Re: Questions for Heller post-op folks

[Guest guest]

Ellen wrote...In my continuing quest for information, I would be

really grateful for those of you who have had recent Heller's to

share some info:

> 1. How did you find your surgeon, were you happy with him/her, did

> anyone have their surgery in Rhode Island or Boston?

I got my referral from this board to TCC. My internist agreed.

> 2. Can you describe your swallowing before the surgery, and the

> difference you felt after? Could you eat everything, and did it

> just drop right into your stomach?

I had been choking on nearly everything by Christmas so had botox

injections. I was still enjoying the effects of that treatment, but

it was wearing off and I was told specifically to get the surgery

before I had totally lost the ability to swallow again - for best

results. I was able to eat everything prior to surgery....but barium

swallow showed that it wasn't clearing through...going very slowly.

I don't notice much difference between before & after....except the

barium swallow showed the food clearing immediately. So, this is

exactly what we hoped for!

> 3. How long can I expect to be out of work? I'm an attorney, and

> need to know how long to clear my calendar for.

Two weeks should bring you back to a normal energy level, off the

pain meds for driving purposes and back into your wardrobe. At just

over one week I was back to doing basically all my normal schedule,

but I don't work outside the home.

Good Luck Ellen,

Joy

[Guest guest]

>

> In my continuing quest for information, I would be really grateful

> for those of you who have had recent Heller's to share some info:

> 1. How did you find your surgeon, were you happy with him/her, did

> anyone have their surgery in Rhode Island or Boston?

I'm in Colorado, so I can't help you find a surgeon. Mine was pretty

much dictated by my insurance plan. EVERYBODY in the hospital

(University of Colorado Hospital) told me how great this guy was. Of

course, most of the surgery was done by residents.

> 2. Can you describe your swallowing before the surgery, and the

> difference you felt after? Could you eat everything, and did it

> just drop right into your stomach?

They start you off with 'soft' food and gradually let you try other

stuff. I could eat most things within 2 days. There was a MAJOR

improvement, but I'm nowhere near where I was before the symptoms began.

> 3. How long can I expect to be out of work? I'm an attorney, and

> need to know how long to clear my calendar for.

>

I had my surgery on a Monday. I had a partially collapsed lung and had

to hang around the hospital til Friday. I worked (I'm a computer

programmer) a half day the following Wednesday (9 days after the

surgery), 6 hours on Thursday, and full-time from then on. The only

problem was on stairs since I was a still a little sore the first few

days.

> Thanks so much for any help you can offer, and to those still

> recovering from surgery - I hope you are feeling really great really

> soon.

>

> Ellen

[Guest guest]

> Hi Ellen,

I had my laparoscopic heller myotomy at Mt. Sinai Hospital in New

York City on August 19, 2004. I have end-stage achalasia with a

sigmoid, very distended esophagus. Many A surgeons write articles

recommending removal of the esophagus for end-stage achalasia. I was

lucky enough to locate L. Katz, M.D. at the Laparoscopic

Surgical Center of New York who was willing to try laparaoscopic

heller myotomy with a partial fundoplication procedure he had

developed two years ago, especially for end-stage achalasia. The

surgery worked GREAT! The barium swallow the next morning showed

complete emptying into my stomach, and I ate meat and salad for lunch

that same day. I ate steak and lamb again for dinner that night at

home, after being discharged. I was eating an apple the very next

day, and returned to work after two weeks. My incisions healed

quickly. I started playing my oboe and English horn again after 3-4

weeks. I am planning for a recital soon.

I have had achalasia for 35 years, with two dilations. THe disease

had progressed to the point where I had asthma because fluid backed

up from my esophagus into my lungs. Before surgery, I coughed ALL

nights - nights were worse than the days.

My lungs were completely clear within two days after surgery and my

asthma is gone. I sleep well every night with no reflux, probably

because I take an antireflux Prontonix each morning and night. I can

eat any salad, meat, veggie, soda, popcorn, carrots, etc. I held off

from eating bread after surgery, although I will try a piece now and

then eating slowly. For end-stage A, I understand that bread and

things that can swell like cake or breading can tend to get stuck in

the esophagus.

