Re: Now really puzzled!!

[Guest guest]

I feel for you!! I'm pretty much on same boat right now. Its all a waiting game.

Its very frustrating, especially when people around you don't know how we feel,

well at least that what I have run into. My friends and family try to but they

don't get the disappointments when Doctors don't have answer or can't fix us

right the first time.

Sent via BlackBerry by AT & T

Now really puzzled!!

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

, I feel for you!! I'm pretty much on same boat right now. Its all a

waiting game. Its very frustrating, especially when people around you don't know

how we feel, well at least that what I have run into. My friends and family try

to but they don't get the disappointments when Doctors don't have answer or

can't fix us right the first time. Thanks from So Cal

Sent via BlackBerry by AT & T

Now really puzzled!!

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

Wow , I'm sorry to hear that. I know how frustrated you must be. I hope

though that this is the answer for you and it gets fixed after all!

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, January 31, 2012 1:01 AM

Subject: Now really puzzled!!

 

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

,

 

It must be extremely frustrating. I have read that there is supposed to be a 90%

or better success rate with HM but from what I am seeing in this group, it

doesn't appear to be so. The more I read about it not working, the more I never

want to have this procedure!!!  Hang in there - we all know there isn't a cure

and we have to be stronger than normal at times when we really don't want to be.

I know you will have some relief soon enough!!!!

 

Kim A

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, January 31, 2012 12:01 AM

Subject: Now really puzzled!!

 

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

Kim...I hear you but u need to know this, I would have my son have the surgery

all over again because regardless of the spasms he is better and healthier now

than he was before surgery. He had a feeding tube in his nose for 9 months

before surgery. He couldn't enjoy a single meal with his family or friends. He

lost 60 pounds and had no energy. He was depressed that he couldn't live his

life like his teenage friends. He missed so much school he had to b tutored. He

couldn't drink water. After surgery he got his black belt in maui thai

kickboxing. He graduated with honors, he is driving, he is in college, he has a

girlfriend, he goes to amusement parks and can ride the rides. He has gained

back all the weight. He is living. Yes spasms suck. But they aren't everyday and

I am confident there is a medicine out there that will alleviate the spasms, and

we will find it. Bottom line, he'll take a spasms once or twice a week over the

hell he lived before surgery anyday. Yes we talk alot about symptoms before and

after surgery, we vent, cry, commiserate, that is one of the things that is so

great about this site. We support each other, educate each other, defend each,we

form bonds that are tough as nails, as only people with shared experience can

do. Each of us had to make a choice, as u do. I respect our right to choose. For

us there was no choice, this is life and my son is an active participant. For

that I am so grateful. Some folks live with diabetes, some folks live with

hypertension, some folks are blind, some deaf, some have chronic pain etc. We

are playing our hand dealt and maybe in the grand scheme of things we are

learning something that we need to know before moving on to the next plane. My

prayers are with u and u travel this path. Just know here u are not

alone...angela

Connected by DROID on Verizon Wireless

Now really puzzled!!

 

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

Most people who have successful surgeries or treatments don't come back to this

group. A total guess is that 90% don't come back. I've stayed in touch with

quite a few that were very active here at the time I had surgery and most are

still very satisfied, and don't check in here.

About spasms, I'm not sure if you just had surgery, but if so, the spasms are

often much worse right after surgery and taper off, much like earthquake

aftershocks.

I like to use a firm bread for spasms, like a bagel. I eat one and let it sit

there, no water or anything to wash it down. It seems like it keeps the

esophagus too firm to move (that is assuming it is the esophagus moving that is

the spasm pain) and the spasms stop. My spasms go in cycles, but never so bad

them made me roll on the floor. Skipping meals, can trigger them, as well as

stress. Antidepressants with a little antianxiety medication seems to help a

lot of us with spasms. Bread may not be for everyone. I can drink later and

get it all down, but filling up my esophagus seems to stop the spasm. They may

come back, if it is a day of spasms, then I take Tylenol PM and that will make

me sleep through them.

