New to the group

[Guest guest]

Thank you so much for your responses! And , don't worry about being too blunt with me, I respond well to it! I'm in Waterville, NY. Rochester is only 2 hours aways from me. I know the Shrinners there does Mehta EDF casting, as well as Strong Memorial. I'll be calling her orthopedic surgeon tomorow morning and again insisting on an x-ray in 2 months. I will also be asking for copies of her X-rays and contacting Shrinner's. Should I also be pushing for an MRI right now? That seems like something that I can get done now as long as I can get one of her doctors to write a script for it, though none of them have mentioned one. I did ask her ortho about the RVAD measurement. She said that she

wasn't able to get an accurate measurement but that a ball park figure would be about 15*. That made me feel better for about 2 minutes. I don't want a ball park figure. Thanks for all the advice, I'm really happy that I found CAST and ISOP! I finally feel like I may be heading in the right direction!

From: Tame Olson <dazies2001@...>infantile scoliosis treatment Sent: Monday, August 15, 2011 8:30 PMSubject: Re: New to the groupDitto :)Sent from my iPhoneOn Aug 15, 2011, at 7:11 PM, <missikay10@...> wrote:Hello,I'm going to be blunt...but only to help

you push for treatment NOW!! Contact a doc/hospital that does Mehta casting. Do it tomorrow. Without delay! Waiting 6 mos is asinine!! You are more than correct to question your current ortho. Mom always knows best! Get a copy of the most current xrays, take pics of your babys back while she is sitting so the Shriners hospital can see the urgency. Then get the closest Shriners or hospital that CURRENTLY does Mehta castings contact info and send it to them asap!! Then call and follow up...be proactive...this is your child and you know her best. Don't let your current ortho talk you out of your moms intuition. Where are you located? We can help you find the closest treating facility. Not to scare you but to inform you, most of the time the rib hump is evidence of rotation and progression. She is the perfect age for casting if its necessary. Sorry to seem so pushy but I'm so sick of these orthos letting our babiesfall thru the cracks. Follow your gut!

Ask us anything, anytime!kookiedz <kookiedz@...> wrote:Hi everybody. I'm new to this group and wanted to introduce myself and my family. I'm a special education teacher, currently staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been insistant on giving me grey hair since the moment she was born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night. Her brother technically saved her that night. He had gotten up in the night for the first time in months and after tucking him back in I checked on her to find her blue and foaming at the mouth.Shortly after it was recognized that she had torticollis and plagiocephaly. She has been in physical therapy since 4 months old but she continues to tilt. She wears an orthotic cranial

belt to help reshape her head.At five months old I was giving her a bath and noticed a bulging on the left side of her back. I immediately showed everybody, all who insisted they couldn't see anything wrong and that it probably just looked that way due to the tilt of her head. I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. THis didn't make much sense to me even at the time since she wasn't sitting on her own or doing anything that would create so much muscle build-up. Her physical therapist concurred. So I trusted the professionals. At 9 months old she was referred to a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her back after I practically begged. So she wasn't technically diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal rotation. She wants to wait 6

months for the next set of x-rays. We're in limbo right now butI've been on the phone a few times insisting we don't wait 6 full months. The doctor listens and is very easy to talk to but insists that we wait. She says it wouldn't change the course of her treatment either way. So I'm frustrated considering I've been waiting for answers for 6 months and now I'm being told I have to wait another 6 months. My husband and I are on the same page and agree we'll take her somewhere else if we have to. Does anybody have any suggestions/approaches on how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely familiar with the name but not with EDF casting. I'm gathering mateials to share with her, hoping it'll convince her to move the x-ray date up some. Of course we're praying that her curve will be self-resolving, but I've watched her rib hump grow from something that

nobody else could to see into something you can see even with clothes on, so if x-rays show that itis progressive, I know I want her casted and as soon as possible. I guess I just feel like theirs miles of red tape to get through and everywhere I've turned I've hit walls. Any advice would be so appreciated! I know many of you have had similar experiences.------------------------------------

[Guest guest]

Thank you so much for your responses! And , don't worry about being too blunt with me, I respond well to it! I'm in Waterville, NY. Rochester is only 2 hours aways from me. I know the Shrinners there does Mehta EDF casting, as well as Strong Memorial. I'll be calling her orthopedic surgeon tomorow morning and again insisting on an x-ray in 2 months. I will also be asking for copies of her X-rays and contacting Shrinner's. Should I also be pushing for an MRI right now? That seems like something that I can get done now as long as I can get one of her doctors to write a script for it, though none of them have mentioned one. I did ask her ortho about the RVAD measurement. She said that she

wasn't able to get an accurate measurement but that a ball park figure would be about 15*. That made me feel better for about 2 minutes. I don't want a ball park figure. Thanks for all the advice, I'm really happy that I found CAST and ISOP! I finally feel like I may be heading in the right direction!

