Re: New to Group, heller myotomy on 11/08

[Guest guest]

welcome to the group, tracy!  it's quite a relief to finally get diagnosed

correctly, right?

i, too, was told i just had acid reflux and when an endoscopy didn't show

reflux, i was told my symptoms were due to " stress " ..

when the swallowing problems worsened i then had a barium swallow done.....then

a manometry test....my local GI then suspected achalasia and that's when i was

referred to the cleveland clinic for a 2nd opinion.  there i was confirmed to

have achalasia.

i, too, felt that a lap heller myotomy with a fundo wrap was the right option

for me.  i had that done three weeks ago today at the univ of mi.  i feel pretty

good.  recovery is going well.  i was in the hospital a total of 34 hrs.  and i

had a barium swallow test before getting discharged to ensure no leaks in my

esophagus. gas pains for about two weeks and i took just liquid tylenol for pain

meds.  i didn't like the prescribed pain med, loratab, as it made me nauseous! 

i do well with soft, mushy foods and have started to introduce a regular

diet....some solids.  there have been times that i feel the food getting " stuck "

but i think that happens when i eat too much, too quickly and more with solid

foods, so it may be too soon for solids.  so i will be conservative and stick to

a soft, mushy diet for another week..

i've not regurgitated foamy saliva and vomited since i had the surgery, so i

hope that is a good sign that surgery was a success.

good luck to you and ask away if you have questions.

eloisa

________________________________

From: tracy21261 <tracy212@...>

achalasia

Sent: Tuesday, October 28, 2008 8:14:11 PM

Subject: New to Group, heller myotomy on 11/08

Hi everyone!! I am so grateful to have found this site!! I was just

diagnosed at Beth Israel in Boston after being told I had acid reflux

by local GI. The fact that I was losing weight at a rapid pace (38 lbs

since July!) constant regurgitation of foamy saliva, vomitting, spasms,

etc. So off to Boston I went. thank god it is only an hour from home!So

grateful to finally have a diagnosis, and know it wasn't cancer or " all

in my head " Surgery seems to be the way to go after consults with

Thoracic surgeon and one of the top GI docs. To say I'm scared about

the prospect of surgery is an understatement, but I realize this can't

go on.Just hoping for some feedback from those of you who have had it

done, what to expect after surgery, pain, etc. Thanks to all in

advance!!

[Guest guest]

Hi ,

Welcome to the group.  I had all the same symptoms.  I had a laproscopic

Heller's myotomy on October 16.  The thought of surgery really scared me too, so

much I put it off for 6 months until my weight loss became severe.  My

experience at UAMS in Arkansas was very good overall.  I'm on a soft diet and it

is going great.  I'd do it again in an instant, because I was tired of not being

able to even drink water.  Of course, only time will tell how well the surgery

works long-term, but in the short term it feels great.  Coming out of surgery

and general anesthesia, I had " displaced " pain in my shoulder, and the morphine

they gave me took that away.  I had surgery on a Thursday morning,  the last

morphine shot I needed was on at 2 am, I was up and walking around at 6 am

Friday, I got out on a Friday afternoon, and I went back to work on Tuesday.  I

had some difficulty breathing deeply right after the surgery, probably because

they mess with the

diaphram, but it was not painfull.  That went away over a couple of days.  I

had a few pains over the weekend, but none were severe enough that I needed a

pain reliever....I could have used one but instead I took a hot shower.  I think

it was a gas pain, but it could have been a displaced esophogeal pain.  It was

like a dull E spasm.  I used an extra pillow on my side to provide comfort so I

could sleep at home. 

Overall, I feel great now, even on a soft diet.  Take time to figure out what

high calorie soft foods you can eat is my advice.  I started going to tropical

smoothie cafe for a 900 calorie peanut butter flavor protein shake.  I like the

liquid carnation instant breakfast way better than Ensure.

