esophagus experts. Whether your problem is GERD w/ a tight wrap or achalasia, it isn't a common case of either and you are very complicated. Any doctor who isn't absolutely at the top of their field is going to confuse you.

I also gave you my pep talk about how they will want to talk to you. Let me say it again... (but I don't know if you are male or female) You are the king or queen of the prom, everyone wants to dance with you. I'd call, email, and fax summaries of your tests to the top doctors. You don't have time to wait for an appointment. They will put you off 3 weeks at least for a new patient.

Then call them back. I guarantee they will call you back, most of them. You do not have to go draggin around to doctor's appointments. I mean really, what can they do looking at you anyway, they really want to see your test results. If you have already sent them your test summaries they can talk to you on the phone.

If you are kind of hesitant to do that, do you have a spouse or relative who will do it for you? I know it takes energy and you are just sick of the whole thing. I'll do it for you if you like...

I'd suggest maybe the highly recommended gi's not just surgeons. I adore Dr. Ippoliti at Cedars, and I am pretty sure he would talk to you in depth, he has with me. 310 423 7581. Really good gi's may be able to pinpoint your problem better.

The others can give you names. Actually there are probably only about 5 doctors I would call. Any lesser gi's just aren't going to have the experience.

Sandy in So Cal...

[Guest guest]

Hi Maggie,

That is a good idea to compile a list of questions. At this point I

am very confused and certainly wouldn't jump into something like a

myotomy, although he did sufficently scare me by saying I should do

it before summer because my esophagus would just become more and more

dilated.

Terry

>

> Terry, does Dr. Patti not have an email address? Why not

> write him if he does. List all your questions and concerns

> and ask him to address them one by one. I'd simple say

> that since I left his office, I realized I still had a lot of

> questions and concerns and before you booked something

> as radical as surgery, you'd like to have answers to those

> questions. At least that way if you wish to get another

> opinion, you'll know exactly why he decided on the myotomy

> instead of the redo to base a second opinion on.

>

> If he doesn't have email, then I'd call him with a list of

> questions in hand and make notes as he answers them.

>

> Good luck and best wishes.

>

> Maggie

> Alabama

>

[Guest guest]

Hi Sandy,

Thank you for your encouragement and suggestions. Is Dr. Ippoliti at

Cedars an esophagus expert? It would be great if some of these

doctors would do phone consults. Often they want the tests done at

their facilities though, since they don't necessarily trust the

results of other facilities. Although I have had enough barium and

tubes in my nose to last me a couple lifetimes.

Terry

>

>

> Dear Terry,

>

> Your story pulls at my heart because you are so DONE with the whole

> thing. Aren't you the one I told to puff out your chest and push

and

> shove...

>

> So that didn't seem to work, so let me back up. I really think you

are

> wasting your time and right now, even more important, your energy

and

> spirit with doctors that aren't esophagus experts. Whether your

problem

> is GERD w/ a tight wrap or achalasia, it isn't a common case of

either

> and you are very complicated. Any doctor who isn't absolutely at

the

> top of their field is going to confuse you.

>

> I also gave you my pep talk about how they will want to talk to

you.

> Let me say it again... (but I don't know if you are male or

female) You

> are the king or queen of the prom, everyone wants to dance with

you.

> I'd call, email, and fax summaries of your tests to the top

doctors.

> You don't have time to wait for an appointment. They will put you

off 3

> weeks at least for a new patient.

>

> Then call them back. I guarantee they will call you back, most of

them.

> You do not have to go draggin around to doctor's appointments. I

mean

> really, what can they do looking at you anyway, they really want to

see

> your test results. If you have already sent them your test

summaries

> they can talk to you on the phone.

>

> If you are kind of hesitant to do that, do you have a spouse or

relative

> who will do it for you? I know it takes energy and you are just

sick of

> the whole thing. I'll do it for you if you like...

>

> I'd suggest maybe the highly recommended gi's not just surgeons. I

> adore Dr. Ippoliti at Cedars, and I am pretty sure he would talk to

you

> in depth, he has with me. 310 423 7581. Really good gi's may be

able

> to pinpoint your problem better.

>

> The others can give you names. Actually there are probably only

about 5

> doctors I would call. Any lesser gi's just aren't going to have the

> experience.

>

> Sandy in So Cal...

