New member

Posted April 9, 2004 · April 9, 2004

Jan, I also got my surgery done at Cornell and saw Dr. Lambroza, but

he wasn't the one that diagnosed me. I was diagnosed by Dr. Henry

Erle who recommended me to Dr. Dennis Fowler for my surgery. Dr.

Lambroza performed the manometry test on me. Dr. Fowler had a few

residents/interns with him also and I had actually worried about the

same thing myself. But wouldn't they have to tell you who was

actually performing the surgery? I'm pretty sure that my mother

specifically asked him if he would be performing the surgery himself

and he said yes. Have you had a follow-up with your surgeon yet?

My last one was on Tuesday and he said I didn't need to see him

anymore. My eating has improved very much, but I do need to wash it

down with water. What diet did Altorki put you on post-op? Because

I was on liquids for the first week and soft foods for the month

after. I probably could've eaten more solid foods earlier, but I

wanted to play it safe and heal. I definitely feel a difference in

what I eat...like chicken and meat I feel I need to push down with

water more than I would something like scrambled eggs or mashed

potatoes. What have you been eating? A few people here who have had

the myotomy had problems with the gas getting up into their

shoulders. I didn't have that problem. Like I said, you should

discuss your concerns with the surgeon. What do you think of

Lambroza? How long have you had A or noticed the symptoms? and when

were you diagnosed?

I'm so thrilled to have a fellow New Yorker here!! To know

someone else with A that lives so close to me!! Where in NY do you

live? I live in Queens and work in Valley Stream. Keep me posted

on what your doctor says.

-- In achalasia , " janmweed " <janmweed@y...> wrote:

> Hi ,

> Thanks for writing! I had my surgery at Cornell by Dr. Nasser

> Altorki. My gastro doc, Dr. Lambroza referred me to him and he

said

> that he has done thousands of myotomies. My only worry is that he

> was constantly surrounded by a cloud of students and interns and

> residents and it is very possible that any one of them actually

> performed the surgery. My father is a surgeon (in Mississippi)

and

> he had some concerns after my surgery when I had a massive amount

of

> air left in my abdomen, because he does myotomies as well and had

> never seen that before. It just seems that some things don't add

up

> quite right with my whole experience. Supposedly, Dr. Altorki is

one

> of the best cardio-thoracic surgeons in the country...so what

> happened with me? Oh, and yes, I did get a wrap. Anyhow, thanks

> again for responding It makes me happy to know that there are

> other people out there dealing with this problem too.

> Congratulations on your surgery results! I only hope that one day

> I'll feel that way too

Posted April 9, 2004 · April 9, 2004

Hi Jan,

Welcome to the group. Debbi has as usual put it all in perspective.

I am one of the unlucky ones for who the myotomy was no a great success. I was also not told that there was even a possibility of failure so I was left feeling terribly resentful because I felt the surgeon had made it worse and would not tell me why.

I subsequently found the necessary information through a google search and also this group. Now that I know more about the condition and the odds I understand and can get some perspective on it all and I feel so much more accepting.

If doctors would only explain the disease and the odds it would help so much.

My oesophagus is badly stretched and I also have a diverticulum (pouch) halfway down my oesophagus which all complicates things a bit.

About 6 weeks ago I had a dilation and the gastroenterologist also emptied my oesophagus and I am now so much better. I have not regurgitated food since the dilatation nor have I any of the other symptoms. What I am aiming to do [and it is not proving easy!] is to prevent a build-up of food in my oesophagus. I am convinced that it is the build-up of food residue that makes the symptoms worse. I am eating mainly soft or liquid food that will not "stick" in the dilated bottom portion of my oesophagus.

I have now for the first time in ages felt hungry and had "the munchies" and a craving for chewy stuff such as biscuits and crusts - all food that may stick !!

A dilatation may be an option for you. I too can not face another op just yet, and this has given me the breathing space I need. It was not unpleasant - all I had was a sore throat and a bit of a cough for a day or two. The results were not apparent immediately either but after 6 weeks I can now say it was worth it.

If I had another Heller I would definitely choose another surgeon - and that will mean going to another city - but the other surgeon I believe has more experience.

There may still be an improvement ahead for you - so keep going and know we are here for you when you need us.

Joan

Johannesburg South Africajpearse@...

