Jump to content
RemedySpot.com

RICHARD

Rate this topic


Guest guest

Recommended Posts

Guest guest

Cara wrote:

> The BIG question to be answered for people who choose not to have an ectomy

is, " what will happen to my E if I do nothing? " . The fact that Dempsey didn't

believe that the E will perforate on its own is such promising information.

Obviously that was based on YOUR records and not mine ...

>

I was one of those that went for years before even telling my doctor

that I had problems. After I was told I had achalasia and I should have

the surgery I waited another six years. I didn' end up with a lot

dilation just a little. When I met with the surgeon at Mayo, to talk

about a myotomy not esophagectomy, I asked if I needed to do anything

about my achalasia. She said the decision was about how I wanted to

live. If I preferred to live without treatment then that was what I

should do. I asked her about the dilation and would it progress if I did

have treatment. She said it could but she would deal with it if I wanted

surgery later. I asked about some people ending up needing an

esophagectomy. She said a few people would end up needing an

esophagectomy but most would not. We discussed risks of not having

treatment (myotomy) and of having it. One of the comments she made that

really summed it all up was that I should know and acknowledge the risks

then put them out of mind and decide based on how I wanted to live. That

was advice to me on that date. I can't know what the advise to someone

else or at another time would be. My achalasia progressed very slowly,

which is not the case for everyone. I love doctors that don't tell me

how to live but help me live the life I want to live.

notan

Link to comment
Share on other sites

Guest guest

Not an, I have searched and searched and searched but I can't seem to find your

story. Did you have the surgery? If so, was it a lap Heller? How are you doing

now?

I am sure you remember when I first posted back in april 2007, when I first

learned that I was pregnant with twins. Well, I had planned to get the barium

done after they were born but I was dealing with feeding issues with one of my

twins that took up all of my time and energy and I didn't really focus on

myself. So here I am 2 and a half years AFTER they are born and finally got the

barium.

I doubt that the state of my E was much different 2 years ago than it was on

Friday but who knows? What matters now is whether or not surgery will be an

option for me, and what type of surgery will that be (myotomy or 'ectomy).

Then of course there is the wait and see approach with monitoring which sounds

all too appealing. Since my quality of life is pretty good right now, why change

it so drastically?

I read back in 's old posts that Dr. Rice said that is wouldn't change the

outcome if she did the 'ectomy at 32, 42 or even 50. So my age (36) makes me

feel like I have some time. Even if my E is tortuous. I love that term, really

do. Makes me all warm and fuzzy inside.

I will know more tomorrow once I speak to my local GI and see what the reports

say. Ofcourse my E looked terrible to me on the screen but maybe its not as bad

as it looked? She gave me a carbonated drink to inflate it before I drank the

barium, I guess that is standard. But since I fasted for 12 hours previous to

the study, there was nothing in my E. At least I know stuff isn't sitting there

for days on end.

Anyway, I would love to know your story and I am so glad that you have slow

progressing A. It just serves to show how everyone is so different in the

progession of this disease.

Regards,

Cara

Link to comment
Share on other sites

Guest guest

Cara wrote:

> Not an, I have searched and searched and searched but I can't seem to find

your story. Did you have the surgery? If so, was it a lap Heller? How are you

doing now?

>

To make a long story short. I had symptoms off and on going back decades

to my childhood. I can't say it was achalasia all those years because I

was only diagnosed in 1999. I had the myotomy in 2005 and I eat whatever

I want. I probably eat faster than most people without achalasia. Unless

the food is dry I often don't drink until after the meal. I do drink a

lot mostly because I get thirsty a lot. I am doing well. I take a PPI

daily. They don't scare me. If I start to have problems I will deal with

them then. I have an appointment to see my GI to update him and see if

he thinks it is time to have anything checked out.

I started another message for you yesterday but have not finished it.

There is a section on cancer that I am going slowly on. I will cut the

non-cancer part and add it to this message. My advice sometime comes

from a different angle than you get from others. They aren't wrong I

just want to say something else.

---------

You are getting some good comments about the future. I have one about

the past. Don't look back and do the what if thing. When we get a

myotomy there is no guarantee that we will not need an esophagectomy

latter. Most will not but a few will. You could have had the surgery and

still ended up as you are. I don't think the dilation of the esophagus

is well understood. Why some get end stage and some do not. If you read

old papers about achalasia you find that they thought trapped gas

because of a problem at the UES for some was the cause. Today some

doctors believe it is the degree of muscle atrophy that is the main

cause. Trapped food of course would not help, and good treatment

sometimes causes the dilation to reverse some, though it seems that some

people who do everything right still end up in end stage.

