Re: Make room on the roller coaster for me

[Guest guest]

Liz:

I think you are right to be thinking about another surgeon -- it seems to me

you should feel 100 percent confident in the person doing this delicate thing.

Also, I honor your ability to do the right thing for you -- all of us are

different

and we should take the course that makes the most sense and creates the

most ease for us.

Take good care.

Peggy

>

> I don't know what I would do without this site to refer to. I went

> on Friday for an endoscope for the surgeon to check out my E for

> possible surgery. I had botox in Dec. to give me short term relief

> while I arranged a surgical option (in Canada this can take months)

> and he was aware of this. After the procedure he asked me if I had

> had breakfast because there was still lots of food down there. I

> said no, no eating since 7:30 last night. He said he could enter the

> stomach easily like this was suspicious. I said, well I had botox

> and it worked very well so this would not surprise me. He then said

> he could not deal with a " phantom " problem. He then said he felt the

> problem was the pyloric valve and my stomach not emptying. He was

> quite proud of himself for discovering the " real problem " . I went

> home and cried the rest of the day. I honestly don't think he knew

> what the botox was and what it could do. Why waste both our time if

> he wouldn't believe the achalasia diagnosis unless he could see and

> touch it himself. (I have had a definitive diagnosis twice) If it is

> not the LES then why did the botox have such immediate, amazing

> results. It is entirely possible the stomach emptying could also be

> an issue but I think it is a very small, secondary part of the

> problem and one I can live with. I am so tired of this and so

> frustrated. I see him again in a couple of weeks so will have a

> conversation with him about all of this but unless he can reassure me

> a whole lot that he knows what he is talking about I will be back to

> square 1 looking for another surgeon. I know most of you cringe at

> the thought of botox but it has saved my life and given me the time

> (and the energy) to not have to jump at the first option out there

> and I won't repeat the botox, no matter what.

> thanks

> Liz

[Guest guest]

Lizzie,

I believe the les opens easily when pushed open during the endoscope.

My suggestion is a new doctor and find the doctor before you take all

these test again, because they will want their own tests.

Notan, maybe you know if the les opens easily during endoscope? My

understanding is that an endoscope really doesn't diagnose

achalasia. It is used to eliminate other causes of the symptoms, but

the best diagnostic tools are barium swallow and the manometry.

Check the doctor links on the database or go to the major teaching

hospitals in your area and type esophagus in their search area. Then

take the names of the head gi's and surgeons and put their names in

this search:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

See what they have published and see their area of interest.

Publishing isn't everything, but it is an insight into their

knowledge level. That search goes usually by last name and then

either just their first and last initial or both. They may not have

published about achalasia but see what they know.

In general, don't mess with them unless they are heads of their

departments or specialists in their area. You will likely end up

with the top people eventually or you get stuck with someone with

limited experience and waste your time.

Oh Oh, you are in Canada. Talk to . You may have to disregard

everything I just typed. But you are wasting your time with

the " phantom " doctor.

You should treat it instead of ignoring it, especially in Canada,

because it could take a while, and you might as well start now.

Oh no, I'm so irritated with your doctor I'm having a spasm.

Sandy in CA

>

> I don't know what I would do without this site to refer to. I went

> on Friday for an endoscope for the surgeon to check out my E for

> possible surgery. I had botox in Dec. to give me short term relief

> while I arranged a surgical option (in Canada this can take months)

> and he was aware of this. After the procedure he asked me if I had

> had breakfast because there was still lots of food down there. I

> said no, no eating since 7:30 last night. He said he could enter

the

> stomach easily like this was suspicious. I said, well I had botox

> and it worked very well so this would not surprise me. He then

said

> he could not deal with a " phantom " problem. He then said he felt

the

> problem was the pyloric valve and my stomach not emptying. He was

> quite proud of himself for discovering the " real problem " . I went

> home and cried the rest of the day. I honestly don't think he knew

> what the botox was and what it could do. Why waste both our time

if

> he wouldn't believe the achalasia diagnosis unless he could see and

> touch it himself. (I have had a definitive diagnosis twice) If it

is

> not the LES then why did the botox have such immediate, amazing

> results. It is entirely possible the stomach emptying could also

be

> an issue but I think it is a very small, secondary part of the

> problem and one I can live with. I am so tired of this and so

> frustrated. I see him again in a couple of weeks so will have a

> conversation with him about all of this but unless he can reassure

me

> a whole lot that he knows what he is talking about I will be back

to

> square 1 looking for another surgeon. I know most of you cringe at

> the thought of botox but it has saved my life and given me the time

> (and the energy) to not have to jump at the first option out there

> and I won't repeat the botox, no matter what.

