Some thoughts....

June 14, 2010

Steve,

Were you forewarned about the possibility of an ectomy or were you just

expecting a myotomy?

I am meeting with Dr. Rice on the 30th and I hate to be hit with that kind of

news with out some warning.

( Santa Fe )

________________________________

From: Sam and Steve <samsteve1@...>

achalasia

Sent: Mon, June 14, 2010 10:49:23 AM

Subject: Re: Re: Some thoughts....

Hello Notan and achalasia group,

Here is the summary of my visit with Dr. Rice on Friday, June 11. My

appointments were as follows:

8am Endoscopy

10am Manometry

3:20pm Timed barium swallow

3:30pm Consult with Dr. Rice

When I walked at 7:45am there were about 15 other people waiting for Dr.

Rice. What I discovered was that Dr. Rice schedules everyone for first thing

in the morning and then takes people one at a time. *He does all the

endoscopies himself.* He had to suction my esophagus as the instructions I

received were no solids for 6 hours and no fluids for 2 hours prior. I had

no solids or fluids for 15 hours. When I walked in to have the endoscopy he

asked if I had been on liquids for 2 days. He was not happy I said no, and I

told him that I did not receive those instructions. Thus, the suction was

necessary. He uses demerol and versed which are sedatives that do not put

you completely out. My prior endoscopies done in land were always done

with propofol which puts you out completely. Needless to say, the suction

was unpleasant. Getting clear instructions prior to an endoscopy and knowing

if you have any problems with the sedation medications are musts.

Dr. Rice left the manometry tube in my E after the endoscopy and I went

immediately to the manometry which was performed by one of his techs. She

was wonderful. The manometry took about 15-20 minutes. I needed to swallow

10 times and the pressure in my E was measured. It was about 1:30pm by the

time I was done with the manometry and I went directly to radiology for the

barium swallow. They got me in by 2:15pm which was great. The timed barium

swallow is simply swallowing about 8oz of barium (you have 45 sec. to

swallow as much of it as you can - I was able to swallow all of it) and then

pictures are taken at 1min/3min/5min to see how much barium passes into the

stomach. None of the barium passed through for me.

After the barium swallow I had time to go to the cafeteria a get a smoothie

as this was my first food or drink since 7pm the prior night. Having all 3

tests in one day is tiring, but it is the only way to go. Getting all the

data and finding out the results in the same day was great!

Dr. Rice took me before 4pm so my day ended up pretty much on time. Very

impressive for any doctor's office, especially since all these tests had to

be coordinated. When I walked into the room Dr. Rice was there and

immediately said, " You've got to have it out. " No beating around the bush -

I need an ectomy. He then went on to describe why, showed us all my results,

and showed us a great powerpoint about achalasia. My E is dilated 9cm,

tortuous, and has formed a pouch just below the LES which makes it difficult

for food to get through as it now has to fight gravity. I still feel like I

can swallow OK, I just need lots of water to force it down.

He said there is no rush to do the surgery, I can wait up to several years

to have the ectomy. We found Dr. Rice to be to the point and a great

educator. He was not brusque at all. Not only that, he really seems to want

to get the best result possible for each patients and was very clear about

the annual follow-up. We have tremendous confidence in Dr. Rice. All of his

existing patients we spoke thought the same.

See this video on Cleveland Clinic's site:

http://www.clevelandclinic.org/heartcenter/podcast/media/rice.mp4

I am not happy at all with the fact I need an ectomy. I am very physically

active (competitive powerlifter) and my job is demanding as well (sports

medicine doc).

Any information that anyone can provide about their physical activity level

after having an ectomy would be greatly appreciated. I know that I would

need 12 - 18 months to fully heal, but with a 3 year old who loves to be

lifted thrown around (I guess daddy loves it as much as he does), I am

pretty devastated right now.

My wife and I will be off to see Dr. Patti next week. We'll see what he

says.

Thanks to everyone on the forum for a wonderful exchange of information and

support.

Steve

On Fri, Jun 11, 2010 at 11:16 AM, notan ostrich <notan_ostrich@...>wrote:

>

> Steve wrote:

> > ... I am concerned that he

> > may have nicked my Vagus nerve which could be the reason for my afib ...

>

> From what I have read it seems to me that vagal-AF is caused by over

> stimulation of the vagus nerve. I can see a number of ways that

> achalasia could lead to vagus stimulation and AF. Even vomiting, nausea,

> vagal maneuvers or Valsalva maneuver have been know to trigger vagal-AF.

> I don't know if damage to the vagus nerve would do that, but I can see

> where an adhesion from the surgery could irritate and stimulate it.

>

> notan

>

June 15, 2010

Hello ,

I was forewarned because I had emailed several doctors (not Dr. Rice because

I could not find his email address online). Dr. Patti responded and said

that based on the history and findings I sent that ectomy was likely. I will

be seeing Dr. Patti next week.