>

[Guest guest]

Hi Vicki,

Thank you for the info about Dr. Patti and Dr. Morton. At Stanford,

I am already consulting with Dr. Curet (a surgeon), I wonder if I

could also see Dr. Morton. I think I am beginning to be untrusting

of surgeons. I often feel like they don't really review the records

that thoroughly themselves and are quite quick to want to operate

(makes sense, they are surgeons, and if we go to them, obviously we

are considering surgery). With both Way and Patti, I talked more to

the assistant doctors (and I think they were the ones that did most

of the reviewing of records). Maybe I am just not asserting myself

well enough.

Terry

> >

> > Terry, does Dr. Patti not have an email address? Why not

> > write him if he does. List all your questions and concerns

> > and ask him to address them one by one. I'd simple say

> > that since I left his office, I realized I still had a lot of

> > questions and concerns and before you booked something

> > as radical as surgery, you'd like to have answers to those

> > questions. At least that way if you wish to get another

> > opinion, you'll know exactly why he decided on the myotomy

> > instead of the redo to base a second opinion on.

> >

> > If he doesn't have email, then I'd call him with a list of

> > questions in hand and make notes as he answers them.

> >

> > Good luck and best wishes.

> >

> > Maggie

> > Alabama

> >

>

[Guest guest]

If there are indications that there is Achalasia then there would be good reason to have the myotomy. I would also ask if the myotomy is performed then what will happen with the wrap? Will they take it down and do the myotomy and then replace the wrap or not replace the wrap? There is a big concern over acid reflux after the myotomy without a wrap but then there is the other side of that coin too. Could the wrap be to tight after the surgery? If that is the case then you would continue to have similar swallowing problems. That was my case after my lapro Heller's with wrap. I ended up having a second surgery to correct that and now I do not have a wrap and I take priolsec once every morning. I have not had any trouble with acid reflux to this point and it has been over a year sense my last surgery.

in Suffolk

In a message dated 5/30/2006 11:37:01 PM GMT Standard Time, nrtl888@... writes:

Hi ,I have had many barium swallows since the fundo. They all showed delayed emptying of the esophagus, but did not make any definitive statements about a specific disorder. I have had two endoscopies since the fundo (at the medical clinic where I got the fundo). Neither reported there being anything amiss with the fundo, but I don't believe the doctor performing them is a fundo or achalasia expert. I've had 2 manometries since the fundo. The last one indicated achalasia. The one before that showed something progressing towards achalasia I believe (some lack of peristalsis). I just think my swallowing gets worse as time progresses.Terry>> > Did he recommend this after having you do an upper GI and/or a endoscope? > Have you had a manometery to rule out Achalasia? I cannot recall if you have > had those tests yet? It would seem to me to have them done first. If you do > not need a myotomy then I would not have it done. I would echo the fact > about maybe having the wrap redone. Just some things to ponder over and maybe > ask your doctors.> > > in Suffolk> > > > In a message dated 5/30/2006 9:33:42 PM GMT Standard Time, nrtl888@... > writes:> > Hi Everyone,> > I'm the one who has developed achalasia-like symptoms since my fundo 4 > months ago. I just had an appointment with Dr. Patti and he echoed Dr. > Way's recommendation to have a myotomy with partial or 180 fundo. > Because my original problem was reflux, I just can't see myself getting > a myotomy, so at this point I am scared to death, confused and don't > know what to do. I feel like I have run out of doctors and surgeons to > even ask. I could try getting a dilation, but even that I am not sure > about anymore (I have had one dilation to only 15 mm or so I believe), > since I have heard of fundo patients being worse off after them.> > Terry> > > > > > >

[Guest guest]

,

Interesting. Do you happen to know if the achalasia symptoms go

away or remain after the band is removed in animals? My hope was

that a tight fundo just mimiced achalasia but the achalasia symptoms

would go away if the fundo was redone.

Vicki

> >> > >

> >> > > Hi Everyone,

> >> > >

> >> > > I'm the one who has developed achalasia-like symptoms

> >> > > since my

> >> > fundo 4

> >> > > months ago. I just had an appointment with Dr. Patti and

> >> > > he

> >> > echoed Dr.

> >> > > Way's recommendation to have a myotomy with partial or 180

> >> fundo.

> >> > > Because my original problem was reflux, I just can't see

> > myself

> >> > getting

> >> > > a myotomy, so at this point I am scared to death, confused

> >> > > and

> >> > don't

> >> > > know what to do. I feel like I have run out of doctors

> >> > > and

> >> > surgeons to

> >> > > even ask. I could try getting a dilation, but even that I

> >> > > am

> > not

> >> > sure

> >> > > about anymore (I have had one dilation to only 15 mm or so

> >> > > I

> >> > believe),

> >> > > since I have heard of fundo patients being worse off after

> > them.

