Re: 17 year old needs esophagectomy

June 9, 2011

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

>

June 9, 2011

Dear Todd,

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

age.Â It would help to know who the surgeon was that did the myotomy?Â If it

was

not done right, that could be why this has happened?Â 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.Â I have lived

with

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

info and we can all put our heads together and help you sort this out.Â We are

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

knowledgeable.Â

Julee So. Calif.Â

________________________________

From: husky112 <husky112@...>

achalasia

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

Subject: 17 year old needs esophagectomy

Â

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