Re: Myotomy after Fundoplication?? (Terry)

[Guest guest]

Hi Terry,

I had the Heller Myotomy and my wife had your surgery, the Nissen Funodplication. We make a pretty good team to cover most problems of GERD & Achalasia.

She had an acid reflux breather for a while after her surgery, but the wrap was made on the tight side so she had symptoms of achalasia, the feeling of food sitting and getting stuck.

After a time, she began to get the same 24/7 reflux that she had prior to her surgery (some surgeon, some surgery), and yet further tests showed that the wrap was intact. She went back on the PPI's that had all failed her at some point, and she got relief from Prevacid. 5 years post surgery she is still dependent on the Prevacid, but at least it works. Food still gets stuck on occasion.

I have heard somewhere of a mytomy following a fundo, but it seems to me that your symptoms might be more a function of the tightness of your wrap rather than achalasia.

I'm very disappointed that manometry tests have been inconclusive. I'd almost guess that it was the skills of the persons doing the testing that might have led to inconclusive results. Not being a fan of manometries, I would almost have to say you need a third one. Other tests might give you a false positive on achalasia because of your having the Nissen.

You came here for help. My suggestion would be to get back on the PPI's for now, have an endoscopy to determine the tightness of the wrap, and hold off on the third manometry for the time being. Sometimes it can take months for the body to adjust to the Nissen operation.

Let's see what kind of results you get and then check back with us. I know what you're going through, and I can only offer the above suggestion and hope that you can be patient. I agree with you not to have a myotomy at this time, until you have better evidence.

In a message dated 5/26/2006 8:06:01 A.M. Eastern Daylight Time, brendacoyle@... writes:

Terry, Welcome to the group! I'm so sorry to hear you're having so manyproblems! Did the tests show achalasia before they did thefundoplication? Where do you live and where are you going fortreatment? I'm certainly not the expert of the group, but I wouldthink they could take down the wrap to do a myotomy. It sounds likeyou need to get a better diagnosis, first, though. Since achalasia isa rare disease, not all doctors and/or medical centers see a lot ofcases of it. If you are not working with doctors that are experiencedwith this disease, I would recommend getting your test results andgoing to see someone who is. If you tell us where you live, someonefrom the group can probably recommend a doctor to see. I don't have achalasia myself, but my husband has had adifferent esophagus motility disorder (called Diffuse Esophageal Spasmor DES) for over 3 years. On recent tests at the Cleveland Clinic(highly regarded for their work with achalasia patients), a bariumswallow showed achalasia, even though he had been previously diagnosedwith DES. Since DES can be hard to distinguish from achalasia, theyhad to do a high-resolution manometry to confirm the diagnosis. Manyothers here have had a hard time getting their achalasia properlydiagnosed, too. That's why I've learned that you need a qualifiedmotility lab to make the call. I wish you all the best! You are certainly not alone in yoursymptoms! Please keep us posted on how things are going! in Michigan>> Hi Everyone,> > I'm new here. I had a Nissen Fundoplication (full wrap) at the end of > January of this year. Since then I have had continued problems with > swallowing. I also have been getting reflux, both from things that > haven't made it out of my esophagus to my stomach yet, and stuff from > my stomach. One of the manometry tests I have had since the surgery > indicates I have achalasia (another one showed I have some disorder, > but not enough to diagnose achalasia). Numerous barium swallows have > showed delayed emptying of the esophagus and tendency to pool the > contents high in the esophagus (I have 24 hour a day symptoms of > regurgitation, reflux in throat/nose/airway/etc.). The reflux symptoms > have completely ruined my quality of life, I am not able to function > properly at all anymore. I am at the end of my rope.> > One surgeon has recommeded I get a myotomy, based on the achalasia > diagnosis. Has anyone heard of ever having a myotomy AFTER a > fundoplication? At this point, I am not even considering this option. > I would perhaps consider a take-down of the fundoplication, but not a > myotomy. I have had one small dilation that did not seem to do much at > all.> > Thanks for any help,> Terry>

[Guest guest]

Hi ,

Your wife's situation sounds very much like mine. I am getting that

24/7 reflux (which I had before the fundo too, but in a slightly

different way). I know some of it is from food that hasn't made it

down, but I also know some of it is from stomach stuff. I am back on

Nexium BID. It helps, but does not stop the reflux from the

stomach. No meds have ever been able to stop it. As with your wife,

tests show the wrap is intact. Are your wife's symptoms that she

brings refluxed material high up into her mouth/etc. 24/7? (this is

what is is for me, with problems of pooling on my airway and creeping

of reflux into my nose/ears/throat all the time too)

Like you, I believe my symptoms are from the tightness of the wrap.

I am concerned that it may evolve into a permanent motility disorder

if I don't do sometingnsoonish though. I had a CT of my chest

recently that showed a dilated proximal and distal esophagus.

I have also had a couple EGDs since the surgery, and the doctor who

performed them made vague comments about the tightness of the

LES/wrap area (first one said it was quite snug, second one said the

scope passed easily). I have even been dilated once (didn't feel

much difference at all).

I would really like someone knowledgeable about fundos to evaluate

the fundo with EGD, but am unable to find such a person in my area.

I find travelling in any way difficult with my symptoms, but I may

have to do so.