Good luck with your visit to Dr. Rice and keep us informed. Is it your first

visit with Dr. Rice? Are you getting all the tests I mentioned?

Steve

On Mon, Jun 14, 2010 at 3:02 PM, Ottenheimer <hmottenheimer@...

> wrote:

>

> Steve,

> Were you forewarned about the possibility of an ectomy or were you just

> expecting a myotomy?

> I am meeting with Dr. Rice on the 30th and I hate to be hit with that kind

> of news with out some warning.

>

> ( Santa Fe )

>

> ________________________________

> From: Sam and Steve <samsteve1@... <samsteve1%40gmail.com>>

> achalasia <achalasia%40>

> Sent: Mon, June 14, 2010 10:49:23 AM

>

> Subject: Re: Re: Some thoughts....

>

> Hello Notan and achalasia group,

>

> Here is the summary of my visit with Dr. Rice on Friday, June 11. My

> appointments were as follows:

> 8am Endoscopy

> 10am Manometry

> 3:20pm Timed barium swallow

> 3:30pm Consult with Dr. Rice

>

> When I walked at 7:45am there were about 15 other people waiting for Dr.

> Rice. What I discovered was that Dr. Rice schedules everyone for first

> thing

> in the morning and then takes people one at a time. *He does all the

> endoscopies himself.* He had to suction my esophagus as the instructions I

> received were no solids for 6 hours and no fluids for 2 hours prior. I had

> no solids or fluids for 15 hours. When I walked in to have the endoscopy he

> asked if I had been on liquids for 2 days. He was not happy I said no, and

> I

> told him that I did not receive those instructions. Thus, the suction was

> necessary. He uses demerol and versed which are sedatives that do not put

> you completely out. My prior endoscopies done in land were always done

> with propofol which puts you out completely. Needless to say, the suction

> was unpleasant. Getting clear instructions prior to an endoscopy and

> knowing

> if you have any problems with the sedation medications are musts.

>

> Dr. Rice left the manometry tube in my E after the endoscopy and I went

> immediately to the manometry which was performed by one of his techs. She

> was wonderful. The manometry took about 15-20 minutes. I needed to swallow

> 10 times and the pressure in my E was measured. It was about 1:30pm by the

> time I was done with the manometry and I went directly to radiology for the

> barium swallow. They got me in by 2:15pm which was great. The timed barium

> swallow is simply swallowing about 8oz of barium (you have 45 sec. to

> swallow as much of it as you can - I was able to swallow all of it) and

> then

> pictures are taken at 1min/3min/5min to see how much barium passes into the

> stomach. None of the barium passed through for me.

>

> After the barium swallow I had time to go to the cafeteria a get a smoothie

> as this was my first food or drink since 7pm the prior night. Having all 3

> tests in one day is tiring, but it is the only way to go. Getting all the

> data and finding out the results in the same day was great!

>

> Dr. Rice took me before 4pm so my day ended up pretty much on time. Very

> impressive for any doctor's office, especially since all these tests had to

> be coordinated. When I walked into the room Dr. Rice was there and

> immediately said, " You've got to have it out. " No beating around the bush -

> I need an ectomy. He then went on to describe why, showed us all my

> results,

> and showed us a great powerpoint about achalasia. My E is dilated 9cm,

> tortuous, and has formed a pouch just below the LES which makes it

> difficult

> for food to get through as it now has to fight gravity. I still feel like I

> can swallow OK, I just need lots of water to force it down.

>

> He said there is no rush to do the surgery, I can wait up to several years

> to have the ectomy. We found Dr. Rice to be to the point and a great

> educator. He was not brusque at all. Not only that, he really seems to want

> to get the best result possible for each patients and was very clear about

> the annual follow-up. We have tremendous confidence in Dr. Rice. All of his

> existing patients we spoke thought the same.

>

> See this video on Cleveland Clinic's site:

> http://www.clevelandclinic.org/heartcenter/podcast/media/rice.mp4

>

> I am not happy at all with the fact I need an ectomy. I am very physically

> active (competitive powerlifter) and my job is demanding as well (sports

> medicine doc).

> Any information that anyone can provide about their physical activity level

> after having an ectomy would be greatly appreciated. I know that I would

> need 12 - 18 months to fully heal, but with a 3 year old who loves to be

> lifted thrown around (I guess daddy loves it as much as he does), I am

> pretty devastated right now.

>

> My wife and I will be off to see Dr. Patti next week. We'll see what he

> says.

>

> Thanks to everyone on the forum for a wonderful exchange of information and

> support.

>

> Steve

>

> On Fri, Jun 11, 2010 at 11:16 AM, notan ostrich

<notan_ostrich@...<notan_ostrich%40cox.net>

> >wrote:

>

> >

> > Steve wrote:

> > > ... I am concerned that he

> > > may have nicked my Vagus nerve which could be the reason for my afib

> ...