I have so much energy now, and I feel as if I am 25 years old. I

think I am the happiest person in the world now. After 35 years of

achalasia, nothing can discourage me now. Good luck in your

search!! Really investigate the surgeon and the information on A

that you can find. I brought along my husband, who is a physician,

when I had my first appointment with Dr. Katz. In my opinion, the

procedure used for the fundoplication is critical. I think too many

surgeons are doing too tight a fundoplication which can end up

mutilating a patient. This was the reason I waited so long for

surgery - in order to find a surgeon who really knew what had to be

done. Really be mentally prepared for the surgery. I actually put

off the surgery an extra week to participate in an English horn

master class in Monterey, CA. Everyone thought that I was nuts!

But, when I returned home from my vacation and music camp, I was

actually really looking forward to the surgery, and prepared for

whatever was going to happen.

Ginny

[Guest guest]

> Hi Ellen,

My name is Jo from South Florida and I had my surgery down in Miami.

My surgeon is Dr. Moises s and his specialty is laparascopic

surgery. He has twelve years of laparoscopic surgery plus another

fifteen or so performing open abdominal surgeries. He has a first

rate reputation among other surgeons in the area. He also has many

patient as well as physician references. One of my gastro doc's sons

has " A " and he performed the Heller Myotomy with a wrap on him also.

He is currently doing well. My Heller was performed in June, 2004

and I am very happy.

I am a nurse and work in the hospital setting. I used my network of

associates and colleagues to get to this particular surgeon. It was

a time consuming effort, but well worth it as I am very particular

about success rates, infection rates, postoperative care, pain

management, etc., I am very detail oriented and had very specific

expectations and demands. If you have a network of medical contacts,

it would be well worth it to get their opinions about specific

surgeons in the Boston Area, or if you do not get a " good " feeling

about anyone there, it might be well worth it to travel out of your

state and seek treatment elsewhere. There are very specific

questions you might want to ask and the files on this website would

be helpful. However, if you do wish to do research yourself, access

to the Medline file via a medical contact would be helpful as I,

myself, do not feel comfortable with some of the general website

information. A member named Notan on this board is the most reliable

when it comes to credible websites. His information is unbiased and

very logical. Boston Pete is a member (he hasn't posted lately) and

his pharmaceutical background is also incredibly helpful.

There are a variety of symptoms depending on your stage of this

disorder. I can only tell you from my experience what mine were--

simply put, difficulty swallowing and regurgitation at night when in

a horizontal position. My onset of symptoms came on suddenly and I

was in a crisis situation when I had surgery. I was diagnosed in

April. I had surgery in June. My post-op experience has been a

generally good one. I had overnight surgery. I went home and

started on soft foods immediately. I had problems with severe acid

reflux the first week to two, but it subsided once I started on

proton pump inhibitors (Prevacid, Protonix and the like). I was able

to eat soft, then to more solid foods, and eventually within a two

month period I was eating anything, and everything. Food travels at

a slower pace because the nerves are disabled, no more peristalsis.

I always have food with a liquid. I chew it well so that " stuckage "

does not become an issue. I did have spasms post operatively,

severely at first and it had gradually decreased and now is almost

nil. I started on Paxil for the spasms and occasionally had

sublingual Procardia/Nifedipine for severe periods. I travel

frequently and went on vacation for two weeks at two months post-op.

I felt good. Stress can aggravate the spasms, occasionally making it

difficult to focus on tasks that require detail. I took off 6 months

from work (March to September) and now work one day a week. Your

work is entirely different so you will have to gauge accordingly. I

would say at one month I felt up to doing more. Others may have a

difference of opinion.

Please research as much as possible before you have the surgery

performed. If you have medical contacts, I would implore you to

enlist their aid as that is your greatest weapon against surgical

misinformation. Good luck.

Jo from South Florida

> In my continuing quest for information, I would be really grateful

> for those of you who have had recent Heller's to share some info:

> 1. How did you find your surgeon, were you happy with him/her, did

> anyone have their surgery in Rhode Island or Boston?

> 2. Can you describe your swallowing before the surgery, and the

> difference you felt after? Could you eat everything, and did it

> just drop right into your stomach?

> 3. How long can I expect to be out of work? I'm an attorney, and

> need to know how long to clear my calendar for.

>

> Thanks so much for any help you can offer, and to those still

> recovering from surgery - I hope you are feeling really great really

> soon.

>

> Ellen

[Guest guest]

Hi Ellen. I'm a little late in welcoming you to the group, so...HI!

and Welcome!! Quick about me...My name is , 30 years old

and I live in NYC. Diagnosed with A in October 2003. Started have

swallowing difficulty about summer 2001. No prior treatment to the

surgery.