From: Tame Olson <dazies2001@...>infantile scoliosis treatment Sent: Monday, August 15, 2011 8:30 PMSubject: Re: New to the groupDitto :)Sent from my iPhoneOn Aug 15, 2011, at 7:11 PM, <missikay10@...> wrote:Hello,I'm going to be blunt...but only to help

you push for treatment NOW!! Contact a doc/hospital that does Mehta casting. Do it tomorrow. Without delay! Waiting 6 mos is asinine!! You are more than correct to question your current ortho. Mom always knows best! Get a copy of the most current xrays, take pics of your babys back while she is sitting so the Shriners hospital can see the urgency. Then get the closest Shriners or hospital that CURRENTLY does Mehta castings contact info and send it to them asap!! Then call and follow up...be proactive...this is your child and you know her best. Don't let your current ortho talk you out of your moms intuition. Where are you located? We can help you find the closest treating facility. Not to scare you but to inform you, most of the time the rib hump is evidence of rotation and progression. She is the perfect age for casting if its necessary. Sorry to seem so pushy but I'm so sick of these orthos letting our babiesfall thru the cracks. Follow your gut!

Ask us anything, anytime!kookiedz <kookiedz@...> wrote:Hi everybody. I'm new to this group and wanted to introduce myself and my family. I'm a special education teacher, currently staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been insistant on giving me grey hair since the moment she was born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night. Her brother technically saved her that night. He had gotten up in the night for the first time in months and after tucking him back in I checked on her to find her blue and foaming at the mouth.Shortly after it was recognized that she had torticollis and plagiocephaly. She has been in physical therapy since 4 months old but she continues to tilt. She wears an orthotic cranial

belt to help reshape her head.At five months old I was giving her a bath and noticed a bulging on the left side of her back. I immediately showed everybody, all who insisted they couldn't see anything wrong and that it probably just looked that way due to the tilt of her head. I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. THis didn't make much sense to me even at the time since she wasn't sitting on her own or doing anything that would create so much muscle build-up. Her physical therapist concurred. So I trusted the professionals. At 9 months old she was referred to a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her back after I practically begged. So she wasn't technically diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal rotation. She wants to wait 6

months for the next set of x-rays. We're in limbo right now butI've been on the phone a few times insisting we don't wait 6 full months. The doctor listens and is very easy to talk to but insists that we wait. She says it wouldn't change the course of her treatment either way. So I'm frustrated considering I've been waiting for answers for 6 months and now I'm being told I have to wait another 6 months. My husband and I are on the same page and agree we'll take her somewhere else if we have to. Does anybody have any suggestions/approaches on how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely familiar with the name but not with EDF casting. I'm gathering mateials to share with her, hoping it'll convince her to move the x-ray date up some. Of course we're praying that her curve will be self-resolving, but I've watched her rib hump grow from something that

nobody else could to see into something you can see even with clothes on, so if x-rays show that itis progressive, I know I want her casted and as soon as possible. I guess I just feel like theirs miles of red tape to get through and everywhere I've turned I've hit walls. Any advice would be so appreciated! I know many of you have had similar experiences.------------------------------------

[Guest guest]

Hi ,

I don’t know the protocol for MRI.

My daughter was diagnosed at 49 deg. They ordered an MRI right away

(though it took us a few weeks to get in as she had a bad cold and they wouldn’t

sedate her until she was better). She was casted at Shriners within six

weeks or so of her diagnosis.

I’d suggest calling Shriners

tomorrow and asking what they want in preparation for her appointment. Hopefully

they’ll coordinate with your orthopedist to order the MRI before you have

your appt.

As for an accurate measurement, I received

three different numbers from three different doctors in the beginning –

from 40 to 49 degrees. There is a small degree of error in each reading,

plus or minus 3 degrees. So as long as the same person is reading her xrays

over time, you can count each individual to read it the same way each time and

that will give you (hopefully) a downward progression that you can trust.

Sherry

Re:

New to the group

Ditto

Sent from my iPhone

On Aug 15, 2011, at 7:11 PM, <missikay10@...>

wrote:

Hello,

I'm going to be blunt...but only to help you push for treatment NOW!! Contact a

doc/hospital that does Mehta casting. Do it tomorrow. Without delay! Waiting 6

mos is asinine!! You are more than correct to question your current ortho. Mom

always knows best! Get a copy of the most current xrays, take pics of your

babys back while she is sitting so the Shriners hospital can see the urgency.