> >> > >

> >> > > Terry

> >> > >

> >> >

> >>

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Supposedly there would still be some kind of wrap, maybe 180/240. My

concern is that I am getting stomach reflux even now, with the full

wrap, so any reduced wrap would just make it worse. I am already on

high dose PPIs in an attempt to control it (helps but does not

eliminate it).

Terry

> >

> >

> > Did he recommend this after having you do an upper GI and/or a

> endoscope?

> > Have you had a manometery to rule out Achalasia? I cannot

recall

> if you have

> > had those tests yet? It would seem to me to have them done

> first. If you do

> > not need a myotomy then I would not have it done. I would echo

> the fact

> > about maybe having the wrap redone. Just some things to

ponder

> over and maybe

> > ask your doctors.

> >

> >

> > in Suffolk

> >

> >

> >

> > In a message dated 5/30/2006 9:33:42 PM GMT Standard Time,

> nrtl888@

> > writes:

> >

> > Hi Everyone,

> >

> > I'm the one who has developed achalasia-like symptoms since my

> fundo 4

> > months ago. I just had an appointment with Dr. Patti and he

> echoed Dr.

> > Way's recommendation to have a myotomy with partial or 180

fundo.

> > Because my original problem was reflux, I just can't see myself

> getting

> > a myotomy, so at this point I am scared to death, confused and

> don't

> > know what to do. I feel like I have run out of doctors and

> surgeons to

> > even ask. I could try getting a dilation, but even that I am

not

> sure

> > about anymore (I have had one dilation to only 15 mm or so I

> believe),

> > since I have heard of fundo patients being worse off after them.

> >

> > Terry

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello nrtl888@...,

In reference to your comment:

My concern is that I am getting stomach reflux even now, with the full wrap

Terry, is the reflux coming from your stomach or from your

esophagus. If it is coming from the esophagus, the food which

comes up will taste just as it did going down. This would

indicate that the food never reached the stomach.

I know you have mentioned some pain, but could that pain

be from spasms(NCCP) and not the heartburn pain? Could

you please describe more clearly the types of pains you get.

Most members who have spasms describe them as beginning

in the chest, going through to the back and often out into

the arms, neck, ears, etc.

Maggie

Alabama

[Guest guest]

, that is very interesting. Do you know where I could find

references to that?

And Vicki, yes, good question, do the symptoms go away?? I guess the

problem is everyone is different too and would react differently.

Terry

> > >> > >

> > >> > > Hi Everyone,

> > >> > >

> > >> > > I'm the one who has developed achalasia-like symptoms

> > >> > > since my

> > >> > fundo 4

> > >> > > months ago. I just had an appointment with Dr. Patti and

> > >> > > he

> > >> > echoed Dr.

> > >> > > Way's recommendation to have a myotomy with partial or 180

> > >> fundo.

> > >> > > Because my original problem was reflux, I just can't see

> > > myself

> > >> > getting

> > >> > > a myotomy, so at this point I am scared to death, confused

> > >> > > and

> > >> > don't

> > >> > > know what to do. I feel like I have run out of doctors

> > >> > > and

> > >> > surgeons to

> > >> > > even ask. I could try getting a dilation, but even that I

> > >> > > am

> > > not

> > >> > sure

> > >> > > about anymore (I have had one dilation to only 15 mm or so

> > >> > > I

> > >> > believe),

> > >> > > since I have heard of fundo patients being worse off after

> > > them.

> > >> > >

> > >> > > Terry

> > >> > >

> > >> >

> > >>

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

In lab animals, the achalasia symptoms apparently go away if the

band is removed within a few weeks. I haven't found any studies

that show whether the achalasia symptoms from banding the LES

become permanent after a longer time.

A 1999 study entitled " Are the motility abnormalities of

achalasia reversible? An experimental outflow obstruction in the

feline model " says:

" This study was designed to evaluate the evolution and

reversibility of motility abnormalities resulting from esophageal

outflow obstruction in cats. ... By 6 weeks after banding the

esophagus was markedly dilated and exhibited aperistaltic,

low-amplitude esophageal motility typical of that seen in

clinical achalasia. Importantly, removal of the bands resulted in

a prompt return of both peristalsis and amplitude of contraction.