> >

> > From what I have read it seems to me that vagal-AF is caused by over

> > stimulation of the vagus nerve. I can see a number of ways that

> > achalasia could lead to vagus stimulation and AF. Even vomiting, nausea,

> > vagal maneuvers or Valsalva maneuver have been know to trigger vagal-AF.

> > I don't know if damage to the vagus nerve would do that, but I can see

> > where an adhesion from the surgery could irritate and stimulate it.

> >

> > notan

> >

>

June 15, 2010

Hi Steve and hello to the group as I have not posted in some time.

It's fascinating for me to read your very detailed account of what you are

facing at the moment. I have been through it and you case sounds very similar

to mine. I had an ectomy 15 months ago (March 2009) Mine was performed at the

University of Michigan by Dr. Chang. In my case, I could lift a 3 year old

within 6 to 8 weeks of the operation. Heavy lifting was restricted for 3 months.

I may have started doing sit-ups a bit early and develped an incisional hernia

which after an ectomy was a total piece of cake to have repaired. Very short

recovery time there. I don't think you will have any problem at all given the

fact you power lift now, etc.

I am happy to answer any questions or address and fears you have.

Rich from Michigan

>

> ,

>

> Thanks for your comments. I will ask many questions. The thought of an

> ectomy is not sitting well with me.

>

> Steve

>

> > I am not happy at all with the fact I need an ectomy. I am very

> > physically

> > active (competitive powerlifter) and my job is demanding as well

> > (sports

> > medicine doc).

> > Any information that anyone can provide about their physical

> > activity level

> > after having an ectomy would be greatly appreciated. I know that I

> > would

> > need 12 - 18 months to fully heal, but with a 3 year old who loves

> > to be

> > lifted thrown around (I guess daddy loves it as much as he does), I am

> > pretty devastated right now.

> >

June 15, 2010

Hi Steve,

Yes, this will be my first visit. I have not ever considered a ectomy and I've

only recently decided on a myotomy. I've lived with this for a long time, but I

guess the tests will be the determining factor. I will let the list know the

results.

________________________________

From: Sam and Steve <samsteve1@...>

achalasia

Sent: Mon, June 14, 2010 5:18:23 PM

Subject: Re: Re: Some thoughts....

Hello ,

I was forewarned because I had emailed several doctors (not Dr. Rice because

I could not find his email address online). Dr. Patti responded and said

that based on the history and findings I sent that ectomy was likely. I will

be seeing Dr. Patti next week.

Good luck with your visit to Dr. Rice and keep us informed. Is it your first

visit with Dr. Rice? Are you getting all the tests I mentioned?

Steve

June 15, 2010

Do you eat normally since your ecotomy?

Sent from my iPhone

On Jun 14, 2010, at 6:53 PM, " skyking882 " <rbailhe@...> wrote:

Hi Steve and hello to the group as I have not posted in some time.

It's fascinating for me to read your very detailed account of what you are

facing at the moment. I have been through it and you case sounds very similar to

mine. I had an ectomy 15 months ago (March 2009) Mine was performed at the

University of Michigan by Dr. Chang. In my case, I could lift a 3 year old

within 6 to 8 weeks of the operation. Heavy lifting was restricted for 3 months.

I may have started doing sit-ups a bit early and develped an incisional hernia

which after an ectomy was a total piece of cake to have repaired. Very short

recovery time there. I don't think you will have any problem at all given the

fact you power lift now, etc.

I am happy to answer any questions or address and fears you have.

Rich from Michigan

>

> ,

>

> Thanks for your comments. I will ask many questions. The thought of an

> ectomy is not sitting well with me.

>

> Steve

>

> > I am not happy at all with the fact I need an ectomy. I am very

> > physically

> > active (competitive powerlifter) and my job is demanding as well

> > (sports

> > medicine doc).

> > Any information that anyone can provide about their physical

> > activity level

> > after having an ectomy would be greatly appreciated. I know that I

> > would

> > need 12 - 18 months to fully heal, but with a 3 year old who loves

> > to be

> > lifted thrown around (I guess daddy loves it as much as he does), I am

> > pretty devastated right now.

> >

June 15, 2010

I am eating very normally now. There is nothing I can't eat and even the portion

size is getting pretty close to normal. I've almost forgotten that I had an

ectomy.

>

> Do you eat normally since your ecotomy?

>

> Sent from my iPhone

>

June 15, 2010

Steve,

I go to Rice on July 9th and I'm having all the same tests as you. So thanks for

all the details. I will be sure to fast for 24 hours and have a liquid diet for

48 hours before.