Good luck, and my prayers will be with you,

-- Jeff

 

________________________________

From: tracy21261 <tracy212@...>

achalasia

Sent: Tuesday, October 28, 2008 7:14:11 PM

Subject: New to Group, heller myotomy on 11/08

Hi everyone!! I am so grateful to have found this site!! I was just

diagnosed at Beth Israel in Boston after being told I had acid reflux

by local GI.. The fact that I was losing weight at a rapid pace (38 lbs

since July!) constant regurgitation of foamy saliva, vomitting, spasms,

etc. So off to Boston I went. thank god it is only an hour from home!So

grateful to finally have a diagnosis, and know it wasn't cancer or " all

in my head " Surgery seems to be the way to go after consults with

Thoracic surgeon and one of the top GI docs. To say I'm scared about

the prospect of surgery is an understatement, but I realize this can't

go on.Just hoping for some feedback from those of you who have had it

done, what to expect after surgery, pain, etc. Thanks to all in

advance!!

[Guest guest]

Thank you Eloisa and Jeff for responding to my post. I don't feel so

alone since I found this site! Trying to explain this condition is

difficult. I'm so tired of people saying oh I have something like

that too!! I feel like screaming!! I know they mean well, but... If

another person tells me to drink ensure!! I would if I could swallow

it without it coming back up 5 minutes later!!

I know I'm doing the right thing by having the surgery, but my

anxiety is still there nonetheless.In my 47 years this will be my

first big surgery other than c-sections, tonsils. Thanks for letting

me vent and for the words of encouragement.

>

> Hi ,

>

> Welcome to the group.  I had all the same symptoms.  I had a

laproscopic Heller's myotomy on October 16.  The thought of surgery

really scared me too, so much I put it off for 6 months until my

weight loss became severe.  My experience at UAMS in Arkansas was

very good overall.  I'm on a soft diet and it is going great.  I'd do

it again in an instant, because I was tired of not being able to even

drink water.  Of course, only time will tell how well the surgery

works long-term, but in the short term it feels great.  Coming out of

surgery and general anesthesia, I had " displaced " pain in my

shoulder, and the morphine they gave me took that away.  I had

surgery on a Thursday morning,  the last morphine shot I needed was

on at 2 am, I was up and walking around at 6 am Friday, I got out on

a Friday afternoon, and I went back to work on Tuesday.  I had some

difficulty breathing deeply right after the surgery, probably because

they mess with the

> diaphram, but it was not painfull.  That went away over a

couple of days.  I had a few pains over the weekend, but none were

severe enough that I needed a pain reliever....I could have used one

but instead I took a hot shower.  I think it was a gas pain, but it

could have been a displaced esophogeal pain.  It was like a dull E

spasm.  I used an extra pillow on my side to provide comfort so I

could sleep at home. 

> Overall, I feel great now, even on a soft diet.  Take time to

figure out what high calorie soft foods you can eat is my advice.  I

started going to tropical smoothie cafe for a 900 calorie peanut

butter flavor protein shake.  I like the liquid carnation instant

breakfast way better than Ensure.

>

> Good luck, and my prayers will be with you,

> -- Jeff

>

>  

>

>

>

> ________________________________

> From: tracy21261 <tracy212@...>

> achalasia

> Sent: Tuesday, October 28, 2008 7:14:11 PM

> Subject: New to Group, heller myotomy on 11/08

>

>

> Hi everyone!! I am so grateful to have found this site!! I was just

> diagnosed at Beth Israel in Boston after being told I had acid

reflux

> by local GI.. The fact that I was losing weight at a rapid pace (38

lbs

> since July!) constant regurgitation of foamy saliva, vomitting,

spasms,

> etc. So off to Boston I went. thank god it is only an hour from

home!So

> grateful to finally have a diagnosis, and know it wasn't cancer

or " all

> in my head " Surgery seems to be the way to go after consults with

> Thoracic surgeon and one of the top GI docs. To say I'm scared

about

> the prospect of surgery is an understatement, but I realize this

can't

> go on.Just hoping for some feedback from those of you who have had

it

> done, what to expect after surgery, pain, etc. Thanks to all in

> advance!!

>

>

>

>

>

>

>

[Guest guest]

,

I just had my operation last week and in spite of the painful

recovery; it has been so nice to actually eat a cup of yogurt and not

run to the sink to throw it all back up.

I really started suffering with achalasia about 3 years ago and it

took a long time for me to get the surgery because I was too fat.

