Summary of my heller myotomy with dor fundoplication - hope this helps

April 25, 2011

I'm writing a summary of my experience with achalasia over the last year so that

those who are recently diagnosed or think they may have achalasia may benefit

from my experience. Everyone's experience, treatment, and doctors are different,

but here's what I went through - and just so you know up front, I had surgery in

December and it was totally successful. I met my surgeon 10 days ago for a

follow up (including another barium study) and the results were so good that I

don't need to see him again. Ever.

So on with the show...

After more than two years of intense, intermittent sub-sternal pain, which was

originally diagnosed as GERD, and various treatment regimes (all of which failed

to manage or control the pain, I began having difficulty swallowing in May of

2010. That same month I had my first EGD, which revealed no irregularities or

erosion damage (performed at Presbyterian Hospital in Whittier, CA). By August,

I was regurgitating about one-third of my meals, meaning that I would eat, feel

like it was getting lodged, try to wash it down with water (which by then was

essentially the only thing I was able to drink - carbonated beverages caused

near immediate regurgitation every time), and would end up regurgitating my meal

and the water.

In August, a second EGD was performed at Pres. Hospital. They had originally

been focused on the GERD-like symptoms, and hadn't taken biopsies of the

esophagus the first time. You can imagine my frustration at the need for a

second EGD simply to take biopsies that most likely should have been done the

first time. (An economically valuable lesson: EGDs are much less expensive when

performed in an out-patient GI clinic than in a hospital. If you have a high

co-pay (which I do), go to the clinic rather than the hospital. The same doctor

performed both procedures, but it cost 1/4 as much at the clinic.) Again, the

EGD showed nothing of import - and specifically did not show any evidence of the

'rat tail' esophagus commonly associated with achalasia.

My swallowing got progressively worse over the next few months. I was now

beginning to lose significant amounts of weight. Probably about 15-20 pounds at

that point. As I am an athlete in relatively good shape, I'd lost more than just

the little extra I was carrying around). By mid-october, I was regurgitating at

least a portion of nearly every meal. We no longer went out to eat, and every

meal was a worry - not only was I concerned about my inability to eat, but also

about the social awkwardness of running to the bathroom every 3 minutes because

I was too stubborn not to eat.

A third EGD was performed at Cedars Sinai in LA in November, in order to insert

a Bravo capsule, so they could monitor the pH levels in my esophagus over a 48

hour period. The Bravo study revealed no significant pH changes in the

esophagus. Soon thereafter, a esophageal manometry was scheduled, also at

Cedars. The manometry is by far the worst test of the bunch. For those of you

who have to have them, just know that they are necessary and the most important

diagnostic tool currently available. Also know that they suck big time. My nose

was numbed using some local anesthetic (which was applied on the end of a long

swab that was jammed up my nostril and left there for a few minutes. And not

just a little bit inside, but about 4 or so inches. It basically feels like

they're swabbing your brain at that point). Then they take the manometry tool,

which is a long tube, about as thick as a pencil, and insert it through the nose

and into the back of the throat. They ask you to swallow (if I was really

capable of swallowing well, would I be having this test in the first place?) the

tube so they can get it into the esophagus and begin the test. Assume you're

going to gag, and perhaps even heave on the nurse/doctor. I managed to avoid

throwing up on them, though I have no idea how. After the tube is inserted, you

swallow as directed by the doc over a 60-90 second period. That's easy. The

tough part is NOT swallowing other than when he tells you to. If you swallow

even once when not told to, you have to start over, like I did. Sucky. After

the first test, then they do it again, only with applesauce. They measure not

only the action of the esophagus, but the pressure of the lower esophageal

sphincter (LES), which is pretty much the culprit of all of our problems.

The manometry revealed classic achalasia, with 0% peristaltic activity. For

those of you new to this - unlike most people, whose esophagi contract

rhythmically and help push food down to their stomach in a process called

peristalsis, those of us lucky enough to have achalasia don't do this right (or

sometimes at all). So the manometry confirmed what everyone thought at that

point based on my symptoms - I have achalasia. Which they were nice enough to

confirm with a timed barium study.

