Re: Re: 17 year old needs esophagectomy

[Guest guest]

Hi Todd,

I think Jeff has given you some excellent advise without preaching (I sometimes

tend to preach). 

I am curious about something though.  Its not clear to me if the surgeon who

performed the myotomy is the same surgeon to do the ectomy? If that is the case,

I would be very reluctant going with the surgeon who essentially failed to help

your daughter doing a complex operation, and then wants to do an even more

complex surgery. That concerns me greatly.  Who is this surgeon and what is his

track record?  I don't like the whole path your daughter has followed, from 2

1/2 years with achalasia, then a myotomy, more dilatations with a

tear, followed

by a possible ectomy a year later. I strongly believe that you have to put on

the brakes here, not rush into an ectomy and start getting some opinions from

the best of the best.

You asked for advice or support, I would strongly suggest that you seek out

other opinions. By your own admission, your daughter is a " trooper, " so let's

first invest some time to improve the life she has ahead of her and get multiple

opinions from the best surgeons and GI doctors and not just one overzealous

surgeon who can't wait to operate next week. Sometimes you need several opinions

before settling on a course of action.

If you tell us where you live, this group can make suggestions as to who you

should consult with.

________________________________

From: jp_shaw1 <jp_shaw1@...>

achalasia

Sent: Thu, June 9, 2011 7:09:42 PM

Subject: Re: 17 year old needs esophagectomy

 

Todd,

I would not dare to try and give advise whether you should go forward with this

surgery or not. I hesitated to even comment on this post because your daughter

is only 17 and I don't think it is anyone's place to try and persuade you . This

is a very personal and life changing decision you need to make and it should be

something for your family and doctor to decide. As a parent you have a very

difficult decision to make. I would wonder however why it is so important to go

ahead with the surgery in only a weeks time? Again this is a decision between

yourself and your doctor but 1 week to decide does not leave much room to think

through the decision and weight all of the potential options and complications.

Is the short time frame a scheduling thing for your surgeon and have they

indicated a medical reason they think it should be done so soon?

I can tell you that I had an esophagectomy last year and this is a very serious

surgery. This is not like having a myotomy. You need to understand the potential

complications of this surgery and your doctor should be able to explain them to

you clearly and in detail. I have recovered pretty well over the last eight

months but it was very difficult for those first few months. Very difficult.

Being that your daughter is so young and a serious athlete you really need to

speak to your surgeon bluntly about potential complications this surgery could

have on her athletic future.

There are two major methods of esophagectomy. TTE and THE. This site gives a

good describing of both methods: This link is more about the THE method.

http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtm\

l

You really need to understand what type of method your surgeon is proposing. I

had the TTE method where the incisions were on the abdomen and the right side. I

am 35 now and admittedly not in the shape I was in my early twenties. While I am

healthy and feeling good the incision area under my right arm has affected my

strength on that side. That doesn't mean it is the same for everyone. This is

just my situation.

The other method the " THE " method usually involves an incision by the neck and

the abdomen but that method can have potential complications as well. This

method usually has less of the types of complications I have had with my right

side strength because the incision is in a different place.

If you do go forward it would be wise to vet your surgeon and the hospital you

will be having it done at. Make sure you understand how many of these surgeries

they are doing a year. This makes a difference in the potential of complication.

It is not just the doctor that is important it is the knowledge and training of

the staff at the hospital that provide the critical care after the surgery. I am

not sure who your surgeon is or what hospital you would have this at but members

of this board have been to many of the best in the country so if you feel

comfortable with posting the name of your surgeon\hospital you may get some

feedback that can help.

-Jeff

>

>

> Our 17 year old daughter had the usual symptoms of achalasia for about 2.5

>years before she was diagnosed with achalasia in Dec. 09. Her first treatment

>was a dilation then in March of 2010 she had a myotomy. From our research and

>expectations from her doctors we assumed the myotomy would last 5 - 15 years.

>For the first 2-3 months after the myotomy she was doing fine she could swallow

>again and had gained 12 lbs. Then the typical symptoms started to return, she

>has had 3 more dilations which resulted in a small tear in the esophagus. Her

>condition has regressed and she went to her surgeon 3 days ago to discuss a

>second myotomy, her surgeon is now convinced that the only option that will

help

>her situation is an esophagectomy! We knew eventually this may need to be done

>but not so soon. She is a very positive kid and has handled all the pain,

>treatments, tests and surgery like a trooper. Sometimes I wonder where she gets

>her strength. In the past 1.5 years since her diagnosis we have been focused on

>her diet and learning about the dilations and myotomy. We have not done much

>research on the ectomy as we thought we would not have to face that until much

>later. Her surgeon can perform the ectomy one week from now and its hard to get

>our heads wrapped around it since we dont feel we know all the options. She is

a

>very active athletic teenager with a dream of playing university level female

>hockey, a dream that is within reach for her as she has the skill plus a

passion

>unmatched by others. Does living with the ectomy normally inhibit intense

>physical activity like sports? We know this is a big surgery with a difficult

>recovery period, but it looks like there are very limited options. Any advice

or

>support is greatly appreciated.