---------

That wasn't much. I hope it helped.

notan

Link to comment
Share on other sites

Guest guest

Cara,

Just out of interest: How did your pregnancy go with A? This is something that I

think about, but have decided to not worry about that until the time comes

(hopefully one day)... I've often comtemplated whether a pregnancy would worsen

the symptoms of A- preventing enough space for food etc and if it would cause

damage to a myotomy at a later stage.

The group poll that was posted was interesting, as oral contraceptive pill

causes terrible nausea and retching for me (A has removed my ability to

vomit-lovely!) -I don't know if that was just me or if it's an effect of A.

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Mon, 7 June, 2010 5:09:58 AM

Subject: Re: RIchard

 

Not an, I have searched and searched and searched but I can't seem to find your

story. Did you have the surgery? If so, was it a lap Heller? How are you doing

now?

I am sure you remember when I first posted back in april 2007, when I first

learned that I was pregnant with twins. Well, I had planned to get the barium

done after they were born but I was dealing with feeding issues with one of my

twins that took up all of my time and energy and I didn't really focus on

myself. So here I am 2 and a half years AFTER they are born and finally got the

barium.

I doubt that the state of my E was much different 2 years ago than it was on

Friday but who knows? What matters now is whether or not surgery will be an

option for me, and what type of surgery will that be (myotomy or 'ectomy).

Then of course there is the wait and see approach with monitoring which sounds

all too appealing. Since my quality of life is pretty good right now, why change

it so drastically?

I read back in 's old posts that Dr. Rice said that is wouldn't change the

outcome if she did the 'ectomy at 32, 42 or even 50. So my age (36) makes me

feel like I have some time. Even if my E is tortuous. I love that term, really

do. Makes me all warm and fuzzy inside.

I will know more tomorrow once I speak to my local GI and see what the reports

say. Ofcourse my E looked terrible to me on the screen but maybe its not as bad

as it looked? She gave me a carbonated drink to inflate it before I drank the

barium, I guess that is standard. But since I fasted for 12 hours previous to

the study, there was nothing in my E. At least I know stuff isn't sitting there

for days on end.

Anyway, I would love to know your story and I am so glad that you have slow

progressing A. It just serves to show how everyone is so different in the

progession of this disease.

Regards,

Cara

Link to comment
Share on other sites

Guest guest

ALana,

I can't comment on a myotomy during pregnancy because I never had one (just a

dilatation) but I think there are some on here that have gone through it and

maybe they can comment.

However, I was pregnant with twins and my pregnancy was tough because of the

hyperemesis. I was vomiting 10x a day from 8 weeks until about 24 weeks. I had

to leave work and go on disability. I posted the poll because after going back

and reading some old posts, I found a member here named who had the same

thing during her pregnancy - funny huh?

As far as the A goes, I had NO ISSUES what so ever. No dysphagia, no

regurgitation, no aspiration, no reflux (ok maybe a little) but nothing out of

the ordinary. A chiropractor told me that the natural hormone relaxin is

released during pregnancy that affects ligaments and joints to let them expand

more easily and that maybe had an effect on my LES? Maybe it opened it up a

little more during pregnancy?

I had a C section at 37 weeks and I fasted for 24 hours before the surgery to

prevent aspiration. Everything went perfectly. I had no issues swallowing post

delivery either.

I do believe that my pregnancy may have exacerbated the sagging of my E since it

was all pushed up at one point and then went back in place but definitely more

tortuous after the kids were delivered. Its just a hypothesis so I really have

no idea. I mention in my previous posts that I have gone untreated for A for 14

years and my E is now pretty messed up. I won't know the extent of the damage

until tomorrow when I speak to my GI .

I am hoping and praying its not beyond repair. But from reading everyone's posts

here on this board with a tortuous/sigmoid/mega E, the 'ectomy is a strong

possibility in the future.

But as far as pregnancy and A go, I had no issues. Feel free to email me any

time if you would like more info.

Cara

> From: Alana <ladybugs2501@...>

> Subject: Re: RIchard

> achalasia

> Date: Sunday, June 6, 2010, 6:29 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Cara,

>

> Just out of interest: How did your pregnancy go with A?

> This is something that I think about, but have decided to

> not worry about that until the time comes (hopefully one

> day)... I've often comtemplated whether a pregnancy

> would worsen the symptoms of A- preventing enough space for

> food etc and if it would cause damage to a myotomy at a

> later stage.