Terry

> >

> > Hi Everyone,

> >

> > I'm new here. I had a Nissen Fundoplication (full wrap) at the

end of

> > January of this year. Since then I have had continued problems

with

> > swallowing. I also have been getting reflux, both from things

that

> > haven't made it out of my esophagus to my stomach yet, and stuff

from

> > my stomach. One of the manometry tests I have had since the

surgery

> > indicates I have achalasia (another one showed I have some

disorder,

> > but not enough to diagnose achalasia). Numerous barium swallows

have

> > showed delayed emptying of the esophagus and tendency to pool

the

> > contents high in the esophagus (I have 24 hour a day symptoms of

> > regurgitation, reflux in throat/nose/airway/etc.). The reflux

symptoms

> > have completely ruined my quality of life, I am not able to

function

> > properly at all anymore. I am at the end of my rope.

> >

> > One surgeon has recommeded I get a myotomy, based on the

achalasia

> > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > fundoplication? At this point, I am not even considering this

option.

> > I would perhaps consider a take-down of the fundoplication, but

not a

> > myotomy. I have had one small dilation that did not seem to do

much at

> > all.

> >

> > Thanks for any help,

> > Terry

> >

>

>

>

>

>

>

>

>

[Guest guest]

Hi Terry,

You sure have brought out the "reserves" with your questions today. Long weekend, good thing you asked today. In response to the one question you asked me:

Are your wife's symptoms that she brings refluxed material high up into her mouth/etc. 24/7?

Terry, sometimes that might happen where the acid seems to settle in that area and it affects her speech. She will talk with what sounds like a hoarse voice. The reflux (which I have had on rare occasions), can make her esophagus, throat, or mouth feel like its on fire, with a terribly bitter taste. Drinking fluids to get it down does not seem to help. Strangely, eating will sometimes help the reflux, but after eating, it will raise its ugly head.

If you haven't done so already, you might want to check out the GERD message board on , similar to this one. I keep tabs on that for my wife. They often come up with home grown suggestions as how to better deal with GERD symptoms.

Have a nice weekend!

In a message dated 5/26/2006 10:45:00 A.M. Eastern Daylight Time, nrtl888@... writes:

Your wife's situation sounds very much like mine. I am getting that 24/7 reflux which I had before the fundo too, but in a slightly different way). I know some of it is from food that hasn't made it down, but I also know some of it is from stomach stuff. I am back on Nexium BID. It helps, but does not stop the reflux from the stomach. No meds have ever been able to stop it. As with your wife, tests show the wrap is intact. Are your wife's symptoms that she brings refluxed material high up into her mouth/etc. 24/7? (this is what is is for me, with problems of pooling on my airway and creeping of reflux into my nose/ears/throat all the time too)Like you, I believe my symptoms are from the tightness of the wrap. I am concerned that it may evolve into a permanent motility disorder if I don't do sometingnsoonish though. I had a CT of my chest recently that showed a dilated proximal and distal esophagus.I have also had a couple EGDs since the surgery, and the doctor who performed them made vague comments about the tightness of the LES/wrap area (first one said it was quite snug, second one said the scope passed easily). I have even been dilated once (didn't feel much difference at all).I would really like someone knowledgeable about fundos to evaluate the fundo with EGD, but am unable to find such a person in my area. I find travelling in any way difficult with my symptoms, but I may have to do so.Terry> >> > Hi Everyone,> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at the end of > > January of this year. Since then I have had continued problems with > > swallowing. I also have been getting reflux, both from things that > > haven't made it out of my esophagus to my stomach yet, and stuff from > > my stomach. One of the manometry tests I have had since the surgery > > indicates I have achalasia (another one showed I have some disorder, > > but not enough to diagnose achalasia). Numerous barium swallows have > > showed delayed emptying of the esophagus and tendency to pool the > > contents high in the esophagus (I have 24 hour a day symptoms of > > regurgitation, reflux in throat/nose/airway/etc.). The reflux symptoms > > have completely ruined my quality of life, I am not able to function > > properly at all anymore. I am at the end of my rope.> > > > One surgeon has recommeded I get a myotomy, based on the achalasia > > diagnosis. Has anyone heard of ever having a myotomy AFTER a > > fundoplication? At this point, I am not even considering this option. > > I would perhaps consider a take-down of the fundoplication, but not a > > myotomy. I have had one small dilation that did not seem to do much at > > all.> > > > Thanks for any help,> > Terry> >> > > > > > > >

[Guest guest]

Terry

In reference to your comment:

Do you think I should also consult Dr. Patti there too (don't know if it's politically correct to switch to a different surgeon?).

Politically correct? Terry, it is your body and your health.

I have changed doctors within the same group, gotten 2nd

opinions from other doctors with the blessing of the present

one. (not that I needed his blessing). As a matter of fact

if the first doctor objects you should run not walk away.

I wouldn't hesitate to do what was necessary to get the

best of care.

Go for it!

Maggie

Alabama

[Guest guest]

Terry,

I realize it can be frustrating trying to get a concrete

diagnosis. My suggestion would be to see a specialist before going

through a third manometry test. Dr. Patti at UCSF is considered on

of the experts on achalasia. I believe he also lists acid reflux as

a specialty. Some of use here have been to him (he is doing my

surgery in Aug.).

I had two manometries done at Stanford but since I haven't had

such tests done anywhere else it would be hard for me to compare

Stanford to UCSF or other places nearby for testing. My guess is

that UCSF would be as good or better than Stanford for manometry

tests (but I don't really know).