Re: New Member

Hi ,Thanks for writing! I had my surgery at Cornell by Dr. Nasser Altorki. My gastro doc, Dr. Lambroza referred me to him and he said that he has done thousands of myotomies. My only worry is that he was constantly surrounded by a cloud of students and interns and residents and it is very possible that any one of them actually performed the surgery. My father is a surgeon (in Mississippi) and he had some concerns after my surgery when I had a massive amount of air left in my abdomen, because he does myotomies as well and had never seen that before. It just seems that some things don't add up quite right with my whole experience. Supposedly, Dr. Altorki is one of the best cardio-thoracic surgeons in the country...so what happened with me? Oh, and yes, I did get a wrap. Anyhow, thanks again for responding It makes me happy to know that there are other people out there dealing with this problem too.Congratulations on your surgery results! I only hope that one day I'll feel that way too > > Hi.> > My name is Jan and this is my first visit to the site. I'm 23 and > > live in NYC and I'm 3 1/2 weeks post-op from a Heller Myotomy. I'm > > feeling pretty depressed today, because my eating is not getting > much > > better. I would say I'm improved, because food actually goes down > > after a little while and I've been able to stablize my weight which > > had been plummetting for the past year, but eating is still painful > > and some food still comes up almost every time I eat. I guess I > was > > wondering if it gets any better over time or is this it? > > Surgery was awful and I really don't want to go through it > again...I > > had lots of air trapped in my abdomen which caused excruciating > > shoulder pain, and I've still got a numb spot above my belly-> button. > > I am also having what feels like sharp muscle pain below one of my > > incisions...which I'm guessing is just a cut muscle trying to > heal. > > I just had such high hopes for the surgery and was under the > > impression that I would feel completely normal again, but I don't > at > > all. I'm still reminded every time I put something in my mouth > that > > I have this awful disease. Sorry to vent, but I feel so alone > > because none of my friends or family had ever even heard of > achalasia > > before I was diagnosed and I hate having to explain it over and > over > > to everyone who asks what's wrong with me when I cringe when I'm > > eating. > > Jan

Posted April 9, 2004 · April 9, 2004

I actually didn't have much limitation on diet. I could eat anything

soft for two weeks and then I could eat whatever I wanted after

that.

I'm just going to give it some time and see how things go. I live

and work in Manhattan and really love it. I'm pretty new to the area

(7 months) but I've really taken to it!

I did have my follow-up, but it was really soon after surgery and

almost too soon for me to really tell if I was supposed to have a big

change in how I was eating and everything. I think I'm going to call

his office on Monday and schedule another appointment. I think he

needs to know that it's not going so well for me. I was diagnosed

about two months ago and I have had symptoms for a year and a half.

My doctors kept telling me that it was acid reflux and I kept

thinking that there was no way! I knew it had to be something bigger

than that. It was kind of a relief when I finally found out it had a

name. I thought Dr. Lambroza was ok. My manometry really hurt

though. I had actually had it done a couple of weeks before when I

was home in Mississippi for Valentine's weekend. Judging from my

symptoms, my dad thought it would be a good thing to explore.

Unfortunately, the hospital lost my test results so Dr. Lambroza had

to do it over again. When Dr. Lambroza did it, I remeber being a

little weirded out by the tube he used, because it looked like one

that wasn't disposable. The hospital had used a disposable one and

had numbed my nose and throat first, but he didn't do either. but

that is all water under the bridge, I suppose.

thanks for your support.

Jan

> > Hi ,

> > Thanks for writing! I had my surgery at Cornell by Dr. Nasser

> > Altorki. My gastro doc, Dr. Lambroza referred me to him and he

> said

> > that he has done thousands of myotomies. My only worry is that

he

> > was constantly surrounded by a cloud of students and interns and

> > residents and it is very possible that any one of them actually

> > performed the surgery. My father is a surgeon (in Mississippi)

> and

> > he had some concerns after my surgery when I had a massive amount

> of

> > air left in my abdomen, because he does myotomies as well and had

> > never seen that before. It just seems that some things don't add

> up

> > quite right with my whole experience. Supposedly, Dr. Altorki is

> one

> > of the best cardio-thoracic surgeons in the country...so what

> > happened with me? Oh, and yes, I did get a wrap. Anyhow, thanks

> > again for responding It makes me happy to know that there are

> > other people out there dealing with this problem too.