CONCLUSIONS: Loss of compliance of the lower esophageal sphincter

produces outflow obstruction with the resultant loss of

esophageal contraction amplitude and peristaltic waveform typical

of achalasia in humans. These abnormalities were reversible after

relief of obstruction in the feline model and may indicate that

early relief of outflow obstruction in clinical achalasia may

preserve esophageal function in patients. "

in Lancaster, PA

Re: Post-fundo achalasia update

,

Interesting. Do you happen to know if the achalasia symptoms go

away or remain after the band is removed in animals? My hope was

that a tight fundo just mimiced achalasia but the achalasia

symptoms

would go away if the fundo was redone.

Vicki

> >> > >

> >> > > Hi Everyone,

> >> > >

> >> > > I'm the one who has developed achalasia-like symptoms

> >> > > since my

> >> > fundo 4

> >> > > months ago. I just had an appointment with Dr. Patti

> >> > > and

> >> > > he

> >> > echoed Dr.

> >> > > Way's recommendation to have a myotomy with partial or

> >> > > 180

> >> fundo.

> >> > > Because my original problem was reflux, I just can't see

> > myself

> >> > getting

> >> > > a myotomy, so at this point I am scared to death,

> >> > > confused

> >> > > and

> >> > don't

> >> > > know what to do. I feel like I have run out of doctors

> >> > > and

> >> > surgeons to

> >> > > even ask. I could try getting a dilation, but even that

> >> > > I

> >> > > am

> > not

> >> > sure

> >> > > about anymore (I have had one dilation to only 15 mm or

> >> > > so

> >> > > I

> >> > believe),

> >> > > since I have heard of fundo patients being worse off

> >> > > after

> > them.

> >> > >

> >> > > Terry

> >> > >

[Guest guest]

Hi Maggie,

I have both types of reflux -- stuff that has not made it to my

stomach yet or has been sitting around a while, and also stuff from

my stomach. I can taste/feel the difference. Often the stuff from

my stomach will directly correlate with burning/pain in my stomach

that comes I think when bile is backflowing sometimes after eating.

So I guess the best of both worlds, lucky me. I am high doses of

Nexium, so there is not much, if any, acid at least.

Terry

>

> Hello nrtl888@...,

> In reference to your comment:

>

>

> My

> concern is that I am getting stomach reflux even now, with the

full

> wrap

>

> Terry, is the reflux coming from your stomach or from your

> esophagus. If it is coming from the esophagus, the food which

> comes up will taste just as it did going down. This would

> indicate that the food never reached the stomach.

>

> I know you have mentioned some pain, but could that pain

> be from spasms(NCCP) and not the heartburn pain? Could

> you please describe more clearly the types of pains you get.

> Most members who have spasms describe them as beginning

> in the chest, going through to the back and often out into

> the arms, neck, ears, etc.

>

> Maggie

> Alabama

>

[Guest guest]

Terry, I think a VERY experienced doctor can get the wrap to work better for you, it sounds like it is just too tight now, or your body changed. But I think you should seriously consider doing something sooner than later before your esophagus is a mess.

Sandy in So Cal

> > >> > > > > > Did he recommend this after having you do an upper GI and/or a > > endoscope? > > > Have you had a manometery to rule out Achalasia? I cannot > recall > > if you have > > > had those tests yet? It would seem to me to have them done > > first. If you do > > > not need a myotomy then I would not have it done. I would echo > > the fact > > > about maybe having the wrap redone. Just some things to > ponder > > over and maybe > > > ask your doctors.> > > > > > > > > in Suffolk> > > > > > > > > > > > In a message dated 5/30/2006 9:33:42 PM GMT Standard Time, > > nrtl888@ > > > writes:> > > > > > Hi Everyone,> > > > > > I'm the one who has developed achalasia-like symptoms since my > > fundo 4 > > > months ago. I just had an appointment with Dr. Patti and he > > echoed Dr. > > > Way's recommendation to have a myotomy with partial or 180 > fundo. > > > Because my original problem was reflux, I just can't see myself > > getting > > > a myotomy, so at this point I am scared to death, confused and > > don't > > > know what to do. I feel like I have run out of doctors and > > surgeons to > > > even ask. I could try getting a dilation, but even that I am > not > > sure > > > about anymore (I have had one dilation to only 15 mm or so I > > believe), > > > since I have heard of fundo patients being worse off after them.> > > > > > Terry> > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Dr. Ippoliti, from what I know is a whole gi expert. I met him at UCLA and he was the go-to gi in Southern CA. He moved to Cedars about 3 years ago. He teaches, and is part of the esophageal center at Cedars. He does the esophagus, and intestional issues as well as reflux. Compared to a surgeon, he may be a better diagnostician.