Vicki from Palo Alto, CA

> > >

> > > Hi Everyone,

> > >

> > > I'm new here. I had a Nissen Fundoplication (full wrap) at the

> end of

> > > January of this year. Since then I have had continued problems

> with

> > > swallowing. I also have been getting reflux, both from things

> that

> > > haven't made it out of my esophagus to my stomach yet, and

stuff

> from

> > > my stomach. One of the manometry tests I have had since the

> surgery

> > > indicates I have achalasia (another one showed I have some

> disorder,

> > > but not enough to diagnose achalasia). Numerous barium

swallows

> have

> > > showed delayed emptying of the esophagus and tendency to pool

> the

> > > contents high in the esophagus (I have 24 hour a day symptoms

of

> > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> symptoms

> > > have completely ruined my quality of life, I am not able to

> function

> > > properly at all anymore. I am at the end of my rope.

> > >

> > > One surgeon has recommeded I get a myotomy, based on the

> achalasia

> > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > fundoplication? At this point, I am not even considering this

> option.

> > > I would perhaps consider a take-down of the fundoplication,

but

> not a

> > > myotomy. I have had one small dilation that did not seem to do

> much at

> > > all.

> > >

> > > Thanks for any help,

> > > Terry

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I forgot to add that I also saw Dr. Morton, a surgeon at Stanford.

I was impressed with him but I don't think he has the same level of

experience as Dr. Patti. But if your insurance covers it, you may

want to see him as well.

Vicki

> > >

> > > Hi Everyone,

> > >

> > > I'm new here. I had a Nissen Fundoplication (full wrap) at the

> end of

> > > January of this year. Since then I have had continued problems

> with

> > > swallowing. I also have been getting reflux, both from things

> that

> > > haven't made it out of my esophagus to my stomach yet, and

stuff

> from

> > > my stomach. One of the manometry tests I have had since the

> surgery

> > > indicates I have achalasia (another one showed I have some

> disorder,

> > > but not enough to diagnose achalasia). Numerous barium

swallows

> have

> > > showed delayed emptying of the esophagus and tendency to pool

> the

> > > contents high in the esophagus (I have 24 hour a day symptoms

of

> > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> symptoms

> > > have completely ruined my quality of life, I am not able to

> function

> > > properly at all anymore. I am at the end of my rope.

> > >

> > > One surgeon has recommeded I get a myotomy, based on the

> achalasia

> > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > fundoplication? At this point, I am not even considering this

> option.

> > > I would perhaps consider a take-down of the fundoplication,

but

> not a

> > > myotomy. I have had one small dilation that did not seem to do

> much at

> > > all.

> > >

> > > Thanks for any help,

> > > Terry

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Carolyn,

Yes, I had a fundo because of severe GERD. It progressed from

just " heartburn " to 24 hour a day regurgitation (this happened after

starting PPIs). I'm wondering now if PPIs somehow creating some

esophagael dismotility. I always felt that after I started PPIs my

swallowing felt strange. I am in the San Francisco Bay Area. I

think most of the doctors I have seen so far just are taking and wait

and see approach. But I fear my motility problem is just getting

worse, not better. I would love a recommendation for a good GI in

the area, since surgeons usually seem to be just looking for what

surgery they should do (makes sense of course).

Terry

> > >

> > > Hi Everyone,

> > >

> > > I'm new here. I had a Nissen Fundoplication (full wrap) at the

> end of

> > > January of this year. Since then I have had continued problems

> with

> > > swallowing. I also have been getting reflux, both from things

> that

> > > haven't made it out of my esophagus to my stomach yet, and

stuff

> from

> > > my stomach. One of the manometry tests I have had since the

> surgery

> > > indicates I have achalasia (another one showed I have some

> disorder,

> > > but not enough to diagnose achalasia). Numerous barium swallows

> have

> > > showed delayed emptying of the esophagus and tendency to pool

> the

> > > contents high in the esophagus (I have 24 hour a day symptoms

of

> > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> symptoms

> > > have completely ruined my quality of life, I am not able to

> function

> > > properly at all anymore. I am at the end of my rope.

> > >

> > > One surgeon has recommeded I get a myotomy, based on the

> achalasia

> > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > fundoplication? At this point, I am not even considering this

> option.

> > > I would perhaps consider a take-down of the fundoplication, but

> not a

> > > myotomy. I have had one small dilation that did not seem to do

> much at

> > > all.

> > >

> > > Thanks for any help,

> > > Terry

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Vicki,

I actually saw Dr. Way at UCSF (I got my latest manometry and barium

swallow at UCSF). Do you think I should also consult Dr. Patti there

too (don't know if it's politically correct to switch to a different

surgeon?).

Terry

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

the

> > end of

> > > > January of this year. Since then I have had continued

problems

> > with

> > > > swallowing. I also have been getting reflux, both from things

> > that

> > > > haven't made it out of my esophagus to my stomach yet, and

> stuff

> > from

> > > > my stomach. One of the manometry tests I have had since the

> > surgery

> > > > indicates I have achalasia (another one showed I have some

> > disorder,

> > > > but not enough to diagnose achalasia). Numerous barium

> swallows

> > have

> > > > showed delayed emptying of the esophagus and tendency to pool

> > the

> > > > contents high in the esophagus (I have 24 hour a day symptoms

> of

> > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> > symptoms

> > > > have completely ruined my quality of life, I am not able to

> > function

> > > > properly at all anymore. I am at the end of my rope.

