Re: UCLA Manometry Achalsia Nightmare

[Guest guest]

OMG! How stupid doctors can be!

You are smart and know what is wrong with you! Every time you see a Dr,

insist that you have Achalasia and want to see the GI's in that department!

You are not a psych patient, tho you will be if they keep giving you that

bunk!

I know they have a good GI Dept at UCLA. Stay with it. The manometry will

tell you for sure how the LES and esophagus are working...or probably not.

That is the definitive test. If you are not happy, go to Cedars Sinai. They

have a fabulous dept for GI disorders. I had my Hellers and Dor's

Fundoplication there. They knew what was wrong with me when I walked in the

door.

USC has a good dept too. All 3 are good. Get to the right Dr. at UCLA and

push through! It's amazing how many Drs. never heard of Achalasia, including

my GI in Santa Barbara.

YOU KNOW YOUR BODY!!!! Keep fighting for the right help.

Call if you want more help

in Santa Barbara

805.565.1332/881.2181

In a message dated 10/27/2011 12:23:19 P.M. Pacific Daylight Time,

scrlttmay@... writes:

On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom

rushed me to the Ucla E.R.

Once there I got an I.V and in walks this general pediatric doctor who

said if we do not agree to go to eating disorder treatment I will not be

admitted. It shocked me and my mom and we wanted to speak to the g.I doctors we

spoke to on Monday. Last time I we took there advice to go to eating

disorder treatment here at ucla I was down there for a week and lost about 8

pounds also fainted on the tile and got bruised they couldn't figure out why I

was vomiting they tried breathing techniques with me everything and they

even stuck tubes down my nose both of which I regurgitated and then started

vomiting blood after anyways they eventually sent me to g.I team for t.p.n

and p.I.cc line and they thought I had hernia. But now knowing what achalsia

feel that these are all my symptoms even the back pain and chest pain

(funny cause when we mentioned back pain or chest pain last time they said it

was heart burn or the back pain was from laying in a hospital bed all day)

they never looked for achalasia.

So once that first lady doctor stomped off in walked g.I and said I would

be admitted to the hospital just fine and won't let physce come see me at

all til after my manometry if needed. It was like night and day to what the

other lady said. They even said I could keep my appointment for the

manometry on Thursday they would just have to take me like across the street by

ambulance in secret tunnels lol

So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who

were g.I doctors and just popped in and were like physce team could teach me

breathing techinques and then just walked away and left me there. I was so

insulted is this all they think about me. =( I wish I could do breathing and

it would go away =(

This leads to Thursday the day of the test at 9. But of course no one

called dispatch or even bothered to call anybody so now it got postponed til 4.

And I'm npo and throwing up bile and bubbles and I just want some water

but have to wait and my stomach hurts like crazy =( than child protective

services calledcause they got word I was admitted to hospital malnourished and

said why didn't we take the recomendation for eating disorder treatment my

mom was all that's what physce recomended and not g.is not to mention I

only saw physce for like five seconds and to get the g.I recomendations for

this test and go through the insurance and all that took forever. Cps they

were very scary and threatning cps and it hurts me so much cause my mom is

my hero and warrior she is an amazing mom and they threatened to intervene

it was terrible. its weird cause I had a barrium swallow test and threw up

almost all the barium back on myself and the little that did stay in

wouldn't move they act ually sent me back upstairs to a hospital bed to wait 2

hours til it finally moved and I remember pooping it like 2days later yet they

said that the test showed nothing so now I wonder what the manometry could

show because this whole physcosymptomatic name they gave me or eating

disorder name is getting very old. =(

[Guest guest]

Oh Scarlet -- I am sorry this is so horribly hard. Those other doctors seem

callous and ill informed! Maybe your GI doctors can write a note that you just

hand to people to tell them to stop harassing you until you have the Manometry.

I know my surgeon wrote one that he had someone tape over my bed that said

something like " don't do anything that isn't an order from me to this patient "

with his pager # on it. The breathing techniques might help you be calm in the

face of heir poor behavior -- but it is not going to change the way your

esophagus works in any instantaneous way!

I hope this monometry test gives you decisive results. Did they even review

the Barium swallow results with you & your mom? And I like the vision of you

going by ambulance & secret tunnel to your manometry test -- it's not like a

manometry test is some great treat that you are trying to get into it.

