Re: What I've learned about

September 7, 2006

,

I mistakenly read your "I'm no expert" message first, then went back to read what you were commenting about. Human nature, what it is, people generally find it easier to ask questions first rather than going back and doing the research (all of which is available here in posts, databases and files.) Your post served that purpose and did it very well.

I, for one, found your post very informative, not preachy, basically stating the relevant facts that anyone with achalasia (especially newbies and their caregivers) should know about. We don't need to be experts; we just need to know enough to help ourselves and to share that information with others less informed.

You wish you could go back "seven months"; I wish I could go back to the start of Reagan's first term! Hindsight is 20-20. The last few months I learned and accepted that I can only go forward.

Thank you .

In a message dated 9/7/2006 1:34:50 P.M. Eastern Daylight Time, 1x2y3z@... writes:

I'm no expert, and I hope that long message didn't come across as trying to establish myself as one. I just wish I could have sent all of that information back in time to myself seven months ago, when my son was first diagnosed and I was asking, ach-what?

September 7, 2006

I'm no expert, and I hope that long message didn't come across as

trying to establish myself as one. I just wish I could have sent

all of that information back in time to myself seven months ago,

when my son was first diagnosed and I was asking, ach-what?

September 7, 2006

> Hindsight is 20-20.

Yes -- about so many things, not just achalasia. We can only go

forward and try to help others avoid our mistakes. It's similar

to what a parent feels, or a grandparent (I suppose). We did

some dumb things and we want to help the next generation to do

better.

If I could have sent that email to the that I was seven

months ago, reeling in shock and wishing so hard that it could be

me instead of my son, it would not have changed my decision about

Mark's surgery, but it would have helped me to understand the big

picture with a little less headache. I would also have told that

to get some counseling and kicked her in the behind until

she did.

of today

September 7, 2006

>

> After my son was diagnosed earlier this year, I did lots of

> research: reading many studies, figuring out the terminology,

> asking questions on this site, and talking with surgeons and

> gastroenterologists. This is a summary in plain English of what

> I've learned so far. I hope it will be of some help to those who

> have been recently diagnosed.

>

> First, what it is. In achalasia, the sphincter from the

> esophagus to the stomach doesn't relax properly because the

> nerves that tell it to relax in response to a swallow gradually

> die off, while the nerves that tell it to contract are just fine

> and keep on doing their job. The esophagus gets dilated over

> time, stretched out by food that sits there too long. In

> addition, the esophagus loses peristalsis, its ability to squeeze

> the food downward. Normal people can swallow while standing on

> their heads because of peristalsis, but achalasia patients rely

> on gravity. It's diagnosed by barium swallow, endoscopy, and

> manometry.

>

> Next, how it's treated.

>

> Medicines such as nitrates (Isordil) and calcium channel blockers

> (Nifedipine) may relax the sphincter and help some patients

> temporarily. Most patients have unpleasant side effects like

> headaches. The medicines gradually stop helping, but may be

> useful while waiting to get surgery scheduled. Some people have

> also reported temporary relief from acupuncture with traditional

> Chinese herbal medicine.

>

> Pneumatic dilations are less effective in people under the age of

> 40, and the younger the patient, the less likely it is that

> dilations will help on the long term. Patients who are at least

> middle age have a good chance of being helped by dilations if

> repeated as needed. Dilations are performed by

> gastroenterologists (GI doctors), not surgeons.

> Gastroenterologists who specialize in achalasia and have done

> many of these forceful balloon dilations have better results and

> fewer perforations than inexperienced ones. There's always a

> small risk of a perforation which would have to be fixed by

> surgery right away.

>

> Botox never helps for long and is only recommended for elderly

> patients who cannot risk surgery. Both dilations and Botox

> injections cause scarring which makes future surgery more

> difficult. Most experts agree that patients under 40 should go

> straight to surgery without trying dilations, and certainly

> without getting any Botox injections.

>

> Surgery helps most patients, over 90% in many studies. The

> myotomy is a lengthwise cut along the esophagus, starting above

> the sphincter and extending down onto the stomach a little way.

> The esophagus is made of several layers, and the myotomy only

> cuts through the outside muscle layers which are squeezing it

> shut, leaving the inner muscosal layer intact.

>

> Most surgeons who have treated many achalasia patients and tried

> various operations over the years are now using the laparoscopic

> approach (keyhole surgery through the abdomen) with anterior

> fundoplication (wrapping the fundus of the stomach over the top

> of the esophagus).

>

> The thoracoscopic approach (keyhole surgery through the chest)

> was used more in the past, but research has shown that patient

> outcomes are less likely to be successful with this approach than

> the laparoscopic approach. Statistically, patients have less

> relief of swallowing problems and more trouble with reflux.