> > > >

> > > > One surgeon has recommeded I get a myotomy, based on the

> > achalasia

> > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > > fundoplication? At this point, I am not even considering this

> > option.

> > > > I would perhaps consider a take-down of the fundoplication,

> but

> > not a

> > > > myotomy. I have had one small dilation that did not seem to

do

> > much at

> > > > all.

> > > >

> > > > Thanks for any help,

> > > > Terry

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Terry,

Me again. As far as GI doctors go, I have seen Dr. Lowe and Dr.

Gerson at Stanford. I would recommend avoiding Dr. Lowe (who

thought I just had a stress problem). Dr. Gerson is better but

doesn't seem to know as much about achalasia as I would like. So, I

would recommend trying someone at UCSF (I think people here could

give you recommendations).

I'd still suggest seeing a surgeon. Dr. Patti knows such much

about achalasia he might be able to give you a more accurate

diagnosis (whether or not you take his advice on surgery

recommendations).

Good luck.

Vicki

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

the

> > end of

> > > > January of this year. Since then I have had continued

problems

> > with

> > > > swallowing. I also have been getting reflux, both from

things

> > that

> > > > haven't made it out of my esophagus to my stomach yet, and

> stuff

> > from

> > > > my stomach. One of the manometry tests I have had since the

> > surgery

> > > > indicates I have achalasia (another one showed I have some

> > disorder,

> > > > but not enough to diagnose achalasia). Numerous barium

swallows

> > have

> > > > showed delayed emptying of the esophagus and tendency to

pool

> > the

> > > > contents high in the esophagus (I have 24 hour a day

symptoms

> of

> > > > regurgitation, reflux in throat/nose/airway/etc.). The

reflux

> > symptoms

> > > > have completely ruined my quality of life, I am not able to

> > function

> > > > properly at all anymore. I am at the end of my rope.

> > > >

> > > > One surgeon has recommeded I get a myotomy, based on the

> > achalasia

> > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > > fundoplication? At this point, I am not even considering

this

> > option.

> > > > I would perhaps consider a take-down of the fundoplication,

but

> > not a

> > > > myotomy. I have had one small dilation that did not seem to

do

> > much at

> > > > all.

> > > >

> > > > Thanks for any help,

> > > > Terry

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Terry,

That is the first time I've ever heard anyone else say that they feel that the PPI's led to their swallowing issues. I never had any swallowing issues until I started on the PPI's. When I mentioned this, however, the doctors all told me that it was just a coincidence in the timing of the disease.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of nrtl888Sent: Friday, May 26, 2006 2:24 PMachalasia Subject: Re: Myotomy after Fundoplication?? (Terry)

Hi Carolyn,Yes, I had a fundo because of severe GERD. It progressed from just "heartburn" to 24 hour a day regurgitation (this happened after starting PPIs). I'm wondering now if PPIs somehow creating some esophagael dismotility. I always felt that after I started PPIs my swallowing felt strange. I am in the San Francisco Bay Area. I think most of the doctors I have seen so far just are taking and wait and see approach. But I fear my motility problem is just getting worse, not better. I would love a recommendation for a good GI in the area, since surgeons usually seem to be just looking for what surgery they should do (makes sense of course).Terry> > >> > > Hi Everyone,> > > > > > I'm new here. I had a Nissen Fundoplication (full wrap) at the > end of > > > January of this year. Since then I have had continued problems > with > > > swallowing. I also have been getting reflux, both from things > that > > > haven't made it out of my esophagus to my stomach yet, and stuff > from > > > my stomach. One of the manometry tests I have had since the > surgery > > > indicates I have achalasia (another one showed I have some > disorder, > > > but not enough to diagnose achalasia). Numerous barium swallows > have > > > showed delayed emptying of the esophagus and tendency to pool > the > > > contents high in the esophagus (I have 24 hour a day symptoms of > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux > symptoms > > > have completely ruined my quality of life, I am not able to > function > > > properly at all anymore. I am at the end of my rope.> > > > > > One surgeon has recommeded I get a myotomy, based on the > achalasia > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a > > > fundoplication? At this point, I am not even considering this > option. > > > I would perhaps consider a take-down of the fundoplication, but > not a > > > myotomy. I have had one small dilation that did not seem to do > much at > > > all.> > > > > > Thanks for any help,> > > Terry> > >> > > > > > > > > > > > > > > >

[Guest guest]

,

Same here, the doctors just say " huh " . Same as when I tell them I

feel that PPIs cut down on ALL stomach fluids, not just acids (I feel

like it cuts down even bile and mucous to some extent). They dry me

out so much (dry mouth, throat, receded gums, joints), but

unfortunately they help with the reflux. I would love to get off

PPIs and at least step down to H2 blockers, but the H2 blockers just

aren't strong enough. I think PPIs mess with a lot of things doctors

aren't so sure about. Get us hooked forever on them...

Do most achalasians also need to take PPIs? Seems nonintuitive at

first, but I guess what reflux there is (supposedly every refluxes)

gets stuck above the esophagus instead of clearing.

