Re: esophagectomy after a HM -- tube feeding

[Guest guest]

Many types of tube feeding, and many reasons for doing so. According to a

friend of mine, who is a nurse: MOST OF THE TIME IT IS TEMPORARY --> to support

nutrition, heath, hydration, giving TIME to make sane decisions. I'd have to

say, from my reading, that if all it's used for is pouring down commercial

preparations, the outcomes are not as good. But some people think it's simply

*easier* that way. My GIs all thought that Ensure was an adequate food

replacement, so the medical peeps aren't going to help anyone much here. . . .

Howsumevah: http://completetubefeeding.net/

I'd likely be in much better shape than I am if I'd known about this last year.

I'm not willing to define " normal " as a functional esophagus, though. Or even

just " eating. "

I think information, education, is our best defense against fear. And our best

methodology for dealing with doctors who may, or may NOT, know what's going on

with us.

And information/education also applies to finding those who are best able to

help. And sometimes -- for mothers of young children/babies who can't eat for

one reason or another -- it means fighting with the medical

establishment/wisdom, tooth and toenail. But to do that, YOU have to be

educated about options.

I promise ya'll, I'd be dead if I'd listened to my GIs. . . . And they were

neither stupid nor unkind men. They were simply inadequate to address MY issues.

There are a number of us here who would have done a helluva lot better, myself

included, if we *had* had feeding tubes, while working out what to do.

I so wish everyone the best outcomes *possible* -- but there IS no " good outcome

fairy " -- there is only ourselves.

xox

/WV

> >

> > Hi everyone,

> >

> > I am wondering if anyone out there who had a failed heller myotomy under

went an esophagectomy shortly after?

> >

> > I had a HM on 4/25. Things started out okay, but by week 2 fluids started

coming back up and shortly after everything stopped going down. I have spent

the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down

yesterday to have an endoscopy done. They did a dilatation and they but botox

in the muscle. It worked for about 10 hours, and I am already back to throwing

everything up. My surgeon really wants me to wait it out from about 6 months in

hopes my E will shrink back. I'm just not sure I can do 6 months of this. The

other option is an esophagectomy.

> >

> > I am not sure what to do, I don't really want another surgery but I just

don't see how my E is going to shrink if things are getting stuck there. I am a

little frustrated with my surgeon because he actually tried to say maybe it was

just my perception that it wasn't going past my E. I quickly told him that that

was not the case.

> >

> > I'm planning on doing this for another 2 weeks and then talking to him again

about the surgery if things don't improve. I would feel so much better if I

could just get more liquids in but not being able to drink is extremely

frustrating.

> >

> > Anyways, just wondering if anyone has experienced anything like this and

ended up having an esophagectomy.

> >

> > Thanks!

> >

>

[Guest guest]

Faith: imagine YOU have a patient, admitted through ER, dehydrated with

electrolytes so far out of balance that she's in the *cardiac* unit for five

days. The barium swallow that first night pretty much diagnosed achalasia as

far as me and the radiologist were concerned. The LES was in his estimation not

even a rat's tail: a mouse tail. I was getting four or five *drops* a minute.

Now imagine that same LES on Ensure. . . . I had lost 60 pounds in the previous

three months. The week I was admitted from ER, I was losing a pound a day.

The " dilation " they did, 15mm probe during the EGD lasted about three days, and

I was back to regurging *water*. . . . Their *follow up appointment* was a

MONTH later. Once I was their patient, my primary care docs wouldn't touch it.

They gave me IN the hospital a med I was allergic to; and continued to prescribe

several others of the same family. I don't *know* if I might have done better

on Nitro, because they refused to prescribe it. They DID offer to do another EGD

15mm " dilation " . . . .

I had to throw a fit to get the manometry performed. It took two weeks to read

it. Because the LES was too tight to get the probe through they thought it was

" inconclusive " . . . . It took another two weeks for them to decide I should go

the UVA " Digestive Health " -- and Digestive Health refused to make the apt.

They suggested that I try and call DH.

In trying to reach them, I got accidentally referred to the surgeon there. That

was a Thursday, and I had an appt. the next Tuesday. And he was ready to do

surgery, STAT. The day of that appt. I did my pre admission bloodwork, and

stress test. If I'd been *smart* -- I would have called office the day I

got home from the hospital the first time. Instead of hanging around the GIs

for ten VERY long weeks.

Me and my crockpot and blender just *barely* managed to keep me alive with the

aid of a power assisted Mountain Dew swallow learned from THIS group.

Personally, the thing I resented most was them pushing the potassium drip while

I was in the hospital, so they could do the EGD. And then after the four hours

of what I can only describe as *intense* physician caused pain, decided NOT to

do it after all, and didn't even ask for the four o'clock potassium levels. . .

