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Hello everyone:

My name is Mike and I'm a 43 yoa male in Virginia and an achalasian.

I started having major troubles when I was 12 and had an (open)

Heller Myotomy when I was 13 in 1976. This was after 1 1/2 years of

dilation. Everything was relatively normal until recently, when I

began having more difficulties.

I had an edoscopy and it was determined that my lower esophagus

was " droopy " and causing food to " back up " as it worked it's way to

the stomach. I have been scheduled for an esophagectomy on the 14th

of Sept (Ivor- method) at UVA.

I would really like to talk with someone who has had this procedure

for the exact same reasons to get an idea of what I'm up against

insofar as the experience, pain, healing process, complications,

etc.

Likewise, if anyone out there want's any info from me regarding my

experiences (though my procedure was " ancient " - it did last 30

years) I'd be glad to share it.

Thanks in advance

Mike in Va

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  • 3 weeks later...

Ann,

Thank you very much indeed. That is much appreciated. I know I have turned a corner. I still have days when I wobble slightly but I have started to think of it as "getting a new oesophagus" and I am looking forward to getting rid of a degenerative condition and turning it into a rehabilitation condition. Or at least that's how I have decided to see it.

It has made an enormous difference knowing that others out there are also facing this. Trouble is with this condition is the fact you can feel so isolated and then when making tough decisions it really is practically impossible.

Thanks for your kind words.

You must have 100s of postings to get through if you are only on Sept 3rd.

STEVE

esophagectomy> > Hello everyone:> > My name is Mike and I'm a 43 yoa male in Virginia and an achalasian. > I started having major troubles when I was 12 and had an (open) > Heller Myotomy when I was 13 in 1976. This was after 1 1/2 years of > dilation. Everything was relatively normal until recently, when I > began having more difficulties. > > I had an edoscopy and it was determined that my lower esophagus > was "droopy" and causing food to "back up" as it worked it's way to > the stomach. I have

been scheduled for an esophagectomy on the 14th > of Sept (Ivor- method) at UVA. > > I would really like to talk with someone who has had this procedure > for the exact same reasons to get an idea of what I'm up against > insofar as the experience, pain, healing process, complications, > etc. > > Likewise, if anyone out there want's any info from me regarding my > experiences (though my procedure was "ancient" - it did last 30 > years) I'd be glad to share it.> > Thanks in advance> > Mike in Va>

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  • 4 months later...

I am SO sorry for your pain, did you have just Achalasia or more, who

did the surgery and where?

>

> I am only 33 and had a transhiatial esophagectomy in 2000. It is

> a very tough surgery to get through. Eating and swallowing is not

> normal at all after surgery. I have been suffering from severe

> dumping syndrome since my surgery, I have lost over 90 pounds and am

> deficent in 5 vitamins and minerals. My stomach, which is pulled up

> into my chest, is not working like a stomach should, the surgeons cut

> the nerve that controls stomach digestion so there is no stomach

> peristalsis or acid production at all. My GI doctor is at wits end

> and does not know what to do. I have an appointment with a

> nutritionist today to see if a change in diet can help, nothing has

> helped so far. There has been talk about possibly putting back in

> the feeding tube to supplement what I am eating. I am still working

> and getting on with daily life, trying not to exert myself, trying

> not to skip meals, when I do eat, I sit close to the bathroom in case

> I need to vomit or have diarrhea.

>

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  • 2 weeks later...

Hi,

I had my oesophagectomy in November 2006. Ia m still in the "recovery phase" and have been told it could take 18 months before nomal health has been restored. To be honest swallowing is not fantastic but I am much better off now than I was before the surgery. I don't have any pain or discomfort but my stomach is now a little slow at emptying so I tend to feel bloated all day. But, hey, at least food goes through.