Have they scheduled an endoscopy yet?

Well they will all be pretty embarassed when they realize how wrong they were --

hang in there. We are all thinking of you today.

On Oct 27, 2011, at 12:23 PM, ScarlettM wrote:

> On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

>

> Once there I got an I.V and in walks this general pediatric doctor who said if

we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all day) they never looked for achalasia.

>

> So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

>

> So yesterday I ate and was reswallowing my vomit cause I hate spitting it out

but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

>

> This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in wouldn't move they actually sent me back upstairs to a

hospital bed to wait 2 hours til it finally moved and I remember pooping it like

2days later yet they said that the test showed nothing so now I wonder what the

manometry could show because this whole physcosymptomatic name they gave me or

eating disorder name is getting very old. =(

>

>

[Guest guest]

Dr. Roth is a GI doc at UCLA who specializes in Achalasia. 

http://esophagealcenter.ucla.edu/body.cfm?id=35

From: " julieok@... " <julieok@...>

achalasia

Sent: Thursday, October 27, 2011 12:33 PM

Subject: Re: UCLA Manometry Achalsia Nightmare

 

OMG! How stupid doctors can be!

You are smart and know what is wrong with you! Every time you see a Dr,

insist that you have Achalasia and want to see the GI's in that department!

You are not a psych patient, tho you will be if they keep giving you that

bunk!

I know they have a good GI Dept at UCLA. Stay with it. The manometry will

tell you for sure how the LES and esophagus are working...or probably not.

That is the definitive test. If you are not happy, go to Cedars Sinai. They

have a fabulous dept for GI disorders. I had my Hellers and Dor's

Fundoplication there. They knew what was wrong with me when I walked in the

door.

USC has a good dept too. All 3 are good. Get to the right Dr. at UCLA and

push through! It's amazing how many Drs. never heard of Achalasia, including

my GI in Santa Barbara.

YOU KNOW YOUR BODY!!!! Keep fighting for the right help.

Call if you want more help

in Santa Barbara

805.565.1332/881.2181

In a message dated 10/27/2011 12:23:19 P.M. Pacific Daylight Time,

scrlttmay@... writes:

On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom

rushed me to the Ucla E.R.

Once there I got an I.V and in walks this general pediatric doctor who

said if we do not agree to go to eating disorder treatment I will not be

admitted. It shocked me and my mom and we wanted to speak to the g.I doctors we

spoke to on Monday. Last time I we took there advice to go to eating

disorder treatment here at ucla I was down there for a week and lost about 8

pounds also fainted on the tile and got bruised they couldn't figure out why I

was vomiting they tried breathing techniques with me everything and they

even stuck tubes down my nose both of which I regurgitated and then started

vomiting blood after anyways they eventually sent me to g.I team for t.p.n

and p.I.cc line and they thought I had hernia. But now knowing what achalsia

feel that these are all my symptoms even the back pain and chest pain

(funny cause when we mentioned back pain or chest pain last time they said it

was heart burn or the back pain was from laying in a hospital bed all day)

they never looked for achalasia.

So once that first lady doctor stomped off in walked g.I and said I would

be admitted to the hospital just fine and won't let physce come see me at

all til after my manometry if needed. It was like night and day to what the

other lady said. They even said I could keep my appointment for the

manometry on Thursday they would just have to take me like across the street by

ambulance in secret tunnels lol

So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who

were g.I doctors and just popped in and were like physce team could teach me

breathing techinques and then just walked away and left me there. I was so

insulted is this all they think about me. =( I wish I could do breathing and

it would go away =(

This leads to Thursday the day of the test at 9. But of course no one

called dispatch or even bothered to call anybody so now it got postponed til 4.