> thanks

> Liz

[Guest guest]

Thanks Sandy

I appreciate the suggestions. Yes, I know they can get through the

LES with the endoscope but I have had it 5 times before and the

person doing it(4 different doctors) have always said it was

very " tight " which I presume it was not this time, again due to the

botox. I can appreciate that he may not want to operate until the

botox wears off and he can see exactly how it is at that point which

I kind of expected but to simply dismiss the whole thing just stunned

me. I do want to hear a little more of what he has to say when I am

not under the influence of the valium. I know I looked at him like

he had two heads when he said that so I think he is under no illusion

I thought he was an idiot. I was referred to him by someone who does

have a lot of experience with achalasia so I thought he would be a

safe bet. As for researching teaching hospitals, he is at a teaching

hospital and is one of the top surgeons there. I suspect my issue

just does not come up that often for him. Anyway, I am researching

some others, I really hope to hear from Lorraine as she mentioned

someone in Toronto that I could likely get in to see. I certainly

have no plans to ignore it, I just needed to vent a little, buck

myself up and move on to plan B. As most of you know, there is

nobody in my immediate circle who knows anything about this and just

offers sympathy but can't help me to evaluate the options. I go to

the site you quote quite often and check new articles so will

continue with that as well. I am going on holiday tomorrow to

Kentucky to visit a friend for a week so am just going to enjoy

myself and worry about this when I come back. (This will be an

expensive trip, I have decided I am very deserving of a lot of very

nice gifts for myself, yikes)

thanks again

Liz

[Guest guest]

Thanks Peggy,

I appreciate your kind words. They help a lot

Liz

[Guest guest]

Liz ..... where in Canada are you? I am in Calgary.

lizzie2542 wrote:

> I don't know what I would do without this site to refer to. I went

> on Friday for an endoscope for the surgeon to check out my E for

> possible surgery. I had botox in Dec. to give me short term relief

> while I arranged a surgical option (in Canada this can take months)

> and he was aware of this. After the procedure he asked me if I had

> had breakfast because there was still lots of food down there. I

> said no, no eating since 7:30 last night. He said he could enter the

> stomach easily like this was suspicious. I said, well I had botox

> and it worked very well so this would not surprise me. He then said

> he could not deal with a " phantom " problem. He then said he felt the

> problem was the pyloric valve and my stomach not emptying. He was

> quite proud of himself for discovering the " real problem " . I went

> home and cried the rest of the day. I honestly don't think he knew

> what the botox was and what it could do. Why waste both our time if

> he wouldn't believe the achalasia diagnosis unless he could see and

> touch it himself. (I have had a definitive diagnosis twice) If it is

> not the LES then why did the botox have such immediate, amazing

> results. It is entirely possible the stomach emptying could also be

> an issue but I think it is a very small, secondary part of the

> problem and one I can live with. I am so tired of this and so

> frustrated. I see him again in a couple of weeks so will have a

> conversation with him about all of this but unless he can reassure me

> a whole lot that he knows what he is talking about I will be back to

> square 1 looking for another surgeon. I know most of you cringe at

> the thought of botox but it has saved my life and given me the time

> (and the energy) to not have to jump at the first option out there

> and I won't repeat the botox, no matter what.

> thanks

> Liz

>

>

>

>

[Guest guest]

Hi Liz,

Out of the 50 million tests I have had over the last 3 months, the

stomach emptying test was the easiest and least invasive. If there

is any doubt (obviously my GI thought so too, after 15 1/2 hours I

still had food in my stomach too).

You go to the xray dept. In my case they scrambled an egg with

barium or some other radio active material. I had to eat it. (thank

God this was before NOTHING would stay. Then every 10 minutes, they

had you stand between 2 machines and they took an x ray. It was

really quite interesting. The gal that did mine was so helpful and

answered questions and let me see the xrays. She even did a

calculation on how much was still in the esophagus (although they did

not want that).

After 2 hours .. more than 1/2 of the egg was still in the E. The

little that did go to the stomach showed a normal emptying sequence.

If they are concerned, maybe you could ask if they could do that?

Also, the Xray did show how narrow the area was at the bottom of the

E. I thought it was one of the better tests.

Before I left the hospital, the remainder of the egg left the E,

but not thru the stomach. UGH!