Dr. Rosemurgy wanted me to be 170 lbs for surgery (basically not

obese). I was finally able to reach the weight and even moved my date

up by 3 weeks because the disease is taking such a psychological toll

on both my husband and me. As you know meals with others is torture

and stressful; I actually have a dance card of dinners from friends,

clients and family who are so happy that I can finally join them in a

meal.

The surgery itself was pretty simple. I did just post a notice to

the group about postop pain as it is worse for me this time in other

operations, but I have never given birth or had any other traumatic

injuries so in the grand scheme it is probably just another

recovery. The drugs they give you manage the pain so no suffering

and the ice cream and chocolat milk are great!

Just take deep breaths and keep thinking about all of the foods you

will get to enjoy once the healing is done.

Stephany

[Guest guest]

Welcome ,

I have a few suggestions for surgery,

If you wear glasses and NEED them, take them with you in the prep

area, and then they will be in recovery with you and they will/should

bring them with you when you move from recovery to a room. If you

leave them w/ a family member, you can't see and likely you will want

to, assuming you can't see w/o your glasses. They sometimes don't

let family in for a few hours and they are doing a lot of things and

you will want to see. Beware they may get lost also.

If you need supportive underwear, then I suggest a sports bra instead

of an underwire contraption. Also elastic waist items because you

may be puffy from the fluids etc.

Skip the makeup and most anything w/ vanity. As soon as you feel an

inkling of vanity they kick you out of the hospital.

Bring instant coffee, nicotine patch or any other medication if you

might suffer withdrawals. I was only offered decaf coffee and no one

was there to dig up caffeinated drinks. I also got a migraine and

wished and wished I had my medicine with me and didn't want to ask

for a prescription when I was there. They don't really notice that.

So if you have anything special bring it.

I brought my own meds that I take daily, easier, and probably cheaper

than having them administered through the hospital pharmacy. Keep a

bag or whatever right by you, not in the closet in the hospital so

you reach all these things in case no one is there.

Have easy things at home ready to eat. My surgeon seemed faster on

getting to real food than others, but stock up on yogurts, puddings

soups or whatever.

You might ask or take anyway some Colace, over the counter stool

softener starting the day before surgery and until you have been home

a few days. It takes a while to get things going and I learned that

trick with my second pregnancy. I wouldn't suggest laxatives

though. You might ask the doctor first. I think my gynecologist's

nurse suggested it to me years ago.

Many of us have the WORST spasm we've ever had the first week after

surgery. They may test you for heart issues. Which is fine, but

don't freak out that you are having a heart attack or stroke or

something. It is possible that is happening, but seems like many of

us have it. And it is bad. LIke the way earthquake aftershocks

lessen so are spasms after surgery sometimes the first is worse,

then less and less then another whopper thrown in. The doctors don't

mention this. Probably they want to know if you have such bad

spasms, so a heart attack isn't missed. But just don't totally freak

out if it happens. They gradually taper off and lessen over the

months. That first one seems to happen even while still in the

hospital and I felt it through tons of pain killers.

Remember that many people that have surgery don't keep posting here

often, so this group is more weighted toward those with ongoing

problems. Many are treated well and never heard from again.

My family and I met w/ Adam and his father Sunday evening. Adam, who

is 15 now, from New Mexico, had surgery at Cedars a year ago and was

back for his one year check up. He is doing wonderfully, ate tons,

including a stack of pancakes. LIke me, he has to have a glass of

water afterward, but he was saving room for more food later, as

teenagers do. I hope his father lets me know that the one year

checkup was good, they are probably travelling now. I'm 4 or 5 years

and am still able to eat as easily now as right after surgery. We

were both given less strict diets than other doctors seem to give

their patients, but follow your doctor's advice. We had to eat Mac n

Cheese, peas, and mashed potatoes BEFORE he would let us leave the

hospital. Some stay on clear fluids for a few days. Not sure why.

, let us know how you do. Chances are you will be awed at the

first swish of water hitting your stomach and will crave salads for

even 6 months.