And I'm npo and throwing up bile and bubbles and I just want some water

but have to wait and my stomach hurts like crazy =( than child protective

services calledcause they got word I was admitted to hospital malnourished and

said why didn't we take the recomendation for eating disorder treatment my

mom was all that's what physce recomended and not g.is not to mention I

only saw physce for like five seconds and to get the g.I recomendations for

this test and go through the insurance and all that took forever. Cps they

were very scary and threatning cps and it hurts me so much cause my mom is

my hero and warrior she is an amazing mom and they threatened to intervene

it was terrible. its weird cause I had a barrium swallow test and threw up

almost all the barium back on myself and the little that did stay in

wouldn't move they act ually sent me back upstairs to a hospital bed to wait 2

hours til it finally moved and I remember pooping it like 2days later yet they

said that the test showed nothing so now I wonder what the manometry could

show because this whole physcosymptomatic name they gave me or eating

disorder name is getting very old. =(

[Guest guest]

Thank you julie, matt and stephanie. Your guys helpful advice and words of

encouragement really mean so much. I saved your number julie and found dr. Roth

number and saved his aswell.

No one ever reviewed the barium results with me or my mom at all maybe I should

call dr.roth to go over them as he seems more qualified and is from UCLA. Word

from the doctor the results from this test may possibly be available tomorow as

they will be gone over by dr.varsques I think is name never met him but I heard

he can read manometry test. Still waiting for the wheel chair to go down and

take the test.my grandpa said hell get me a skateboard and push me down there

lol I hope its not to bad for me I heard people get pretty panicy during the

manometry but hey I can use my breathing techniques lol jk =) we have yet to

schedule an endoscopy but they did mention a ph test but I find I think it was

canceled. Like stephanie said I will even look into cedars sounds so fancy in

beverly hills lol

>

> > On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

> >

> > Once there I got an I.V and in walks this general pediatric doctor who said

if we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all day) they never looked for achalasia.

> >

> > So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

> >

> > So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

> >

> > This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in wouldn't move they actually sent me back upstairs to a

hospital bed to wait 2 hours til it finally moved and I remember pooping it like

2days later yet they said that the test showed nothing so now I wonder what the

manometry could show because this whole physcosymptomatic name they gave me or

eating disorder name is getting very old. =(

> >

> >

>

>

>

>

[Guest guest]

I am so sorry you have to go through this. As a mom I know that if my child

had to suffer through this I would fight to get her the proper treatment. I

hope that someone will listen to you and your Mom soon.

S

-- UCLA Manometry Achalsia Nightmare

On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom

rushed me to the Ucla E.R.

Once there I got an I.V and in walks this general pediatric doctor who said

if we do not agree to go to eating disorder treatment I will not be admitted

It shocked me and my mom and we wanted to speak to the g.I doctors we spoke

to on Monday. Last time I we took there advice to go to eating disorder

treatment here at ucla I was down there for a week and lost about 8 pounds

also fainted on the tile and got bruised they couldn't figure out why I was

vomiting they tried breathing techniques with me everything and they even

stuck tubes down my nose both of which I regurgitated and then started

vomiting blood after anyways they eventually sent me to g.I team for t.p.n

and p.I.cc line and they thought I had hernia. But now knowing what achalsia

feel that these are all my symptoms even the back pain and chest pain (funny

cause when we mentioned back pain or chest pain last time they said it was

heart burn or the back pain was from laying in a hospital bed all day) they

never looked for achalasia.

So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all

til after my manometry if needed. It was like night and day to what the

other lady said. They even said I could keep my appointment for the

manometry on Thursday they would just have to take me like across the street

by ambulance in secret tunnels lol

So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who were

g.I doctors and just popped in and were like physce team could teach me

breathing techinques and then just walked away and left me there. I was so

insulted is this all they think about me. =( I wish I could do breathing and

it would go away =(

This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And

I'm npo and throwing up bile and bubbles and I just want some water but have

to wait and my stomach hurts like crazy =( than child protective services

calledcause they got word I was admitted to hospital malnourished and said

why didn't we take the recomendation for eating disorder treatment my mom

was all that's what physce recomended and not g.is not to mention I only saw

physce for like five seconds and to get the g.I recomendations for this test

and go through the insurance and all that took forever. Cps they were very

scary and threatning cps and it hurts me so much cause my mom is my hero and

warrior she is an amazing mom and they threatened to intervene it was

terrible. its weird cause I had a barrium swallow test and threw up almost

all the barium back on myself and the little that did stay in wouldn't move

they actually sent me back upstairs to a hospital bed to wait 2 hours til it

finally moved and I remember pooping it like 2days later yet they said that

the test showed nothing so now I wonder what the manometry could show

because this whole physcosymptomatic name they gave me or eating disorder

name is getting very old. =(

------------------------------------

As a member of this group, you are invited to join the HealthShare Groups

community center located at http://healthsharegroups.org. The community

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groups for sharing of information and support.