One thing that I thought was hilarious (I ALWAYS must find humor or

something positive about each experience no matter how awful it

is ... it is annoying, but it helps me cope.)

They place me in a chair ... give me the High Test Egg in a toss

away styrfoam bowl, sit it on another toss away plate, give me a

plastic spoon to eat my toxic egg with. Then they drape a cover over

my front like a giant bib and have me put plastic gloves on to hold

the plastic spoon to eat with. Mind you, this toxic substance is now

going to be placed inside my body for the long slide home, but my

clothes are protected and my hands covered. For some reason that

struck me so funny. Oh well, gotta find your humor where you can.

I am just reading messages now, but from the look of all the " make

room on the roller coaster " , I may have to open an amusement park!

Sounds like you made a good decision on the Botox, since it is

getting you thru! Hope my suggestion helps.

Kathie in Pittsburgh

>

> I don't know what I would do without this site to refer to. I went

> on Friday for an endoscope for the surgeon to check out my E for

> possible surgery. I had botox in Dec. to give me short term relief

> while I arranged a surgical option (in Canada this can take months)

> and he was aware of this. After the procedure he asked me if I had

> had breakfast because there was still lots of food down there. I

> said no, no eating since 7:30 last night. He said he could enter

the

> stomach easily like this was suspicious. I said, well I had botox

> and it worked very well so this would not surprise me. He then

said

> he could not deal with a " phantom " problem. He then said he felt

the

> problem was the pyloric valve and my stomach not emptying. He was

> quite proud of himself for discovering the " real problem " . I went

> home and cried the rest of the day. I honestly don't think he knew

> what the botox was and what it could do. Why waste both our time

if

> he wouldn't believe the achalasia diagnosis unless he could see and

> touch it himself. (I have had a definitive diagnosis twice) If it

is

> not the LES then why did the botox have such immediate, amazing

> results. It is entirely possible the stomach emptying could also

be

> an issue but I think it is a very small, secondary part of the

> problem and one I can live with. I am so tired of this and so

> frustrated. I see him again in a couple of weeks so will have a

> conversation with him about all of this but unless he can reassure

me

> a whole lot that he knows what he is talking about I will be back

to

> square 1 looking for another surgeon. I know most of you cringe at

> the thought of botox but it has saved my life and given me the time

> (and the energy) to not have to jump at the first option out there

> and I won't repeat the botox, no matter what.

> thanks

> Liz

[Guest guest]

Hi

I am in southern Ontario, Cambridge, about 1 hour west of Toronto.

Liz

>

> > I don't know what I would do without this site to refer to. I

went

> > on Friday for an endoscope for the surgeon to check out my E for

> > possible surgery. I had botox in Dec. to give me short term

relief

> > while I arranged a surgical option (in Canada this can take

months)

> > and he was aware of this. After the procedure he asked me if I

had

> > had breakfast because there was still lots of food down there. I

> > said no, no eating since 7:30 last night. He said he could enter

the

> > stomach easily like this was suspicious. I said, well I had botox

> > and it worked very well so this would not surprise me. He then

said

> > he could not deal with a " phantom " problem. He then said he felt

the

> > problem was the pyloric valve and my stomach not emptying. He was

> > quite proud of himself for discovering the " real problem " . I went

> > home and cried the rest of the day. I honestly don't think he

knew

> > what the botox was and what it could do. Why waste both our time

if

> > he wouldn't believe the achalasia diagnosis unless he could see

and

> > touch it himself. (I have had a definitive diagnosis twice) If

it is

> > not the LES then why did the botox have such immediate, amazing

> > results. It is entirely possible the stomach emptying could also

be

> > an issue but I think it is a very small, secondary part of the

> > problem and one I can live with. I am so tired of this and so

> > frustrated. I see him again in a couple of weeks so will have a

> > conversation with him about all of this but unless he can

reassure me

> > a whole lot that he knows what he is talking about I will be back

to

> > square 1 looking for another surgeon. I know most of you cringe

at

> > the thought of botox but it has saved my life and given me the

time

> > (and the energy) to not have to jump at the first option out

there

> > and I won't repeat the botox, no matter what.

> > thanks

> > Liz

> >

> >

> >

> >

[Guest guest]

Hi Kathie,

thanks very much. I don't deny that my digestion is likely messed up

from top to bottom, I just don't want attention diverted again from

what I believe is the most problematic area. I agree some of the

tests you just have to laugh at. My favourite was the high tech

graphen swallow (sp?) where you drink some barium drink, lie down on

a table and roll a complete 360 to shake it all around. That struck

me funny as did during a manometry, the tube wouldn't drop into the

stomach so the technician had me marching up and down the hall with

all the wires draped over my shoulder and then jumping off a stool to

try and force it in. If they want the test done, I would do it.

thanks again for explaining it.