STEVE

esophagectomy

hi there. i am a 37 yr old female who has had achlasia since i was 16. i've had 3 myotomies and a nissen fundoplication. i've also had several balloon dilitations and botox injections. i'm from the hampton roads area of virginia. i get severe esophogeal spasms that feel like i am having a heart attack. the only thing that relieves this is narcotic pain medication. i've tried nitrates, calcium channel blockers, etc. and nothing else works. it looks like the next step is an esophagectomy. i'm curious to see if anyone has had one and what their situation is now. do you still have pain? is your swallowing completely normal now? where did you have the surgery and how long was the recovery? any information would be helpful as this is my next step. thanks a bunch. kim

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Kim, your story is rearkably similar to mine. I'm 42, and have had

achalasia since i was 14, when the fist symptoms were heart-attack-

like pain. I tried all the normal procedures mentioned here (short of

a colonic interposition or a esophagectomy). Also tried NSAID,

calcium channel blockers, nifedine, botox, etc.

For 12 years, I have been on a chronic pain regimen, which although

doesn't eliminate the pain, does lessen it. Of all the things I've

tried, this approach has had the most benefits with the least risks.

The problem with this, though, is not a medical one, but a

political/social/personal issue. Since the DEA withdrew its policy on

doctor's use of opioid analgesic to treat chronic,non-cancer pain,

very few doctors will prescribe a " narcotic " . There's a War in

Doctors. And along with that, many social and personal stereotypes

about the use of opioids to treat pain.

In fact, yesterday on Fox news, I heard Mark Furman discussing that

there is absolutely no medicinal value for methadone; that it's only

used for treating heroin dependence. That is completely false.

Although methadone is used as a successful treatment of opiate

addiction, it used very widely as a pain analgesic. It is inexpensive

and has a long half-life, making it a good choice for the treatment

of chronic, intractable pain.

>

> Hi,

>

> I had my oesophagectomy in November 2006. Ia m still in

the " recovery phase " and have been told it could take 18 months

before nomal health has been restored. To be honest swallowing is

not fantastic but I am much better off now than I was before the

surgery. I don't have any pain or discomfort but my stomach is now a

little slow at emptying so I tend to feel bloated all day. But, hey,

at least food goes through.

>

> STEVE

>

> esophagectomy

>

> hi there. i am a 37 yr old female who has had achlasia since i was

16.

> i've had 3 myotomies and a nissen fundoplication. i've also had

> several balloon dilitations and botox injections. i'm from the

hampton

> roads area of virginia.

>

> i get severe esophogeal spasms that feel like i am having a heart

> attack. the only thing that relieves this is narcotic pain

medication.

> i've tried nitrates, calcium channel blockers, etc. and nothing

else

> works. it looks like the next step is an esophagectomy. i'm curious

> to see if anyone has had one and what their situation is now. do

you

> still have pain? is your swallowing completely normal now? where

did

> you have the surgery and how long was the recovery? any information

> would be helpful as this is my next step. thanks a bunch. kim

>

>

>

>

>

>

> ___________________________________________________________

> Now you can scan emails quickly with a reading pane. Get the new

. http://uk.docs./nowyoucan.html

>

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Hi Kim- Good to see another Virginia on here-Thats 3 now.lol I am in

Roanoke Virginia,a little ways from you. Welcome to the boards.

I read your story and I cant however help you about the esophectomy

but I wanted to ask about your myotomies.You said you had 3-how were

they done? My son who is 13 has had 2 the lapro and then open

myotomy.He just had his open a few months ago and is now doing

great.FYI his surgeon is one of the top and well known.He is at

Cleveland Clinic in Ohio Dr Rice.Many here have used him and

been pleased.

My son also uses nifediphine for his spasms and that works great for

him.He use to have them extremely bad. I know those spasms ar

horrible!Ask your DR about those.BY THE WAY, WHO WAS YOUR SURGEON

WHO DONE THE 3 MYOTMIES?

I am sorry to hear you are possibly facing yet another operation!!

