Re: Having surgery 12/4/2001

November 30, 2001

Hi ,

I know exactly what you're going through. I'm not the emotional type, but it

almost makes me cry when I read some of these stories, because it's the same

thing I've been experiencing for the last 7 years. The spasms pains that I

experience are beyond painful, to the point where I have to take pain medication

for them, and still doesn't help at times. I have different types of spasms,

but the two most painful is the upper esophageal spasms, where the muscle

actually closes tight, and you can hear it creekin' when I try to pass water

through. These have lasted anywhere from 4 hours to 4 days. The other is

located at the Esophageal Sphincter muscle. Although they are relatively short

in spasm time, they are extremely painful. I wish I could tell you the right

drug to take, but I just don't have an answer. I have tried just about

everything out there. I have had 3 balloon dilations, 3 endoscopies, 2

myotomy's, and the big surgery: Heller Myotomy w/ Thoractomy. Doctors think

that I might have had an incomplete Myotomy, meaning they didn't cut up high

enough into the Esophagus. They also are thinking of trying the Botox here at

the VA Hospital in Portland, Oregon, but I think because I have Vigourous

Achalasia, it probably won't do anything for me. I just pray that someday, the

world of medicine will spend a little more time on this rare disease to make

life a little bit more managable for all of us. Good luck.

--

>>> lindwood@... 11/29/01 07:52PM >>>

I am having a myotemy with a partial wrap on Tuesday at Methodist

Hospital in Houston, Dr. Reardon, head of noninvasive

abdominal/chest surgery is doing my surgery. He does 90% of the

achalasia surgery at Methodist. He is affiliated with Baylor. I am

fortunate, in that I have been told that I do not have very much

dilation. He predicts that I will do very well. I sure hope he's

right!

I, like so many others, had horribly painful spasms for about the last 8

years. THey started out as very brief ones, a few seconds. I

discovered as they persisted, that I could relieve them by drinking

water, so I never took any medicine for them. In April of this year I

had several hour long " nutcracker " type spasms....HORRIBLE pain, just

like a heart attack. I also noticed in May that my swallowing all of a

sudden was really bad. I had to take care of my 87 year old mother all

summer, with her two surgeries, moving into two nursing facilities,

selling her house, garage sale, and so on...no time at ALL for me. I

just figured out that I had to drink a ton of water to eat. I was SO

scared...imagined the absolute worst, on top of all the stress of my

mom's condition. Finally, this fall, I had the endoscopy, manometry,

and 24 hour ph. Just this past week I had the barium swallow as a

precurser to my upcoming surgery. I was, of course, diagnosed

definitely following the manometry. What a process! But, I am relieved

to know it's fixable, and figure I am just going to bite the bullet and

get through it. I am a bit scared of the pain and hope that the drugs

are good enough and that they don't make me throw up. Gads, what a

thought to throw up on top of the surgery!!!! I hope that won't happen.

I am curious to know about other people's pain experience afterwards. I

am allergic to codeine, so I will take vicodin. I hope it's effective

enough to permit me to sleep. From reading most posts, it seems that

most people seem to feel better starting about day four? I will somehow

just get through to day 4....

My symptoms at this time involve choking at night a few nights a

week. I would try to sleep upright, but my back would freak out. So, I

eat very early and don't have ANYTHING else in the evening, and no water

before bed. I am eating mostly soups now. On Thanksgiving, I choked at

a buffet in a nice restaurant...that was choice! My poor family...we

had just started to eat. I felt like I ruined it for everyone, of

course, they were quite concerned about me. My food of

choice...oysters...slimey and slid right down. I have not lost any

weight...I can eat pudding and creamed soups and ice cream QUITE well.

I look forward to being able to eat salads and vegetables that are not

mushy again. I need to lose some weight, actually. Well, I guess that

will happen during the time right after my surgery. I go on doctors

orders for liquids starting two days prior to surgery to ensure that no

aspiration of food stuff will get into my lungs during surgery.

One interesting thing my doctor told me...he does the operation

with me " standing " position. I guess the table is tilted upright. He

likes this position because it does not have me bending my legs in

stirrups, therefore, he says less likelihood of blood clots after

surgery. He said it hurts his back a little bit to do it that way, but

he is pleased with the results for his patients. Post surgery he fills

my stomach, I guess, up with water and turns the table upside down so

I'm on my head to check the myotemy for leaks and pressure. He said

that this eliminates the need of a nasal tube prior to surgery for some

reason. That sounds good to me.