Really, don't judge the success of surgery based on the people here, most are

very successful and don't look back at this site. It is like childbirth, when

you are pregnant, you watch the new baby shows on TLC. Once you are over that

stage, you don't really have interest in those shows.

Sandy

>

> ,

>  

> It must be extremely frustrating. I have read that there is supposed to be a

90% or better success rate with HM but from what I am seeing in this group, it

doesn't appear to be so. The more I read about it not working, the more I never

want to have this procedure!!!  Hang in there - we all know there isn't a cure

and we have to be stronger than normal at times when we really don't want to be.

I know you will have some relief soon enough!!!!

>  

> Kim A

>

>

> ________________________________

> From: lindsayaus <lindsay_kite@...>

> achalasia

> Sent: Tuesday, January 31, 2012 12:01 AM

> Subject: Now really puzzled!!

>

>

>  

> One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

> Now I wait for an appointment to have a video manometry, then wait to go back

to doctor, then wait for for who knows what....more surgery to lengthen the

cut!!! Do I feel like I am on a merry-go-round that doesn't want to stop....you

bet I do!! How much waiting are we supposed to put up with until we can try to

get on with life?

> Getting extremely frustrated here!

>

>

>

>

>

>

>

[Guest guest]

Thank you . If I wouldn't have found this sight I would be a total mess!

Still so many unanswered questions but at the end of the day I want as much

normalcy as possible in my life!! I work twice as hard to be positive and remind

myself, like you said, there are so many others who have debilitating medical

issues, and also terminal medical issues and then I am grateful again. And then

I think about your son , who at a young tender ago, who should be having fun

being just a kid got this horrible disease and it makes me happy he is living

his life and healthy enough to do so. I went through that extreme depression

before I had my last treatment and I have some sleepless nights and get won but

overall most days I am happy I can even eat cream of wheat or butternut squash

soup!! It's amazing how people will say I don't know how you can live like

that - I couldn't do it! And I tell them with time you just get used to what

God gave you. In some way I

would say I eat healthier now because at times I have to be very careful how I

spend those calories but iIalso don't count them anymore! My friends and family

are jealous of that part of it .

I know with time it will get better, I wish my friends and family understood

this better but that will take time too!

Thanks for being so understanding.

________________________________

From: " kotacj@... " <kotacj@...>

achalasia

Sent: Friday, February 10, 2012 12:57 PM

Subject: Re: Now really puzzled!!

 

Kim...I hear you but u need to know this, I would have my son have the surgery

all over again because regardless of the spasms he is better and healthier now

than he was before surgery. He had a feeding tube in his nose for 9 months

before surgery. He couldn't enjoy a single meal with his family or friends. He

lost 60 pounds and had no energy. He was depressed that he couldn't live his

life like his teenage friends. He missed so much school he had to b tutored. He

couldn't drink water. After surgery he got his black belt in maui thai

kickboxing. He graduated with honors, he is driving, he is in college, he has a

girlfriend, he goes to amusement parks and can ride the rides. He has gained

back all the weight. He is living. Yes spasms suck. But they aren't everyday and

I am confident there is a medicine out there that will alleviate the spasms, and

we will find it. Bottom line, he'll take a spasms once or twice a week over the

hell he lived before surgery

anyday. Yes we talk alot about symptoms before and after surgery, we vent, cry,

commiserate, that is one of the things that is so great about this site. We

support each other, educate each other, defend each,we form bonds that are tough

as nails, as only people with shared experience can do. Each of us had to make a

choice, as u do. I respect our right to choose. For us there was no choice, this

is life and my son is an active participant. For that I am so grateful. Some

folks live with diabetes, some folks live with hypertension, some folks are

blind, some deaf, some have chronic pain etc. We are playing our hand dealt and

maybe in the grand scheme of things we are learning something that we need to

know before moving on to the next plane. My prayers are with u and u travel this

path. Just know here u are not alone...angela

Connected by DROID on Verizon Wireless

Now really puzzled!!