Liz

>

> Hi Liz,

> Out of the 50 million tests I have had over the last 3 months,

the

> stomach emptying test was the easiest and least invasive. If there

> is any doubt (obviously my GI thought so too, after 15 1/2 hours I

> still had food in my stomach too).

> You go to the xray dept. In my case they scrambled an egg with

> barium or some other radio active material. I had to eat it.

(thank

> God this was before NOTHING would stay. Then every 10 minutes,

they

> had you stand between 2 machines and they took an x ray. It was

> really quite interesting. The gal that did mine was so helpful and

> answered questions and let me see the xrays. She even did a

> calculation on how much was still in the esophagus (although they

did

> not want that).

> After 2 hours .. more than 1/2 of the egg was still in the E.

The

> little that did go to the stomach showed a normal emptying

sequence.

> If they are concerned, maybe you could ask if they could do that?

> Also, the Xray did show how narrow the area was at the bottom of

the

> E. I thought it was one of the better tests.

> Before I left the hospital, the remainder of the egg left the E,

> but not thru the stomach. UGH!

> One thing that I thought was hilarious (I ALWAYS must find humor

or

> something positive about each experience no matter how awful it

> is ... it is annoying, but it helps me cope.)

> They place me in a chair ... give me the High Test Egg in a toss

> away styrfoam bowl, sit it on another toss away plate, give me a

> plastic spoon to eat my toxic egg with. Then they drape a cover

over

> my front like a giant bib and have me put plastic gloves on to hold

> the plastic spoon to eat with. Mind you, this toxic substance is

now

> going to be placed inside my body for the long slide home, but my

> clothes are protected and my hands covered. For some reason that

> struck me so funny. Oh well, gotta find your humor where you can.

> I am just reading messages now, but from the look of all

the " make

> room on the roller coaster " , I may have to open an amusement park!

> Sounds like you made a good decision on the Botox, since it is

> getting you thru! Hope my suggestion helps.

> Kathie in Pittsburgh

>

>

[Guest guest]

Liz, I understand your frustration with the doctor coming up with

a 'new' diagnosis. It is scary knowing that we know more about this

disease than the doctors do. I had a simple chest x-ray the other

day and my doctor was trying to tell me that since I did not have a

dilated E and there was no air in my stomach that he could not be

sure I had A as previously diagnosed. Well, I had just taken

Procardia and had a small breakfast since it works so well for me.

I don't think he considered that and it was very frustrating talking

to him about it. Hopefully my dreaded manometry will tell us for

sure this Friday.

I am more worried about the manometry NOT showing the signs of

achalasia they are expecting. I am more worried about that than

making it through the manometry itself (which I am dreading - but we

have all discussed that which is why I am going on Friday). Lord

please don't make me have to start over! I hope you can get a

second opinion and a final diagnosis. I wish you the best.

Was this the same doctor that initially diagnosed you? I am going

to a specialist referred by my specialist. If they try to tell me

Friday it is not achalasia we will have much more to talk about.

>

> I don't know what I would do without this site to refer to. I

went

> on Friday for an endoscope for the surgeon to check out my E for

> possible surgery. I had botox in Dec. to give me short term

relief

> while I arranged a surgical option (in Canada this can take

months)

> and he was aware of this. After the procedure he asked me if I

had

> had breakfast because there was still lots of food down there. I

> said no, no eating since 7:30 last night. He said he could enter

the

> stomach easily like this was suspicious. I said, well I had botox

> and it worked very well so this would not surprise me. He then

said

> he could not deal with a " phantom " problem. He then said he felt

the

> problem was the pyloric valve and my stomach not emptying. He was

> quite proud of himself for discovering the " real problem " . I went

> home and cried the rest of the day. I honestly don't think he

knew

> what the botox was and what it could do. Why waste both our time

if

> he wouldn't believe the achalasia diagnosis unless he could see

and

> touch it himself. (I have had a definitive diagnosis twice) If it

is

> not the LES then why did the botox have such immediate, amazing

> results. It is entirely possible the stomach emptying could also

be

> an issue but I think it is a very small, secondary part of the

> problem and one I can live with. I am so tired of this and so

> frustrated. I see him again in a couple of weeks so will have a

> conversation with him about all of this but unless he can reassure

me

> a whole lot that he knows what he is talking about I will be back

to

> square 1 looking for another surgeon. I know most of you cringe

at

> the thought of botox but it has saved my life and given me the

time

> (and the energy) to not have to jump at the first option out

there

> and I won't repeat the botox, no matter what.

