Re: Dilatations and 14 y/o

[Guest guest]

Maureen - for what it's worth - I had A at 12, got diagnosed at 15 and here's my

2 cents - just my opinion...

After what I've heard on this group - I would trust Dr. Patti completely and if

he feels there may be some relief from her going to Dr. Richter at Temple; he's

right, there's few and far between who know how to dilate someone with A - then

I would opt for that first and see if she can get a few years relief from it. I

had a myo at age 20 and in the first 3-4 years, had a couple of dilations - then

I was fine for about another 15 years. Dr. Richter may be able to buy her some

real time.

I imagine she's frustrated and annoyed AND a teenager to boot but he may really

be able to make the difference for her and it's only one more time to try.

Think about it this way, Dr. Patti is a surgeon, and surgeons promote surgery

because it's what they do - even he's saying that this may help - does that make

sense?

Hope that helps! Please keep us posted.

~ in NC

>

> We went down to Chicago to meet with Dr. Patti on Monday. He looked at records

that Childrens Hosp. sent and told me because of the rarity of achalashia not

everyone knows how to do a proper dilatation. He gave me a name of a Doc at

Temple University who is an expert if I chose to go that route. He also

mentioned he could possibly repair the Heller or he would have to do a different

surgery (cant remember procedure..stretching esphogus...). He said he would be

willing to do the surgery if we chose to go that route. I have a few questions

maybe you could help me with.

> 1-Is it possible to have achalasia and not lose weight? At the moment she is

not losing weight although since her diet mainly consists of high carbs. She is

vomiting and informed me tonight that it is getting worse.

> 2-She does not want another dilatation. She has had 3 and is convinced they do

not work. She wants surgery so she can be normal like she was when the Heller

was working the 9 mos.

>

> My thoughts are to go to Temple and get a proper dilatation to see if it

works. How many surgeries can you get with this disease before you exhaust all

your options? I guess I am thinking to get the surgery when there is no other

alternative.

> My daughter doesnt always eat the correct things and doesnt always chew as she

should as she is hungry. I talked to her about eating late but sometimes she

sneaks food into her bedroom. All these I attribute to her age.

> What are your thoughts?

> Thanks

> Maureen

>

[Guest guest]

Hi Maureen,

So sorry to have read about your 14 year old daughter. Clearly there are no

guarantees as to achieving success with any kind of " treatment " that is decided

upon. We all should try to consult with the best doctors and after evaluating

their opinions (one or many), come to our own conclusions and act upon it.

Asking for opinions here has become a long established way of seeking a

concensus also.

There are a few surgeons in this country who are considered by this group as

being the " best of the best " for achalasia. Dr. Patti is one of them. Before

offering my opinion on a course of action, I want to try to answer your

questions.

Yes, it is possible to have achalasia and not lose weight. In fact there have

been a good number of people who have gained weight, even with regurgitating

(what you called " vomiting " ) food all the time.  To some extent it depends upon

the kind of foods one eats (or tries to), but it also depends upon the signals

the stomach sends the brain that it is full and to stop eating. With achalasians

food can take very long to reach the stomach so the person just keeps on eating

as it very slowly passes thru the esophagus to the stomach.

If I read your post correctly, your daugher has had 3 dilatations and 1 surgery,

and you are considering going to Temple University for her to have her 4th

dilatation, the hospital where Dr. Richter works (though you did not mention him

by name).  Your daughter favors trying surgery again.  As Notan and some other

people might have mentioned, we are aware of people having two myotomies, but 3

might be unheard of. Any number of dilatations have been performed on

patients. 

Chances are, given your daughter's young age and previous experience with

dilatations, another one is not going to last long enough to give her the relief

she deserves and make a real difference in her life. It is also possible that it

might complicate a future surgery.

As far as your daughter not always eating " the correct things, " that sounds

common to many teenagers, though I am not sure what you  mean by saying the

" correct things; " if you mean " nutritionally speaking " or as an achalasian. At

this point in her life, eating the correct things might mean to avoid eating the

" wrong things " keeping her achalasia in mind and what foods and drinks give her

more problems going down and to avoid them. 