His phone number is: 310 423 7581. He set up appointments for me without me having to go in for an appointment, but I had already been a patient. Some doctors make you come in just for them to tell you the test results, he didn't. I just have to believe he would at least talk to you on the phone. Copies of the reports from your tests would be a good start. I think if you are honest that you are emotionally at the end of your rope, and probably malnourished that he would consult on the phone. If you said you were referred to him by a successful VATS patient at Cedars, then my name, Sandy Carroll, he would return your call.

Remember, you are a valuable patient to them, by studying complications of wraps etc. they learn more for others who aren't as complicated. They are eager to talk to you. You aren't a runny nose.

Because he teaches and has other responsibilities, as most of the doctors we use on this site, they are not clinics that just churn patients through for runny noses. They have teaching days, surgery days, and office days. So they aren't like a resident running all over the place, they have offices and use them.

Again, I haven't really heard of anyone going to anywhere besides Cedars for achalasia lately in Southern CA. There should be esophageal centers at UCLA, UCI, and USC. I just haven't run into anyone who did more than an initial contact there. Same with Loma . In Northern CA, I've only heard of UCSF for these problems. Seattle did have Dr. Pellegrini, but rumors have it he is travelling all the time and others under him don't have the experience. Not sure if that is all true, though.

If you call your doctors for the old tests they should be willing to fax to you or to another doctor, probably more willing to fax or mail directly to you. Those are your property. All of us should ask for these results to have on hand anyway.

Good luck. Give him a call. It can't hurt. As well, call the other experts, no matter where. They don't necessarily need to know if you would travel and you don't know if you would go far for treatment anyway. You want to pump them for information. Then make your decisions.

The treatment you get now will affect you the rest of your life. More important than investing in a house or a car or maybe even an education. You have to be healthy to do all those things.

Sandy in So Cal> >> > > > Dear Terry,> > > > Your story pulls at my heart because you are so DONE with the whole> > thing. Aren't you the one I told to puff out your chest and push > and> > shove...> > > > So that didn't seem to work, so let me back up. I really think you > are> > wasting your time and right now, even more important, your energy > and> > spirit with doctors that aren't esophagus experts. Whether your > problem> > is GERD w/ a tight wrap or achalasia, it isn't a common case of > either> > and you are very complicated. Any doctor who isn't absolutely at > the> > top of their field is going to confuse you.> > > > I also gave you my pep talk about how they will want to talk to > you. > > Let me say it again... (but I don't know if you are male or > female) You> > are the king or queen of the prom, everyone wants to dance with > you. > > I'd call, email, and fax summaries of your tests to the top > doctors. > > You don't have time to wait for an appointment. They will put you > off 3> > weeks at least for a new patient.> > > > Then call them back. I guarantee they will call you back, most of > them.> > You do not have to go draggin around to doctor's appointments. I > mean> > really, what can they do looking at you anyway, they really want to > see> > your test results. If you have already sent them your test > summaries> > they can talk to you on the phone.> > > > If you are kind of hesitant to do that, do you have a spouse or > relative> > who will do it for you? I know it takes energy and you are just > sick of> > the whole thing. I'll do it for you if you like...> > > > I'd suggest maybe the highly recommended gi's not just surgeons. I> > adore Dr. Ippoliti at Cedars, and I am pretty sure he would talk to > you> > in depth, he has with me. 310 423 7581. Really good gi's may be > able> > to pinpoint your problem better.> > > > The others can give you names. Actually there are probably only > about 5> > doctors I would call. Any lesser gi's just aren't going to have the> > experience.> > > > Sandy in So Cal...> >>

[Guest guest]

Terry, it the doctors are saying you need a myotomy there is a good chance that the vagus nerve bundle is not working properly. Are they saying that you have Achalasia now? If so then you need to remember that this disease is a progressive one. Getting another dilation my help but it also might hinder the myotomy when you have that done. If you have Achalasia it seem a little odd that you are having acid reflux, plus having a wrap that makes it even more out of the ordinary. I would guess that you might be having problems with leftover food and liquids pooling in your throat. This is all just guessing on my part though and I am just thinking of what might be happening with you. Really think over what the docotors are suggesting. In the end it is your body and you need to do what is best for you.