Sandy in So California

>

>

> >

>

>

> > Hi ,

>

>

> >

>

>

> > Welcome to the group. I had all the same symptoms. I had a

>

>

> laproscopic Heller's myotomy on October 16. The thought of surgery

>

>

> really scared me too, so much I put it off for 6 months until my

>

>

> weight loss became severe. My experience at UAMS in Arkansas was

>

>

> very good overall. I'm on a soft diet and it is going great. I'd

do

>

>

> it again in an instant, because I was tired of not being able to

even

>

>

> drink water. Of course, only time will tell how well the surgery

>

>

> works long-term, but in the short term it feels great. Coming out

of

>

>

> surgery and general anesthesia, I had " displaced " pain in my

>

>

> shoulder, and the morphine they gave me took that away. I had

>

>

> surgery on a Thursday morning, the last morphine shot I needed was

>

>

> on at 2 am, I was up and walking around at 6 am Friday, I got out

on

>

>

> a Friday afternoon, and I went back to work on Tuesday. I had some

>

>

> difficulty breathing deeply right after the surgery, probably

because

>

>

> they mess with the

>

>

> > diaphram, but it was not painfull. That went away over a

>

>

> couple of days. I had a few pains over the weekend, but none were

>

>

> severe enough that I needed a pain reliever.... I could have used

one

>

>

> but instead I took a hot shower. I think it was a gas pain, but it

>

>

> could have been a displaced esophogeal pain. It was like a dull E

>

>

> spasm. I used an extra pillow on my side to provide comfort so I

>

>

> could sleep at home.

>

>

> > Overall, I feel great now, even on a soft diet. Take time to

>

>

> figure out what high calorie soft foods you can eat is my advice.

I

>

>

> started going to tropical smoothie cafe for a 900 calorie peanut

>

>

> butter flavor protein shake. I like the liquid carnation instant

>

>

> breakfast way better than Ensure.

>

>

> >

>

>

> > Good luck, and my prayers will be with you,

>

>

> > -- Jeff

>

>

> >

>

>

> >

>

>

> >

>

>

> >

>

>

> >

>

>

> > ____________ _________ _________ __

>

>

> > From: tracy21261 <tracy212@ .>

>

>

> > achalasia@grou ps.com

>

>

> > Sent: Tuesday, October 28, 2008 7:14:11 PM

>

>

> > Subject: New to Group, heller myotomy on 11/08

>

>

> >

>

>

> >

>

>

> > Hi everyone!! I am so grateful to have found this site!! I was

just

>

>

> > diagnosed at Beth Israel in Boston after being told I had acid

>

>

> reflux

>

>

> > by local GI.. The fact that I was losing weight at a rapid pace

(38

>

>

> lbs

>

>

> > since July!) constant regurgitation of foamy saliva, vomitting,

>

>

> spasms,

>

>

> > etc. So off to Boston I went. thank god it is only an hour from

>

>

> home!So

>

>

> > grateful to finally have a diagnosis, and know it wasn't cancer

>

>

> or " all

>

>

> > in my head " Surgery seems to be the way to go after consults with

>

>

> > Thoracic surgeon and one of the top GI docs. To say I'm scared

>

>

> about

>

>

> > the prospect of surgery is an understatement, but I realize this

>

>

> can't

>

>

> > go on.Just hoping for some feedback from those of you who have

had

>

>

> it

>

>

> > done, what to expect after surgery, pain, etc. Thanks to all in

>

>

> > advance!!

>

>

> >

>

>

> >

>

>

> >

>

>

> >

>

>

> >

>

>

> >

>

>

> >

[Guest guest]

>

> Bring instant coffee, nicotine patch or any other medication if

you

> might suffer withdrawals. I was only offered decaf coffee and no

one

> was there to dig up caffeinated drinks. I also got a migraine and

> wished and wished I had my medicine with me and didn't want to ask

> for a prescription when I was there. They don't really notice

that.

> So if you have anything special bring it.

>

> I brought my own meds that I take daily, easier, and probably

cheaper

> than having them administered through the hospital pharmacy. Keep

a

> bag or whatever right by you, not in the closet in the hospital so

> you reach all these things in case no one is there.

Sandy, you've given so much great advice. What do you take for

migraines ? I have Butalbital, generic for Fioricet, & it's not

working as well as it used to. Many thanks, Susie

[Guest guest]

I take Zomig. But the past few years the headaches have lessened.