[Guest guest]

As a mom who has a 14 y/o with achalasia...after 4 different hospitals and

testing in all of them...I turned into the mom from hell. I knew more than them

and I had no issues going above whose ever head it was. And that was after she

was diagnosed...hospitals just dont have as much knowledge about childrens

achalasia and unfortunately they dont like to look uninformed. Good luck and

tell mom to stand firm!!

From: ScarlettM <scrlttmay@...>

Subject: UCLA Manometry Achalsia Nightmare

achalasia

Date: Thursday, October 27, 2011, 2:23 PM

 

On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

Once there I got an I.V and in walks this general pediatric doctor who said if

we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all

day) they never looked for achalasia.

So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

So yesterday I ate and was reswallowing my vomit cause I hate spitting it out

but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in

wouldn't move they actually sent me back upstairs to a hospital bed to wait 2

hours til it finally moved and I remember pooping it like 2days later yet they

said that the test showed nothing so now I wonder what the manometry could show

because this whole physcosymptomatic name they gave me or eating disorder name

is getting very old. =(

[Guest guest]

Good luck to you!! Dealing with this condition and doctors is very challenging

(to say the least). After having 5 tests by an expert I asked a doctor " what was

wrong? " and he responded " that is a hypothetical question, isn't it, you don't

expect an answer. " Thought that would give you a laugh. But I was dumbfounded

when I heard this. Most doctors don't have a clue. In addition to dealing with

this rare illness we have to educate the specialists!

>

> From: ScarlettM <scrlttmay@...>

> Subject: UCLA Manometry Achalsia Nightmare

> achalasia

> Date: Thursday, October 27, 2011, 2:23 PM

>

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> On Monday the ucla G.I team set up a manometry test for Thursday they

were going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

>

>

>

> Once there I got an I.V and in walks this general pediatric doctor who said if

we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all

> day) they never looked for achalasia.

>

>

>

> So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

>

>

>

> So yesterday I ate and was reswallowing my vomit cause I hate spitting it out

but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

>

>

>

> This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in

> wouldn't move they actually sent me back upstairs to a hospital bed to wait 2

hours til it finally moved and I remember pooping it like 2days later yet they

said that the test showed nothing so now I wonder what the manometry could show

because this whole physcosymptomatic name they gave me or eating disorder name

is getting very old. =(

>

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[Guest guest]

I am a patient of Dr. Maish and guess I saw her on her last day at UCLA. I went

in for my 3 month post myotomy follow up on the 19th and she told me she was

leaving UCLA and gave me her new business card for Washington Township Medical

Foundation in Fremont, CA where she will be the Chief of Thoracic & Foregut

Surgery. There is no e-mail address for her ont the card but the phone number

is 510.248.1400, www.mywtmf.com.

The people up north are very lucky to be getting a great doctor!

When I originally had my surgery in July she told me she would like to follow me

for 2 years, but when I recently saw her she told me to not worry about follow

up unless I had some concerns and if I had any problems or questions to call her

first up in Fremont and she would help me find someone in the LA area to help or

I could go up north and see her. I have no double that should I need her she

will be there for me even tho she has relocated up north.

Best,

EK

> >

> > > I had my Heller Myotomy done by Dr. Maish immediately after my first

meeting with her. I think she is a wonderful Dr. who has lots of training

> >

> >

> >

> >

[Guest guest]

Scarlett,

I'm so sorry you are having such a horrible time! The medical community is very

uneducated on this rare condition and they don't like to admit their lack of

knowledge. I too heard it was " in my head " a " nervous condition " .... A GI

referred me to an ENT because " there was nothing else he could do & thought it

was stress related " but I insisted it wasn't so he pawned me off to the next

specialty. Fortunately a swallowing study was done & while there were no issues

at the throat level a very savvy tech strongly insisted to the radiology dr that

when the image scanned lower he was positive I had classic achalasia.