.. I had sat in that bed, sobbing and clutching a bear a friend had sent, *for

four hours!* But hey, it was a Friday night -- better things to do than keep a

promise, eh? Thing is, *I* didn't have alarm bells go off at that, and I should

have. . . . For those that don't know (and pray you never learn) an IV potassium

drip is nasty. Even at normally prescribed levels -- wrecks an IV site pretty

fast. So you have one going, and one ready to go at all times.

Live. Learn. And maybe prevent others from going through the same thing?

xox

/WV

> > >

> > > Hi everyone,

> > >

> > > I am wondering if anyone out there who had a failed heller myotomy under

went an esophagectomy shortly after?

> > >

> > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started

coming back up and shortly after everything stopped going down. I have spent the

past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday

to have an endoscopy done. They did a dilatation and they but botox in the

muscle. It worked for about 10 hours, and I am already back to throwing

everything up. My surgeon really wants me to wait it out from about 6 months in

hopes my E will shrink back. I'm just not sure I can do 6 months of this. The

other option is an esophagectomy.

> > >

> > > I am not sure what to do, I don't really want another surgery but I just

don't see how my E is going to shrink if things are getting stuck there. I am a

little frustrated with my surgeon because he actually tried to say maybe it was

just my perception that it wasn't going past my E. I quickly told him that that

was not the case.

> > >

> > > I'm planning on doing this for another 2 weeks and then talking to him

again about the surgery if things don't improve. I would feel so much better if

I could just get more liquids in but not being able to drink is extremely

frustrating.

> > >

> > > Anyways, just wondering if anyone has experienced anything like this and

ended up having an esophagectomy.

> > >

> > > Thanks!

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

I've thought it was just plain out of their league. . . . And I've wondered

about the personality of those who choose gastroenterology as a specialty. . . .

Even did some googling on the subject it was SO striking to me. . . . They seem

like a personality type who wishes to do good, *IF* it's not TOO bothersome to

do so. The type of doctor who doesn't wish to be annoyed with after hours phone

calls, who wishes his weekends free, and Thursdays off for a good golf game. . .

.. Type A's, who *adore* crisis seem more likely to be ER docs, or surgeons.

So, if they'd *seen* the starvation as a crisis, they'd have had to ACT. And

they don't like *acting* -- so they didn't *see*. . . . The difference between

them and , the head of thoracic surgery was literally like night and day.

I'd noted the difference five years ago when I was living with a man who had a

ton of GI issues as a colorectal (Stage IV) cancer survivor. Aside from the

damage the surgery did, the radiation did massive additional damage, and he was

seeing GIs all the time. The only time things ever seemed to move forward was

when it reached crisis stage, and the surgeons took over. Alas, in the end, the

last time around was too late, and he didn't survive.

Too bad *we* don't have a choice of illnesses, eh? And ah, well.

xox

> > > > >

> > > > > Hi everyone,

> > > > >

> > > > > I am wondering if anyone out there who had a failed heller myotomy

under went an esophagectomy shortly after?

> > > > >

> > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids

started coming back up and shortly after everything stopped going down. I have

spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down

yesterday to have an endoscopy done. They did a dilatation and they but botox in

the muscle. It worked for about 10 hours, and I am already back to throwing

everything up. My surgeon really wants me to wait it out from about 6 months in

hopes my E will shrink back. I'm just not sure I can do 6 months of this. The

other option is an esophagectomy.

> > > > >

> > > > > I am not sure what to do, I don't really want another surgery but I

just don't see how my E is going to shrink if things are getting stuck there. I

am a little frustrated with my surgeon because he actually tried to say maybe it

was just my perception that it wasn't going past my E. I quickly told him that

that was not the case.

> > > > >

> > > > > I'm planning on doing this for another 2 weeks and then talking to him

again about the surgery if things don't improve. I would feel so much better if

I could just get more liquids in but not being able to drink is extremely

frustrating.

> > > > >

> > > > > Anyways, just wondering if anyone has experienced anything like this

and ended up having an esophagectomy.

> > > > >

> > > > > Thanks!

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I just read 's post and she's right; there is no " good outcome fairy " ,

only ourselves.  Her post is the essence of how to handle achalasia; be

armed with more information, keep asking questions, try your best to

keep an upbeat attitude (which can be really hard to do at times and

we all know that), and know that you are doing the right thing: fighting

for your life, your quality of life.

Good Post, .