> There's also more pain and a longer hospital stay. A few are

> still doing it this way, including Dr. Fuller in Los Angeles.

>

> Food can easily pass downward after the myotomy has cut through

> the lower esophageal sphincter, but stomach acids can also easily

> reflux upward. Many researchers have studied whether it's

> necessary to do a fundoplication with a myotomy, and the

> consensus is that yes, it's needed in order to prevent excessive

> reflux, which can cause serious damage to the esophagus over

> time. Part of the stomach is laid over the esophagus and

> stitched in place, so whenever the stomach contracts, it also

> closes off the esophagus instead of squeezing stomach acids

> into it.

>

> Some surgeons do a Toupet (posterior) fundoplication, which wraps

> the fundus of the stomach around the back of the esophagus.

> However, recent studies have shown that a Dor (anterior)

> fundoplication is just as effective at reducing reflux, and some

> surgeons who had preferred Toupet are now switching to Dor.

> Anterior fundoplication has two advantages: it protects the weak

> mucosa of the esophagus which is exposed by the myotomy, and it's

> a simpler operation with less cutting around the esophagus than

> posterior fundoplication.

>

> A few are starting to use a robotic system for the surgery,

> including Horgan (Chicago). They say it provides better ease of

> manipulation so there may be fewer perforations (accidentally

> poking a hole through the esophagus while doing the myotomy,

> something that happens maybe 2% of the time and is easily

> repaired with a stitch). However, most top surgeons don't think

> there's much point in using the robotic system.

>

> Experience is very important. Surgeons report better outcomes

> after their first 50 patients. There are only perhaps a dozen

> surgeons in the U.S. who have done enormous numbers of these

> operations, including Mayo Clinic in MN (Deschamps etc.), San

> Francisco (Patti), Vanderbilt in TN (Torquati etc.), Rochester,

> NY (s), Tampa, FL (Rosemurgy), Seattle, WA (Pellegrini),

> Cleveland Clinic (Rice), and others. Of course there are very

> experienced surgeons elsewhere in the world as well, including

> Europe, China, India, and Chile (where many patients get

> achalasia from Chagas, a parasitic disease).

>

> This is a delicate operation. It's not easy to get it just

> right: extending the myotomy far enough but not too far, and also

> getting the fundoplication tight enough but not too tight. You

> want the surgery to help you for the rest of your life. Find out

> whether your surgeon has published studies on his/her past

> experience with a large number of achalasia patients (50+).

>

> It's easy to find phone numbers and even email addresses for

> these surgeons on the Internet. Telephone their offices, leave a

> message including your phone number, and the surgeon is very

> likely to personally return your call within a day or so. Have

> your list of questions ready by the phone.

>

> Even if the surgery is done as well as possible, swallowing may

> still deteriorate over time. It's important to check every year

> or two with a barium swallow, as some may need dilations, a

> repeat myotomy, or even (rarely) esophagectomy after 20 or 30

> years. It's also a good idea to have pH testing and/or endoscopy

> to check for reflux damage, which may lead to cancer of the

> esophagus if untreated. There are good medicines to reduce

> reflux called proton pump inhibitors. It's also prudent to sleep

> with your head elevated by raising the head of the bed or using a

> wedge pillow.

>

> At http://scholar.google.com/ you can search for studies by

> keywords or a doctor's name. Look up unfamiliar words at

> www.onelook.com. Also check out the resources on this group's

> website.

>

> Other excellent sources:

>

> http://makeashorterlink.com/?G20623AAC

> (understanding swallowing disorders)

>

> http://patients.uptodate.com/topic.asp?file=digestiv/4384

> (information for patients with achalasia)

>

> http://makeashorterlink.com/?F516268BD

> (guidelines on treatment of achalasia)

>

> http://makeashorterlink.com/?P29D51FBC

> (review article on treatment of achalasia)

>

> http://www.clevelandclinic.org/thoracic/phys/swallow/heller2.htm

> (how the surgery helps - in pictures)

>

> My 15-year-old son had surgery in Cleveland in July and is doing

> very well.

>

> in Lancaster, PA

>

this is wonderful information, thank you.

September 7, 2006

Somehow I find myself being Dr. Fuller's marketing assistant, likely he doesn't need one.

It isn't that he is STILL doing the minimally invasive technique through the chest as opposed to lap. He, his medical group and Cedars feel they are on the cutting edge and have improved the thoracic approach from what it was in the old days. In fact the impression I got is that he feels those doing it lap are STILL doing it the OLD way. It all depends on which side of the fence you are on.