> thanks

> Liz

[Guest guest]

Sandy wrote:

Notan, maybe you know if the les opens easily during endoscope? My understanding is that an endoscope really doesn't diagnose achalasia. It is used to eliminate other causes of the symptoms, but the best diagnostic tools are barium swallow and the manometry.

How much resistance to the endoscope there

should be is something that has never been clear to me. One of the

things my GI told me after I was scoped was that in my case

there was a lot of resistance. Some others in this group have also been

told that. But, if you look at information about the procedure the

information seems to lean away from there being a lot of resistance,

but it is vague about how much there should be. Consider the quotes

from the sites listed below. "Passes readily," "passes with gentle pressure," "mild to

moderate resistance" and "resistance"

are typical statements. I don't see a good explanation for those of us

that have strong resistance but don't have tumors, strictures or some

connective tissue disease. I have seen reports of other cases where the

endoscope passed easily through the LES.

As I understand it barium swallow

and manometry are the main diagnostic tools with endoscope helping to

rule out cancer and strictures. It can sometimes show some dilation and

loss of peristalsis. The barium swallow and manometry should be better

for detecting those. The endoscope can also test for resistance going

through the LES. As you can see from above, I don't really know what

they make of that result.

I have been a bit frustrated lately. It has to do with being scoped and

wanting to know how my achalasia has progressed, or not. I was scoped

in Jan. for the first time in five years. I asked the GI afterwards if

my esophagus was dilated from not having treatment. (My case is much

milder than many have it. I eat what I want where I want. I have a

concern that if I get treatment I may end up worse than I am now. I

also am concerned that I am damaging my esophagus by not having

treatment.) He said that the endoscope was not a good indicator for

that and referred me for another barium swallow. I had it two weeks

ago. I told the radiologist doing it that it was known that I have

achalasia, confirmed by two previous barium swallows in that same room,

and that what I wanted to know was if I was damaging my esophagus and

was it more dilated than before. I was told the report would take a

day. A week later I called my GI to see if anyone had the report

because I had heard nothing. I had a manometry test results get lost

before. His office called me back and said the "the results are

consistent with achalasia." That was useless information. I asked about

how dilated the esophagus was compared to the last time. Response, "I

don't see that information in the report." I said I had the test to

help decide if I would have treatment and I explained why the

information was important. Response, "I will ask the doctor." When she

came back on, "He says that the report doesn't indicate that there is

more dilation, but he still recommends surgery." I can't tell from what

was said if anyone even compared the old x-rays before making the

report. Anyway, I would have been a lot less frustrated if the

endoscope had provided some answers. It seems to me that the endoscope

did nothing other than getting me out of a day of work and making some

money for the doctor. Actually, it was a good thing and I did want to

be scoped. I know my esophagus looks good, no cancer or esophagitis.

notan

http://www.merck.com/mrkshared/mmanual/section3/chapter20/20f.jsp

Merck -Motor Disorders - ACHALASIA

"The esophagoscope usually passes readily into the stomach; difficulty

doing so should raise the possibility of malignancy or stricture."

http://www.baylorhealth.edu/proceedings/12_4/12_4_vanderpool.html

Achalasia:

Willis or Heller?

DAVID

VANDERPOOL, MD, MATTHEW V. WESTMORELAND, MD, AND ERIC FETNER, MD

"The lower esophageal sphincter is

tight, but the esophagoscope passes with gentle pressure"

http://hsc.usf.edu/medicine/internalmedicine/swallowing/swallowingnews.html

Achalasia

USF - Health Sciences

Center · College of Medicine · Internal Medicine · Swallowing

Center

"The endoscope passes into the stomach through

the closed lower esophageal sphincter with mild to moderate resistance."

http://www.medicinenet.com/achalasia/page6.htm

Achalasia

Medical Author: Jay W. Marks, MD Medical Editor: Dennis Lee, MD

"One of the earliest endoscopic findings in achalasia is resistance as

the endoscope is passed from the esophagus and into the stomach due to

the high pressure in the lower esophageal sphincter."

[Guest guest]

Hi Notan:

Sounds like it is time to rattle some cages and make someone pull out those

x-rays and compare!

I hate doctors!

Peggy

>