Deborah

[Guest guest]

ine: let me put this gently and nicely -- surgery MAY be the next step. But

ANY doctor suggesting that a esophectomy is the FIRST surgery needs to have his

medical license yanked. THAT is totally inexcusable!!!!!!!!! To put it as

nicely as I am able: he doesn't know his arse from a hole in the ground.

I'd also bet a bunch of money, if I had any, lol!, that the so-called

" dilations " were done during an EGD, and used a 15mm probe. Insofar as

Achalasia is concerned, this is NOT, repeat, NOT a dilation. 15mm will last for

two or three days, no more. Standard pneumatic balloon dilation for Achalasia

involves a 30, 35, or 40mm balloon. And sometimes all three, applied several

weeks apart. Meds would never be expected to be a long term solution in any

case. Even when they do work, somewhat.

A Heller myotomy is not a new surgery, and I honestly haven't heard of one done

in the past ten years that was not done laparoscopically unless it was a second

or third one. It cuts the muscle at the bottom of the esophagus called the LES

(lower esophageal sphincter); it is usually accompanied by a wrap -- which is

taking the very top part of your stomach and wrapping it around the cut either

wholly or partially to keep the junction enough closed to prevent acid backing

up into the esophagus. There are five small scars, and recovery is fairly rapid:

weeks, not months.

PLEASE PLEASE PLEASE FIND A NEW DOCTOR!!

Read these boards, both current and past, and get yourself oriented. Learn the

language, become familiar with the histories. Ask as many questions as you

wish. There is a wealth of information here. And good luck!

/WV

>

> Hiya A sufferers

>  

> I also suffer from A, i have done since 2012. I have tried all medications and

dilatation twice which has been unsuccessful. My consultant told me that my only

other option now is surgery. When he started telling me about the procedure i

was quite shocked as i didnt expect to hear this. Removing part of my stomach,

removing my gullet and puting part of stomach there. He said the recovery would

be a long one and i will be left with quite big scaring. I have asked for

another apt as this was all too much to take in, so i went home and spoke to my

family. This is looking like my best option. I have had lengthy periods off work

due to weakness, tiredness and generouly feeling poop. Does anyone no if this

condition is classed as a disability. I am due to return to consultant this

month where ime prepared with a load of questions. Cant wait for the day when my

whole world doesnt resolve around this.

>  

> x

>

>

> ________________________________

> From: Deborah Lattimore <deborah_Lattimore@...>

> " achalasia " <achalasia > ave as

> Sent: Friday, 1 June 2012, 20:07

> Subject: Re: esophagectomy after a HM -- tube feeding

>

>

>

>  

>

> I just read 's post and she's right; there is no " good outcome fairy " ,

> only ourselves.  Her post is the essence of how to handle achalasia; be

> armed with more information, keep asking questions, try your best to

> keep an upbeat attitude (which can be really hard to do at times and

>

> we all know that), and know that you are doing the right thing: fighting

> for your life, your quality of life.

>

> Good Post, .

>

> Deborah

>

>

[Guest guest]

Hi ine

Where are you and why do you have to see a consultant?

What is your age and family.

Have you had a manometry test, which tests for Achalasia?

Dilations have to be larger than 16 mm to help.

A lot of info on the internet on a HM ( Heller Myotopy)

http://www.ctsnet.org/sections/clinicalresources/thoracic/expert_tech-5.html

http://www.bing.com/videos/search?q=Laparoscopic+Myotomy+video & mid=B88484421C32F\

997F372B88484421C32F997F372 & view=detail & FORM=VIRE4

I have classical Achalasia 5+ years, but now I MANAGE it. I find in MY case if I

have food in the E it causes a spasm. Drink a lot of warer, hot coffee or a can

of COLD Coke during the meal. You must several times a day clear out the E. CO2

from the Coke opens the LES, hold it in the E, then try to swallow it. If the

CO2 is cold works better before it disappears. Also butter makes food slip down

and opens the LES, medical report.

I hope this helps. Go back a year on this site, then you will find things that

may help you and dedide what would be best for YOU.

Ray CA OC 81 No HM, No dilations except a 16 mm during the first check ,No

medicine.

>

> Hello

>  

> I have been given dilatation which was unsuccessful twice. All medications

have also failed to help. What does an HM entail. I meant to write earlier that

i have had this condition for 3 years.

>

>

> ________________________________

> From: " weissf@... " <weissf@...>

> achalasia

> Sent: Friday, 1 June 2012, 21:23

> Subject: Re: Re: esophagectomy after a HM -- tube feeding

>

>

>

>  

>

>

> GET A NEW DOCTOR!!!! An echtomoy is rarely the first line surgery. Did you

ask him about a HM?

