Re: for Minh

[Guest guest]

Hi, I just had my hellers at UCLA also?  Who did your surgery?  I had Dr.

Maish.  I've had achalasia for 22yrs.  I was around the age of 30 when I

started

to have problems swallowing.  I worried for years about it because doctors did

not find me the proper help.  I realized that I had achalasia before they

did. 

Not everyone will get to end stage, and even with end stage, they are able to do

surgery and many on this group are doing very well.  Try not to worry about 10

years from now, make the most of today, that is really all we have.  Get well

soon!!! 

Julee So Calif.

________________________________

From: Mat T <matbjj@...>

achalasia

Sent: Mon, January 17, 2011 9:04:26 AM

Subject: Re: surgery over

 

Hi Ann,

I just had my Heller Myotomy here in CA @ UCLA on Jan 11, 2011.  I was so

hopeful but the day after surgery an esophagram of esophagus made me so sad and

fearful that this surgery won't last.  The Dr says she seen a lot worst that

mine is okay.  It has only been a year since I first started having symptoms. 

My GI doc kept telling me it was GERD.  I had an endoscopy done and thought all

was well.  As my symptoms progressed I started regurgitating every night. 

Finally I had to see a 3rd GI doc to diagnose me and went to have surgery.  I'm

still on a liquid diet and getting used the burping sounds my esophagus makes. 

I feel scared of what could happen with disease, the end stage and how life will

be.  I'm a young father and can't seem to shake this depression that is

encroaching on me.

I just wanted to talk to someone who has had this condition for a while to gain

some hope.

Thank you.

Minh

From: Donna <donna9513@...>

Subject: surgery over

achalasia

Date: Sunday, 16 January, 2011, 14:06

 

I had my HM with Dor on Tues. Jan. 11th. So far so good, shoulder was hurting

more than abdomen, but it is getting better.

The evening after surgery I was to have nothing by mouth, food service came by

with a liquid diet tray and I told him I was not to have anything, he said that

there wasn't a NPO on my door, I argued again and he said that must have

changed, I wanted it badly anyway so stopped arguing. Nurse came in later and

said did you have that? I told her the story and she said that I should have

called her. I thought well that would have been one idea, but ideally she should

have done her job and put the note on the door. No harm done apparently. Jello

never tasted so good.

I was discharged the next day with the soft diet. I was surprised as I thought I

would be on liquids for at least two weeks. However, I am not pushing it and

still eating/drinking very lightly. It is so good to be able to swallow anything

without it coming back up.

I pray that I get many years without problems, but I realize once an Achalasian

always an Achalasian. I am going on 62 years old and I look at Jan. 11th being

the first day of the rest of my life. One day at a time.

Donna Hall

HM Jan. 11th, 2011

Dr. Brent s

-Jewish Hospital

St. Louis, Missouri

[Guest guest]

Hi ,

Dr Maish did my surgery.  I started to break down from the sight of enlarge

esophagus.  Just a year ago I had a barium swallow done at Little Company of

Hospital in Torrance and it was normal.  Slowly things got worse to the

point of regurgitation and aspiration every night.  I sought out an ENT dr. who

scoped my throat twice and told me to see a second opinion.  The second GI guy

was a little more intuitive and wanted to do another EGD and check for

eonsinophil esophagitis.  Finally my primary care dr from UCLA did a CT scan

with contrast and told me to go to a UCLA GI who ordered a manometry which led

to Achalasia and then Dr. Maish for surgery.  She is a wonderful dr.  I fear

the size of the esophagus, I don't think it is long yet but just big.  I remain

hopeful it will shrink as opposed to get larger.

Thank you everyone for your replies.

From: Donna <donna9513@...>

Subject: surgery over

achalasia

Date: Sunday, 16 January, 2011, 14:06

 

I had my HM with Dor on Tues. Jan. 11th. So far so good, shoulder was hurting

more than abdomen, but it is getting better.

The evening after surgery I was to have nothing by mouth, food service came by

with a liquid diet tray and I told him I was not to have anything, he said that

there wasn't a NPO on my door, I argued again and he said that must have

changed, I wanted it badly anyway so stopped arguing. Nurse came in later and

said did you have that? I told her the story and she said that I should have

called her. I thought well that would have been one idea, but ideally she should

have done her job and put the note on the door. No harm done apparently. Jello

never tasted so good.

I was discharged the next day with the soft diet. I was surprised as I thought I

would be on liquids for at least two weeks. However, I am not pushing it and

still eating/drinking very lightly. It is so good to be able to swallow anything

without it coming back up.

I pray that I get many years without problems, but I realize once an Achalasian

always an Achalasian. I am going on 62 years old and I look at Jan. 11th being

the first day of the rest of my life. One day at a time.