 

One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

Now I wait for an appointment to have a video manometry, then wait to go back to

doctor, then wait for for who knows what....more surgery to lengthen the cut!!!

Do I feel like I am on a merry-go-round that doesn't want to stop....you bet I

do!! How much waiting are we supposed to put up with until we can try to get on

with life?

Getting extremely frustrated here!

[Guest guest]

When I have spasms I can't eat. I will throw it back up but usually when I eat I

don't drink anythign with it or sometimes it won't stay down. I wait until my

food has settled down and there are no spasms then wash it down with water. The

things we do to make it work!!! Usually I don't suffer like most on this site

from severe spasms but they come and go. I usually only get chest pains in the

middle of the night, sometime a lot but they don't last for hours.

I believe my next treatment will be myotomy because from what I have learned,

the more dilations you have before myotomy, that could lessen the chance of the

surgery being effective as well as later dilations.

I think the fatigue gets me more than anything lately.

 

Kim A

________________________________

From: Sandy <toomuchclutter@...>

achalasia

Sent: Friday, February 10, 2012 4:13 PM

Subject: Re: Now really puzzled!!

 

Most people who have successful surgeries or treatments don't come back to this

group. A total guess is that 90% don't come back. I've stayed in touch with

quite a few that were very active here at the time I had surgery and most are

still very satisfied, and don't check in here.

About spasms, I'm not sure if you just had surgery, but if so, the spasms are

often much worse right after surgery and taper off, much like earthquake

aftershocks.

I like to use a firm bread for spasms, like a bagel. I eat one and let it sit

there, no water or anything to wash it down. It seems like it keeps the

esophagus too firm to move (that is assuming it is the esophagus moving that is

the spasm pain) and the spasms stop. My spasms go in cycles, but never so bad

them made me roll on the floor. Skipping meals, can trigger them, as well as

stress. Antidepressants with a little antianxiety medication seems to help a

lot of us with spasms. Bread may not be for everyone. I can drink later and

get it all down, but filling up my esophagus seems to stop the spasm. They may

come back, if it is a day of spasms, then I take Tylenol PM and that will make

me sleep through them.

Really, don't judge the success of surgery based on the people here, most are

very successful and don't look back at this site. It is like childbirth, when

you are pregnant, you watch the new baby shows on TLC. Once you are over that

stage, you don't really have interest in those shows.

Sandy

>

> ,

>  

> It must be extremely frustrating. I have read that there is supposed to be a

90% or better success rate with HM but from what I am seeing in this group, it

doesn't appear to be so. The more I read about it not working, the more I never

want to have this procedure!!!  Hang in there - we all know there isn't a

cure and we have to be stronger than normal at times when we really don't want

to be. I know you will have some relief soon enough!!!!

>  

> Kim A

>

>

> ________________________________

> From: lindsayaus <lindsay_kite@...>

> achalasia

> Sent: Tuesday, January 31, 2012 12:01 AM

> Subject: Now really puzzled!!

>

>

>  

> One of the first things I learned here was to choose a good surgeon. I

understood I had a good one, but now 11 weeks after my HM and still with trouble

swallowing, I am told the cut may not have been made long enough!! I thought

that only happened to inexperienced surgeons, not surgeons who are supposed to

be experts because they have done so many HM's!! I didn't think more surgery so

soon would be an option!

> Now I wait for an appointment to have a video manometry, then wait to go back

to doctor, then wait for for who knows what....more surgery to lengthen the

cut!!! Do I feel like I am on a merry-go-round that doesn't want to stop....you

bet I do!! How much waiting are we supposed to put up with until we can try to

get on with life?

> Getting extremely frustrated here!

>

>

>

>

>

>

>