He also said that the surgery takes about two hours. He gives pain med

and numbing meds preop and feels that his patients have much better post

op pain tolerance as a result. I'm a little worried about the post op

pain, but I'll get through it, I'm sure. I can't wait to be on the

other side of this. I can't wait to start getting full nights sleep

again, and neither can my poor husband who has to listen to me choke!

Geez....this too shall pass. I'll be back in touch, but if any of you

have any other suggestions or advice, I'd appreciate hearing from you.

Oh yea...have any of you ever tried Reiki?

LInda

November 30, 2001

Dear : Reiki helped me in the beginning when it was light symptoms, but

Silva Ultramind exercises really work. Feel free to e-mail me directly if you

want more info. Warm regards, Elena

December 1, 2001

Hi ...so far as the pain goes.

I went through the Myotomy on Nov 4 of this year. Ref my Post " The

Morphine was nice. " of Nov 10 or so. You should get morphine on

demand for a day or so after the surgery which pretty much takes care

of any discomfort. After that, the doc gave me a quart of liquid

vicodin(Lortab) to slurp at will which helps alleviate pains from

laughing, coughing and sneezing. The faster you get your lungs back

up to full volume,the faster that discomfort will go away.

I do find it rather strange that you would be operated on

laproscopically from a standing up position. Even stranger is that

they would check your inner tube for leaks before waiting a day or

two for the swelling to subside. Anyway...whatever works.

For two weeks, I was on pastas, soups and squishy things but now..

I am up to a full regular feed thing. meat, raw veggies, etc.

Although the myotomy is not a cure, it facilitates food to get

down the drain instead of backing up. Anyhoo...your quality of

life will improve greatly and the need for sudden trips to the

restroom during dining periods will decrease dramatically. The

difference is like night and day for me and I'm sure it will benefit

you as well. Good luck , everything will be just fine and by New

Year's you'll should be all improved !!!

Please fill us in on all the details next weekend when you get back

home and rested.

Sincerely,

M.

December 1, 2001

Did you ever get queasy? Gads...that would be awful after this surgery.

December 1, 2001

Thank you so much for the encouragement. How long did you take off

work? My doc said I might be wanting to go shopping by the weekend???

I can't believe that! He said I'd be bored and wanting to do

something??? I told him I'd like to take off of work for three weeks,

and he said he didn't think I'd really want to do that...he said a lot

of his patients walk in a week later and feel pretty good??? I'll let

you know....but I'm taking this at my own pace! He told me I should

not have spasms afterwards. I hope not. THose are awful. I haven't

had any now for weeks on end, but this summer, right before I got bad in

the swallowing department I had some HORRIFIC ones that lasted an hour.

I never did anything for them but drink water. I sure hope they don't

come back like they have for some people who write in this group. DId

you have much dilation? Do you still have spasms? Can you sleep on one

pillow?

December 1, 2001

as for the operating standing up, I thought it was strange too, but he

said he does it because it lets your other organs " fall " with gravity

and it prevents blood clots. He said it's harder on his back, but

better for his patients. Did your doc give you pain meds and numbing

medicine pre surgery? How many days went by before you didn't take

lortab?

December 1, 2001

Yes, I'd like more information! Thanks.

December 1, 2001

I'm so sorry about your spasms. Mine are bad enough....4 hours???

Geez, I'll say a prayer for you now. I am somewhat worried that after

my surgery something weird will have happened to make them worse, but my

doctor tells me I won't have them anymore. I hope he's right. He tells

me that my esophagus is not dilated much at all, and that is a good

sign. I wish I could time travel to about a month from now...Can't go

under it, can't go over it, can't go round it, gotta go THROUGH it! As

I remember the rhyme from my youth, it fits now. I will let you all

know later in the week how it went. I am ready. I am not afraid right

now. I feel that I am doing the right thing..l just hope the drugs are

strong enough and that they don't make me throw up! That would be

awful. I have been queasy from pain meds once before and remember that

it was awful. But , that won't happen, cause it just won't happen,

right???

December 1, 2001

Yes, preop meds worked fine. didn't remember a thing.

After they cut off my morphine supply after 24 hours

after the operation I took the lortab for about 3-4 days.

I sill have a lot left.

I was home 48 hours after the operation and went back to

work the following week. Once again, good luck..everything

will be just fine.

M.

December 1, 2001

Amazing! I hope I'm that lucky! My husband is a writer and he's having

a book signing for a new book on Sunday...five days after my surgery. I

would love to be able to go and at least sit in a chair or hang

around...sounds hopeful! Sounds like maybe I could even eat some of

these h'ors d'oevres (or however you spell it) that I am planning for

the masses.

Did you take anything after the lortab? aspirin? tylenol? or was it

pretty much okay?

