Re: Re: UCLA Manometry Achalsia Nightmare

[Guest guest]

Scarlett,

 

I am surprised that UCLA did not suspect Achalasia.  I went to all the GIs

elsewhere and they did not figure it out.  But when my Primary Care doc from

UCLA sent me to the GI guys there they knew right away.  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 and experience with a specific

interest in the esophagus and she has told me she wishes she can focus on

Achalasia alone but there is just too few of cases for her to do that.  Dr.

Roth runs the GI lab/clinic that does the the manometry and

endoscopy/colonoscopy at UCLA. 

 

Good luck,

 

Mat

________________________________

From: ScarlettM <scrlttmay@...>

achalasia

Sent: Thursday, October 27, 2011 2:57 PM

Subject: Re: UCLA Manometry Achalsia Nightmare

 

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]

Matt- dr Maish has left UCLA as of Oct19. I do not know where she is going--

someone in her office just said they thought to SF Bay Area.

Does anyone know where she went?

On Oct 27, 2011, at 9:26 PM, Mat T <matbjj@...> wrote:

> 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]

I did not know that.  Yikes.  I have a follow up with her in a few months.

________________________________

From: Steph Cipresse <steph@...>

" achalasia " <achalasia >

Sent: Thursday, October 27, 2011 9:58 PM

Subject: Re: Re: UCLA Manometry Achalsia Nightmare

 

Matt- dr Maish has left UCLA as of Oct19. I do not know where she is going--

someone in her office just said they thought to SF Bay Area.

Does anyone know where she went?

On Oct 27, 2011, at 9:26 PM, Mat T <matbjj@...> wrote:

> 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]

Let us know what you find out.

On Oct 27, 2011, at 10:21 PM, Mat T <matbjj@...> wrote:

> I did not know that. Yikes. I have a follow up with her in a few months.

>

> ________________________________

> From: Steph Cipresse <steph@...>

> " achalasia " <achalasia >

> Sent: Thursday, October 27, 2011 9:58 PM

> Subject: Re: Re: UCLA Manometry Achalsia Nightmare

>

>

>

> Matt- dr Maish has left UCLA as of Oct19. I do not know where she is going--

someone in her office just said they thought to SF Bay Area.

>

> Does anyone know where she went?

>

>

> On Oct 27, 2011, at 9:26 PM, Mat T <matbjj@...> wrote:

>

> > 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 wrote:

>

> ... 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 wish you well.

notan

[Guest guest]

> Scarlett wrote:

> >

> > ... 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

[Guest guest]

Oh Scarlett I am so glad that you have some confirmation that there is a a

physical problem. Now let's hope they are clever enough to figure out what it

is. Tell your Mom to keep up her mama bear advocacy for you---she will still

probably need it.

On Oct 28, 2011, at 9:00 AM, " ScarlettM " <scrlttmay@...> wrote:

> no its not in your head

[Guest guest]

Great questions, Notan. Seems very odd to get inability to swallow with the les

never closing. Exact opposite mechanics yet similar symptoms.

On Oct 28, 2011, at 10:16 AM, notan ostrich <notan_ostrich@...> wrote:

>

> > Scarlett wrote:

> > >

> > > ... 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

>

>