> > Congratulations on your surgery results! I only hope that one

day

> > I'll feel that way too

Posted April 9, 2004 · April 9, 2004

Joan Wrote

My oesophagus is badly stretched and I also have a diverticulum (pouch) halfway down my oesophagus which all complicates things a bit.

About 6 weeks ago I had a dilation and the gastroenterologist also emptied my oesophagus and I am now so much better. I have not regurgitated food since the dilatation nor have I any of the other symptoms. What I am aiming to do [and it is not proving easy!] is to prevent a build-up of food in my oesophagus. I am convinced that it is the build-up of food residue that makes the symptoms worse. I am eating mainly soft or liquid food that will not "stick" in the dilated bottom portion of my oesophagus.

I have now for the first time in ages felt hungry and had "the munchies" and a craving for chewy stuff such as biscuits and crusts - all food that may stick !!

Hi Joan,

As I said before, we seem to be at similar stages and I totally agree with being very cautious about what I eat. I started having a gastroscopy every two years whether I wanted to or not. It's something I feel I have to do for my own protection. After that terrific cleaning, I'm still careful as I know it's just going to pile up again. What scared me and made me realize I needed to only eat soft foods was when I brushed my teeth in the morning and regurgitated black grainy residue. (Anyone else?) After learning it was blood, I have been very careful. It still happens every few months, but when you have a pouch like you and I do, it's scary. I also never drink anything acidic. Drinking tons of milk and water must help because I'm been managing quite well. Every once in a while I do cheat and have soggy popcorn, but other than that, I eat as healthy as possible.

I have a question,

Does anyone understand this famous Atkin's diet? I read a little about it this morning, but it sounds like they want you to eat fattening foods. I found it strange that you can have bacon, eggs, sausages, cheese but you can't have coffee? What, no coffee? No fruit? The only reason I ask is because my daughter told me the new trend is not to bring a lunch to High School, only an Advantage Bar from Atkin's. At $3.00 per bar, I thought I'd read up a bit.

Thanks for the yoga links, Boston Pete

Happy Easter Everyone,

.

Posted April 9, 2004 · April 9, 2004

In a message dated 4/8/2004 9:29:26 PM Eastern Daylight Time, jneal@... writes:

Seems there's many named Jan in this room with A....hmmm...Jan in Western KY

My thinking exactly!

Great Jans think alike!

Hmmm.........

Jan in NORTHERN KY

Posted April 12, 2004 · April 12, 2004

Welcome Tony,

Are KBR recruiting in Kuwait or are you working for someone else.

Platform Medic

01224 402000

Ext 3175/3176

" Tony Mooney "

<acmedic32@hot

mail.com> cc:

Subject: New

member

12/04/2004

09:41

Please respond

to

RemoteSupportM

edics

Hello to All,

Glad to have found this group. My name is Tony Mooney. I have just

started to work in Kuwait. I had previously been working in the Gulf

of Mexico on a drillship for Global SantaFe through Acadian

Industrial Med Services. Nice to find a site for remote medics.

Tony

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Posted April 12, 2004 · April 12, 2004

I just wanted to say thank you to everyone for making me feel so

welcome! and for all of the advice that only fellow A sufferers

could offer. thanks,

Jan

Posted April 13, 2004 · April 13, 2004

Welcome Jane and so glad you are waiting.

The pressure they put you all under is unbelievable and in UK they aren't

even mandated for school.

Stay strong and research research

You'll got lots of support here and info too.

All vaccines are dangerous, not just mMR

Sheri

At 09:52 PM 04/12/2004 -0000, you wrote:

>hi

>my name is jane I have six children aged 18, 12, 8, 5, 3 and eight

>weeks. I live in the uk.

>

>I started having doubts about vaccinations when the mmr

>controversery came out. my five year old has not had his pre-school

>booster still unsure. my three year old daughter, Willow,who has

>spina biida, has not had her mmr, I keep getting bugged from health

>visitor over this. My eight week old baby has been sent an

>appointment for her first jabs for tomorrow. this was posted to me

>on Saturday which I am unable to cancel until tomorrow. also an

>appointment for willows mmr was put in too.

>I had never thought of vaccinations before the mmr hit the

>headlines. I just went along with jabs thinking I was been a " good

>mother " by protecting my children, now i feel unsure about all

>vaccinations, I shall wait until I have researched more before any

>more jabs are given to my children.

