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Todd-Alberta!!

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Dear Todd,

                              **is an -ectomy the only answer for a 17 year

old?**

I feel your pain as a parent unable to do anything to help your child. I am

encouraged that you did so much research.  You mentioned Cleveland, but did not

mention Chicago. Did you know one of the finest surgeons is located write in

Chicago?  He worked on my son, who was diagnosed at 14, and Dr. Patti did his

Myotomy and Fundo, in 2005.  He would be happy to talk with you.. see you...

He is relatively close to you as compared to Toronto and Ohio! 

You can email him he will respond, or call.... He is a great man...

If you have more questions I will be happy to talk to you.

I would not hesitate to contact him immediately.

Additionally, Another of the worlds finest is yet a little closer still.   Dr

Pellegrini!!

He is one of Dr. Patti's close Associates  and is located in Seattle Wash. at

the University of Wa.  You can contact him at the information below, too!!!  

If you would like to see some of their research publications just Google using

Scholar.

Blessings to you ... to your daughter.

Carolyn

mom to Cameron

myo'd and fundo'd in 05

MARCO PATTI< mpatti@...

Marco G. Patti, MD

Professor of Surgery

Director, Center for Esophageal Diseases

University of

Chicago Pritzker

School of Medicine

5841 S. land Avenue, MC 5095, Room G 201

Chicago,

IL 60637

Telephone: 773-702-4865

E-mail: mpatti@...

Dr PellegriniEsophageal and Gastric Diseases Clinic at UWMC

University of Washington Medical Center

1959 N.E. Pacific St.

Seattle, WA 98195

(206) 598-4547

206 598 4477

E-mail: pellegri@...

 

  

>

>

> Thank you all for your help.

> I'll try to clarify a few points. The surgeon that wants to do the

ectomy is not the same one that did the myotomy nor the dilations. The

one that performed the myotomy was a pediatric specialist because at the

time she was 16. Before the surgery we did fairly extensive research

for this procedure including discussions with the Cleveland clinic in

Cleveland and also in Toronto. We live in Alberta, Canada

and found that one of the most respected centers with top rated doctors

is the U of A Hospital in Edmonton. The surgeon wanting to do the

procedure is Dr. Lees, he is confident that the myotomy was performed

correctly but the patient's condition is degenerative, which may be the

case. I too do not want to rush into this and that is why I posted the

original post, but by looking at other A patients reports it looks like a

reasonable option for the stage of her disease. Sometimes the attacks

in her chest are severe enough that she just lays on her bedroom floor

clutching her chest in pain and sobs and she is once again loosing

weight. A definite concern is waiting too long and risking a ruptured

esophagus and the increased risk of cancer. Again I appreciate everyones

help, concerns and suggestions. The fact that others have gone through

what she is experiencing can be so beneficial, I know she feels

different because she has a disease that is so rare in young people.

>

>

> Todd

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