Unfortunately the radiologist refused to put that in his report because " the

patient is here for a swallowing study. I recommend she be referred to a GI for

testing " . I believe the dr had no clue was he was seeing (teaching hospital) so

in his fear of being wrong didn't even make a note of the possibility. I was

fortunate in both having overheard the conversation (I thought they were talking

about a diifferent patient) and being told by the speech pathologist that was

conducting the test - this type of test requires a speech pathologist present.

I went to a different GI with my new information and started all the testing all

over again. While the endoscope presented with resistance he couldn't be sure

with that alone. I was sent for a mannometry. That showed 90% dysmotility and a

hypertensive LES, with failure to relax. So because the dysmotility wasn't 100%

he said it wasn't achalasia. I persisted after many meds for spasms and no

relief. A barium swallow was done. The test was done by a tech that was

aggravated with me because I needed to swallow. She retook every single shot

until I swallowed " right " . I tried explaining but to no avail. That was a

waste. They never even got a shot of the LES....the doctor had put a dx of

esophageal spasms so thats what they focused on.

All I can tell you is DON'T give up! You know your body and something is wrong.

I was fortunate to accidentally meet the wife of a doctor I had read studies

written by. I recognized her name and asked if she was married to him. I

shared my years of looking for a diagnosis and frustration with doctors. I had

tried to appoint with him but he only took patients on review and referral from

a GI (and no GI would refer me). Mrs Rosemurgy talked to her husband, called me

back with his cell phone & he saw me that same week. I took every test, every

video, picture....everything. He wanted to see actual tests, not just the

reports. Right away his frustration with the medical community was apparent.

He said he was certain I had achalasia. He showed me why and explained why he

didn't feel I had Diffuse Esophageal Spasms. Yes I did have many spasms but not

DES. He sent me for 1 more barium study and when that came back it was a

classic picture of achalasia. So.....keep persisting! Unfortunately many times

you are at the mercy of who is doing the test and who is doing the report. Dr

Rosemurgy in Tampa Florida has done over 700 heller myotomies and has many

studies written on this disease. He did my HM and will be doing a 2nd one soon

to extend the myotomy. I hope you find answers soon - or change doctors.

>

> On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

>

> Once there I got an I.V and in walks this general pediatric doctor who said if

we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all day) they never looked for achalasia.

>

> So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

>

> So yesterday I ate and was reswallowing my vomit cause I hate spitting it out

but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

>

> This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in wouldn't move they actually sent me back upstairs to a

hospital bed to wait 2 hours til it finally moved and I remember pooping it like

2days later yet they said that the test showed nothing so now I wonder what the

manometry could show because this whole physcosymptomatic name they gave me or

eating disorder name is getting very old. =(

>

[Guest guest]

Hello everyone thank you for your words of encouragment.

The test went amazing and by amazing it was bad as far as the fact that my lower

esophageal sphincter just will not close. The lady who gave us the test looked

us dead in the face no its not in your head your Les won't close. I hugged heer

my mom was in tears during the test I had spasms and the salt water I was to

swallow went down fine but then they did this gel and I thought it went down

fine but came soaring back up. The lady who gave the test felt terrible they

didn't do this sooner and how wrong it was of them to rush me to the physce

diagnosis before this test. It ment so much to hear the words. She looked at the

results and doesn't believe what I have to be achalasia and recomended that the

doc may suggest a fundo type surgery but she is still gonna let the doctor look

at the results so now I'm just waiting to hear what my doctors have to say about

the results and course of action. (The doctors not the physce team) I also have

a list of doctors I would love an apology from but as of now I don't even care

it feels amazing to feel no more question of shame in myself it is so freeing

all this time carrying the whole in your head stigma really hurt but I did not

let it break me. =) thank u guys for your support even when I felt so bad about

myself you guys always had great advice that brought me right back up and gave

me hope thank you so much! =)=)

> >

> > On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

> >

> > Once there I got an I.V and in walks this general pediatric doctor who said

if we do not agree to go to eating disorder treatment I will not be admitted. It

shocked me and my mom and we wanted to speak to the g.I doctors we spoke to on

Monday. Last time I we took there advice to go to eating disorder treatment here

at ucla I was down there for a week and lost about 8 pounds also fainted on the

tile and got bruised they couldn't figure out why I was vomiting they tried

breathing techniques with me everything and they even stuck tubes down my nose

both of which I regurgitated and then started vomiting blood after anyways they

eventually sent me to g.I team for t.p.n and p.I.cc line and they thought I had

hernia. But now knowing what achalsia feel that these are all my symptoms even

the back pain and chest pain (funny cause when we mentioned back pain or chest

pain last time they said it was heart burn or the back pain was from laying in a

hospital bed all day) they never looked for achalasia.