>

> Todd

>

[Guest guest]

Hello Todd,

I have not revisited this group in several years, but let me share my daughters

story with you. She just turned 18 in March, and she has been 5 years post

Myotomy surgery this week. When she was diagnosed with A, she lost 50 lbs,

litteraly over nite almost. We initially had botox injections which helped right

away, but her gastro Dr, said she would probably have to have them every 3

months, well at that time that didn't sound like fun for any one especially a 13

yr old. So after much research which included this Group, we opted for the

Myotomy. Dr Rosemurgy in Tampa, FL was her surgeon, he and his team are

absolutely out of this world. has put back on all the weight she lost and

them some. The two things she continues to suffer from are Esophogeal spasms,

and the Dumping syndrome. The Dumping syndrome basically can be controlled by

is she chooses, what seems to make her react is a high amount of sugar

intake, so 1 piece of candy or 1 cookie is more than she should have, so if she

has more, well needless to say I don't have to deal with it she does. It took me

a while to stop nagging her about it, but she's the one that learned just how

much is too much.

Ok, the one that has really caused her the most grief is NCCP, we were told that

with time they would minimize. Well let me tell you, like children NCCP's have a

mind of their own. LOL, can go for days/weeks perfectly fine. Then BAAM,

she's attacked if you will, sometimes it's just 1 and their gone, sometimes

their can be several anytime of the day or night, and then other times she can

have them all day/night every 15 minutes, which really sucks, cause she can't

concentrate in school having heart attack like chest pains. I will tell you

though what works to subside her pain is usually drinking cold milk. Which as

you read a lot of the post's here that's definately not usually the norm, but

then again we are talking about Achalasia, which is far from normal. She has

tried prilosec, nitroquick and warm liquids and none of these work for her. Over

the years she has not always had access to cold milk, and has tried other

beverages, like water, tea, soda or whatever is available. They don't always

work, but then again sometimes they do.

Bottom line Todd, I know you hate seeing your child go thru this, trust me I'm

living it everyday like you, I don't really know a whole lot about

esophagectomy's, but from what I'm reading from the other posts, I would really

do my homework and make sure this is a step you want to take. I know it's tough,

but hang in there, I'm hoping and praying that my will never have to have

another procedure or surgery ever again for this disease/disorder, but at least

we have this group to help get us all educated, including the Medical personal

that seriously have no clue.

I apologize for my rambling, but this is a subject that I am very passionate

about in helping the world get educated on, so best of luck to your family.

Patty

________________________________

From: <vickilynne1@...>

achalasia

Sent: Fri, June 10, 2011 10:13:13 AM

Subject: Re: 17 year old needs esophagectomy

 

Hi Todd,

As the mother of an 18 year old with Achalasia, my heart goes out to you. On the

topic of her pain, it sounds like she's having esophageal spasms, which can be

unbearable. Does she have anything to help with the pain, like nifedipine? Just

curious. You can look through previous posts to see what other people do to help

with them. Also, if you seek a 2nd opinion, I highly recommend Dr. Rice at The

Cleveland Clinic. Not a peds surgeon, but did my son's myotomy when he was 14.

Vicki

> >

> > Dear Todd,

> >

> > I'm so sorry to hear that your daughter is going through this at such a

young

>

> > age.  It would help to know who the surgeon was that did the myotomy? 

If

>it was

>

> > not done right, that could be why this has happened?  Having an ectomy is

> > serious, make sure that you get to the best of the best surgeon and/or

second

>

> > opinion, maybe they can save her esophagus for awhile longer.  I have

lived

>with

>

> > this disease for over 23 years, I know it's a rough road.  Please give us

>more

>

> > info and we can all put our heads together and help you sort this out. 

We

>are

>

> > not doctors, so we can only offer our own advice, but many here are very

> > knowledgeable. 

> >

> >

> > Julee So. Calif. 

> >

> >

> >

> >

> > ________________________________

> > From: husky112 <husky112@>

> > achalasia

> > Sent: Thu, June 9, 2011 2:15:27 PM

> > Subject: 17 year old needs esophagectomy

> >

> >  

> >

> > Our 17 year old daughter had the usual symptoms of achalasia for about 2.5

>years

>

> > before she was diagnosed with achalasia in Dec. 09. Her first treatment was

a

>

> > dilation then in March of 2010 she had a myotomy. From our research and

> > expectations from her doctors we assumed the myotomy would last 5 - 15

years.

>

> > For the first 2-3 months after the myotomy she was doing fine she could

>swallow

>

> > again and had gained 12 lbs. Then the typical symptoms started to return,

she

>

> > has had 3 more dilations which resulted in a small tear in the esophagus.

Her

>

> > condition has regressed and she went to her surgeon 3 days ago to discuss a

> > second myotomy, her surgeon is now convinced that the only option that will

>help

>

> > her situation is an esophagectomy! We knew eventually this may need to be

>done

>

> > but not so soon. She is a very positive kid and has handled all the pain,

> > treatments, tests and surgery like a trooper. Sometimes I wonder where she

>gets

>

> > her strength. In the past 1.5 years since her diagnosis we have been focused

>on

>

> > her diet and learning about the dilations and myotomy. We have not done much

> > research on the ectomy as we thought we would not have to face that until

>much

>

> > later. Her surgeon can perform the ectomy one week from now and its hard to

>get

>

> > our heads wrapped around it since we dont feel we know all the options. She

>is a

>

> > very active athletic teenager with a dream of playing university level

female

>

> > hockey, a dream that is within reach for her as she has the skill plus a

>passion

>

> > unmatched by others. Does living with the ectomy normally inhibit intense

> > physical activity like sports? We know this is a big surgery with a

difficult

>

> > recovery period, but it looks like there are very limited options. Any

advice

>or

>

> > support is greatly appreciated.

> >

> > Todd

> >

> >

> >

> >

> >