>

> Re: esophagectomy after a HM -- tube feeding

>

> I just read 's post and she's right; there is no " good outcome fairy " ,

> only ourselves. Her post is the essence of how to handle achalasia; be

> armed with more information, keep asking questions, try your best to

> keep an upbeat attitude (which can be really hard to do at times and

>

> we all know that), and know that you are doing the right thing: fighting

> for your life, your quality of life.

>

> Good Post, .

>

> Deborah

>

>

[Guest guest]

>

> Hi ine

>

> Where are you and why do you have to see a consultant?

~~~~~~~~~~~~~~~~

Ray, in the UK they have doctors called medical consultants instead of

" specialists. " (Similar to having solicitors and barristers instead of

" lawyers " ) Here's part of the wiki:

In the United Kingdom, Republic of Ireland, and parts of the Commonwealth,

consultant is the title of a senior physician who has completed all of his or

her specialist training and been placed on the specialist register in their

chosen speciality. Consultants accept ultimate responsibility for the care of

all the patients referred to them,[1] so the job carries enormous personal

responsibility.

A physician must be on the Specialist Register before he or she may be employed

as a substantive consultant in the National Health Service. This usually entails

holding a Certificate of Completion of Training in any of the recognised

specialities, but academics with substantial publications and international

reputation may be exempted from this requirement, in the expectation that they

will practice at a tertiary level. " Locum consultant " appointments of limited

duration may be given to those with clinical experience, with or without higher

qualifications.

Virtually all consultants in the UK are employed by the NHS, rendering the NHS a

virtual monopoly of career opportunities for the senior hospital physician

community in the UK, and apart from one or two specialites there are virtually

no opportunities for consultants to earn a living completely outside of the NHS.

A consultant typically leads a " firm " (team of doctors) which comprises

Specialty Registrars, and Foundation Doctors, all training to work in the

consultant's speciality, as well as other " career grade " doctors such as

clinical assistants, clinical fellows, Speciality Doctors, Associate Specialists

and staff grade doctors. They also have numerous other key roles in the

functioning of hospitals and the wider health service

http://en.wikipedia.org/wiki/Consultant_%28medicine%29

[Guest guest]

Hi xox

Thanks for the explanation. Seems complicated to me. As long as you see a REAL

doctor. In the US we have HMO's which are full doctors, but they refer you to a

Specialist, like a GI, Gastro type, etc.

In the US we also have Medicare at age 65. That is what is causing the big

budget deficit we have, at least part of it.

We are lucky now as we can go to any hospital or any kind of

doctor,GP or GI Specialist, if they accept Medicare, and without any references.

Medicare pays 80% of what medicare pays, so I have a supplement that pays the

rest, but costs $450 per month for two pople.

Never get a bill, it is great, but they take the $450 out of Social security, so

never see it.

I could probally get an HM or dilation at my request, any where. I have decided

to manage it on my own, I am healthy but at my age dscided not.

Ray CA OC 81 ( OC means Orange County, Between LA and San Diego, best weather

in the US)

> >

> > Hi ine

> >

> > Where are you and why do you have to see a consultant?

> ~~~~~~~~~~~~~~~~

>

> Ray, in the UK they have doctors called medical consultants instead of

" specialists. " (Similar to having solicitors and barristers instead of

" lawyers " ) Here's part of the wiki:

>

> In the United Kingdom, Republic of Ireland, and parts of the Commonwealth,

consultant is the title of a senior physician who has completed all of his or

her specialist training and been placed on the specialist register in their

chosen speciality. Consultants accept ultimate responsibility for the care of

all the patients referred to them,[1] so the job carries enormous personal

responsibility.

>

> A physician must be on the Specialist Register before he or she may be

employed as a substantive consultant in the National Health Service. This

usually entails holding a Certificate of Completion of Training in any of the

recognised specialities, but academics with substantial publications and

international reputation may be exempted from this requirement, in the

expectation that they will practice at a tertiary level. " Locum consultant "

appointments of limited duration may be given to those with clinical experience,

with or without higher qualifications.

>

> Virtually all consultants in the UK are employed by the NHS, rendering the NHS

a virtual monopoly of career opportunities for the senior hospital physician

community in the UK, and apart from one or two specialites there are virtually

no opportunities for consultants to earn a living completely outside of the NHS.

>

> A consultant typically leads a " firm " (team of doctors) which comprises

Specialty Registrars, and Foundation Doctors, all training to work in the

consultant's speciality, as well as other " career grade " doctors such as

clinical assistants, clinical fellows, Speciality Doctors, Associate Specialists

and staff grade doctors. They also have numerous other key roles in the

functioning of hospitals and the wider health service

>

> http://en.wikipedia.org/wiki/Consultant_%28medicine%29

>