> >

> > So once that first lady doctor stomped off in walked g.I and said I would be

admitted to the hospital just fine and won't let physce come see me at all til

after my manometry if needed. It was like night and day to what the other lady

said. They even said I could keep my appointment for the manometry on Thursday

they would just have to take me like across the street by ambulance in secret

tunnels lol

> >

> > So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

> >

> > This leads to Thursday the day of the test at 9. But of course no one called

dispatch or even bothered to call anybody so now it got postponed til 4. And I'm

npo and throwing up bile and bubbles and I just want some water but have to wait

and my stomach hurts like crazy =( than child protective services calledcause

they got word I was admitted to hospital malnourished and said why didn't we

take the recomendation for eating disorder treatment my mom was all that's what

physce recomended and not g.is not to mention I only saw physce for like five

seconds and to get the g.I recomendations for this test and go through the

insurance and all that took forever. Cps they were very scary and threatning cps

and it hurts me so much cause my mom is my hero and warrior she is an amazing

mom and they threatened to intervene it was terrible. its weird cause I had a

barrium swallow test and threw up almost all the barium back on myself and the

little that did stay in wouldn't move they actually sent me back upstairs to a

hospital bed to wait 2 hours til it finally moved and I remember pooping it like

2days later yet they said that the test showed nothing so now I wonder what the

manometry could show because this whole physcosymptomatic name t

[Guest guest]

Hi Scarlett

I have not heard about " your Les won't close " . Maybe notan could comment.

Mine over the last few years the LES closed up tightly so maybe we have

different conditions.

The UCI GI doctor who also is in private practice in Irvine,who did my manometry

test with the nurse helping him, immediately after the test was done said I have

clasical Achalasia.

I have now been able to hande it on my own, yes at time I have problems, but

better than an operation at my age. Butter opens the LES if closed and relaxes

it.

Guess I will never go to UCLA, have at times considered USC.

Ray

> > >

> > > On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

> > >

> > > Once there I got an I.V and in walks this general pediatric doctor who

said if we do not agree to go to eating disorder treatment I will not be

admitted. It shocked me and my mom and we wanted to speak to the g.I doctors we

spoke to on Monday. Last time I we took there advice to go to eating disorder

treatment here at ucla I was down there for a week and lost about 8 pounds also

fainted on the tile and got bruised they couldn't figure out why I was vomiting

they tried breathing techniques with me everything and they even stuck tubes

down my nose both of which I regurgitated and then started vomiting blood after

anyways they eventually sent me to g.I team for t.p.n and p.I.cc line and they

thought I had hernia. But now knowing what achalsia feel that these are all my

symptoms even the back pain and chest pain (funny cause when we mentioned back

pain or chest pain last time they said it was heart burn or the back pain was

from laying in a hospital bed all day) they never looked for achalasia.

> > >

> > > So once that first lady doctor stomped off in walked g.I and said I would

be admitted to the hospital just fine and won't let physce come see me at all

til after my manometry if needed. It was like night and day to what the other

lady said. They even said I could keep my appointment for the manometry on

Thursday they would just have to take me like across the street by ambulance in

secret tunnels lol

> > >

> > > So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

> > >

> > > This leads to Thursday the day of the test at 9. But of course no one

called dispatch or even bothered to call anybody so now it got postponed til 4.