>jane

>

Posted April 13, 2004 · April 13, 2004

Hi Jane,

Good to see you here! Congratulations on the new babe - what's her name?

)

Love, light and peace,

Sue

" It is not unfair to conclude that medicine is the only branch of science

that has based its structure on opinions and suppositions rather than on

laws and principles. " ~ Vithoulkas, " The Science of Homoeopathy " .

§ new member

§

§ hi

§ my name is jane I have six children aged 18, 12, 8, 5, 3 and eight

§ weeks. I live in the uk.

§

§ I started having doubts about vaccinations when the mmr

§ controversery came out. my five year old has not had his pre-school

§ booster still unsure. my three year old daughter, Willow,who has

§ spina biida, has not had her mmr, I keep getting bugged from health

§ visitor over this. My eight week old baby has been sent an

§ appointment for her first jabs for tomorrow. this was posted to me

§ on Saturday which I am unable to cancel until tomorrow. also an

§ appointment for willows mmr was put in too.

§ I had never thought of vaccinations before the mmr hit the

§ headlines. I just went along with jabs thinking I was been a " good

§ mother " by protecting my children, now i feel unsure about all

§ vaccinations, I shall wait until I have researched more before any

§ more jabs are given to my children.

§ jane

§

Posted June 8, 2004 · June 8, 2004

Hi Kris, welcome to the group!

I just posted some info on this a couple hours ago... I'll paste it in here again for you.

If the nifedipine doesn't help you, I would suggest either NuLev (an anti-spasmotic) or some sort of low-dose antidepressant (which helps to correct the brain's hyper-sensitivity, which can be a cause of NCCP.)

I hope this is helpful to you!

Debbi in Michigan

Here's the info I posted earlier:

Chest pains, heartburn, acid reflux, spasm pains, NCCPs.... what the heck is all of this stuff anyway????

(aka: Debbi's Dissertation on Dysfunctional Dysphagia Diagnoses)

Here's some info I've put together on differences between "heartburn" and the "chest pains/spasm pains" that are related to achalasia. The official medical term for the "spasm pain" is "NCCP" -- Non Cardiac Chest Pain. There are multiple terms used for "heartburn" including: acid indigestion, acid reflux, GERD/GORD, etc.

In my pre-achalasia days, I would have "indigestion" once in a while (after a particularly large, fatty, acidic meal, etc.), maybe once or twice a year. I would have that nasty acid taste in my mouth when I burped, and a hot/burning sensation in the area of my breastbone. While not particularly comfortable, it wasn't an excruciating, debilitating pain, and taking some Tums or other antacid would neutralize it and both the taste and the discomfort would go away.

When I had my first NCCP, I had been having problems swallowing for a few years but hadn't yet been diagnosed with anything, and I had no clue that the pain was related to my swallowing problems. I thought the pain was some gawd-awful gas pains -- felt like something was stabbing me from the inside out! The pain seemed to start in the ribs and almost squeeze my chest with searing pain that seemed to shoot up into my neck, too. (note: everyone can experience NCCPs in varying degrees and in various parts of the body, including stomach, chest, shoulders, neck, jaw, tongue, and mouth.) I lived alone at the time, and I drove to a convenience store and bought three rolls of Rolaids and ate two whole rolls. That didn't have any effect at all, and it took a couple hours for the pain to go away.

Another time, I have a distinct memory of standing in the kitchen holding onto the countertop and just WAILING at the top of my lungs because it hurt so bad, and my knees buckling from the pain. My wailing turned into one big repetitious prayer: "Please, Lord, Please, Lord, Make It Stop, Lord, I Can't Take It Anymore, Lord, Please, Lord, I Need You To Please Help Me!" over and over and over again while sobbing. This was almost a decade ago and I don't know how long it went on, but I'm thinking that it was well over an hour of that constant wailing. Boy, those were the days, huh? ;o)

For people whose doctors believe that NCCPs are an "atypical" (not normal) symptom for achalasia patients, point them in the direction of this informal poll here on our group: achalasia/surveys?id=1037310

The poll is now closed, so who knows how many more would be added to it if it were still accepting votes. If you scroll down to the end, 38 people reported that they have these "spasms", and 5 people reported that they don't have spasms. So out of 43 people who answered the poll, 88% have spasms and 12% don't have spasms. Doesn't sound like a "rare" or "atypical" symptom, does it?