>

>

>

> The group poll that was posted was interesting, as oral

> contraceptive pill causes terrible nausea and retching for

> me (A has removed my ability to vomit-lovely!) -I

> don't know if that was just me or if it's an effect

> of A.

>

>

>

> ________________________________

>

> From: Cara Spoto <cspoto@...>

>

> achalasia

>

> Sent: Mon, 7 June, 2010 5:09:58 AM

>

> Subject: Re: RIchard

>

>

>

>  

>

> Not an, I have searched and searched and searched but I

> can't seem to find your story. Did you have the surgery?

> If so, was it a lap Heller? How are you doing now?

>

>

>

> I am sure you remember when I first posted back in april

> 2007, when I first learned that I was pregnant with twins.

> Well, I had planned to get the barium done after they were

> born but I was dealing with feeding issues with one of my

> twins that took up all of my time and energy and I

> didn't really focus on myself. So here I am 2 and a half

> years AFTER they are born and finally got the barium.

>

>

>

> I doubt that the state of my E was much different 2 years

> ago than it was on Friday but who knows? What matters now is

> whether or not surgery will be an option for me, and what

> type of surgery will that be (myotomy or 'ectomy).

>

>

>

> Then of course there is the wait and see approach with

> monitoring which sounds all too appealing. Since my quality

> of life is pretty good right now, why change it so

> drastically?

>

>

>

> I read back in 's old posts that Dr. Rice said

> that is wouldn't change the outcome if she did the

> 'ectomy at 32, 42 or even 50. So my age (36) makes me

> feel like I have some time. Even if my E is tortuous. I love

> that term, really do. Makes me all warm and fuzzy inside.

>

>

>

> I will know more tomorrow once I speak to my local GI and

> see what the reports say. Ofcourse my E looked terrible to

> me on the screen but maybe its not as bad as it looked? She

> gave me a carbonated drink to inflate it before I drank the

> barium, I guess that is standard. But since I fasted for 12

> hours previous to the study, there was nothing in my E. At

> least I know stuff isn't sitting there for days on end.

>

>

>

>

> Anyway, I would love to know your story and I am so glad

> that you have slow progressing A. It just serves to show how

> everyone is so different in the progession of this disease.

>

>

>

> Regards,

>

> Cara

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi Cara,

I tip my hat to you for going back to my original posts and to the other

research you have done. With tens of thousands of posts here, it has created a

body of knowledge that probably has no rivals. I posted contemporaneously back

in the summer of 2006 as the most effective way to describe what I was going

through in order to get the best feedback from other members, and to have it out

there for future readers to possibly read in order to have it available in order

to compare notes without having to break any new ground.

One of the things that ran through my mind back then, and please excuse me if I

did say it back then, but its worth repeating.  Probably anyone can go to any

number of doctors for additional opinions until they hear the one they want to

hear. How does hearing the one you want to hear make it right, when all the

others before have given you the opinion that you don't want to hear? 

Surgeons cut; that's what they do for a living. Anytime a surgeon tells you that

you don't need surgery, it goes beyond what they do to make a living, thus

making it an opinion rendered that is not self serving (let's not get involved

with the surgeon who gives an opinion knowing that they will not be the one who

operates).

While it still doesn't mean that they are right with what they said, it is still

worth noting. You still need to use your own common sense and make sure that you

review what all the doctors have told you and come to YOUR own conclusion. What

are the risks with what Dr. Dempsey left me?  If I don't have it done, maybe I

never will need to have it done, then I " win. "   Maybe I will need to have it

done anyway, and it will be in just a few years and the years waiting did

not made a difference, (then I am no worse off, and perhaps surgical techniques

will have improved.

The problem occurs when I am no longer a good surgical candidate and my

esophagus has gone really bad and the surgery must be done. Again, perhaps

surgical techniques will be much better than now. But, that is where the risk

lies.

As someone once said, once your esophagus is gone, there are not too many viable

options to fall back on if your reconfigured esophagus/stomach should fail.

Besides the surgery and recovery involved with an ectomy, this is a low

percentage concern of ectomy patients.  The ones I know have such great

attitudes that they probably do not have this thought cross their minds too

often...but they can speak for themselves.

In answer to your burping question, I do not create " little burps, " rather I

create massive sounding hiccups, and based upon the way I feel a moment later

(less pressure), the sound signals to me that food or liquid has passed thru the

LES to the stomach. Heads will often turn when people hear this. Fortunately

for me, they turn their heads too late to see from whose mouth the sound came

from, and I just go about my business with a straight face.