Story here: My mother had migraines, by the time I was in high

school she was sick about one week a month, in bed, with them. I've

mentioned here before, how I grew to resent it, then feel guilty for

resenting it. That is one reason I advocate taking care of health

problems because of the effect on an individual's family. But by the

same token, I learned to fill in and do a lot of things while she was

ill.

I started getting migraines in my late 20's... and the fear came that

I would follow in her path. Through the years I tried biofeedback

(helpful)and started identifying triggers. Such things as chocolate,

caffeine, aged cheeses, alcohol. Birth control pills seemed to be a

cause, when I got married and quite the pills then the headaches

stopped for a while. But it seemed like there was something in my

body that would then find a new trigger. Sunlight reflections all

the normal things. I eventually went on antidepressants after my

first was born and would struggle with headaches. By then Imitrex

and others were on the market. They helped. But again, I took out

chocolate and other things, then the headaches would stop, then start

up again over a few months. At some point I was switched to a

generic Prozac. The headaches were so constant my doctor was going

to send me to a neurological psychiatrist because I was taking way

too much medication. Well that brought on tears, and a headache.

Finally I made the connection and stopped the generic Prozac and the

headaches stopped. Well then I became more irritable. I asked the

pharmacist, they are great resources and often know much more about

the drugs than the doctors. He suggested Lexapro and I've taken that

for about 4 years or so and few side effects.

I'm now 51, perhaps the change in hormones is helping but I seldom

get a headache now.

This is a boring story... I mention it because many here also suffer

from depression and seems like some antidepressants do help with

spasms and dealing with this disease.

Looking back, it is likely my mother's headaches were triggered by

birth control and chocolate and all the other common items. But she

suffered so much with them and she would try to just gut up and live

with them, then I would feel guilty because she was trying for us and

all around it was a huge guilt/resentment cycle. Hers tapered off

and disappeared once she started using ergotamine (an old migraine

medication, she inhaled,) and she realized she could control them

somewhat. She hadn't really quit the food triggers, didn't realize

how strong they were, I think. By about 42 ish she didn't get them

often at all.

Now, I do often wake with a headache, partially because of the short

stack of pillows I use because the saliva doesn't drain during sleep,

and that crinks my neck. But it is just a regular headache. I do

take Excedrin Migraine often.. probably addicted to the caffeine in

it. Caffeine is a trigger and also helps. Going w/o food often and

bright sun are still triggers, but I can take part of a pill and stop

the headache.

Good luck stopping smoking... have you looked at that antidepressant

drug that is supposed to help? My husband smokes, outside, and hides

it from our kids, but he really doesn't seem motivated to stop at

all. The patch will help him, he uses it if he is going somewhere

and he knows he can't smoke. But yet, he doesn't seem to try.

My mother smoked, later developed cancer and had several surgeries.

She was a red-head, fair skin, and always had trouble with her

incisions healing and getting infections. I think the smoking

contributed to that problem.

I know it is hard to quit. My father quit, and even 20 years later

he would still crave a cigarette. I have a distant relative that was

a very heavy alcoholic and smoker. He quit both cold turkey w/o any

help or AA. 25 years later he says the smoking was much harder to

quit than the drinking... and he was a hard core drinker.

If I may give you a nudge... even after surgery, the saliva doesn't

go down well, works on gravity. It seems more likely we achalasians

can develop bronchial infections and pneumonia. By the way, my

surgeon told me to get the pneumonia and flu shots as recommended.

Smoking can make those flu and cold germs even worse on us. It isn't

so much a problem if we are relatively young, but as we age and

develop other health problems, smoking may be part of the straw that

puts our health problems over the edge.

So that is my oft-told story about migraines. Biofeedback did help

some, mostly learning to drop your shoulders and stretch your neck to

relax those muscles... We tend to pull up our shoulders and hunch,

making the neck muscles more likely to cramp. But you don't hear

much about bio feedback anymore. I found it fascinating, she would

put those sensors on a few different places and I learned to actually

feel what a muscle felt like when it relaxed. You can say to people

to relax, but you don't know how or even really, what a relaxed

muscle feels like. One other trick, to relax your jaw muscle is to

slightly protrude your bottom lip (pout) and make sure your teeth

aren't touching and you can feel the muscles relax along your jaw to

your neck muscles. Otherwise if we are tense, having a headache we

start clenching our teeth and don't realize it.

