SCARLETT!!

[Guest guest]

Dear Scarlett and mom....

Girl you need to be running and not stopping to the nearest specialist!! I want

to tell you that my son, now 20 had a similar experience at  15. 

Let's start though at right now... With the statement and this is to all of you

looking for help... With a VERY rare disorder... you need to by pass all the

wanna y be's and go to the top.. TO THE TOP... !!!!  THE VERY TOP!!!

 

To Scarlett's mom...  I do not know if you have the tiger mentality, but you and

if there is a Mr. need to be strong advocates for you daughter.... NO ONE is

going to do anything UNLESS you are telling them want done... NOW!!!

 

Kudo's to whomever thought it might be Achalasia...

 

Scarlett when will you be 18?  This is going to make a difference on whom you

search out.  But lets move on... I assume you live in the So Cal area.

Are you able to travel?

Research:  

http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Home & TEMPLATE=/CM/Cont\

entDisplay.cfm & CONTENTID=1309

you will see Dr. Marco Patti's name on a lot of research papers.. He is top of

the line but now located in Chicago.. 

This just a few...

Carolyn mom of Cameron

Myo'd and Fundo'd in 2005

at  UCSF by Dr. Patti.

 

 

Lawrence W. Way, M.D.

Professor Emeritus of Surgery

Division of General Surgery

Contact Information

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Title

Assistant Professor in Residence

School

UCSF School of Medicine

Department

Surgery

Address

521 Parnassus Ave, Clinic Sci

San Francisco, CA, 94143

Telephone

415-476-0974

Fax

415-476-9557

Email

 

School

UCSF School of Medicine

Department

Surgery

Address

4 Koret Way

Telephone

415-476-6359

Fax

415-476-9557

Email

Lucille Packard Childrens Hosp.  Stanford University

Craig Albanese, M.D., M.B.A.

Office phone: 650-724-3664

E-mail: calbanese@...

Sanjeev Dutta, M.D.

Office phone: 650-723-6439

E-mail: sdutta1@...

Home > Specialties > Center for Esophageal Diseases > Patient Stories >

Medical Center Surgeon Provides Relief for Iowa Teen with Rare Swallowing

Disorder

(Scarlett, my son's story)

 

Nick Metcalf had always been an active teenager, involving himself in his high

school theater program, playing baseball in a league and socializing with

friends. But in March 2007, at the age of 16, while eating some spaghetti,

Metcalf had the sensation that he could not swallow.

That meal was the beginning of a struggle that lasted nearly one and a half

years, during which Metcalf had problems not only eating and drinking but also

in obtaining an accurate diagnosis.

" The first time it happened, it hit me so suddenly, " said Metcalf, who lives

with his parents in Bettendorf, Iowa, 175 miles due west of Chicago. " But from

that point forward, I had to eat very slowly and stick to a limited diet. I also

became embarrassed to eat with my friends because I often had to run to the

bathroom to regurgitate. "

What was even more frustrating for Metcalf was his inability to find a physician

able to diagnose the problem. After numerous visits with physicians who didn't

have any answers, Metcalf finally sought care at the University of Iowa where he

underwent esophageal manometry testing, during which a thin tube is passed

through the nose, down the back of the throat and into the esophagus to assess

the function of the esophagus.

The test showed that Metcalf had esophageal achalasia, a relatively rare

disorder characterized by incomplete relaxation of the lower esophageal

sphincter during swallowing and inability of the esophagus to contract. As a

consequence, patients with the disorder experience dysphagia, regurgitation,

chest pressure and heartburn.

When adequate treatment is not given to patients with achalasia, they can

develop complications beyond weight loss, such as esophagitis (inflammation of

the esophageal lining), and aspiration pneumonia, which results from fluid being

aspirated into the lungs during episodes of regurgitation.

Once Metcalf was diagnosed, he turned to an online community of achalasia

sufferers for support and advice. Patients in the group overwhelmingly

recommended that he contact Marco Patti, MD, director of the Center for

Esophageal Diseases at the University of Chicago Medical Center.

" For patients with achalasia, the surgical approach to treatment is similar to

opening the end of a funnel so food can pass through to the stomach via

gravity, " said Patti, one of the world's leading authorities on minimally

invasive esophageal surgery and achalasia.

Metcalf sent his medical records to Patti and scheduled a phone consultation.

During the call, Patti explained step by step the surgical procedure he said

relieves symptoms in 85 to 90 percent of patients.

" I could tell right from that conversation that this was a physician with a big

heart who truly empathized with what I had been going through, " Metcalf said.

" His confidence in being able to surgically solve my problem convinced me that

this was the right surgeon for the job, and I scheduled the surgery for May

2008. "

Metcalf and his mother, Vincie, arrived in Chicago and stayed with relatives for

the night prior to the procedure. On the Friday morning he was scheduled for

surgery, Metcalf arrived at the University of Chicago Medical Center and met

Patti for the first time in person.

After Metcalf received general anesthesia, Patti performed a laparoscopic

myotomy and a partial fundoplication. Through five small incisions, Patti made a

lengthwise cut (myotomy) three inches long through the muscle layers of the

esophagus, starting above the lower esophageal sphincter and extending onto the

stomach. This incision essentially opens up the muscular layer that is

tightening the esophagus, allowing food to pass from the esophagus into the

stomach.