Oh how I can't wait to be in your shoes, telling others to go for it,

that it will be great, that everything will be okay. It seems like such

a long road. Heck, IT HAS BEEN a long road to get to this point. Let's

see, how many years did I think maybe I had done something to bring this

on myself, how long I thought I had cancer, and so on...all that

worrying. I feel like I've found a new " family " here...It's so amazing

to be amongst the company of other folks who describe the same things I

live with! We aren't FREAKS!! Up with Achalasians!!! lol

December 1, 2001

> Yes, I'd like more information! Thanks.

>

meaning....about reiki, I would like more information, and about the other

technique that you mentioned...I've never heard of it.

December 1, 2001

> Yes, I'd like more information! Thanks.

>

meaning....about reiki, I would like more information, and about the other

technique that you mentioned...I've never heard of it.

December 2, 2001

(and )

I, too, suffer from Vigorous Achalasia and, even though I've had the myotomy

(2 years ago), I still - very rarely, usually when I'm overly tired or

stressed - get the painful spasms, much as you describe. The only thing

that works for me is a prescription drug called Levsin. You're supposed to

take it under the tongue but I find that swallowing it with just the

smallest sip of water works for me.

Ask your MDs about it. It is a life saver, as far as I'm concerned.

Carol

Re: Having surgery 12/4/2001

> Hi ,

> I know exactly what you're going through. I'm not the emotional type, but

it almost makes me cry when I read some of these stories, because it's the

same thing I've been experiencing for the last 7 years. The spasms pains

that I experience are beyond painful, to the point where I have to take pain

medication for them, and still doesn't help at times. I have different

types of spasms, but the two most painful is the upper esophageal spasms,

where the muscle actually closes tight, and you can hear it creekin' when I

try to pass water through. These have lasted anywhere from 4 hours to 4

days. The other is located at the Esophageal Sphincter muscle. Although

they are relatively short in spasm time, they are extremely painful. I wish

I could tell you the right drug to take, but I just don't have an answer. I

have tried just about everything out there. I have had 3 balloon

dilations, 3 endoscopies, 2 myotomy's, and the big surgery: Heller Myotomy

w/ Thoractomy. Doctors think that I might have had an incomplete Myotomy,

meaning they didn't cut up high enough into the Esophagus. They also are

thinking of trying the Botox here at the VA Hospital in Portland, Oregon,

but I think because I have Vigourous Achalasia, it probably won't do

anything for me. I just pray that someday, the world of medicine will spend

a little more time on this rare disease to make life a little bit more

managable for all of us. Good luck.

> --

>

> >>> lindwood@... 11/29/01 07:52PM >>>

> I am having a myotemy with a partial wrap on Tuesday at Methodist

> Hospital in Houston, Dr. Reardon, head of noninvasive

> abdominal/chest surgery is doing my surgery. He does 90% of the

> achalasia surgery at Methodist. He is affiliated with Baylor. I am

> fortunate, in that I have been told that I do not have very much

> dilation. He predicts that I will do very well. I sure hope he's

> right!

>

> I, like so many others, had horribly painful spasms for about the last 8

> years. THey started out as very brief ones, a few seconds. I

> discovered as they persisted, that I could relieve them by drinking

> water, so I never took any medicine for them. In April of this year I

> had several hour long " nutcracker " type spasms....HORRIBLE pain, just

> like a heart attack. I also noticed in May that my swallowing all of a

> sudden was really bad. I had to take care of my 87 year old mother all

> summer, with her two surgeries, moving into two nursing facilities,

> selling her house, garage sale, and so on...no time at ALL for me. I

> just figured out that I had to drink a ton of water to eat. I was SO

> scared...imagined the absolute worst, on top of all the stress of my

> mom's condition. Finally, this fall, I had the endoscopy, manometry,

> and 24 hour ph. Just this past week I had the barium swallow as a

> precurser to my upcoming surgery. I was, of course, diagnosed

> definitely following the manometry. What a process! But, I am relieved

> to know it's fixable, and figure I am just going to bite the bullet and

> get through it. I am a bit scared of the pain and hope that the drugs

> are good enough and that they don't make me throw up. Gads, what a

> thought to throw up on top of the surgery!!!! I hope that won't happen.

> I am curious to know about other people's pain experience afterwards. I

> am allergic to codeine, so I will take vicodin. I hope it's effective

> enough to permit me to sleep. From reading most posts, it seems that

> most people seem to feel better starting about day four? I will somehow

> just get through to day 4....