Cara, you are doing the right thing researching the Boards and speaking to many

doctors. Knowledge is power. I am sure that you will come to a decision that you

feel is right, and will never " turn around. "

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sun, June 6, 2010 1:31:40 PM

Subject: RIchard

 

I just went back and read all the posts that related to your 'ectomy

investigation and ultimate decision. I read what Dr. Dempsey told you. I

actually felt the relief that you must have felt when you were hearing the news

for the 1st time. Its all becoming clear to me how the decision process is made.

Its so individual, its so unique. There is no " right " or " wrong " way to go

unless of course it was a life threatening situation. Which in our case it

doesn't seem to be.

The BIG question to be answered for people who choose not to have an ectomy is,

" what will happen to my E if I do nothing? " . The fact that Dempsey didn't

believe that the E will perforate on its own is such promising information.

Obviously that was based on YOUR records and not mine so I will have to undergo

further testing and gather more information to determine the long term survival

of my E.

But I, like you, do not have a quality of life issue. I don't even have rotting

food in my E. Why take it out and run the risk of all these complications and

possibly death (albeit a low risk - but still enough to scare the hell out of

me).

So I just wanted to say that I have read, and read and read all of your posts

from that time period and I feel for what you went through. Its a scary time and

I am embarking on it now. But I what I have (that you didn't) is your knowledge

from the experience!! I am glad to know that there are other options, especially

if you are not suffering currently.

As an aside, I wanted to know if you do this too. When I eat, I am able to

create little burps (i call them inside burps) in my E that help get my food

through the LES. They are not real burps that come from the stomach (I lost that

when I got A) but rather little ones that I believe are form the E and that give

me relief and I feel the food go down. Do you experience this at all?

Cara

Link to comment
Share on other sites

Guest guest

Hi

What an interesting post you have written. One item caught my eye and i wonder

if you can clarify something for me please?

You say " As someone who once said, once your oesophagus is gone, there are not

too many viable options to fall back on if your reconfigured esophagus/stomach

should fail. " what exactly do you mean by this?

Does the quote mean that like me swallowing problems continue more or less quite

similarly as before the ectomy? Because this seams to have happened to me. I

have swallowing problems with food getting stuck in chest, taking nearly an hour

to eat what little i do manage, food backing up into throat that gives me a

hacking cough (nothing to do with chest infection) when something goes down the

wrong way litterly. But what gets me is the pain that i get everytime that i

swallow something, a pain that starts in the chest and goes through to my back

and up into my jaw and quite paralises me. And yes i had the ectomy done through

the left side of my chest and abdomen and was left with about 2 inches of my old

" e " and my stomach made into a tube and pulled up into my chest. Does your quote

possabily mean that there are possabilities that this new stomach tube can fail

like an esophagus fails? Intriging. I am to see surgeon in clinic in Liverpool,

UK on July

12th and may mention this to him if i get the chance.Look forward to hearing

from you on this. 

from the UK

________________________________

From: RICHARD FRIEDMAN <cynmark24@...>

achalasia

Sent: Mon, June 7, 2010 3:22:25 AM

Subject: Re: RIchard

 

Hi Cara,

I tip my hat to you for going back to my original posts and to the other

research you have done. With tens of thousands of posts here, it has created a

body of knowledge that probably has no rivals. I posted contemporaneously back

in the summer of 2006 as the most effective way to describe what I was going

through in order to get the best feedback from other members, and to have it out

there for future readers to possibly read in order to have it available in order

to compare notes without having to break any new ground.

One of the things that ran through my mind back then, and please excuse me if I

did say it back then, but its worth repeating.  Probably anyone can go to any

number of doctors for additional opinions until they hear the one they want to

hear. How does hearing the one you want to hear make it right, when all the

others before have given you the opinion that you don't want to hear? 

Surgeons cut; that's what they do for a living. Anytime a surgeon tells you that

you don't need surgery, it goes beyond what they do to make a living, thus

making it an opinion rendered that is not self serving (let's not get involved

with the surgeon who gives an opinion knowing that they will not be the one who

operates).

While it still doesn't mean that they are right with what they said, it is still

worth noting. You still need to use your own common sense and make sure that you

review what all the doctors have told you and come to YOUR own conclusion. What

are the risks with what Dr. Dempsey left me?  If I don't have it done, maybe I

never will need to have it done, then I " win. "   Maybe I will need to have it

done anyway, and it will be in just a few years and the years waiting did

not made a difference, (then I am no worse off, and perhaps surgical techniques

will have improved.