Then get the closest Shriners or hospital that CURRENTLY does Mehta castings

contact info and send it to them asap!! Then call and follow up...be

proactive...this is your child and you know her best. Don't let your current

ortho talk you out of your moms intuition. Where are you located? We can help

you find the closest treating facility. Not to scare you but to inform you,

most of the time the rib hump is evidence of rotation and progression. She is

the perfect age for casting if its necessary. Sorry to seem so pushy but I'm so

sick of these orthos letting our babies

fall thru the cracks. Follow your gut! Ask us anything, anytime!

kookiedz <kookiedz@...> wrote:

Hi everybody. I'm new to this group and wanted to introduce myself and my

family. I'm a special education teacher, currently staying home to raise our

children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been

insistant on giving me grey hair since the moment she was born. She was

hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night.

Her brother technically saved her that night. He had gotten up in the night

for the first time in months and after tucking him back in I checked on her to

find her blue and foaming at the mouth.

Shortly after it was recognized that she had torticollis and

plagiocephaly. She has been in physical therapy since 4 months old but

she continues to tilt. She wears an orthotic cranial belt to help reshape

her head.

At five months old I was giving her a bath and noticed a bulging on the left

side of her back. I immediately showed everybody, all who insisted they

couldn't see anything wrong and that it probably just looked that way due to

the tilt of her head. I brought her to the pediatrician who insisted that

it was uneven muscle build-up from the tilt of her head. THis didn't make

much sense to me even at the time since she wasn't sitting on her own or doing

anything that would create so much muscle build-up. Her physical

therapist concurred. So I trusted the professionals. At 9 months old she was

referred to a neurosurgeon due to the persistant

torticollis/plagiocephaly. She ordered an x-ray of her back after I

practically begged. So she wasn't technically diagnosed until 11 months old.

Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal

rotation. She wants to wait 6 months for the next set of x-rays.

We're in limbo right now but

I've been on the phone a few times insisting we don't wait 6 full months.

The doctor listens and is very easy to talk to but insists that we wait. She

says it wouldn't change the course of her treatment either way. So I'm

frustrated considering I've been waiting for answers for 6 months and now I'm

being told I have to wait another 6 months. My husband and I are on the same

page and agree we'll take her somewhere else if we have to. Does anybody

have any suggestions/approaches on how to push up the x-ray date? I've

mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely

familiar with the name but not with EDF casting. I'm gathering mateials

to share with her, hoping it'll convince her to move the x-ray date up some.

Of course we're praying that her curve will be self-resolving, but I've watched

her rib hump grow from something that nobody else could to see into something

you can see even with clothes on, so if x-rays show that it

is progressive, I know I want her casted and as soon as possible. I guess

I just feel like theirs miles of red tape to get through and everywhere I've

turned I've hit walls. Any advice would be so appreciated! I know many of

you have had similar experiences.

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

[Guest guest]

For your area, I would say get a consult w/ Rochester. They are top notch

and super experienced in Early Treatment w/ Mehta/EDF casting.

Just an fyi...

> Thank you so much for your responses! And , don't worry about being

> too blunt with me, I respond well to it!  I'm in Waterville, NY. 

> Rochester is only 2 hours aways from me.  I know the Shrinners there does

> Mehta EDF casting, as well as Strong Memorial.  I'll be calling her

> orthopedic surgeon tomorow morning and again insisting on an x-ray in 2

> months.  I will also be asking for copies of her X-rays and contacting

> Shrinner's.  Should I also be pushing for an MRI right now?  That seems

> like something that I can get done now as long as I can get one of her

> doctors to write a script for it, though none of them have mentioned one. 

> I did ask her ortho about the RVAD measurement.  She said that she wasn't

> able to get an accurate measurement but that a ball park figure would be

> about 15*.  That made me feel better for about 2 minutes.  I don't want a

> ball park figure.  Thanks for all the advice, I'm really happy that I

> found CAST

> and ISOP!  I finally feel like I may be heading in the right direction!

>  

>

> From: Tame Olson <dazies2001@...>

> infantile scoliosis treatment

> Sent: Monday, August 15, 2011 8:30 PM

> Subject: Re: New to the group

>

> Ditto

>

> Sent from my iPhone

>

> On Aug 15, 2011, at 7:11 PM, <missikay10@...> wrote:

>

> Hello,

> I'm going to be blunt...but only to help you push for treatment NOW!!