To prevent stomach acid from refluxing upward after the myotomy, Patti performed

a partial fundoplication as well. This part of the procedure involves wrapping

part of the stomach around the esophagus and stitching it into place, preventing

acid from backflowing from the stomach into the esophagus.

Because the surgery is performed through several small incisions instead of one

larger incision, it offers patients a faster and more comfortable recovery, with

minimal pain and scarring, as compared to open surgery.

" The surgery has provided me with truly amazing results, " Metcalf said. " During

recovery I had some pain from the incisions, but that was the extent of it

because the esophagus has no pain receptors. "

By midday Saturday, Metcalf took a sip of water at Patti's request and found

that he could swallow easily. He then looked up at Patti and said, " Thank you

for giving me my life back. "

Today, Metcalf continues to feel well, has gained all of the lost weight back

and is back to enjoying life as a normal, healthy teenager. This fall, he will

attend Santa College in California as a freshman and study film.

" I'm very hopeful that these amazing results will last 20 years, " Metcalf said.

" But if I ever have any problems with achalasia again, I know Dr. Patti will be

there for me. "

August 2009

http://www.uchospitals.edu/specialties/esophageal/patient-stories/nick-achalasia\

..html

>

>> Hello there my name is Scarlett May Mendez. I have been having back pain and

constant regurgitation. I am 5'6 and a half and my weight has plumbed to an

unhealthy 87-90 pounds as it varies by day. I feel like i have entered the

biggest battle of my life with the support of my mom and grandma we met with

child protective service who because we went against medical advice of impatient

eating disorder treatment we met with them and they are actually on are side. It

is just humilaiting because my mother is the best mom better thn all the doctors

as she has done so much reasearch as have i on achalsia as it is all my symptoms

but the doctors in my little corona town never mentioned it or looked for it.

They jumped straight to psychosomatic =[ i went to UCLA due to me having

Superior Mesenteric Artery Syndrome brought on by rapid weight loss i did in my

early teens going from 175 to 115 in a mere 7 months through what i foresaw as

being a diet though it was

not healthy i knew i needed help and went to eating disorder treatment completed

it but still was not gaining significant weight and then i had terrible chest

pain and was rushed to e.r this is when i was sent to the hospital and diagnosed

with S.M.A i was treated and my weight was still low but the s.m.a had opened up

and i noticed though even it was open the regurgitation was getting far worse at

first i would swallow it because if my s.m.a was fixed my doctors told me it was

just acid reflux and as my weight continued to go down i was hell bent on just

swallowing the regurgitation to keep some nutrients in this is what landed me in

the E.R recently with a distended stomach and vomiting buckets and buckets of

food from days before.

>

>> It was horrific and the doctors ran a test saw that my s.m.a was back. As

treatment progressed through me gaining weight via intravenous nutrients i was

still unable to swallow food and once the S.m.A got better and the vomiting and

regurgitation continued is when they said it was my eating disorder coming back

and all in my head now. My mother had to fight to get me sent from Loma

Hospital to UCLA who then saw i had a hernia and since the I.V over 2 months and

5 days of being hospitalized stabilized me they ran one more test to figure out

why i was vomiting but the barium couldn't even pass so the test became

inclusive and the ct scan was done on only my lower stomach just proving that

through the i.v my s.m.a had healed. I never had anything done to my esophagus

or the esophagus manometry done which is shame because of the trouble the food

got trying to go down to even reach the stomach before it comes shooting out.

The doctors based on my

past then wanted me sent impatient for an eating disorder treatment because i

was psycho symptomatic doing it to myself and if i go home because what i have

isn't an eating disorder still vomiting im at risk and can sue but if in e.d

clinic still throwing up and told it is in my head even though i know i have no

control over this and my family knows this too. This hurt me so much because i

could not wrap my thoughts around this whole time simply doing this to myself

from the back pain they didn't look at twice to misdiagnosing me with acid

reflux to even at Loma Hospital before they even saw my s.m.a saying it

was eating disorder and made me have no t.v in the hospital or phone and 

journaling after every vomit trying to get me to write my thoughts about

vomiting which was humiliating because i don't know why i would vomit but im ure

they wanted me to write like i made myself through my mind vomit cause i dont

know sad and this went on for the

first week in the hospital as they shoveled all foods down my throat, before i

was transferred to the G.I team there and i did it all without complaint cause

they are doctors after all and who am i but just a crazed eating disorder girl

who has no control over her vomit. It actually wasnt until i regurgitated

practically on the pediatric team that they sent me to g.i but by then my s.m.a

got worse and then i had to transfer to ucla for help where they fixed the s.m.a

and what they thought could have been a hernia but with the regurgitation

persisting and that since they only see eating disorder written on my head they

continue to push it down my throat. My mother and me saw past that and

went against there recommendation for impatient because we knew we needed this

test because

>> I cant keep food down besides like broth and grapes sometimes if im lucky

>> my throat makes a noise like a croaking

>> i have back pain constantly that my doctors had the nerve to say it was only

because i was in the hospital for so long and had to lie in bed all day but now

that i'm not in the hospital it is still there!

>> diarrhea

>> there is no way i could wrap my head around this just being an eating

disorder

>> then reading what you guys put i feel so not alone i relate with everything

that it saddens me because none of my doctors listened and me and my mother are

fighting to keep me out of impatient it is so embarrassing.