in SuffolkVisit www.achalasia.us

In a message dated 6/3/2006 8:59:13 PM GMT Standard Time, nrtl888@... writes:

Hi and everyone,Thank you for all the support everyone! I did email some question to Dr. Patti's assistant, and then Dr. Patti called me that same morning. Both he and Dr. Way think I need a myotomy + some kind of fundo (the fundo to control the reflux). I am still contemplating what to do, whether to try a dilatation (which could also cause problems, I know some post-fundo people that were worse off after even a dilation to only 18 mm -- I've had one to 15 mm -- I think there's potential to upset the vagus nerve). I think I will try to get some more opinions from doctors/surgeons. But on the other hand I am scared of my esophagus continuing to dilate (a chest CT I had showed an air-filled dilated proximal esophagus -- some distal too, I don't think it is too bad yet, I don't think any of the barium swallows made any serious remarks about dilation). I'm just miserable all the time because I carry tend to carry all the reflux and other stuff high up probably in that dilated area, and so it easily gets into my throat/mouth/you name it. I always feel it, sort of like I'm trapped in my own esophagus poolings/reflux (has felt that way ever since the fundo).Terry> > >> > > Hi Everyone,> > > > > > I'm the one who has developed achalasia-like symptoms since my> fundo 4 > > > months ago. I just had an appointment with Dr. Patti and he> echoed Dr. > > > Way's recommendation to have a myotomy with partial or 180 fundo. > > > Because my original problem was reflux, I just can't see myself> getting > > > a myotomy, so at this point I am scared to death, confused and don't > > > know what to do. I feel like I have run out of doctors and> surgeons to > > > even ask. I could try getting a dilation, but even that I am not> sure > > > about anymore (I have had one dilation to only 15 mm or so I> believe), > > > since I have heard of fundo patients being worse off after them.> > > > > > Terry> > >> >>

[Guest guest]

Well, it seems you have talk to a very good doctor about what is going on. I will say that if you do have Achalasia that the surgery is the way to go. I have no wrap and I am taking Prilosec once a day. I know that everyone is different so how i have coped with the disease may not be the same as you. I did not have much success with my first surgery. The wrap that I had was what was causing my problems again. Now that I have had my second surgery and the wrap was taken down and not replaced I have been great. Yes, I have to take my pill every morning but I am very happy with the outcome now.

I hope this helps in your decision. If you have any other question please feel free to ask.

in Suffolk

In a message dated 6/3/2006 9:36:53 PM GMT Standard Time, nrtl888@... writes:

Hi ,Based on one manometry I have had post-fundo, the doctors at one medical center are saying I have achalasia. I did not appear to have it before the fundo (of course otherwise I would have never had the fundo or certainly not a full fundo!). But since reflux was my original problem, I am hesitant to go all out for a myotomy. The stuff I get pooling from is both stuff that hasn't made it to my stomach yet, and then later it's stuff from my stomach. It's the stuff from my stomach that hurts the most. Before surgery I would just get the stuff from my stomach. Yes, I need to carefully figure out what to do, since certainly surgery is nothing to take lightly (which I fully realize now after not worrying much before having the fundo). I basically only eat soft foods and liquids now, they all make it to my stomach, just somewhat slowly, or may come up a little and then go down. I do think the achalasia-like problems are being caused by the fundo, I just hope that if/when something is done to help with the problems, my esophagus can adjust again. Terry> > > >> > > > Hi Everyone,> > > > > > > > I'm the one who has developed achalasia-like symptoms since my> > fundo 4 > > > > months ago. I just had an appointment with Dr. Patti and he> > echoed Dr. > > > > Way's recommendation to have a myotomy with partial or 180 > fundo. > > > > Because my original problem was reflux, I just can't see myself> > getting > > > > a myotomy, so at this point I am scared to death, confused and > don't > > > > know what to do. I feel like I have run out of doctors and> > surgeons to > > > > even ask. I could try getting a dilation, but even that I am > not> > sure > > > > about anymore (I have had one dilation to only 15 mm or so I> > believe), > > > > since I have heard of fundo patients being worse off after them.> > > > > > > > Terry> > > >> > >> >> > > > > > > ------------------------

[Guest guest]