Terry

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

the

> > end of

> > > > January of this year. Since then I have had continued

problems

> > with

> > > > swallowing. I also have been getting reflux, both from things

> > that

> > > > haven't made it out of my esophagus to my stomach yet, and

> stuff

> > from

> > > > my stomach. One of the manometry tests I have had since the

> > surgery

> > > > indicates I have achalasia (another one showed I have some

> > disorder,

> > > > but not enough to diagnose achalasia). Numerous barium

swallows

> > have

> > > > showed delayed emptying of the esophagus and tendency to pool

> > the

> > > > contents high in the esophagus (I have 24 hour a day symptoms

> of

> > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> > symptoms

> > > > have completely ruined my quality of life, I am not able to

> > function

> > > > properly at all anymore. I am at the end of my rope.

> > > >

> > > > One surgeon has recommeded I get a myotomy, based on the

> > achalasia

> > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > > fundoplication? At this point, I am not even considering this

> > option.

> > > > I would perhaps consider a take-down of the fundoplication,

but

> > not a

> > > > myotomy. I have had one small dilation that did not seem to

do

> > much at

> > > > all.

> > > >

> > > > Thanks for any help,

> > > > Terry

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Terry,

My family doctor started me on them, thinking it was reflux. My gastroenterologist increased the dose. It wasn't until I consulted with the surgeon that I was told I was wasting my money on them because, at least according to him (Dr. Rice at the Cleveland Clinic), my problem was not acid getting back into the esophagus, but food getting out of it. I stopped taking them a couple of weeks ago.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of nrtl888Sent: Friday, May 26, 2006 2:57 PMachalasia Subject: Re: Myotomy after Fundoplication?? (Terry)

,Same here, the doctors just say "huh". Same as when I tell them I feel that PPIs cut down on ALL stomach fluids, not just acids (I feel like it cuts down even bile and mucous to some extent). They dry me out so much (dry mouth, throat, receded gums, joints), but unfortunately they help with the reflux. I would love to get off PPIs and at least step down to H2 blockers, but the H2 blockers just aren't strong enough. I think PPIs mess with a lot of things doctors aren't so sure about. Get us hooked forever on them...Do most achalasians also need to take PPIs? Seems nonintuitive at first, but I guess what reflux there is (supposedly every refluxes) gets stuck above the esophagus instead of clearing.Terry> > > >> > > > Hi Everyone,> > > > > > > > I'm new here. I had a Nissen Fundoplication (full wrap) at the > > end of > > > > January of this year. Since then I have had continued problems > > with > > > > swallowing. I also have been getting reflux, both from things > > that > > > > haven't made it out of my esophagus to my stomach yet, and > stuff > > from > > > > my stomach. One of the manometry tests I have had since the > > surgery > > > > indicates I have achalasia (another one showed I have some > > disorder, > > > > but not enough to diagnose achalasia). Numerous barium swallows > > have > > > > showed delayed emptying of the esophagus and tendency to pool > > the > > > > contents high in the esophagus (I have 24 hour a day symptoms > of > > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux > > symptoms > > > > have completely ruined my quality of life, I am not able to > > function > > > > properly at all anymore. I am at the end of my rope.> > > > > > > > One surgeon has recommeded I get a myotomy, based on the > > achalasia > > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a > > > > fundoplication? At this point, I am not even considering this > > option. > > > > I would perhaps consider a take-down of the fundoplication, but > > not a > > > > myotomy. I have had one small dilation that did not seem to do > > much at > > > > all.> > > > > > > > Thanks for any help,> > > > Terry> > > >> > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Hi Vicki, Thanks for the all the information. Funny you should mention Dr. Lowe. I saw him at my first appointment there. He told me he was conservative and I think he probably thought I shouldn't have had a fundo (maybe he was right). In any case, he saw I was going through tests at CPMC and basically said there wasn't much more he could do. It is has been implied by more than one doctor that my problems are all in my head too (had enough of being thrown anti-anxiety or depression drugs -- would be great if not for all the side effects). TerryVicki <vickismiles@...> wrote: Terry, Me again. As far as GI doctors go, I have seen Dr. Lowe and Dr. Gerson at Stanford. I would recommend avoiding Dr. Lowe (who

thought I just had a stress problem). Dr. Gerson is better but doesn't seem to know as much about achalasia as I would like. So, I would recommend trying someone at UCSF (I think people here could give you recommendations). I'd still suggest seeing a surgeon. Dr. Patti knows such much about achalasia he might be able to give you a more accurate diagnosis (whether or not you take his advice on surgery recommendations). Good luck.Vicki> > > >> > > > Hi Everyone,> > > > > > > > I'm new here. I had a

Nissen Fundoplication (full wrap) at the > > end of > > > > January of this year. Since then I have had continued problems > > with > > > > swallowing. I also have been getting reflux, both from things > > that > > > > haven't made it out of my esophagus to my stomach yet, and > stuff > > from > > > > my stomach. One of the manometry tests I have had since the > > surgery > > > > indicates I have achalasia (another one showed I have some > > disorder, > > > > but not enough to diagnose achalasia). Numerous barium swallows > > have > > > > showed delayed emptying of the esophagus and tendency to pool > > the > > > > contents high in the esophagus (I have 24 hour a day symptoms > of > > > > regurgitation, reflux in

throat/nose/airway/etc.). The reflux > > symptoms > > > > have completely ruined my quality of life, I am not able to > > function > > > > properly at all anymore. I am at the end of my rope.> > > > > > > > One surgeon has recommeded I get a myotomy, based on the > > achalasia > > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a > > > > fundoplication? At this point, I am not even considering this > > option. > > > > I would perhaps consider a take-down of the fundoplication, but > > not a > > > > myotomy. I have had one small dilation that did not seem to do > > much at > > > > all.> > > > > > > > Thanks for any help,> > > > Terry> > > >> > > > > >

> > > > > > > > > > > > > > > > > >

[Guest guest]

Hi ,

Yes, I know that bitter burn your wife sometimes feels in the

throat/mouth/etc. I think it's bile. Salty/bitter taste. It burns,

but I guess not as bad as acid. That's the kind of burn I get a lot

now being on high PPIs. And yes, if I eat, it relieves it most of

the time (pushes it back down I guess), but water does not (just sort

of dilutes it and pushes up more stuff)! At other times I

get " stomachy " tasting stuff refluxing, but it doesn't burn as much.