In another poll ( achalasia/surveys?id=1011383 ) of people who went to the Emergency Room due to extreme chest pains, 2 were given intravenous Valium, 3 were given Demorol or other narcotic injection, and 7 were given no treatment whatsoever.... isn't that sad? 58% of the people who were in such severe pain that they went to the E.R. were given NO TREATMENT at all!!! That is SO unnecessary!!!!

Here's some info that I copied from an old post of mine -- if your doctor will bother to do some simple web searches, he'll see that calcium channel blockers, nitro, and anti-depressants are all documented ways to treat NCCP in people with esophageal disorders! Maybe if you print it out and show it to him, he'll be willing to offer you some help in dealing with this.

=============================================

Here's some basic info that I've posted in the past -- different things work for different people, so it's basically just an experiment to find what works for your situation.

Here are some different coping methods to try:

-- Swallowing something warm or something cold

-- CCB medication (calcium channel blockers) -- I prick the shell of a nifedipine capsule and squirt it under my tongue. It absorbs into the bloodstream under the tongue (this is called a sub-lingual medication, meaning under-tongue) and relaxes smooth muscle tissue (which is what the esophagus is made up of.) unfortunately, it can also lower your blood pressure (usually only a problem if you already have low BP to begin with) and cause a headache afterwards

-- Nitroglycerin medication -- works in much the same way as the CCB mentioned above, and can also be taken sublingually for fast relief.

-- Certain anti-depressant and anti-convulsant medications -- some people don't have NCCPs when on these types of medications, believed to be a function of the medicine's effect on serotonin in the brain (antidepressants such as Nortryptaline, Amitryptaline, Imipramine and Trazodone have been studied; Neurontin is being studied in a similar way for "phantom limb pain" in amputees, etc.)

-- L'Argnine supplements -- some people have found these relieve NCCP symptoms

-- If symptoms are debilitating and none of the methods above help, you may need a narcotic pain reliever, but definitely try all the options above first, b/c if you're on narcotics you can't drive, work, etc., and the vast majority of people can find relief in a way that doesn't involve narcotics

=============================================

In the last few years I've taken three different drugs that affect serotonin (one of which isn't considered to be an anti-depressant medication, but which does have a serotonin effect nonetheless); any time I was on one of those drugs, my NCCPs have either disappeared entirely, or been all but eliminated. And each time I discontinued a serotonin-effect drug, the NCCPs started up again within a month's time. One member here who was in the E.R. repeatedly for debilitating NCCPs finally had a doctor prescribe a low-dose daily antidepressant; her NCCPs have been eliminated.... no more pain, no more narcotics, no more trips to the hospital. (the dosage in this case is lower than the dosage that is normally used to treat depression.)

There are soooooooooooo many things that can be done to reduce NCCPs, but doctors don't even bother to TRY to find a solution for us. I say let THEM curl up in a fetal position making plea-bargain deals with their Maker at 3:00 in the morning just ONCE, and you can bet your booty that they'll find a solution REAL fast!!! :oP

Debbi in Michigan

Posted June 27, 2004 · June 27, 2004

Hi fin

Welcome just remenber if ross or rod's fingers are typing thier are lying!

currently running 3 clinics in Kazakhstan welcome again

Cheers

Tom

>From: fin osullivan <finosullivan@...>

>Reply-

>

>Subject: New member

>Date: Sun, 27 Jun 2004 17:57:42 +0100 (BST)

>

>Hi, Came across the group last week after we finally got linked up to the

>internet. Thought that i would join. I'm currently working in the

>Antarctic. Been here for 8 months, and have another 10 to go. Currently cut

>off with no in/ out till end of Oct. I'm a doctor responsible for the base,

>23 people. Regular scientific diving program with onsite chamber, and also

>year round field operations. During the summer we are the main air facility

>for the British antarctic survey, with 5 aircraft, and also provide transit

>to nearly all other aircraft that work in the continent, Nice and quite at

>the moment though

>Any way hello.

>Fin O'Sullivan

>

>---------------------------------

> ALL-NEW Messenger - sooooo many all-new ways to express yourself

>

Posted June 28, 2004 · June 28, 2004

Hey Fin, Welcome to the group. Who are you working for? Cheers, KJ