Re: Re: Complications Years After Heller's Myotomy?

[Guest guest]

Hi Steve

Thanks for the understanding thoughts. I am in that 5-10% that still have

problems with pain. I had the ectomy with the gastric pullup in October 2004. I

had 7 dilatations since and still I have problems swallowing with pain. I can

swallow 3-4 spoonfulls of soft food then the pain and spasms kick in and cannot

swallow anything else for a minimum of 4 hours even liquid. I am on liquid pain

killers and despair that things will not get any better. Xmas is in a few weeks

and I am not looking forward to it at all. I am seeing a Gastro Specialist on

Thursday for a chat. I may have severe spasms in my little bit of Oesophagus

that was left in after the ectomy and it is this portion that is causing me

painfull spasms sometimes up to 15 times a day. What little motive I have for

swallowing flys out of the window when I try to eat. I do have a J-Tube for

overnight feeds and am 95% dependant on this. Some Xmas I'll have. Thanks for

voicing my inner feelings in your

post, now I know that I am not alone with my post ectomy complications. Thanks.

________________________________

From: steve <stevenakamichi@...>

achalasia

Sent: Monday, December 8, 2008 8:38:06 AM

Subject: Re: Complications Years After Heller's Myotomy?

Complications?

you betcha!

First there is always the possibility of perforations, and permanent

post-surgical conditions (i.e., PAIN), which you may discover that not

too many doctors will treat effectively.

Certainly, the fundoplication can reduce acid flare-ups; but its

function to 'strengthen' the slitted LES can be counter-productive. In

my case, it tightened the LES juncture up even more than it was

previously.

You will be left with a scarred, ______-ed up sphincter, which cannot

be undone.

Your options will be minimal.

Your GI will then probably refer you for more radical surgeries, which

are great ways for your GI to get rid of you and convenient methods to

supply bonus bucks for the surgeon.

Basically the GI approach is always for more surgery.

And since achalasia is a little understood condition, you may find

doctors know less about post-surgical conditions than you will. (ex:

once i was given a drug for 'neuropathic' PAIN. That was BS).

*Not ONE procedure I have had has helped my achalasia in any

significant way. In fact the fundoplication made the swallowing and

pain ( " spasms " ) worse. It isn't just the spasms, but persistent,

long-lasting pain.

The acid-reflux isn't nearly as bad is was when the first achalasia

symptoms hit me 30 years ago. Big deal. The trade-off for acid reflux

relief is chronic pain

And sorry---multiple Botox injections and calcium channel blockers

were absolutely USELESS. And acupuncture, and...

In a pool of people who have these operations, 80-90% receive some

form of relief. Not me.

Do you know how it is, after having some surgery or a procedure, when

you are asked to swallow something, and you feel the SAME? You are

told you feel so much better with time, but don't. You realize your

body has been raped for no perceived benefit.

Or when PAIN is just some unfortunate side-effect that these doctors

would choose to avoid acknowledging or even treating???

Bringing up possible 'complications' of a heller myotomy/fundo is

something I wished I had investigated further.

If you're like the majority, you should be fine. However there is a

small group of us resistant to all the standard treatments.

In those latter cases, with the heightened complication levels, and

'therapeutic surgical failures,' additional surgery is a risky

proposition.

Probably the worst complication you may experience is a lack of

understanding of what bothers you the most.

A better question you might ask is, " what if i end up in 5-10% group

that doesn't benefit from all of the traditional methods mentioned on

this forum? "

We don't hear much about that. Usually, the typical comments are: " Oh,

I fear going to the hospital [like that's some big worry...], " and

" After surgery, I feel so much better. Life is great. I can eat things

I haven't had for a long time. "

These things will not occur in all cases. Be prepared for that.

Sorry to rain on your day, but it's time for some pragmatic realism

>

> Hi,

> I had my Heller's Myotomy with Nissen Fundoplication in August 2003.

I have had

> relatively few problems since then, except for the occasional

esophageal spasm and

> occasional nausea (the bouts of nausea and dry heaving have greatly

reduced over time).

> Of course, I still drink plenty of fluids when I eat. About five

months ago, I started getting

> what I thought was reflux. The pain has progressively gotten worse,

and I am now 15

> weeks pregnant, so I thought it was pregnancy-related reflux. The

pain is at the base of

> my sternum---very strong----kind of resembles spasms, but not

really. It is a sharp

> ache.

>

> Last week I was in so much pain! I was working, and in less than 12

hours time I took 30

> Tums, a Prilosec, and a Zantac (the Prilosec and Zantac were taken

within two hours of

> each other). I finally got some relief, but I didn't feel well all

day. I talked to my midwife

> and explained to her what was going on, and I talked to a few of my

friends who are MDs

> to get their thoughts. Some are at a loss (since they are not GI

specialists, rather critical

> care specialists) , and others have suggested it could be a

complication from my surgery--

> --possibly my stomach is turning on itself? I don't know, they

don't know. They don't

> think it is reflux, and I have been referred to a GI specialist. I

was just wondering if

> anyone else has had problems years after their surgery.

>

> I am kind of nervous when I think about the possibility of having an

upper endoscopy

> while being pregnant---I don't want to hurt the babe.

>

> Thanks,

>

>

[Guest guest]

wrote:

> Thank You everyone for the feedback. I have always had spasms off and

> on, but this is different. I also don't think it has anything to do with

> increased pressure because of pregnancy because it started before I was

> pregnant and I am not that far along.

If it isn't from the achalasia or pregnancy you have a lot to consider.

It could be as your friend suggested, or esophagitis. It could also be,

lung, gallbladder, heart or activity related. If you have changed your

activity, such as starting a workout or pulling weeds it can lead to

chest pain.

notan

[Guest guest]

Steve wrote:

> A better question you might ask is, " what if i end up in 5-10% group

> that doesn't benefit from all of the traditional methods mentioned on

> this forum? "

>

> We don't hear much about that.

I suspect that of the members of this support group that have had

treatment there is probably more than 5-10% that would not be considered

successes. These people are more likely to look for help online than

those that were successes. Also, those that were successes are more

likely, I think, to move on because they are no longer looking for help.

Also, 5-10% is for the top medical centers. In some centers the rate is

probably more like 10-20%, or even 25% if one only tries dilatation. I

don't know how bad it gets for those who are the first patients treated

by doctors.

You also have to ask, what does success mean. It may mean less than

patients would like it to mean, and it means different things depending

on who did the report. What would be classified as a success at one

center may not be at another because they have a different standard.

Generally it means that in whatever way symptoms were scored before

treatment that after treatment the score was some amount better. A

patient could be a success and yet still be bothered by symptoms so that

the patient is disappointed with the success. Even with the best

outcomes one could still be disappointed that treatment wasn't a cure.

Other than to tell people that they should know the risks I don't know

what we should tell them about disappointments before surgery. I am open

to suggestions. I see it a bit like driving a car. Sure there are things

that could go wrong. Way to many to list here, you could even die in a

crash. Once you get past the small risk that something could go bad you

focus on getting to where you want to go and try to do it while

reasonably minimizing the risks. Here about treatment I think most of us

also acknowledge the risks and then decide that we want treatment, so

the focus become getting the best treatment possible. The focus quickly

moves from risk to getting treatment so there are many more messages

about getting good treatment.

You are definitely right though that everyone considering treatment

should acknowledge the risks. But then if they decide the risks don't

compare to the possibility of symptom improvement then it is time to

focus on getting the best treatment.

That leaves the few who decide the risks are too high and those that are

unconvinced. Any practical suggestions on what to say?

notan