Terry, I think I have heard of a surgery that reduces how much acid get into your stomach. I think it might have been along the line of Gastric bypass, but I cannot really recall. There might be a way that you could have the myotomy and also a surgery that would help in lowering the amount of acid that is produced. Just a thought. You might want to ask your doctors about something like that. Yes, you never get rid of the Achalasia but you can get something done to help you eat better.

in Suffolk

In a message dated 6/3/2006 10:03:10 PM GMT Standard Time, nrtl888@... writes:

My swallowing is better sometimes and worse sometimes depending on temperature, whether some events have upset my stomach and tightened the wrap, etc. I notice when my swallowing is better, the reflux is worse (makes sense). So I'm rather afraid I'm in some no-win situation (will never be free of both issues). Even now I am currently on high doses of PPIs and it still does not control the reflux sufficiently (reflux is not acidic and is not voluminous as without the PPIs, but is certainly still there and is painful because of bile I'm guessing).Terry> > > > >> > > > > Hi Everyone,> > > > > > > > > > I'm the one who has developed achalasia-like symptoms since > my> > > fundo 4 > > > > > months ago. I just had an appointment with Dr. Patti and he> > > echoed Dr. > > > > > Way's recommendation to have a myotomy with partial or 180 > > fundo. > > > > > Because my original problem was reflux, I just can't see > myself> > > getting > > > > > a myotomy, so at this point I am scared to death, confused > and > > don't > > > > > know what to do. I feel like I have run out of doctors and> > > surgeons to > > > > > even ask. I could try getting a dilation, but even that I > am > > not> > > sure > > > > > about anymore (I have had one dilation to only 15 mm or so I> > > believe), > > > > > since I have heard of fundo patients being worse off after > them.> > > > > > > > > > Terry> > > > >> > > >> > >> > > > > > > > > > > > > > ------------------------

[Guest guest]

Terry,

I'm so sorry for the frustration you're feeling about this whole

situation! Maybe you can get together more questions to ask Dr. Patti

(i.e. Why can't we just re-do or take the wrap down?, etc.) and see if

he'll talk to you by phone or at another consult appointment to answer

them. Or, if he is unwilling to discuss your concerns further, that

may be the indication to seek out another doctor. Good luck!

in Michigan (just back from Las Vegas and trying to catch up on

this week's posts)

>

> Hi Everyone,

>

> I'm the one who has developed achalasia-like symptoms since my fundo 4

> months ago. I just had an appointment with Dr. Patti and he echoed Dr.

> Way's recommendation to have a myotomy with partial or 180 fundo.

> Because my original problem was reflux, I just can't see myself getting

> a myotomy, so at this point I am scared to death, confused and don't

> know what to do. I feel like I have run out of doctors and surgeons to

> even ask. I could try getting a dilation, but even that I am not sure

> about anymore (I have had one dilation to only 15 mm or so I believe),

> since I have heard of fundo patients being worse off after them.

>

> Terry

>

[Guest guest]

Terry,

I forgot to mention that from personal experience, I do know that

Dr. Patti answers his e mails. He was very prompt in his response to

my e mail, back in January. I try to think of knowledge as power, so

keep asking him (or another doc) questions until you find the best

solution for you. Good luck!

in Michigan

> >

> > Hi Everyone,

> >

> > I'm the one who has developed achalasia-like symptoms since my

fundo 4

> > months ago. I just had an appointment with Dr. Patti and he

echoed Dr.

> > Way's recommendation to have a myotomy with partial or 180 fundo.

> > Because my original problem was reflux, I just can't see myself

getting

> > a myotomy, so at this point I am scared to death, confused and don't

> > know what to do. I feel like I have run out of doctors and

surgeons to

> > even ask. I could try getting a dilation, but even that I am not

sure

> > about anymore (I have had one dilation to only 15 mm or so I

believe),

> > since I have heard of fundo patients being worse off after them.

> >

> > Terry

> >

>

[Guest guest]

Hi and everyone,

Thank you for all the support everyone! I did email some question to

Dr. Patti's assistant, and then Dr. Patti called me that same

morning. Both he and Dr. Way think I need a myotomy + some kind of

fundo (the fundo to control the reflux). I am still contemplating

what to do, whether to try a dilatation (which could also cause

problems, I know some post-fundo people that were worse off after

even a dilation to only 18 mm -- I've had one to 15 mm -- I think

there's potential to upset the vagus nerve). I think I will try to

get some more opinions from doctors/surgeons. But on the other hand

I am scared of my esophagus continuing to dilate (a chest CT I had

showed an air-filled dilated proximal esophagus -- some distal too, I

don't think it is too bad yet, I don't think any of the barium

swallows made any serious remarks about dilation). I'm just

miserable all the time because I carry tend to carry all the reflux

and other stuff high up probably in that dilated area, and so it

easily gets into my throat/mouth/you name it. I always feel it, sort

of like I'm trapped in my own esophagus poolings/reflux (has felt

that way ever since the fundo).