> My symptoms at this time involve choking at night a few nights a

> week. I would try to sleep upright, but my back would freak out. So, I

> eat very early and don't have ANYTHING else in the evening, and no water

> before bed. I am eating mostly soups now. On Thanksgiving, I choked at

> a buffet in a nice restaurant...that was choice! My poor family...we

> had just started to eat. I felt like I ruined it for everyone, of

> course, they were quite concerned about me. My food of

> choice...oysters...slimey and slid right down. I have not lost any

> weight...I can eat pudding and creamed soups and ice cream QUITE well.

> I look forward to being able to eat salads and vegetables that are not

> mushy again. I need to lose some weight, actually. Well, I guess that

> will happen during the time right after my surgery. I go on doctors

> orders for liquids starting two days prior to surgery to ensure that no

> aspiration of food stuff will get into my lungs during surgery.

> One interesting thing my doctor told me...he does the operation

> with me " standing " position. I guess the table is tilted upright. He

> likes this position because it does not have me bending my legs in

> stirrups, therefore, he says less likelihood of blood clots after

> surgery. He said it hurts his back a little bit to do it that way, but

> he is pleased with the results for his patients. Post surgery he fills

> my stomach, I guess, up with water and turns the table upside down so

> I'm on my head to check the myotemy for leaks and pressure. He said

> that this eliminates the need of a nasal tube prior to surgery for some

> reason. That sounds good to me.

> He also said that the surgery takes about two hours. He gives pain med

> and numbing meds preop and feels that his patients have much better post

> op pain tolerance as a result. I'm a little worried about the post op

> pain, but I'll get through it, I'm sure. I can't wait to be on the

> other side of this. I can't wait to start getting full nights sleep

> again, and neither can my poor husband who has to listen to me choke!

> Geez....this too shall pass. I'll be back in touch, but if any of you

> have any other suggestions or advice, I'd appreciate hearing from you.

> Oh yea...have any of you ever tried Reiki?

>

> LInda

>

December 2, 2001

Thanks Carol, I'll keep this post in mind should I need help with spasms

post op. I hardly ever have them since my swallowing got so bad. I

think I've had one this month that lasted a few seconds. I drank water

and it stopped. I hear some folks mentioning that their spasms got

worse post op...i have been told that won't happen to me. We'll

see...As I see it from posts here, anything is possible...it's a roll of

the dice.

December 3, 2001

-- Good luck with your surgery! The surgeon I just went to see told

me that the myotomy is his favorite surgery to perform because it has such

good immediate results and really improves people's lives....

>From: lindwood@...

>Reply-achalasia

>achalasia

>Subject: Re: Having surgery 12/4/2001

>Date: Fri, 30 Nov 2001 21:09:40 -0600 (CST)

>

>I'm so sorry about your spasms. Mine are bad enough....4 hours???

>Geez, I'll say a prayer for you now. I am somewhat worried that after

>my surgery something weird will have happened to make them worse, but my

>doctor tells me I won't have them anymore. I hope he's right. He tells

>me that my esophagus is not dilated much at all, and that is a good

>sign. I wish I could time travel to about a month from now...Can't go

>under it, can't go over it, can't go round it, gotta go THROUGH it! As

>I remember the rhyme from my youth, it fits now. I will let you all

>know later in the week how it went. I am ready. I am not afraid right

>now. I feel that I am doing the right thing..l just hope the drugs are

>strong enough and that they don't make me throw up! That would be

>awful. I have been queasy from pain meds once before and remember that

>it was awful. But , that won't happen, cause it just won't happen,

>right???

>

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December 3, 2001

That's such a great thing to hear tonight...Thanks. I'm really planning

on going into the operating room as calm as I am right now...I'm ready!

December 3, 2001

, are you going to have a myotemy, too? when?

December 3, 2001

-- I have decided that the myotomy will be the next step for me, but

right now I can still get food down (often uncomfortably) if I drink ample

water with each meal, so I am trying to decide how soon I need to get the

surgery done (and I need to get up the courage to do so). It helps to hear

about others having it done and posting about their experiences.

Again, good luck tomorrow. We will all be thinking about you.

--

>From: lindwood@...

>Reply-achalasia

>achalasia

>Subject: Re: Having surgery 12/4/2001

>Date: Mon, 3 Dec 2001 06:36:57 -0600 (CST)

>

>, are you going to have a myotemy, too? when?

>

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December 3, 2001

,

What kind of myotomy are they performing? Are they just cutting the Sphincter

muscle or are they cutting all the way up to relieve spasms as well as

difficulty in swallowing? Where is this operation being performed?

--

>>> lindwood@... 11/30/01 07:09PM >>>