Yes, a timed barium study is the way they confirm that you have a disorder that

makes it very difficult, if not impossible, for you to swallow successfully.

You're given a cup of very thick, viscous liquid as you stand in front of a

fluoroscopy machine (a type of x-ray machine that will take video), and asked to

drink as much of it as possible as fast as possible. They might as well have

asked me to fly. They then time how long it takes for the fluid to pass from the

esophagus into the stomach.

I managed to drink a few sips without regurgitating it all over their fancy

machine. The result - zero spontaneous passage of the liquid into the stomach at

0, 1, or 5 minutes. They gave me a few crystals and some water to drink which

drove the barium liquid through the LES and into the stomach. And this is

considered a successful test because it confirms what the manometry told them -

I have achalasia.

By now it is late November, and I'm down 25 lbs or more. Since I am otherwise

very health and only 35 years old, my doctors and I decide that surgery rather

than botox injection or balloon dilation is the best alternative. Now it is time

to find a surgeon. I'm very fortunate in that my father is a physician (though

on the other coast) and my primary care physician is my best friend's father. So

they were both very active in helping identify potential surgeons. Additionally,

and perhaps most importantly, my fiancee is an anesthetist at Kaiser, and asked

every surgeon she worked with about their recommendations for a surgeon to

perform my myotomy.

Living in LA, there are three legitimate hospital options, all of which have GI

clinics that treat achalasia frequently (or as frequently as is possible given

the extreme rarity of the condition): Cedars, UCLA, and USC.

One of the surgeons at Kaiser had recommended a doc at UCLA, and I met with him

almost right away. He walked me through the surgery, and what I could expect

afterwards. I felt very comfortable with him, and the UCLA facility is

beautiful. I left the meeting and started to work with his assistant to schedule

the procedure for mid-December. (It was vital that I get it done as quickly as

possible for both health reasons and financial reasons - I'd met both my

deductible as well as my out-of-pocket maximum for the year and didn't want to

have to pay another $5,000.)

During that time, we received a half dozen more recommendations for another

surgeon at USC. Given how many doctors were recommending him, I went to meet

with Dr. Hagen. I was also comfortable with him, and since so many doctors (and

my fiancee) were insistent that he was the one I should use, I scheduled surgery

with him for mid-December.

The weekend prior to surgery, my primary care physician and the GI doc at Cedars

that had done the manomtery decided that they were uncomfortable with how

rapidly the condition had developed - usually achalasia comes on slowly over

years, not over the course of a few months. They decided they wanted to rule out

a tumor or mass sitting on the outside of the esophagus, so they scheduled me

for an abdominal CT scan. I had that done, and there were no anomalies seen, so

surgery was a go.

The plan was for surgery on the 17th, discharge on the 19th. Needless to say, I

was nervous. The morning of surgery, I arrived at the hospital at about 7:00.

They called me in around 8:30 for pre-op prep - the usual stuff: the

oh-so-fashionable hospital gown, the weigh in, the IV start). So now I'm just

waiting on the doctors.

The anesthesiologist came over to discuss her part of the surgery. Since I had

my own expert with me (thank you, financee!) that part went pretty quickly.

Rapid induction and treating me like I had a full stomach because there would

invariably be fluid in my esophagus even though I had been NPO for 12 hours

(nothing by mouth).

The surgical residents came over to talk about the surgery itself (though I had

heard all of this about ten times by now). So we're just waiting for Dr. Hagen

to be ready - he was in a meeting or at another surgery.

I was very anxious and would very much have appreciated (and in fact I had

expected) some anti-anxiety meds at this point. But though I asked the

anesthesiologist and the residents about this, and was assured it was

forthcoming, it never happened.

Finally, Dr. Hagen showed up, there was a flurry of activity, some propofol, and

.....