> Contact a doc/hospital that does Mehta casting. Do it tomorrow. Without

> delay! Waiting 6 mos is asinine!! You are more than correct to question

> your current ortho. Mom always knows best! Get a copy of the most current

> xrays, take pics of your babys back while she is sitting so the Shriners

> hospital can see the urgency. Then get the closest Shriners or hospital

> that CURRENTLY does Mehta castings contact info and send it to them asap!!

> Then call and follow up...be proactive...this is your child and you know

> her best. Don't let your current ortho talk you out of your moms

> intuition. Where are you located? We can help you find the closest

> treating facility. Not to scare you but to inform you, most of the time

> the rib hump is evidence of rotation and progression. She is the perfect

> age for casting if its necessary. Sorry to seem so pushy but I'm so sick

> of these orthos letting our babies

> fall thru the cracks. Follow your gut! Ask us anything, anytime!

>

>

>

> kookiedz <kookiedz@...> wrote:

>

> Hi everybody.  I'm new to this group and wanted to introduce myself and my

> family. I'm a special education teacher, currently staying home to raise

> our children.  Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has

> been insistant on giving me grey hair since the moment she was born. She

> was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the

> night. Her brother technically saved her that night.  He had gotten up in

> the night for the first time in months and after tucking him back in I

> checked on her to find her blue and foaming at the mouth.

>

> Shortly after it was recognized that she had torticollis and

> plagiocephaly.  She has been in physical therapy since 4 months old but

> she continues to tilt.  She wears an orthotic cranial belt to help reshape

> her head.

>

> At five months old I was giving her a bath and noticed a bulging on the

> left side of her back. I immediately showed everybody, all who insisted

> they couldn't see anything wrong and that it probably just looked that way

> due to the tilt of her head.  I brought her to the pediatrician who

> insisted that it was uneven muscle build-up from the tilt of her head. 

> THis didn't make much sense to me even at the time since she wasn't

> sitting on her own or doing anything that would create so much muscle

> build-up.  Her physical therapist concurred. So I trusted the

> professionals. At 9 months old she was referred to a neurosurgeon due to

> the persistant torticollis/plagiocephaly.  She ordered an x-ray of her

> back after I practically begged. So she wasn't technically diagnosed until

> 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24*

> c-curve with spinal rotation.  She wants to wait 6 months for the  next

> set of x-rays. We're in limbo right

> now but

> I've been on the phone a few times insisting we don't wait 6 full months. 

> The doctor listens and is very easy to talk to but insists that we wait.

> She says it wouldn't change the course of her treatment either way. So I'm

> frustrated considering I've been waiting for answers for 6 months and now

> I'm being told I have to wait another 6 months. My husband and I are on

> the same page and agree we'll take her somewhere else if we have to.  Does

> anybody have any suggestions/approaches on how to push up the x-ray date? 

> I've mentioed Dr. Min Mehta to her doctor and she sounded like she was

> vaguely familiar with the name but not with EDF casting.  I'm gathering

> mateials to share with her, hoping it'll convince her to move the x-ray

> date up some.  Of course we're praying that her curve will be

> self-resolving, but I've watched her rib hump grow from something that

> nobody else could to see into something you can see even with clothes on,

> so if x-rays show that

> it

> is progressive, I know I want her casted and as soon as possible.  I guess

> I just feel like theirs miles of red tape to get through and everywhere

> I've turned I've hit walls.  Any advice would be so appreciated! I know

> many of you have had similar experiences.

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Thanks again for all the advice. I spoke to Cordelia's orthopaedic surgeon once again today. She told me that even if Delia's scoliosis turns out to be progressive her only course of action would be to brace her. Using all the advice that I received, I was very specific about what my plans were for Cordelia if that were the case. By the time we got off the phone she had agreed to move her re-eval. date up by 4 months and to refer us to Strong Memorial at the first sign of progression. So thank you again, I feel like sugh a huge weight has been lifted off my shoulders!

[Guest guest]

Way to go !! She will be in great hands at Strong in Rochester. Proud of

you girl for standing your ground!! BTW I went to school w/a girl w/your

daughters name. She went by Corey. She is a beautiful lady now...as I'm sure

your Delia is!

Dziuban <kookiedz@...> wrote:

>Thanks again for all the advice.  I spoke to Cordelia's orthopaedic surgeon

once again today.  She told me that even if Delia's scoliosis turns out to be

progressive her only course of action would be to brace her.  Using all the

advice that I received, I was very specific about what my plans were for

Cordelia if that were the case.  By the time we got off the phone she had

agreed to move her re-eval. date up by 4 months and to refer us to Strong

Memorial at the first sign of progression.  So thank you again, I feel like

sugh a huge weight has been lifted off my shoulders!