He and his associates worked with Dr. s at USC who I think always did the myotomy lap. The gi's at Cedars used to work at places that did mostly lap myotomies and they feel the VATS method is more successful and recommend it over any other procedures. Dr. Fuller and Dr. Mc Kenna are cutting edge on minimally invasive lung resections (equally controversial) for cancer and emphysema. They apparently can take out growths minimally invasive that other surgeons remove with open thoracic surgeries.

Because I am feeling so well and so far have no complications I find myself being a Dr. Fuller advocate. I get so frustrated seeing people have myotomies then coming back here a few months or years later with apparently wraps that are too tight. It seems to be exactly what he said happens with the lap method. Of course those with wraps just right probably don't come back here. If you can avoid the wrap and the reflux then his method and expertise would seem to be worth a phone call and lots of questions comparing the two.

I can imagine people who first talk to a lap surgeon probably hear his method is STILL the old way as surgeons are very inclined to believe their way is best.

Dr. Fuller's whole issue is the wrap and the problems it causes later. From this board I think we see more than ample evidence of wrap complications after surgery. His method seems to be perfected to avoid the wrap and avoid reflux at the same time. The methods before newer equipment and expertise shouldn't be compared to the way things were 10 or 15 or even 5 years ago without that consideration.

Personally an extra day in the hospital and a stronger pain medication for another few days was worth it to me so far. Only time will tell. When I checked Dr. Fuller's background he is well educated in the lap procedure, the impression I got from his attitude about lap myotomies was somewhat similar to "been there, done that" but in a nicer way.

Again I wouldn't force a lap surgeon to do a VATS procedure or a VATS specialist to do a Lap myotomy. You should go to the absolute best surgeon you can find that fits your financial and physical needs.

Sandy in So Cal> The thoracoscopic approach (keyhole surgery through the chest)> was used more in the past, but research has shown that patient> outcomes are less likely to be successful with this approach than> the laparoscopic approach. Statistically, patients have less> relief of swallowing problems and more trouble with reflux.> There's also more pain and a longer hospital stay. A few are> still doing it this way, including Dr. Fuller in Los Angeles.

September 7, 2006

Sandy, I am glad that your surgery was successful for you. I'm

sure Dr. Fuller has helped many, many people with achalasia. But

we can't see into the future to any one patient's outcome, so

it's useful to look at the statistics about past outcomes.

Statistically, there seems to be a better chance of success with

the laparoscopic approach.

The following is from a comprehensive review article which may be

accessed at

http://makeashorterlink.com/?P29D51FBC :

" The general experience with thoracoscopic myotomy demonstrates

good to excellent symptom improvement in 76% of 204 treated

patients (table 3). Unfortunately, the unacceptably high rate of

persistent dysphagia (up to 26%) and secondary GERD (35%) has led

to some diminution of enthusiasm for this procedure. "

.... " Furthermore, numerous studies have reported that the

laparoscopic approach has a cumulative good to excellent clinical

response rate of 94% with a lower incidence (13%) of

postoperative GERD and no reported mortality (table 4). "

Many, many comparisons of this kind can be found by entering

these three words in the search box at http://scholar.google.com/

:

achalasia thoracoscopic laparoscopic

Overwhelmingly, these studies agree that the laparoscopic

approach is superior. Maybe Dr. Fuller has perfected the

technique and his results are better than reported in these

studies, but if so, I wonder why he hasn't published his results.

I was unable to find any studies by Dr. Fuller or his colleague

Dr. McKenna with data about their results.

The thoracoscopic approach helps 76% of patients, so it is not a

bad procedure. It does help most people. It helped Sandy, and

that is wonderful. However, if the laparoscopic procedure helps

94% of patients and involves less pain and suffering, it seems to

me that this would be the obvious choice.

Yes, the fundoplication can be too tight and that can be a

problem, but that's another reason why it's important to choose a

very highly experienced surgeon. The ones I listed have

published data on their long-term results, including dysphagia

and reflux.

----- Original Message -----

From: " toomuchclutter " <sandycarroll@...>

Because I am feeling so well and so far have no complications I

find

myself being a Dr. Fuller advocate. I get so frustrated seeing

people

have myotomies then coming back here a few months or years later

with

apparently wraps that are too tight. It seems to be exactly what

he

said happens with the lap method. Of course those with wraps

just right

probably don't come back here. If you can avoid the wrap and the

reflux

then his method and expertise would seem to be worth a phone call

and

lots of questions comparing the two.

September 7, 2006

Wow -- this needs to be uploaded to our database or files section!