Donna Hall

HM Jan. 11th, 2011

Dr. Brent s

-Jewish Hospital

St. Louis, Missouri

[Guest guest]

Hi Mat,

I had my Heller myotomy done on Dec. 2, 2010. My symptoms started showing up

around July of 2010 when I noticed diffuculty in getting food to pass into my

stomach and then the regurge started happening which caused me to start

aspirating in my sleep and coughing. Since my surgery, there is no more regurge

which is the biggest relief as that was causing me a severe loss of sleep. I was

on lliquids for about a week and a half. My surgeon, Dr. e Quilici, then

said I could graduate to soft foods after about a week which I gladly but

carefully did. As time has gone by I have slowly added to the list of foods

which I try to eat and so far (knock on wood) I have had success. The key seems

to be to take small bites and CHEW, CHEW, CHEW! Have some liquid handy to help

the food go down if needed.Don't gulp, just take enough to help. I can imagine

the sight of an enlarged esophagus is very disconcerting. Keep this in mind. It

is most likely that most of the

enlargement came BEFORE you had the surgery and was probably caused by two

things. One is the fact that you might have been still trying to eat " normally "

even though the food ,and more importantly, liquids weren't emptying into the

stomach and were remaining in your esophagus. This could have caused the

esophagus to stretch and become enlarged. Which was probably causing the pain

and discomfort you felt in your chest and back(?) after several bites of food or

swallows of drink. Secondly, the lack of peristalsis, which is the muscular

motion the esophogus uses to " massage " the food into the stomach, has ceased to

exist. This lack of muscular activity in the esophagus could have caused the

layer of muscle in the esophagus to lose tone thereby allowing it to sag and

become dialated or enlarged when filled with food and liquid. This

last conclusion is conjecture on my part and by no means an expert evaluation

but it seems to make sense, kind of like a

leg muscle atrophying because of spinal damage or polio. The good news is that

since you will be able to get much greater amounts of food into your stomach it

will not collect in your esophagus and thereby cause it to continue to get

larger to any great degree. The not quite so good news is that since achalasia

is non-curable at this point in time, the peristalsis will not return to the

esophagus. It is also possible that at some point another myotomy MAY be needed

if symptoms return. The numbers I have heard the most is around 5 to 10 years.

It varies with each person. The GI attending to me in the hospital told me that

the amount of loss of peristalsis is different in different cases. Some

peristalsis may remain but it will be at a greatly reduced amount from what is

" normal " . All the surgery accomplished was to open the sphincter to allow food

to pass into the stomach and thereby relieve the annoying and disconcerting

symptoms associated with

achalasia. Don't let the sight of an x-ray of a distended esophagus depress

you. Life will go on at a level that is pretty close to normal. As time passes

and you gradually start to eat more and more of the things you like ( and this

is very likely) just remember that you have to be a little careful or your body

will most likely give you a little nudge in the ribs ( or in our case maybe our

chest or back) and remind you to take it easy when you eat. Also keep in mind

that you are now a member of a VERY select group of achalasians ( 1 in about

100,000) and that we are all here to help. If you have questions, ASK! If you

have concerns, LET US KNOW! If you feel you are alone in the world because this

is such a rare condition remember there are a number of us and we are all here

for each other. A little homework. If things seem to really be piling up on

you, take a piece of paper and take the time to WRITE DOWN two lists. One, the

negative elements of

your experience and then the positive side of your experience. Write one and

then the other. Do it as the thoughts occur to you. It is important that you

write it down. Over time this will bring things into perspective and get the

the thoughts out of your head and away from you where they won't be so

controlling. Then get out and get back to living. Chin up. You're gonna be fine.

Rick

From: Donna <donna9513@...>

Subject: surgery over

achalasia

Date: Sunday, 16 January, 2011, 14:06

 

I had my HM with Dor on Tues. Jan. 11th. So far so good, shoulder was hurting

more than abdomen, but it is getting better.

The evening after surgery I was to have nothing by mouth, food service came by

with a liquid diet tray and I told him I was not to have anything, he said that

there wasn't a NPO on my door, I argued again and he said that must have

changed, I wanted it badly anyway so stopped arguing. Nurse came in later and

said did you have that? I told her the story and she said that I should have

called her. I thought well that would have been one idea, but ideally she should

have done her job and put the note on the door. No harm done apparently. Jello

never tasted so good.

I was discharged the next day with the soft diet. I was surprised as I thought I

would be on liquids for at least two weeks. However, I am not pushing it and

still eating/drinking very lightly. It is so good to be able to swallow anything

without it coming back up.

I pray that I get many years without problems, but I realize once an Achalasian

always an Achalasian. I am going on 62 years old and I look at Jan. 11th being

the first day of the rest of my life. One day at a time.

Donna Hall

HM Jan. 11th, 2011

Dr. Brent s

-Jewish Hospital

St. Louis, Missouri