I woke up and was in considerable discomfort. And I was pissed off that I hurt.

Basically, I was a real pain in the ass for a bit, until the nurse showed up and

whacked me up on some morphine.

The next two days in the hospital weren't overly fun, as you can imagine.

Welcome to the wonderful world of foley catheters, limited movements and

morphine. Though I did stat to wean myself off the morphine after 24 hours, and

was completely off it after 36 and on a form of liquid vicodin instead. The

morning after surgery, they make you do another barium swallow to make certain

there are no leaks. Pain management was an issue. My doc had me on morphine

every 4 hours via IM injection (so they'd come in and give me a shot in a muscle

every 4 hours rather than just give it to me via the IV). For me, it wore off

after 2.5 - 3 hours every time, so I'd be awake and staring at the clock waiting

for the next injection for at least an hour. I'd recommend working out with your

doc in advance what your pain management plan is going to be.

Once the hospital is convinced your GI tract is awake and functioning, you can

go home. I left Friday afternoon as scheduled. The ride home wasn't much fun.

Twenty minutes in a bouncing car left me feeling jostled, sore and irritated.

Once home, it was a liquid diet for about a week. After that, it was soft foods

only for another two weeks, slowly titrating in a more complete diet.

My first bite of solid food (albeit soft) was portobello ravioli, and I swear it

was the best thing I have ever tasted in my life. My last solid food had been

more than a month prior to that, and it tasted like the food of the gods.

I had 5 incisions in my abdomen, and they were quite sore for about 2-3 weeks

post. The little ends of the internal sutures were visible for about two months,

after which they dissolved and fell off. The scars now are pretty minimal and

actually much less noticeable than I expected.

For the first 10 weeks post-surgery, I had a much reduced appetite relative to

the " normal " I'd had before everything started. I ate much smaller portions,

felt full very quickly, and had 4 episodes where I regurgitated a little food

(and every time it was because I ate a little too quickly and didn't chew

enough. As I began feeling better, I became less conscious of the act of eating,

and pushed it too far too fast). However, starting in about week 11, I noticed

I was eating more and more easily. By 12 weeks post, I was pretty much eating

everything without problems, and eating like a " normal " person. I was regaining

weight, and was back to normal physical activity.

For 12 weeks following surgery, my physical activity was severely restricted - I

was not allowed to lift anything more than 5 pounds for 8 weeks, and nothing

more than 10 pounds for the 4 weeks after that. I wasn't allowed to do anything

more than walk during the entire 12 week period. Starting in the 12th week, I

resumed normal physical activity, though it was no surprise that I was

essentially completely deconditioned. That was tough, because I am a soccer

player and biker, and had been in superb cardio shape prior to this whole

adventure.

From the first EGD in May to the lowest point, I lost 44 pounds. Once I was

able to begin eating normally, I started putting back on weight. I've regained

about 20 lbs at this point (about 5 and a half months post surgery).

For those considering surgery and checking surgeons, I whole-heartedly recommend

Dr. Hagen. Though he isn't the warmest and most endearing of doctors in terms of

bedside manner, the results I achieved were outstanding and I'd choose to go

with him 100 out of 100 times if given the choice again.

I realize this is a very long post, but if you've read this far, hopefully it

will help you as you try to navigate the uncertain waters of dealing with

achalasia, and give you a sense of what the tests are, what the surgery is like,

and most importantly, what the recovery is like.

Good luck!

April 25, 2011

Greg,

>

> I'm writing a summary of my experience with achalasia over the last year so

that those who are recently diagnosed or think they may have achalasia may

benefit from my experience. Everyone's experience, treatment, and doctors are

different, but here's what I went through - and just so you know up front, I had

surgery in December and it was totally successful. I met my surgeon 10 days ago

for a follow up (including another barium study) and the results were so good

that I don't need to see him again. Ever.

> So on with the show...

>

> After more than two years of intense, intermittent sub-sternal pain, which was