I've answered some of your questions below. My answers are in

quotes.

> 1. How did you find your surgeon, were you happy with him/her, did

> anyone have their surgery in Rhode Island or Boston?

" I had the lap heller this past February. My surgeon was

recommended by the doctor that diagnosed me. He was absolutely

wonderful. Located in NY Presbyterian Hospital in NYC. I live

about 20 minutes from Manhattan so I'm lucky enough to have many

doctors to choose from. But I stuck with the recommended surgeon

who had a lot of experience with A and had done hundreds of lap

hellers. He also recommended the partial wrap which I had and I've

had no reflux of any kinds. "

> 2. Can you describe your swallowing before the surgery, and the

> difference you felt after? Could you eat everything, and did it

> just drop right into your stomach?

" Before the surgery, nothing went down by itself. I had to gulp

water (room temp) with everything I ate AND drank. Coffee had to be

pushed down with water. Water bottles taken with me EVERYWHERE. I

couldn't carry a stylish little bag...I needed one that could fit at

LEAST 2 water bottles. Now after the surgery, all food goes down.

I don't have a problem with ANY kind of food. I do need to push it

along with something to drink, but it doesn't have to be room temp

water anymore. I have little to no peristalsis left in my E. I feel

some stickage, but with the aid of some drink it pushes it right

thru. Liquids go straight down, and I can actually feel it hit my

stomach...both cold and hot. No, my swallowing isn't perfect, but I

can actually eat, whereas before I really couldn't. I went down to

92 pounds before the surgery and with the limited diet for the first

month after, I'm sure I dropped a few more pounds. Now I'm about

108 (a few pounds extra that I don't want, but at least I look

healthy now.) "

> 3. How long can I expect to be out of work? I'm an attorney, and

> need to know how long to clear my calendar for.

" I was out of work for almost 3 weeks. My surgery was on the

Wednesday after President's day, so since my work allowed me the

time I needed I took advantage of it and took the Tuesday before it

off. I was also on a 3-day liquid diet before the surgery to make

sure my E was empty (which by the way, it was NOT for the surgery

and they had to pump out the rest from my E as I started choking

while I was under!!) Anyway, my surgeon said I would need about 2

weeks and I just took the extra time since I could. He also said

each person is different and some are able to be up-and-around

sooner than others. I was okay after the 2 weeks (Wed to Wed) but

took the Thurs and Friday after the 2 weeks off. So timewise for me

with the holiday and mid week surgery, it just worked out to 3

weeks. Anyway, be prepared to take two weeks off from work. No

lifting anything more than 5 pounds for 2 weeks. "

>

> Thanks so much for any help you can offer, and to those still

> recovering from surgery - I hope you are feeling really great

really

> soon.

Just a few more things I want to add from my experience. Some

recent posts from other heller patients were about the gas problems

and pain in the shoulders. I did not have any post-surgery issues

like that at all. No shoulder pain from the gas, no burping issues

or gurgling from my E and no infections from my incisions (5 little

ones). I'm now realizing just how lucky I was. Also remember that

most people who post here are having difficulty. When I first

joined the group I was pretty overwhelmed and extremely worried with

all the " gloom and doom " posts here. I try to keep up to make sure

there are some positive ones out there. With that said, having the

myotomy was the best decision I ever made. I was so hesitant about

doing something permanent to my body like that. But the everyday

issues was wearing me down. It's just in your face everyday, every

meal, every night. Waking up choking every night was no picnic. I

can now sleep flat on a pillow without propping myself up. I've

only had one choking episode since the surgery and it was my own

fault. I can't eat like " normal " people and I had a weekend of big

eating which I paid for. I have to remember that I have to eat

slow, take small bites, and chew really well. Overeating makes me

feel sick and hurts my stomach a bit. I guess because my stomach is

smaller with the wrap and all.

Anyway, I've rambled quite a lot. Hope I was helpful. My

experience was nothing but positive. Oh, except that I did have

some spasm (NCCP) issues post-surgery, which I was told was normal.

It last 2 weeks and each spasm was less and less severe. So I guess

I did have 1 issue. But it was nothing and I didn't take any meds

for it. I can't remember the last time I had one and if I do it's

very mild and ususally brought on by stress!

Good luck.

in NYC