Thanks for the tip about the GERD board. I frequent the

HeartburnHelp boards, but have not checked out the GERD board

yet.

Terry

> > >

> > > Hi Everyone,

> > >

> > > I'm new here. I had a Nissen Fundoplication (full wrap) at

the

> end of

> > > January of this year. Since then I have had continued

problems

> with

> > > swallowing. I also have been getting reflux, both from

things

> that

> > > haven't made it out of my esophagus to my stomach yet, and

stuff

> from

> > > my stomach. One of the manometry tests I have had since the

> surgery

> > > indicates I have achalasia (another one showed I have some

> disorder,

> > > but not enough to diagnose achalasia). Numerous barium

swallows

> have

> > > showed delayed emptying of the esophagus and tendency to pool

> the

> > > contents high in the esophagus (I have 24 hour a day symptoms

of

> > > regurgitation, reflux in throat/nose/airway/etc.). The

reflux

> symptoms

> > > have completely ruined my quality of life, I am not able to

> function

> > > properly at all anymore. I am at the end of my rope.

> > >

> > > One surgeon has recommeded I get a myotomy, based on the

> achalasia

> > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > fundoplication? At this point, I am not even considering

this

> option.

> > > I would perhaps consider a take-down of the fundoplication,

but

> not a

> > > myotomy. I have had one small dilation that did not seem to

do

> much at

> > > all.

> > >

> > > Thanks for any help,

> > > Terry

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Terry,

Just wanted to second everyone's suggestion that you don't worry

about being politically incorrect. I do understand your concern but

your health is more important. You also seem to have a more

complicated case in terms of being able to diagnose you with a too

tight fundoplication or achalasia.

I switched from Dr. Lowe to Dr. Gerson at Stanford even though

they initially told me they don't allow patients to switch. And I

am SO glad I did.

Also, when I saw Dr. Patti I asked him who he'd recommend for a

second opinion. He took it very well (which I think all doctors

should). He mentioned Dr. Way, Dr. Hunter at Portland, and Dr.

Pellegrini at Seattle. So, I think UCSF is used to patients seeing

both Way and Patti.

At this point, try not to worry about being a " problematic "

patient. Unforntunately, you have to be assertive and pro-active to

get diagnosed (at least in my experience).

For at least two years, the doctors incorrectly thought I had

reflux instead of achalasia. Dr. Gerson mentioned a significant

percentage of people with a swallowing disorder (like achalasia)

also have reflux. However, as you said, you might just have reflux

and a too tight fundoplication.

I've read that PPI's don't help with irritation with food stuck in

the esophagus, they just decrease acid production in the stomach so

less acid goes from your stomach to your esophagus.

I think it is important that you are diagnosed correctly so you

don't end up having a myotomy for achalasia that you actually don't

have since a myotomy can increase acid reflux.

Vicki

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

> the

> > end of

> > > > January of this year. Since then I have had continued

> problems

> > with

> > > > swallowing. I also have been getting reflux, both from

> things

> > that

> > > > haven't made it out of my esophagus to my stomach yet, and

> stuff

> > from

> > > > my stomach. One of the manometry tests I have had since

the

> > surgery

> > > > indicates I have achalasia (another one showed I have some

> > disorder,

> > > > but not enough to diagnose achalasia). Numerous barium

> swallows

> > have

> > > > showed delayed emptying of the esophagus and tendency to

pool

> > the

> > > > contents high in the esophagus (I have 24 hour a day

symptoms

> of

> > > > regurgitation, reflux in throat/nose/airway/etc.). The

> reflux

> > symptoms

> > > > have completely ruined my quality of life, I am not able

to

> > function

> > > > properly at all anymore. I am at the end of my rope.

> > > >

> > > > One surgeon has recommeded I get a myotomy, based on the

> > achalasia

> > > > diagnosis. Has anyone heard of ever having a myotomy

AFTER a

> > > > fundoplication? At this point, I am not even considering

> this

> > option.

> > > > I would perhaps consider a take-down of the

fundoplication,

> but

> > not a

> > > > myotomy. I have had one small dilation that did not seem

to

> do

> > much at

> > > > all.

> > > >

> > > > Thanks for any help,

> > > > Terry

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Vicki,

Believe it or not I have an appointment with Dr. Patti on Tuesday

morning. Amazing. Thanks for everyone's help!

I initially wanted to see someone else at Stanford, but took the next

available which ended up being Dr. Lowe. After all the hoops you

have to jump through to get an initial appointment (must have all the

records there BEFORE you can make an appoitment, etc.), I guess I was

just overjoyed at being able to have an appointment.

Having both reflux and achalasia is a double whammy, then the reflux

that does come up gets stuck and can oscillate up and down for a long

time. Sigh.