I would suggest you have her drink a glass of her favorite drink about 15

minutes before starting a meal. It will accomplish two things. It will help

clear whatever food might be sitting in her esophagus from a previous meal and

give her a better chance to eat without regurgitating her food, plus it should

reduce her hunger when she does start eating, which may slow down how fast she

eats. Its perfectly normal to eat fast when hungry, but when you have achalasia

and you eat fast, you are just piling up layers of food in the esophagus. That

can lead to weight gain, and over time cause additional stretching of the

esophagus, leading to more problems.

My suggestion to you is that Dr. Patti do the surgery on your daughter before

the condition of her esophagus gets any worse. He would not offer doing it if

he did not think he could  help her, and he has the skills to do so. As said

earlier, no guarantees, but this might give her the best chance to lead a normal

life.

________________________________

From: Maureen <mmyoung5758@...>

achalasia

Sent: Sat, June 18, 2011 9:30:36 PM

Subject: Dilatations and 14 y/o

 

We went down to Chicago to meet with Dr. Patti on Monday. He looked at records

that Childrens Hosp. sent and told me because of the rarity of achalashia not

everyone knows how to do a proper dilatation. He gave me a name of a Doc at

Temple University who is an expert if I chose to go that route. He also

mentioned he could possibly repair the Heller or he would have to do a different

surgery (cant remember procedure..stretching esphogus...). He said he would be

willing to do the surgery if we chose to go that route. I have a few questions

maybe you could help me with.

1-Is it possible to have achalasia and not lose weight? At the moment she is not

losing weight although since her diet mainly consists of high carbs. She is

vomiting and informed me tonight that it is getting worse.

2-She does not want another dilatation. She has had 3 and is convinced they do

not work. She wants surgery so she can be normal like she was when the Heller

was working the 9 mos.

My thoughts are to go to Temple and get a proper dilatation to see if it works.

How many surgeries can you get with this disease before you exhaust all your

options? I guess I am thinking to get the surgery when there is no other

alternative.

My daughter doesnt always eat the correct things and doesnt always chew as she

should as she is hungry. I talked to her about eating late but sometimes she

sneaks food into her bedroom. All these I attribute to her age.

What are your thoughts?

Thanks

Maureen

[Guest guest]

Hello Maureen.

My son was treated by Dr. Patti..

I would totally trust what he says.  He is one of the worlds foremost

authorities on Achalasia.  He has given you Dr. Temple because he knows and

trusts him. But did you listen carefully to what he was really saying and not

listen for another dilatation.

At her age, Dr Patti will carefully consider " quality of life " when he speaks to

you. What about repairing the MYO?  why not??

Email him and ask what the other procedure he spoke of was..

I would consider carefully about another stretch until you have all the info. 

If he thought the myo needed REPAIR then weigh this very carefully..

I put my son's life in his hands, I would do it again..

He is a very gifted compassionate man.

Wishing you well...

Carolyn

mom of Cameron

myo'd and fundo'd in 05

>

> We went down to Chicago to meet with Dr. Patti on Monday. He looked at records

that Childrens Hosp. sent and told me because of the rarity of achalashia not

everyone knows how to do a proper dilatation. He gave me a name of a Doc at

Temple University who is an expert if I chose to go that route. He also

mentioned he could possibly repair the Heller or he would have to do a different

surgery (cant remember procedure..stretching esphogus...). He said he would be

willing to do the surgery if we chose to go that route. I have a few questions

maybe you could help me with.

> 1-Is it possible to have achalasia and not lose weight? At the moment she is

not losing weight although since her diet mainly consists of high carbs. She is

vomiting and informed me tonight that it is getting worse.

> 2-She does not want another dilatation. She has had 3 and is convinced they do

not work. She wants surgery so she can be normal like she was when the Heller

was working the 9 mos.