And I'm npo and throwing up bile and bubbles and I just want some water but have

to wait and my stomach hurts like crazy =( than child protective services

calledcause they got word I was admitted to hospital malnourished and said why

didn't we take the recomendation for eating disorder treatment my mom was all

that's what physce recomended and not g.is not to mention I only saw physce for

like five seconds and to get the g.I recomendations for this test and go through

the insurance and all that took forever. Cps they were very scary and threatning

cps and it hurts me so much cause my mom is my hero and warrior she is an

amazing mom and they threatened to intervene it was terrible. its weird cause I

had a barrium swallow test and threw up almost all the barium back on myself and

the little that did stay in wouldn't move they actually sent me back upstairs to

a hospital bed to wait 2 hours til it finally moved and I remember pooping it

like 2days later yet they said that the test showed nothing so now I wonder what

the manometry could show because this whole physcosymptomatic name t

>

[Guest guest]

Yay!!!!! Awesome! So glad you finally have a diagnosis and can get the treatment

you need! The fundoplication is a procedure most of us have as well along with

our heeler myotomy so if you have any questions later feel free to ask you'll

get lots of answers.

So sad you had to go through all that. I think being female adds to the

attitudes of doctors that it's a pysch problem.

> > >

> > > On Monday the ucla G.I team set up a manometry test for Thursday they were

going to admit me because my weight had plumted and I lacked energy but my

vitals were okay just very low potassium. On Tuesday I fainted and my mom rushed

me to the Ucla E.R.

> > >

> > > Once there I got an I.V and in walks this general pediatric doctor who

said if we do not agree to go to eating disorder treatment I will not be

admitted. It shocked me and my mom and we wanted to speak to the g.I doctors we

spoke to on Monday. Last time I we took there advice to go to eating disorder

treatment here at ucla I was down there for a week and lost about 8 pounds also

fainted on the tile and got bruised they couldn't figure out why I was vomiting

they tried breathing techniques with me everything and they even stuck tubes

down my nose both of which I regurgitated and then started vomiting blood after

anyways they eventually sent me to g.I team for t.p.n and p.I.cc line and they

thought I had hernia. But now knowing what achalsia feel that these are all my

symptoms even the back pain and chest pain (funny cause when we mentioned back

pain or chest pain last time they said it was heart burn or the back pain was

from laying in a hospital bed all day) they never looked for achalasia.

> > >

> > > So once that first lady doctor stomped off in walked g.I and said I would

be admitted to the hospital just fine and won't let physce come see me at all

til after my manometry if needed. It was like night and day to what the other

lady said. They even said I could keep my appointment for the manometry on

Thursday they would just have to take me like across the street by ambulance in

secret tunnels lol

> > >

> > > So yesterday I ate and was reswallowing my vomit cause I hate spitting it

out but it eventually did come out but prior to two doctors came in who were g.I

doctors and just popped in and were like physce team could teach me breathing

techinques and then just walked away and left me there. I was so insulted is

this all they think about me. =( I wish I could do breathing and it would go

away =(

> > >

> > > This leads to Thursday the day of the test at 9. But of course no one

called dispatch or even bothered to call anybody so now it got postponed til 4.

And I'm npo and throwing up bile and bubbles and I just want some water but have

to wait and my stomach hurts like crazy =( than child protective services

calledcause they got word I was admitted to hospital malnourished and said why

didn't we take the recomendation for eating disorder treatment my mom was all

that's what physce recomended and not g.is not to mention I only saw physce for

like five seconds and to get the g.I recomendations for this test and go through

the insurance and all that took forever. Cps they were very scary and threatning

cps and it hurts me so much cause my mom is my hero and warrior she is an

amazing mom and they threatened to intervene it was terrible. its weird cause I

had a barrium swallow test and threw up almost all the barium back on myself and

the little that did stay in wouldn't move they actually sent me back upstairs to

a hospital bed to wait 2 hours til it finally moved and I remember pooping it

like 2days later yet they said that the test showed nothing so now I wonder what

the manometry could show because this whole physcosymptomatic name t

>

[Guest guest]

Good question Notan! True......maybe the lead never made it all e way down!

Unless this was Fluoroscopically-Guided

> > >

> > > ... The lady who gave us the test looked us dead in the face no its

> > > not in your head your Les won't close. ... and recomended that the doc

> > > may suggest a fundo type surgery ... .

> > >

> >

> > I think your doctors are going to be doing some head scratching.

> >

>

> I have been scratching my head and I have some questions.

>

> Was a high resolution manometer used or was it an older one with only

> about 4 channels?

>

> Is there any chance the manometer did not make it into the stomach and

> bent back up so the readings for the LES are incorrect?

>

> Aside from the LES how is your peristalsis?

>

> Any spasms detected?

>

> notan

>

>

>

>