Terry

> > >

> > > Hi Everyone,

> > >

> > > I'm the one who has developed achalasia-like symptoms since my

> fundo 4

> > > months ago. I just had an appointment with Dr. Patti and he

> echoed Dr.

> > > Way's recommendation to have a myotomy with partial or 180

fundo.

> > > Because my original problem was reflux, I just can't see myself

> getting

> > > a myotomy, so at this point I am scared to death, confused and

don't

> > > know what to do. I feel like I have run out of doctors and

> surgeons to

> > > even ask. I could try getting a dilation, but even that I am

not

> sure

> > > about anymore (I have had one dilation to only 15 mm or so I

> believe),

> > > since I have heard of fundo patients being worse off after them.

> > >

> > > Terry

> > >

> >

>

[Guest guest]

Hi ,

Based on one manometry I have had post-fundo, the doctors at one

medical center are saying I have achalasia. I did not appear to have

it before the fundo (of course otherwise I would have never had the

fundo or certainly not a full fundo!). But since reflux was my

original problem, I am hesitant to go all out for a myotomy. The

stuff I get pooling from is both stuff that hasn't made it to my

stomach yet, and then later it's stuff from my stomach. It's the

stuff from my stomach that hurts the most. Before surgery I would

just get the stuff from my stomach. Yes, I need to carefully figure

out what to do, since certainly surgery is nothing to take lightly

(which I fully realize now after not worrying much before having the

fundo). I basically only eat soft foods and liquids now, they all

make it to my stomach, just somewhat slowly, or may come up a little

and then go down. I do think the achalasia-like problems are being

caused by the fundo, I just hope that if/when something is done to

help with the problems, my esophagus can adjust again.

Terry

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm the one who has developed achalasia-like symptoms since

my

> > fundo 4

> > > > months ago. I just had an appointment with Dr. Patti and he

> > echoed Dr.

> > > > Way's recommendation to have a myotomy with partial or 180

> fundo.

> > > > Because my original problem was reflux, I just can't see

myself

> > getting

> > > > a myotomy, so at this point I am scared to death, confused

and

> don't

> > > > know what to do. I feel like I have run out of doctors and

> > surgeons to

> > > > even ask. I could try getting a dilation, but even that I

am

> not

> > sure

> > > > about anymore (I have had one dilation to only 15 mm or so I

> > believe),

> > > > since I have heard of fundo patients being worse off after

them.

> > > >

> > > > Terry

> > > >

> > >

> >

>

>

>

>

>

>

> ------------------------

[Guest guest]

My swallowing is better sometimes and worse sometimes depending on

temperature, whether some events have upset my stomach and tightened

the wrap, etc. I notice when my swallowing is better, the reflux is

worse (makes sense). So I'm rather afraid I'm in some no-win

situation (will never be free of both issues). Even now I am

currently on high doses of PPIs and it still does not control the

reflux sufficiently (reflux is not acidic and is not voluminous as

without the PPIs, but is certainly still there and is painful because

of bile I'm guessing).

Terry

> > > > >

> > > > > Hi Everyone,

> > > > >

> > > > > I'm the one who has developed achalasia-like symptoms

since

> my

> > > fundo 4

> > > > > months ago. I just had an appointment with Dr. Patti

and he

> > > echoed Dr.

> > > > > Way's recommendation to have a myotomy with partial or

180

> > fundo.

> > > > > Because my original problem was reflux, I just can't see

> myself

> > > getting

> > > > > a myotomy, so at this point I am scared to death,

confused

> and

> > don't

> > > > > know what to do. I feel like I have run out of doctors

and

> > > surgeons to

> > > > > even ask. I could try getting a dilation, but even that

I

> am

> > not

> > > sure

> > > > > about anymore (I have had one dilation to only 15 mm or

so I

> > > believe),

> > > > > since I have heard of fundo patients being worse off

after

> them.

> > > > >

> > > > > Terry

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > ------------------------