Re: 17 year old suffering from

January 21, 2008

Hi Nick

Sounds like the myotomy surgery unless I am missing something -

I had it done only last Thursday and its made so much difference but I still

have to take it steady as like you I lost a lot of weight and my stomach will

not be used to dealing with so much food all at once but it’s just so

nice to know it’s going somewhere.

Any questions or concerns please just ask away – you will

get loads of help, advice and support on this group.

Andy

Yorkshire, England.

From: strangehippy1967 [mailto:lostwonka@...]

Sent: 21 January 2008 08:09

achalasia

Subject: 17 year old suffering from achalasia

hey guys, just found this group and it is

great! as my subject says i

am 17 and have achalasia. i go to the hospital in iowa city and they

are going to set a date for me to have surgeory very soon. they said

since i am very young they are going to do the one where they cut the

scar tissue (im not sure what exactly they call it, but it isnt the

balloon one) im not sure if anyone has had this done or has seen

results from it. living with achalasia for a year now has completely

changed my life, i am seriously underweight for my age and can barely

eat anything without having to vomit it out right away.

Anway i am very grateful i have this group for the support.

cheers!

nick

January 21, 2008

Hi Nick,

My name is Vicki, and my 14-year old son, , has Achalasia. In

fact, we are at TheCleveland Clinic right now for his follow-up tests.

He had surgery in October and it improved the quality of his life

greatly. He was down to 87 lbs and is now at 100 lbs. He's grown

almost 2 inches since October. I'm so glad you found this site - it's

a wealth of information and support. Please feel free to email me with

any questions at vickilynne1@.... I'm sure would be

glad to share his story with you as well. Hugs, Vicki

>

> hey guys, just found this group and it is great! as my subject says i

> am 17 and have achalasia. i go to the hospital in iowa city and they

> are going to set a date for me to have surgeory very soon. they said

> since i am very young they are going to do the one where they cut the

> scar tissue (im not sure what exactly they call it, but it isnt the

> balloon one) im not sure if anyone has had this done or has seen

> results from it. living with achalasia for a year now has completely

> changed my life, i am seriously underweight for my age and can barely

> eat anything without having to vomit it out right away.

> Anway i am very grateful i have this group for the support.

>

> cheers!

> nick

>

January 21, 2008

Nick wrote:

> ...they are going to do the one where they cut the

> scar tissue ...

>

What scar tissue? If you have scar tissue this is another problem

besides having achalasia. The cause could be something that resulted

from your achalasia but the treatments for achalasia are to cut, stretch

or disable the muscles of the Lower Esophageal Sphincter (LES) and not

to treat scar tissue. What tests have you had done. Did they find scar

tissue? Often scar tissue is caused by acid reflux which is usually due

to a LES that relaxes too much. In achalasia the LES usually does not

relax enough and while there can be some acid reflux with achalasia it

is definitely not expected.

Any surgeon that works on the esophagus and stomach has the basic skills

to do a Heller myotomy but probably not the experience to do it well

even if they have lots of experience in other surgeries in that area of

the body. Surgeons talk about the learning curve for doing the surgery

and sometimes compare the first fifty surgeries with the second fifty

surgeries they have done. There is a paper online about myotomies. In it

Dr. s, who has done many myotomies answers a question from Dr.

Pellegrini, who has also done many myotomies, about a technique Dr.

s used to determining how long to make the cut. Here is a quote:

" Your third question was, what was the endoscopic evaluation? How do we

identify the adequacy of the myotomy? What endoscopic signs are there? I

guess it is a little bit like pornography, or at least the Supreme Court

ruling, you know it when you see it, and this requires experience doing

it. As we have gained experience, we have gotten a better Heller

myotomy. ... "

Dr. s could not tell exactly what it was that he knew because it

was something that would have to be learned by doing a lot of them.