There are several people here who have had that operation and Im

sure will give you lots of info.Actually Mike that is here is from

Salem Va thats only a few minutes from me and he just had his done a

few months back.You could find out about his surgeon I think it was

in North Carolina which is fairly close by.Just dont know about

credentials and experience so i would check on that.Maybe he will

read this and post to you about him.I do know he is doing good now

and back to work.

Well take care and I will look foward to your post.You will get lots

of help from this site.

Tonia -mom of

> >

> > Hi,

> >

> > I had my oesophagectomy in November 2006. Ia m still in

> the " recovery phase " and have been told it could take 18 months

> before nomal health has been restored. To be honest swallowing is

> not fantastic but I am much better off now than I was before the

> surgery. I don't have any pain or discomfort but my stomach is

now a

> little slow at emptying so I tend to feel bloated all day. But,

hey,

> at least food goes through.

> >

> > STEVE

> >

> > esophagectomy

> >

> > hi there. i am a 37 yr old female who has had achlasia since i

was

> 16.

> > i've had 3 myotomies and a nissen fundoplication. i've also had

> > several balloon dilitations and botox injections. i'm from the

> hampton

> > roads area of virginia.

> >

> > i get severe esophogeal spasms that feel like i am having a

heart

> > attack. the only thing that relieves this is narcotic pain

> medication.

> > i've tried nitrates, calcium channel blockers, etc. and nothing

> else

> > works. it looks like the next step is an esophagectomy. i'm

curious

> > to see if anyone has had one and what their situation is now. do

> you

> > still have pain? is your swallowing completely normal now? where

> did

> > you have the surgery and how long was the recovery? any

information

> > would be helpful as this is my next step. thanks a bunch. kim

> >

> >

> >

> >

> >

> >

> > ___________________________________________________________

> > Now you can scan emails quickly with a reading pane. Get the new

> . http://uk.docs./nowyoucan.html

> >

>

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Kim:

Hi, I'm Mike - also from Virginia. I saw where Tonia replied to your

message and mentioned me to talk to. Sorry I miised your posting

back on the 1st. I had an esophagectomy back in mid Sept. I went to

Dr. at UVA. He's done a TON of these, mostly for esoph.

cancer patients (same procedure - just different reason).

I can give you the complete " lowdown " on what to expect, and the

whole process. For the record, I have had acalashia for over 30 yrs

now (will be 44 next month). Had the myotomy (open) back in 1976 and

thought I was done with everything. Started having more problems

this past year and found that I was actually in " end stage

acalashia. " The esophagectomy was really my only option.

It's no cake walk but after a couple of months things start to

slowly get back to normal. I was off work 2 months and have lost a

little over 40 lbs (some of which I needed to lose anyway) but

everything goes down great. No " stuck " food, no indigestion, etc and

I'm on NO meds. Still have some digestion issues (little bit of

dumping, etc) and the surgery area has some numbness but I'm told

it'll be a year or so before those straighten out.

Please post any questions, concerns, etc and I'll be glad to try to

answer anything I can. It's a major surgery but so far I have no

regrets. I'm in SW VA so not terribly far from you. Let me know if I

can help.

Mike in Va

>

> hi there. i am a 37 yr old female who has had achlasia since i was

16.

> i've had 3 myotomies and a nissen fundoplication. i've also had

> several balloon dilitations and botox injections. i'm from the

hampton

> roads area of virginia.

>

> i get severe esophogeal spasms that feel like i am having a heart

> attack. the only thing that relieves this is narcotic pain

medication.

> i've tried nitrates, calcium channel blockers, etc. and nothing

else

> works. it looks like the next step is an esophagectomy. i'm

curious

> to see if anyone has had one and what their situation is now. do

you

> still have pain? is your swallowing completely normal now? where

did

> you have the surgery and how long was the recovery? any

information

> would be helpful as this is my next step. thanks a bunch. kim

>

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