>

> My thoughts are to go to Temple and get a proper dilatation to see if it

works. How many surgeries can you get with this disease before you exhaust all

your options? I guess I am thinking to get the surgery when there is no other

alternative.

> My daughter doesnt always eat the correct things and doesnt always chew as she

should as she is hungry. I talked to her about eating late but sometimes she

sneaks food into her bedroom. All these I attribute to her age.

> What are your thoughts?

> Thanks

> Maureen

>

[Guest guest]

Carolyn,I am having the transcript sent to me as you are right I know I missed

some things as when I talked to his nurse she mentioned things I did not hear. I

will let you know once I get it in the mail.ThanksMaureen

From: Carolyn <wooleeacre@...>

Subject: Re: Re: Dilatations and 14 y/o

achalasia

Date: Monday, June 20, 2011, 1:15 PM

 

Hello Maureen.

My son was treated by Dr. Patti..

I would totally trust what he says.  He is one of the worlds foremost

authorities on Achalasia.  He has given you Dr. Temple because he knows and

trusts him. But did you listen carefully to what he was really saying and not

listen for another dilatation.

At her age, Dr Patti will carefully consider " quality of life " when he speaks to

you. What about repairing the MYO?  why not??

Email him and ask what the other procedure he spoke of was..

I would consider carefully about another stretch until you have all the info. 

If he thought the myo needed REPAIR then weigh this very carefully..

I put my son's life in his hands, I would do it again..

He is a very gifted compassionate man.

Wishing you well...

Carolyn

mom of Cameron

myo'd and fundo'd in 05

>

> We went down to Chicago to meet with Dr. Patti on Monday. He looked at records

that Childrens Hosp. sent and told me because of the rarity of achalashia not

everyone knows how to do a proper dilatation. He gave me a name of a Doc at

Temple University who is an expert if I chose to go that route. He also

mentioned he could possibly repair the Heller or he would have to do a different

surgery (cant remember procedure..stretching esphogus...). He said he would be

willing to do the surgery if we chose to go that route. I have a few questions

maybe you could help me with.

> 1-Is it possible to have achalasia and not lose weight? At the moment she is

not losing weight although since her diet mainly consists of high carbs. She is

vomiting and informed me tonight that it is getting worse.

> 2-She does not want another dilatation. She has had 3 and is convinced they do

not work. She wants surgery so she can be normal like she was when the Heller

was working the 9 mos.

>

> My thoughts are to go to Temple and get a proper dilatation to see if it

works. How many surgeries can you get with this disease before you exhaust all

your options? I guess I am thinking to get the surgery when there is no other

alternative.

> My daughter doesnt always eat the correct things and doesnt always chew as she

should as she is hungry. I talked to her about eating late but sometimes she

sneaks food into her bedroom. All these I attribute to her age.

> What are your thoughts?

> Thanks

> Maureen

>

[Guest guest]

Maureen wrote:

>

>

> 1-Is it possible to have achalasia and not lose weight?

>

Yes.

> 2-She does not want another dilatation. She has had 3 and is convinced

> they do not work. She wants surgery so she can be normal like she was

> when the Heller was working the 9 mos.

>

Not all dilatations are the same. Those dilatations didn't work but it

does not mean that another type of dilatation would also fail. It may

fail, but maybe the other were not done right for her. The surgery also

has no guarantees. It may help. Seems like something should, but you

never know for sure.

>

> How many surgeries can you get with this disease before you exhaust

> all your options?

>

A myotomy and possibly a redo and then the esophagectomy seems to be the

full course, but I don't know that there couldn't be more redoes in some

cases. Also, the esophagectomy may not be the last but cross that bridge

if you get there. Most people with achalasia will not even get to having

a esophagectomy. Some get there surprisingly quickly though.

> I talked to her about eating late but sometimes she sneaks food into

> her bedroom. All these I attribute to her age.

>

Many of us who are old enough to know better and tell others not to do

this still cheat at times. Some days you just have to have that one

marshmallow right now instead of waiting for two latter. It isn't just a

kid thing.

notan