[Guest guest]

Excellent. Im sure you'll be watching her lil back like a hawk. Take a

comparison pic of her back every week if you think she may be progressing.

This is an effective way for you to tell and is also a great way to show

the docs, should you notice signs of porgression.

HRH

> Thanks again for all the advice.  I spoke to Cordelia's orthopaedic

> surgeon once again today.  She told me that even if Delia's scoliosis

> turns out to be progressive her only course of action would be to brace

> her.  Using all the advice that I received, I was very specific about what

> my plans were for Cordelia if that were the case.  By the time we got off

> the phone she had agreed to move her re-eval. date up by 4 months and to

> refer us to Strong Memorial at the first sign of progression.  So thank

> you again, I feel like sugh a huge weight has been lifted off my

> shoulders!

[Guest guest]

Hi Linnae,

Welcome! So glad you found your way to the group. You will find lots and lots of

other moms here looking for health solutions that don't involve drugs, hospitals

and surgery.

Also lots of savvy folks in general learning traditional foods and hygiene.

How did you find TFMN?

Happy eating!

[Guest guest]

Thanks for the welcome! I am looking forward to getting to know more like minded

people.

I found the group through the Weston A Price website, one of the chapter leaders

recommended the group.

>

> Hi Linnae,

>

> Welcome! So glad you found your way to the group. You will find lots and lots

of other moms here looking for health solutions that don't involve drugs,

hospitals and surgery.

>

> Also lots of savvy folks in general learning traditional foods and hygiene.

>

> How did you find TFMN?

>

> Happy eating!

>

>

>

[Guest guest]

Hi everyone,

I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility yesterday and got an IV, and may

need more while I wait. Fun, fun!

Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

Take care,

[Guest guest]

welcome to the family. I am sorry you are having so many issues. If you

would like to call me I live in Georgia and I am willing to talk any time. I see

you are in Penn, there are a few others in your area and the Cleveland clinic is

probably the best place to get treatment around. If you have any questions or

just want to vent and talk I and everyone here are willing to help. Check out

www.achalasia.us also

in Georgia

Sent from my iPhone

On Apr 30, 2012, at 14:00, " erin_lievens " <erinl@...> wrote:

> Hi everyone,

>

> I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility yesterday and got an IV, and may

need more while I wait. Fun, fun!

>

> Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

>

> Take care,

>

>

>

>

>

> TODAY(Beta) • Powered by

> Suprising luxury finds at club stores

> Privacy Policy

>

>

[Guest guest]

Hi there ,

I work in health care in MN. One of my colleagues who went to med school at

Cleveland clinic said that a number of docs there came from mayo rochester and

are also quite good. Good luck!

Faith

Re: New to the group

welcome to the family. I am sorry you are having so many issues. If you

would like to call me I live in Georgia and I am willing to talk any time. I see

you are in Penn, there are a few others in your area and the Cleveland clinic is

probably the best place to get treatment around. If you have any questions or

just want to vent and talk I and everyone here are willing to help. Check out

www.achalasia.us also

in Georgia

Sent from my iPhone

On Apr 30, 2012, at 14:00, " erin_lievens " <erinl@...> wrote:

> Hi everyone,

>

> I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility yesterday and got an IV, and may

need more while I wait. Fun, fun!

>

> Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

>

> Take care,

>

>

>

>

>

> TODAY(Beta) • Powered by

> Suprising luxury finds at club stores

> Privacy Policy

>

>

[Guest guest]

Hello everyone,

I am also new to this group and am very thankful for finding it.  I live in CT

and am looking for a doctor who specializes or is familiar with achalasia in

this area.  I have lived with it all my life -- I was finally diagnosed at 19

years old.  I had 2 dilations before having a myotomy.  That was 30 years ago.

 I began having problems 5 years ago and Dr. Litle from Mt. Sinai in NYC  put

me on omeprazole (20 mg).  (She has since moved to Rochester.) That seemed to

subside the discomfort and help with eating.  I've been doing well on it until

I heard that being on omeprazole for too long may have worse side effects, such

as cancer.  Has anyone else been on omeprazole long term?  How often have

people with achalasia been going for an Endoscopy or a manometry?  I haven't

been checked in 5 years.  I feel like I should go get checked again -- I'm

starting to feel discomfort again.  How long does an HM last?  I'd appreciate

any advice.  I have

never met anyone with achalasia before so I've never been able to talk to

people about it.

ThanksMarisol

> Hi everyone,

>

> I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility

yesterday and got an IV, and may need more while I wait. Fun, fun!

>

> Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

>

> Take care,

>

>

>

>

>

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