Re: Re: Payne 5 Years old Achalasia, Mega- Esophagus, Tracheal Malaysia

[Guest guest]

wrote:

>

> Thanks Kim, have looked into the Mayo clinic as well, but did not know

> they were the best Achalasia center.

>

I don't like to get into the who is best thing but I had mine in AZ at

Mayo by Dr. Kristi Harold, but I don't know if she does many children

with achalasia. You would have to ask her. Which is one of the first

questions you should be asking anyone you contact.

Kristi L. Harold

http://www.mayoclinic.org/bio/12342114.html

notan

[Guest guest]

Hi, Tamiko

Tamiko wrote:

>

> ... More importantly, you HAVE to take children to pediatric

> specialists. They have to be seen and treated at pediatric hospitals

> by doctors who see a lot of a certain kind of patient.

>

It is hard with achalasia and children because it can first be hard to

find a surgeon who treats lots of achalasia patients and then to try to

find one that treats children. Sometime you can find the achalasia

expert who works with a pediatric surgeon and as a team they get it done.

notan

[Guest guest]

Pahrump2009 wrote:

>

> So in doing that procedure does that eliminate the " pipe " altogether?

>

An " ectomy " may remove only some or as much as possible. Often they

leave just a " stump " in the neck to reconnect to. Pulling the stomach up

is called a gastric pull-up. When they do that they remodel the stomach

into a tube and then pull it up and connect it to the stump.

>

> I am curious what are " dial actions " ?

>

I believe that should have been dilatations. That is where a balloon or

another device is used to stretch the muscles of the Lower Esophageal

Sphincter (LES) until muscle fibers in it break. That weakens the LES

and reduces the pressure it makes so food can get past it easier.

> Recently I have read about them growing a tracheal tube from stem

> cells in Denmark, which could also be applied to reconstructing the

> esophagus and bladder.

>

We have had some discussions about this kind of thing. First, it is only

experimental. You would have to get into an experimental program. The

cells they use may be " processed " No one know what the long-term results

of those processes will be on the cells produced. Sometimes you don't

know what changes do to cells for decades. When children swallow lye the

damage to the esophagus leads to a risk for cancer but that cancer does

not show up until decades later. The tracheal is a less complex tube

than the esophagus. For this kind of thing to work as a normal esophagus

the nerves to the muscles would have to connect and function normally.

If you grow it outside the body how do make the connections? If you

don't you just get a tube. You can do that by gastric pull-up or by

using some intestine or colon and not have to worry about what those

processed cells are going to do. Most of the use of this kind of thing

is going to be in situations where there is no other option. Don't

expect it to generally be the standard solution for years to come.

> I know our government is preventing us from researching that direction

> now but I am hopeful for the future.

>

Actually it doesn't, and that is a common misconception. No federal law

has ever banned any kind of stem cell research in the United States.

Federal law did restrict federal funding for embryonic stem-cell

research. Private funding continued to fund whatever it wanted in

stem-cells. The story you link to says the cells used were the

" patient's own. " He wasn't embryotic so this would have nothing to do

with embryonic stem-cell or laws related to them. The second link was

about researchers at the University of Washington doing research with

adult stem-cells.

>

>

> http://www.cbsnews.com/8301-504763_162-20077828-10391704.html

> http://www.eurekalert.org/pub_releases/2004-02/uow-scf021704.php

>

Here are some other stories you may find interesting.

Forest University in North Carolina

Doctors grow organs from patients' own cells

http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html

Growing Body Parts - 60 Minutes story

http://www.cbsnews.com/stories/2010/07/21/60minutes/main6698375.shtml

University of Washington, Seattle, USA

Development of an esophagus acellular matrix tissue scaffold.

http://www.ncbi.nlm.nih.gov/pubmed/16548690

Crosslinking of an oesophagus acellular matrix tissue scaffold.

http://www.ncbi.nlm.nih.gov/pubmed/18618611

s Hopkins University School of Medicine, Baltimore, MD, USA

Microelastic properties of lung cell-derived extracellular matrix

http://www.ncbi.nlm.nih.gov/pubmed/20656080

University of Pittsburgh

Esophageal Tissue Engineering

http://www.mirm.pitt.edu/badylak/projects/Esophageal_Tissue_Engineering.asp

Persistence earned new esophagus

http://assets.mediaspanonline.com/prod/4596864/06-10-2010_C-05.pdf

" Doctors removed about 6 inches of his esophageal lining and then put in

the scaffolding tissue from a pig's bladder, known as the extracellular

matrix. "

While all that is a ways away from growing a complete and fully

functional esophagus it does show that such research is being done and

done here in the US. Just don't hold your breath waiting for it.

>

> Also I am curious about Acell technology (the stuff that grew the

> finger on the guy that cut it off). It seems that that could be a

> direction as well, they were stating that placed next to dead nerves

> it could possible grow them back.

>

Could be part of the answer.

notan

[Guest guest]

The one in Minnesota - the second on the list is Cleveland!

________________________________

From: Pahrump2009 <vizionx@...>

achalasia

Sent: Wednesday, February 29, 2012 12:41 AM

Subject: Re: Payne 5 Years old Achalasia, Mega- Esophagus,

Tracheal Malaysia

 

>

> Oh my gosh  - I am so sorry she has to endure this at such a young age.

I am sure you already know this is a degenerative disorder and there is no cure.

As far as I know the motility cannot be restored once it is gone. My heart and

prayers are with you and your family! From what I have ready, next to the Mayo

Clinic Ohio has the second best Achalasia center in the US.

>  

> Best of luck to you guys!

>  

> Kim A 

Thanks Kim, have looked into the Mayo clinic as well, but did not know they were

the best Achalasia center. Which one Florida, Minnesota, or Arizona? - Chris