I know from a barium swallow on June 4th that my esophagus is 10.5cm wide from

the side and 9.5cm wide when looking head on. I have a tortuous pouch at the

distal end just like you too. I am not sure if it droops below the gastric

junction but I am sure I will find out. My esophagus empties within 10 minutes

so I will most likely show emptying on my barium. At least 50% emptying by 5

minutes.

I am pretty convinced that I will need an ectomy. I am preparing myself for

this. I am 36, have twin boys who are 2 and a half. I am hoping to be able to

wait until I am 40 since I am so asymptomatic.

I had a dilatation 14 years ago and have been asymptomatic ever since. Are you

asymptomatic as well? How old are you, if you don't mind me asking.

Did Rice mention how long an ectomy will last? Should we expect to live until we

are 80? I am scared of the longevity of the stomach tube.

I am going to see Patti after I see Rice too. It looks like we are on the same

journey. Keep in touch.

Cara

> > > > ... I am concerned that he

> > > > may have nicked my Vagus nerve which could

> be the reason for my afib

> > ...

> > >

> > > From what I have read it seems to me that

> vagal-AF is caused by over

> > > stimulation of the vagus nerve. I can see a

> number of ways that

> > > achalasia could lead to vagus stimulation and AF.

> Even vomiting, nausea,

> > > vagal maneuvers or Valsalva maneuver have been

> know to trigger vagal-AF.

> > > I don't know if damage to the vagus nerve would

> do that, but I can see

> > > where an adhesion from the surgery could irritate

> and stimulate it.

> > >

> > > notan

> > >

> >

June 15, 2010

,

Dr Rice is a great teacher and he will be very clear about his

recommendations.

Good luck and I look forward to reading you post

Steve

Sent from my iPhone

On Jun 14, 2010, at 8:00 PM, Ottenheimer

<hmottenheimer@...> wrote:

> Hi Steve,

>

> Yes, this will be my first visit. I have not ever considered a

> ectomy and I've only recently decided on a myotomy. I've lived with

> this for a long time, but I guess the tests will be the determining

> factor. I will let the list know the results.

>

> ________________________________

> From: Sam and Steve <samsteve1@...>

> achalasia

> Sent: Mon, June 14, 2010 5:18:23 PM

> Subject: Re: Re: Some thoughts....

>

> Hello ,

>

> I was forewarned because I had emailed several doctors (not Dr. Rice

> because

> I could not find his email address online). Dr. Patti responded and

> said

> that based on the history and findings I sent that ectomy was

> likely. I will

> be seeing Dr. Patti next week.

>

> Good luck with your visit to Dr. Rice and keep us informed. Is it

> your first

> visit with Dr. Rice? Are you getting all the tests I mentioned?

>

> Steve

>

June 15, 2010

Rich

Thanks for your reply. It is encouraging to read about your

recovery. Are you OK with sharing a detailed account of your surgery

and recovery?

Steve

Sent from my iPhone

On Jun 14, 2010, at 8:15 PM, Vinnie Murray <coachvmurray@...>

wrote:

> Do you eat normally since your ecotomy?

>

> Sent from my iPhone

>

> On Jun 14, 2010, at 6:53 PM, " skyking882 " <rbailhe@...> wrote:

>

> Hi Steve and hello to the group as I have not posted in some time.

>

> It's fascinating for me to read your very detailed account of what

> you are facing at the moment. I have been through it and you case

> sounds very similar to mine. I had an ectomy 15 months ago (March

> 2009) Mine was performed at the University of Michigan by Dr. Chang.

> In my case, I could lift a 3 year old within 6 to 8 weeks of the

> operation. Heavy lifting was restricted for 3 months. I may have

> started doing sit-ups a bit early and develped an incisional hernia

> which after an ectomy was a total piece of cake to have repaired.

> Very short recovery time there. I don't think you will have any

> problem at all given the fact you power lift now, etc.

>

> I am happy to answer any questions or address and fears you have.

>

> Rich from Michigan

>

> >

> > ,

> >

> > Thanks for your comments. I will ask many questions. The thought

> of an

> > ectomy is not sitting well with me.

> >

> > Steve

> >

> > > I am not happy at all with the fact I need an ectomy. I am very

> > > physically

> > > active (competitive powerlifter) and my job is demanding as well

> > > (sports

> > > medicine doc).

> > > Any information that anyone can provide about their physical

> > > activity level

> > > after having an ectomy would be greatly appreciated. I know that I

> > > would

> > > need 12 - 18 months to fully heal, but with a 3 year old who loves

> > > to be

> > > lifted thrown around (I guess daddy loves it as much as he

> does), I am

> > > pretty devastated right now.

> > >

>

June 15, 2010

Steve - are you the one that called me the other day (Dr. Rice gives my name

out to possible 'ectomy patients)? I was out of town for the weekend, but

did receive your message. I work full days on Mon/Tues, so will give you a

call Wed if that's ok. Any time better than others?

in NY

Re: Re: Some thoughts....