The problem occurs when I am no longer a good surgical candidate and my

esophagus has gone really bad and the surgery must be done. Again, perhaps

surgical techniques will be much better than now. But, that is where the risk

lies.

As someone once said, once your esophagus is gone, there are not too many viable

options to fall back on if your reconfigured esophagus/stomach should fail.

Besides the surgery and recovery involved with an ectomy, this is a low

percentage concern of ectomy patients.  The ones I know have such great

attitudes that they probably do not have this thought cross their minds too

often...but they can speak for themselves.

In answer to your burping question, I do not create " little burps, " rather I

create massive sounding hiccups, and based upon the way I feel a moment later

(less pressure), the sound signals to me that food or liquid has passed thru the

LES to the stomach. Heads will often turn when people hear this. Fortunately

for me, they turn their heads too late to see from whose mouth the sound came

from, and I just go about my business with a straight face.

Cara, you are doing the right thing researching the Boards and speaking to many

doctors. Knowledge is power. I am sure that you will come to a decision that you

feel is right, and will never " turn around. "

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sun, June 6, 2010 1:31:40 PM

Subject: RIchard

 

I just went back and read all the posts that related to your 'ectomy

investigation and ultimate decision. I read what Dr. Dempsey told you. I

actually felt the relief that you must have felt when you were hearing the news

for the 1st time. Its all becoming clear to me how the decision process is made.

Its so individual, its so unique. There is no " right " or " wrong " way to go

unless of course it was a life threatening situation. Which in our case it

doesn't seem to be.

The BIG question to be answered for people who choose not to have an ectomy is,

" what will happen to my E if I do nothing? " . The fact that Dempsey didn't

believe that the E will perforate on its own is such promising information.

Obviously that was based on YOUR records and not mine so I will have to undergo

further testing and gather more information to determine the long term survival

of my E.

But I, like you, do not have a quality of life issue. I don't even have rotting

food in my E. Why take it out and run the risk of all these complications and

possibly death (albeit a low risk - but still enough to scare the hell out of

me).

So I just wanted to say that I have read, and read and read all of your posts

from that time period and I feel for what you went through. Its a scary time and

I am embarking on it now. But I what I have (that you didn't) is your knowledge

from the experience!! I am glad to know that there are other options, especially

if you are not suffering currently.

As an aside, I wanted to know if you do this too. When I eat, I am able to

create little burps (i call them inside burps) in my E that help get my food

through the LES. They are not real burps that come from the stomach (I lost that

when I got A) but rather little ones that I believe are form the E and that give

me relief and I feel the food go down. Do you experience this at all?

Cara

Link to comment
Share on other sites

Guest guest

,

The nurse at my GI doctor's office called me with results that she did not

understand. I had to ask pointed questions and she would not put me on with the

GI doctor. I am so upset right now. Anyway, she told me that the diameter of my

E was measured at 10.5cm!!!!!!!!!!!!!! Holy cow. I am stunned. Doubt I'll be a

candidate for a Heller now. This just plain sucks and my GI doesn't seem

concerned at all. He actually didn't understand why I wanted to talk with

him!!!!!!!!!!!

ok so now I know I need to go to Dr. Rice and Dr. Patti ASAP. They will do all

the testing there. I am wasting my time with amateurs...

BTW, what is the diameter of your E?

Link to comment
Share on other sites

  • 10 months later...
Guest guest

Thank for the warm welcome , and may blessings be with you also.

P.S. I don't really see it as giving up, more like waiting in this sandbox of

life, for my graduation into the 1st. grade :-}

>

> hi richard, you came to the right support group everyone here has

hep c .please dont give up there are many solution such as mr don has said

please talk to him more about your situation he is a doctor to all of us and a

good father and friend.please talk to him he can help many doctors out there

simply dont care maybe thats your doctor now, dont give up my friend my

brother in christ i love you jesus lover you we need to fight we are warriors!!

love karen,

>

Link to comment
Share on other sites

Guest guest

Welcome to the group, it is comforting to share with others who r in the same

boat/different Sea's, we all set sail, go thru storms, calming flat water

periods, drop dead sunsets, up n down riding the waves, we do our best not to

sink.. stay a float in search of a landing...I quit searching n just let it be

as i can not tx either, I am in it for the ride, the journey is what I seek, the

most comfortable journey that i can muster each day! u have docked at a great

ship, come a board mattie, get some wind in those sails.watch out for pirates

LOL! we r a bunch of loving well rounded characters!! Welcome!!

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...