I think PPIs decrease so many fluids in my body. Certainly decreases

saliva and maybe whatever the esophagus and throat might secrete, so

that might help in what ends up pooling in the esophagus.

Terry

> > > > >

> > > > > Hi Everyone,

> > > > >

> > > > > I'm new here. I had a Nissen Fundoplication (full wrap)

at

> > the

> > > end of

> > > > > January of this year. Since then I have had continued

> > problems

> > > with

> > > > > swallowing. I also have been getting reflux, both from

> > things

> > > that

> > > > > haven't made it out of my esophagus to my stomach yet,

and

> > stuff

> > > from

> > > > > my stomach. One of the manometry tests I have had since

> the

> > > surgery

> > > > > indicates I have achalasia (another one showed I have

some

> > > disorder,

> > > > > but not enough to diagnose achalasia). Numerous barium

> > swallows

> > > have

> > > > > showed delayed emptying of the esophagus and tendency to

> pool

> > > the

> > > > > contents high in the esophagus (I have 24 hour a day

> symptoms

> > of

> > > > > regurgitation, reflux in throat/nose/airway/etc.). The

> > reflux

> > > symptoms

> > > > > have completely ruined my quality of life, I am not able

> to

> > > function

> > > > > properly at all anymore. I am at the end of my rope.

> > > > >

> > > > > One surgeon has recommeded I get a myotomy, based on the

> > > achalasia

> > > > > diagnosis. Has anyone heard of ever having a myotomy

> AFTER a

> > > > > fundoplication? At this point, I am not even considering

> > this

> > > option.

> > > > > I would perhaps consider a take-down of the

> fundoplication,

> > but

> > > not a

> > > > > myotomy. I have had one small dilation that did not seem

> to

> > do

> > > much at

> > > > > all.

> > > > >

> > > > > Thanks for any help,

> > > > > Terry

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Dr. Ostroff, UCSF

> > > >

> > > > Hi Everyone,

> > > >

> > > > I'm new here. I had a Nissen Fundoplication (full wrap) at the

> > end of

> > > > January of this year. Since then I have had continued problems

> > with

> > > > swallowing. I also have been getting reflux, both from things

> > that

> > > > haven't made it out of my esophagus to my stomach yet, and

> stuff

> > from

> > > > my stomach. One of the manometry tests I have had since the

> > surgery

> > > > indicates I have achalasia (another one showed I have some

> > disorder,

> > > > but not enough to diagnose achalasia). Numerous barium swallows

> > have

> > > > showed delayed emptying of the esophagus and tendency to pool

> > the

> > > > contents high in the esophagus (I have 24 hour a day symptoms

> of

> > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> > symptoms

> > > > have completely ruined my quality of life, I am not able to

> > function

> > > > properly at all anymore. I am at the end of my rope.

> > > >

> > > > One surgeon has recommeded I get a myotomy, based on the

> > achalasia

> > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > > fundoplication? At this point, I am not even considering this

> > option.

> > > > I would perhaps consider a take-down of the fundoplication, but

> > not a

> > > > myotomy. I have had one small dilation that did not seem to do

> > much at

> > > > all.

> > > >

> > > > Thanks for any help,

> > > > Terry

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I took PPIs right as symptoms began -- I think a lot of us, myself included,

have wondered

whether one medication or another may have caused our condition. Could be, but

we

don't know at this point. My question was whether an SSRI, which affects

serotonin levels

in the body could have been the cause. All around me say no or don't know.

Peg

> > > > >

> > > > > Hi Everyone,

> > > > >

> > > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

> the

> > > end of

> > > > > January of this year. Since then I have had continued

> problems

> > > with

> > > > > swallowing. I also have been getting reflux, both from things

> > > that

> > > > > haven't made it out of my esophagus to my stomach yet, and

> > stuff

> > > from

> > > > > my stomach. One of the manometry tests I have had since the

> > > surgery

> > > > > indicates I have achalasia (another one showed I have some

> > > disorder,

> > > > > but not enough to diagnose achalasia). Numerous barium

> swallows

> > > have

> > > > > showed delayed emptying of the esophagus and tendency to pool

> > > the

> > > > > contents high in the esophagus (I have 24 hour a day symptoms

> > of

> > > > > regurgitation, reflux in throat/nose/airway/etc.). The reflux

> > > symptoms

> > > > > have completely ruined my quality of life, I am not able to

> > > function

> > > > > properly at all anymore. I am at the end of my rope.

> > > > >

> > > > > One surgeon has recommeded I get a myotomy, based on the

> > > achalasia

> > > > > diagnosis. Has anyone heard of ever having a myotomy AFTER a

> > > > > fundoplication? At this point, I am not even considering this

> > > option.

> > > > > I would perhaps consider a take-down of the fundoplication,

> but

> > > not a

> > > > > myotomy. I have had one small dilation that did not seem to

> do

> > > much at

> > > > > all.

> > > > >

> > > > > Thanks for any help,

> > > > > Terry

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I guess the body is such a complicated system, any number of

combinations of things could cause or at least affect our condition

(s).