Sorry so long...

Sandy in So Cal

Please get out and vote today even if for the " wrong " people. As I

tell my husband, he can't complain if he doesn't vote. (Often I

don't remind him though if I think he is voting opposite me.)

> >

> > Bring instant coffee, nicotine patch or any other medication if

> you

> > might suffer withdrawals. I was only offered decaf coffee and no

> one

> > was there to dig up caffeinated drinks. I also got a migraine

and

> > wished and wished I had my medicine with me and didn't want to

ask

> > for a prescription when I was there. They don't really notice

> that.

> > So if you have anything special bring it.

> >

> > I brought my own meds that I take daily, easier, and probably

> cheaper

> > than having them administered through the hospital pharmacy.

Keep

> a

> > bag or whatever right by you, not in the closet in the hospital

so

> > you reach all these things in case no one is there.

>

> Sandy, you've given so much great advice. What do you take for

> migraines ? I have Butalbital, generic for Fioricet, & it's not

> working as well as it used to. Many thanks, Susie

>

[Guest guest]

Oh, I forgot to finish the Prozac story. I went back to my doctor

after I stopped the generic one and asked for Lexapro.. it was newish

then, my doctor hadn't used it yet. Later, he told me he no longer

recommended his patients use generic antidepressant drugs, he has

seen a problem with the generics compared to the Brand names, this

was afew years later. I was kind of surprised, but he no longer

prescribes or recommends switching to generic on any drugs. The

pharmacist also told me they saw more problems with the generic

Prozac compared to the Brand one.

Sandy

> > >

> > > Bring instant coffee, nicotine patch or any other medication if

> > you

> > > might suffer withdrawals. I was only offered decaf coffee and

no

> > one

> > > was there to dig up caffeinated drinks. I also got a migraine

> and

> > > wished and wished I had my medicine with me and didn't want to

> ask

> > > for a prescription when I was there. They don't really notice

> > that.

> > > So if you have anything special bring it.

> > >

> > > I brought my own meds that I take daily, easier, and probably

> > cheaper

> > > than having them administered through the hospital pharmacy.

> Keep

> > a

> > > bag or whatever right by you, not in the closet in the hospital

> so

> > > you reach all these things in case no one is there.

> >

> > Sandy, you've given so much great advice. What do you take

for

> > migraines ? I have Butalbital, generic for Fioricet, & it's not

> > working as well as it used to. Many thanks, Susie

> >

>

[Guest guest]

Just ONE! more thing... about the migraine after the heller myotomy.

I had gotten a killer spasm, while still in the hospital, I think the

2nd night, not sure. It was the middle of the night, I was in great

pain, they ruled out heart attack, and from this group I kept saying

to give me nefidr(something). None of the knowledgeable doctors were

there, probably a resident or whatever. I don't take it normally,

but even through the morophone, I was in great pain. Well, that can

be a headache trigger, I learned from this group. And after I

knocked out then had the migraine headache for 2 days. You should

ask about taking migraine medication while on pain killers. I

remember I kept saying I had a headache, but they just thought I was

complaining and the drugs I was taking should have killed the pain.

> > > >

> > > > Bring instant coffee, nicotine patch or any other medication

if

> > > you

> > > > might suffer withdrawals. I was only offered decaf coffee

and

> no

> > > one

> > > > was there to dig up caffeinated drinks. I also got a

migraine

> > and

> > > > wished and wished I had my medicine with me and didn't want

to

> > ask

> > > > for a prescription when I was there. They don't really

notice

> > > that.

> > > > So if you have anything special bring it.

> > > >

> > > > I brought my own meds that I take daily, easier, and probably

> > > cheaper

> > > > than having them administered through the hospital pharmacy.

> > Keep

> > > a

> > > > bag or whatever right by you, not in the closet in the

hospital

> > so

> > > > you reach all these things in case no one is there.

> > >

> > > Sandy, you've given so much great advice. What do you take

> for

> > > migraines ? I have Butalbital, generic for Fioricet, & it's

not

> > > working as well as it used to. Many thanks, Susie

> > >

> >

>