Many areas of the US do not have a large enough population for there to

be many new cases of achalasia in a year, being that there is only 1 new

case for every 100, 000 people per year and not all of those will have

myotomies. Some high volume medical centers for achalasia will do

myotomies every week. A low volume center may only do one every few

years. You want a myotomy done in a high volume center by a surgeon that

is often doing myotomies. I suggest you travel if needed to the best you

can have. Mayo is relatively close to you if needed. Ask your doctors

and surgeon how much experience they have with achalasia.

notan

January 21, 2008

Hey Nick,

My name is , and my son is 14 years old. He had surgery in November, and has already put on close to 20 lbs. He only gained 10 lbs all of last year! I hope all goes well for you. If I can be of any help, feel free to contact me at jchavez1925@... There are a lot of people who are more knowledgeable than me, but I can always put you in touch with my son, who is closer to your age. He can give you his thoughts on what he had to deal with as a teen-ager. Best of luck. You're in the right place for information!

Adam's dad

17 year old suffering from achalasia

hey guys, just found this group and it is great! as my subject says i am 17 and have achalasia. i go to the hospital in iowa city and they are going to set a date for me to have surgeory very soon. they said since i am very young they are going to do the one where they cut the scar tissue (im not sure what exactly they call it, but it isnt the balloon one) im not sure if anyone has had this done or has seen results from it. living with achalasia for a year now has completely changed my life, i am seriously underweight for my age and can barely eat anything without having to vomit it out right away. Anway i am very grateful i have this group for the support.cheers!nick

January 21, 2008

Hello Nick and hopefully your parents. I am the mom of Cameron who is now 17 and quite suddenly we discovered he had achalasia. For his 14th birthday in Dec. we got the diagnosis. He had surgery in May of 2005 after losing 84 lbs due to the lack of being able to get the food into the stomach. He had the surgery OPEN and can eat pizza with the best of them. I know it has been hard to have friends, to go out and grab a burger and fries.. to go to the show and have a soda and popcorn... So lets see now how we can help.... You mention that you are in Iowa City, and I know that Chicago is not too far from you. It is imperative for you to consider a specialist. Pediatric Achalasia is VERY RARE, only one in a million. and seriously, would you want someone who has never seen a car to repair the engine

in your Mustang Shelby? Surgeons who are unfamiliar with Achalasia often watch the video or read the manual but it is just not enough. You need the hand of experience. Let's say it is the same as .... playing Guitar hero... but the difference is equal to ... the difference between the easy level and EXPERT. How long do you need to play it until you get to the Expert level?? I implore you and your parents to go over the group site for information. Parents or Grandparents need to advocate for their children. Our specialist who is currently at the U. of Ca in San Francisco is a pioneer in Achalasia, he is

considered a worlds Foremost expert on Achalasia, and is experienced with kids. He is leaving UCSF to head a new research center at the U of I in Chicago. You have a very long life to look forward to. Start at the top... The very best... All your testing can be done at home and shipped. Dr Marco Patti will be in Chicago in February. I urge you first.... talk to your parents... Second.. Google Achalasia, Motility, Dysphagia, Specialist + ... Your parents are your advocates. It is so important for your life care that you take the time to learn what is going on with your body, and that this DOES NOT GO AWAY it is here forever. the likelyhood that you live within a commutable distance to a specialist in the USA - Almost NON

existent the likelihood that you live within a days drive 300+ miles- GOOD the likelihood that you will need to travel to get the proper care from an accredited specialist is - EXACT Chicago is but 250 miles from you.... Can I help you? Carolyn mom of Cameron myotomied and fundoplicated in 2005 in N. Californiastrangehippy1967 <lostwonka@...> wrote: hey guys, just found this group and it is great! as my subject says i am 17 and have achalasia. i go to the hospital in iowa city and they are going to set a date for me to have surgeory very soon. they said since i am very young they are going to do the one where they cut the scar tissue (im not sure what exactly they call it, but it isnt the balloon one) im not sure if anyone has had this done or has seen results from it. living with achalasia for a year now has completely changed my life, i am seriously underweight for my age and can barely eat anything without having to vomit it out right away. Anway i am very grateful i have this group for the support.cheers!nick 4-H Leader extraordinaire! All-Star Advisor to the most awesome kids of Amador County!

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January 21, 2008