> > > > > >

> > > > > > Hi Everyone,

> > > > > >

> > > > > > I'm new here. I had a Nissen Fundoplication (full wrap)

at

> > the

> > > > end of

> > > > > > January of this year. Since then I have had continued

> > problems

> > > > with

> > > > > > swallowing. I also have been getting reflux, both from

things

> > > > that

> > > > > > haven't made it out of my esophagus to my stomach yet,

and

> > > stuff

> > > > from

> > > > > > my stomach. One of the manometry tests I have had since

the

> > > > surgery

> > > > > > indicates I have achalasia (another one showed I have

some

> > > > disorder,

> > > > > > but not enough to diagnose achalasia). Numerous barium

> > swallows

> > > > have

> > > > > > showed delayed emptying of the esophagus and tendency to

pool

> > > > the

> > > > > > contents high in the esophagus (I have 24 hour a day

symptoms

> > > of

> > > > > > regurgitation, reflux in throat/nose/airway/etc.). The

reflux

> > > > symptoms

> > > > > > have completely ruined my quality of life, I am not able

to

> > > > function

> > > > > > properly at all anymore. I am at the end of my rope.

> > > > > >

> > > > > > One surgeon has recommeded I get a myotomy, based on the

> > > > achalasia

> > > > > > diagnosis. Has anyone heard of ever having a myotomy

AFTER a

> > > > > > fundoplication? At this point, I am not even considering

this

> > > > option.

> > > > > > I would perhaps consider a take-down of the

fundoplication,

> > but

> > > > not a

> > > > > > myotomy. I have had one small dilation that did not seem

to

> > do

> > > > much at

> > > > > > all.

> > > > > >

> > > > > > Thanks for any help,

> > > > > > Terry

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

See as many doctors as you want! Who cares what they think!

I think you got my note about my gastroenterologist - Dr.

Snape at California Pacific Medical Center. Not my favorite bedside

manner, but extremely knowledgable about acahalasia and other

motility disorders.

> > > > >

> > > > > Hi Everyone,

> > > > >

> > > > > I'm new here. I had a Nissen Fundoplication (full wrap) at

> the

> > > end of

> > > > > January of this year. Since then I have had continued

> problems

> > > with

> > > > > swallowing. I also have been getting reflux, both from

things

> > > that

> > > > > haven't made it out of my esophagus to my stomach yet, and

> > stuff

> > > from

> > > > > my stomach. One of the manometry tests I have had since

the

> > > surgery

> > > > > indicates I have achalasia (another one showed I have some

> > > disorder,

> > > > > but not enough to diagnose achalasia). Numerous barium

> > swallows

> > > have

> > > > > showed delayed emptying of the esophagus and tendency to

pool

> > > the

> > > > > contents high in the esophagus (I have 24 hour a day

symptoms

> > of

> > > > > regurgitation, reflux in throat/nose/airway/etc.). The

reflux

> > > symptoms

> > > > > have completely ruined my quality of life, I am not able

to

> > > function

> > > > > properly at all anymore. I am at the end of my rope.

> > > > >

> > > > > One surgeon has recommeded I get a myotomy, based on the

> > > achalasia

> > > > > diagnosis. Has anyone heard of ever having a myotomy AFTER

a

> > > > > fundoplication? At this point, I am not even considering

this

> > > option.

> > > > > I would perhaps consider a take-down of the

fundoplication,

> > but

> > > not a

> > > > > myotomy. I have had one small dilation that did not seem

to

> do

> > > much at

> > > > > all.

> > > > >

> > > > > Thanks for any help,

> > > > > Terry

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I actually have been under his care also since the surgery. The

latest manometry over there at CPMC showed I had some motility

problem, but no mention of achalasia specifically. The latest

treatment was more medication and if that didn't work, probably

another dilatation (I had one to only 15mm a couple months ago that

didn't seem to do anything). What scares me is that I get vastly

different opinions about what my problem is and what I should do

depending on where I go and who I talk to. Makes you wonder who is

right or if anyone is right...

Terry

> > > > > >

> > > > > > Hi Everyone,

> > > > > >

> > > > > > I'm new here. I had a Nissen Fundoplication (full wrap)

at

> > the

> > > > end of

> > > > > > January of this year. Since then I have had continued

> > problems

> > > > with

> > > > > > swallowing. I also have been getting reflux, both from

> things

> > > > that

> > > > > > haven't made it out of my esophagus to my stomach yet,

and

> > > stuff

> > > > from

> > > > > > my stomach. One of the manometry tests I have had since

> the

> > > > surgery

> > > > > > indicates I have achalasia (another one showed I have

some

> > > > disorder,

> > > > > > but not enough to diagnose achalasia). Numerous barium

> > > swallows

> > > > have

> > > > > > showed delayed emptying of the esophagus and tendency to

> pool

> > > > the

> > > > > > contents high in the esophagus (I have 24 hour a day

> symptoms

> > > of

> > > > > > regurgitation, reflux in throat/nose/airway/etc.). The

> reflux

> > > > symptoms

> > > > > > have completely ruined my quality of life, I am not able

> to

> > > > function

> > > > > > properly at all anymore. I am at the end of my rope.

> > > > > >

> > > > > > One surgeon has recommeded I get a myotomy, based on the

> > > > achalasia

> > > > > > diagnosis. Has anyone heard of ever having a myotomy

AFTER

> a

> > > > > > fundoplication? At this point, I am not even considering

> this

> > > > option.

> > > > > > I would perhaps consider a take-down of the

> fundoplication,

> > > but

> > > > not a

> > > > > > myotomy. I have had one small dilation that did not seem

> to

> > do

> > > > much at

> > > > > > all.

> > > > > >

> > > > > > Thanks for any help,

> > > > > > Terry

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >