Whatever

[Guest guest]

Hey everyone! How are ya? All is well with us and now I'm taking a vacation from my vacation to recoup.

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

This is creepy!

Think of a letter between A and W. .. .. .. .. .. .. Repeat it out loud as you scroll down. .. .. .. .. .. .. Keep going . . . Don't stop . . .. .. .. .. .. .. .. .. Think of an animal that begins with that letter. .. .. .. . . .. . .. .. Repeat it out loud as you scroll down. .. .. . .. .. .. .. .. Think of either a man's/woman's name that begins with the last letter in the animal's name .. .. . .. .. .. .. .. Almost there........ .. .. .. . .. .. .. .. Now count out the letters in that name on the fingers of the hand you are not using to scroll down. .. .. .. .. .. .. .. Take thehand you counted with and hold it out in front of you at face level . .. .. .. .. .. .. Look at your palm very closely and notice the lines in your hand . .. .. .. Do the lines take the form of the first letter in the person's name? . .. .. .. .. .. .. .. .. .. Of course not...... .. .. ..Now smack yourself in the head, get a life, andquit playing stupid e-mail games! .. . .. .. Don't tell the secretto others, just send them this e-mail! Smile & have fun!

[Guest guest]

Dear ,

Not sure you meant your comment to be so strong that I was irresponsible. ly, you hurt my feelings and seems like you turned this into a contest. By the way, they don't do heart surgeries on a regular basis.

Putting my tail between my legs. Taking my statistically rare and irrelevant esophagus and eating a bagel w/ cream cheese for breakfast, then maybe a Subway for lunch and how about a steak for dinner.

I constantly state it is best to find the most experienced surgeon that is financially and physically possible for someone and I wouldn't make a lap surgeon do a VATS procedure. The discussion started because a woman in Orange County wasn't doing well. To my knowledge, Dr. Fuller and his group are the most experienced doctors in Southern California, no matter how they do the procedure.

Statistics are great and frankly I have a graduate degree in a statistically related field and worked 15 years at a very highly regarded international company in a technical position that involved huge databases. I currently work constantly searching data and sorting database information, so yes, I know how to search.

One very very important consideration when looking at statistics is comparing like things to like. I don't think comparing 20+ year old procedures to today's procedures with new equipment w/i the last 5 years is all that is necessary to compare surgeons. That is why I suggested questioning the surgeon about whether his/her statistics would be any different, if so why and what are their statistics.

As I said when Dr. Ippoliti, a very recognized gi, refers all his patients to Dr. Fuller for a myotomy, I trusted his judgement. He has been around a long time, previously sent all his patients to a lap surgeon and at that time was about 50/50 about doing a dialation or surgery. Since Dr. Fuller started doing the surgeries, he sends all his patients to him for surgery before dialations, given most situations.

I again think it is important to look at available surgeons and technology and make the best decision for themselves.

As to his publications, I've asked, they are working on the data, I really doubt they are hiding bad results or Dr. Ippoliti wouldn't still be sending his patients to them. Cedars is a highly regarded hospital. Believe me, I'd love to see their publications. I do think suggesting they are hiding bad results is unfair of the doctor to suggest that about another doctor.

I've been on this board since 2001, have made very close friends here and never before has it been suggested I am irresponsible. This isn't a contest. I continue here to offer support to others, most people who have successful surgeries disappear. I've never insulted a surgeon or a person's decision here. Well, not true, I've told people to run, run run if a doctor is recommending botox or seems inexperienced.

I am vocal about VATS because it seems like Dr. Fuller is the only one doing it and he is having good success with it apparently. As we are supportive of others with alternative treatment and there is interest in any possible advance in the treatment of achalasia I thought it was a valid suggestion to be made.

Again, a consistent issue with the lap procedure is the wrap. Many people come back after a lap and need further treatment, often the esophagus has stretched so much that more treatment is less successful. Dr. Fuller's statement about that is that a wrap is one more procedure that has to be perfect, he would rather do less and go back and do a wrap if needed. Made sense to me at the time, and again one more day in the hospital and a few more days of pain meds seemed to be worth it for longer term results.

I think if a poll was taken here about why members continue to post and what the problem is with their myotomies, it is because the wrap is too tight or the cut was too short. If VATS avoids the wrap, more of the esophagus is visible and the surgeon is well skilled about exactly where and how far to cut and there isn't any reflux and meds, doesn't that sound like a valid option? Just wondering.

We won't know until there are published long term results. Apparently only Cedars is doing the VATS procedure so we just have to wait and see. AGAIN, Go to the most experienced surgeon you can find that is financially and physically possible. In Southern California, in my opinion Dr. Fuller should be one of those opinions, then based on your research and tough grilling of the surgeons, comparing what they have to say make a decision based on your individual situation.

Sandy in So Cal

[Guest guest]

> Taking my statistically rare and

> irrelevant esophagus and eating a bagel w/ cream cheese for

breakfast,

> then maybe a Subway for lunch and how about a steak for

dinner.

Hee hee! Sandy, I like the way you write. You're right, I did

not mean to hurt your feelings and I'm sure I chose the wrong

words. I don't like to be argumentative (and obviously I'm not

good at it) but I thought the point should be made.

> As to his publications, I've asked, they are working on the

> data, I

> really doubt they are hiding bad results

Maybe not hiding, so much as not publishing? It seems that

doctors are eager to publish if they're doing something different

and it's very successful. I'll be interested to read their

study.

> Go to the most experienced surgeon you can find that is

financially and physically possible.

I agree.

[Guest guest]

I've been meaning to reply to this " what I've learned " but my computer time is limited right now.

I will say that when I spoke to Dr. Richter a couple years ago, he told me that he was in the process of trying to track down ALL his achalasia patients he'd ever seen to get some long-range results. Most of the documentation is for 6-12 month followups.... what about five or ten or twenty YEARS after treatment? How many people go to a different doctor the next time they need help, instead of returning to the doctor whose treatment didn't work for them? How many doctors have a true idea of what their long-term results really are?

I don't know if he's changed his tune, but two years ago Richter's comment was that he was finding a 50/50 outcome of surgery vs dilation. That was pretty eye-opening to me. The research I had done and the things I had learned on this board were all leaning towards myotomy being The One True Treatment. Now I'm seeing all these people who have had successful myotomies and they're now needing dilations. What's the point in having surgery if you're still going to need a dilation in a couple of years??? (I definitely agree that Botox is pointless unless you're in a rare situation that makes you unable to have a dilation or surgery.)

I had my last dilation in 1998. Six months later I got married. Six months later I got pregnant. In January 2000 I had the most adorable baby boy. I work full-time, I'm a season ticket holder for a pro hockey team. I'm also a full-time hockey mom -- my 6yo is just starting his third year skating and playing hockey. You CAN live with a SUCCESSFUL dilation. I don't know how much longer I'll have on this dilation, but 8+ years later I'm still trucking along.

Another thing that opened my eyes was being told that I wasn't bad off enough for more treatment right now. I'm eating anything I want and not losing weight, so until I spew on a daily basis, I don't need more treatment.

That's something that people need to realize.... YOU WILL ALWAYS HAVE ACHALASIA. Even if my LES isn't squeezed tight, I still have a screwed-up esophagus. I have to chew my food well. I have to have plenty of liquid -- solids need to be washed down. And I need to have gravity in order to swallow. Even if I had a myotomy, all of these things would still apply to me. My peristalsis is all screwed up and nothing can change that right now. Maybe someday they'll find a way to give us a pacemaker device, but for right now there's nothing that can be done.

It's hard to live with achalasia, even " treated " achalasia. I'm tired of having to hold up a finger to my son when he's asking me a question because I am fighting food that didn't go down. I'm tired of having to sit at a restaurant and look at my food but not able to eat it because my water glass is empty and I can't find my waitress. I'm tired of having to search out water (or send my son on a mission for a drink for Mommy) as soon as I feel a NCCP coming on. And I'm tired of explaining it to people.

A couple years ago when I first went to Dr. Richter, I had it in my head that he'd send me to Dr. Rice and I'd get myotomized and my life would be perfect for the rest of my life. The truth is, " My name is Debbi, and I am an achalasian " and that's just the way it's going to be for the foreseeable future, regardless of what treatments I have.

Debbi in Michigan