Re: Clev Clinic won't call me back!

[Guest guest]

Devin,

I got Dr. Rice to respond to me within 3 hours. I did this my sending him a

personal email. He reads all his email. He will respond to you quickly but very

briefly as he is not a man of many words. However, he will tell you to call his

nurse and she will set up the appointment for you.

His email is as follows:

RICET@...

Send him an email with your history of Achalasia. He will respond and tell you

to call his nurse. I for got her name but she is very helpful and will set up

all the testing for you. You will need to go through all of Dr. Rice's own

testing (endoscopy, manometry and barium swallow). He does not accept records

from any other doctor. The testing is done within 1 day and your results will be

delivered by Dr. Rice himself. He will then recommend a course of action and if

its surgery, then you can schedule it asap.

I hope this helps and I am sure he will respond to you if you send this email

now.

Let us know how it goes!

Cara

>

> I'm pregnant and have had achalasia for approx 5 years but no insurance. Now

that I'm preggo I have a medical card and my OB docs are trying to get me to a

specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

>

> I have been managing my A with B12 injections and a sublingual B coenzyme

complex for about a year and I am so much better now. I had lost over 100 pounds

and thought I was going to die, but with these vitamins I can swallow most of

the time and was even beginning to put weight back on before I became pregnant.

I still had/have days when it's bad. I have found that drinking something hot,

like coffee or tea, before I eat almost always " pops " my LES open just like the

giant tube my GI doc used to put down my throat did. Feels the same and

everything.

>

> But now with another life inside me, I'm constantly worrying about getting

enough nutrients and water for the baby, and the anxiety makes the problem

worse. Anyway, I think we are going to be okay through the pregnancy, but like I

said, I would like to get the surgery immediately after the birth.

>

> Thanks in advance!

>

[Guest guest]

In addition to emailing Dr. Rice, you can also call his case manager, a

Stepnick at 216-445-3515.

InVA

> >

> > I'm pregnant and have had achalasia for approx 5 years but no insurance. Now

that I'm preggo I have a medical card and my OB docs are trying to get me to a

specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> >

> > I have been managing my A with B12 injections and a sublingual B coenzyme

complex for about a year and I am so much better now. I had lost over 100 pounds

and thought I was going to die, but with these vitamins I can swallow most of

the time and was even beginning to put weight back on before I became pregnant.

I still had/have days when it's bad. I have found that drinking something hot,

like coffee or tea, before I eat almost always " pops " my LES open just like the

giant tube my GI doc used to put down my throat did. Feels the same and

everything.

> >

> > But now with another life inside me, I'm constantly worrying about getting

enough nutrients and water for the baby, and the anxiety makes the problem

worse. Anyway, I think we are going to be okay through the pregnancy, but like I

said, I would like to get the surgery immediately after the birth.

> >

> > Thanks in advance!

> >

>

[Guest guest]

The number for a is the one we have left 4 messages on, but I will try his

email! Thank you. I tried to have a manometry several years ago but had to stop

halfway through because it was excruciating. I'm terrified to go through that

again. I had nightmares about it for weeks afterward and could still feel that

tube in my nose when I woke up...I remember someone posted here that their doc

had the tube inserted while she was under anesthesia for a scope and it wasn't

so bad that way...I know they can't give you any meds because they might

interfere with the pressure in the E, but does anyone have any other tips for

dealing with the manometry? I'm honestly more frightened of that than actual

surgery.

> >

> > I'm pregnant and have had achalasia for approx 5 years but no insurance. Now

that I'm preggo I have a medical card and my OB docs are trying to get me to a

specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> >

> > I have been managing my A with B12 injections and a sublingual B coenzyme

complex for about a year and I am so much better now. I had lost over 100 pounds

and thought I was going to die, but with these vitamins I can swallow most of

the time and was even beginning to put weight back on before I became pregnant.

I still had/have days when it's bad. I have found that drinking something hot,

like coffee or tea, before I eat almost always " pops " my LES open just like the

giant tube my GI doc used to put down my throat did. Feels the same and

everything.

> >

> > But now with another life inside me, I'm constantly worrying about getting

enough nutrients and water for the baby, and the anxiety makes the problem

worse. Anyway, I think we are going to be okay through the pregnancy, but like I

said, I would like to get the surgery immediately after the birth.

> >

> > Thanks in advance!

> >

>

[Guest guest]

I agree, the manometry test is not very pleasant. I have had this procedure done

3 times. My first experience the technician told me to think about a favorite

vacation or a place I would like to be, someplace beautiful and relaxing. I

though " yeah, yeah, yeah, " like that was going to happen. I started stressing

when they started, then I thought of myself in Hawaii, on Waikiki, in the sun

and warm ocean. By relaxing the procedure went so much smoother. This technique

is what helped me endure the two other manometry tests. The last technician

actually commented on how relaxed I was by focusing on a trip to Hawaii. I hope

this helps you or anyone else with this challenging medical test. They are

necessary, Good Luck.

Barb

> > >

> > > I'm pregnant and have had achalasia for approx 5 years but no insurance.

Now that I'm preggo I have a medical card and my OB docs are trying to get me to

a specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> > >

> > > I have been managing my A with B12 injections and a sublingual B coenzyme

complex for about a year and I am so much better now. I had lost over 100 pounds

and thought I was going to die, but with these vitamins I can swallow most of

the time and was even beginning to put weight back on before I became pregnant.

I still had/have days when it's bad. I have found that drinking something hot,

like coffee or tea, before I eat almost always " pops " my LES open just like the

giant tube my GI doc used to put down my throat did. Feels the same and

everything.

> > >

> > > But now with another life inside me, I'm constantly worrying about getting

enough nutrients and water for the baby, and the anxiety makes the problem

worse. Anyway, I think we are going to be okay through the pregnancy, but like I

said, I would like to get the surgery immediately after the birth.

> > >

> > > Thanks in advance!

> > >

> >

>

[Guest guest]

Update...I emailed Dr. Rice and you were right! He emailed me back within 3

hours and copied a on the email. They called today and said there is

basically nothing they can/will do while I am pregnant because all of the tests

must be done before surgery and they require x-rays, barium, etc. They want me

to send my previous records up there so that they can send them to a Dr. Shay

(?) in Columbus who is an ear/nose/throat specialist they work with and is much

closer to me. They said he will be able to place a feeding tube if it becomes

necessary for me and the baby. Once the baby is born, they will get me in

quickly for the tests and surgery before my medical coverage runs out.

I am quite disheartened because I have been doing so well for the last year or

so with the B vitamin therapy, and I was hoping all those hormones that relax

everything while pregnant and cause heartburn would further alleviate my

achalasia, but this has been a very bad week. I'm 13 1/2 weeks along and up

until last Monday I had been swallowing almost every day with almost no

problems. Monday I started having issues but could open up with a hot drink.

Issues continued throughout the week and by Friday I could eat nothing at all. I

haven't had any solid food since Thursday night. I've been drinking Ensure,

juice, and broth up until today. Today nothing will go down, not even water, and

so far the hot liquid doesn't seem to be doing the magic trick. I have no idea

what could have changed and I'm starting to panic. I see my OBGYN Thursday but

they have already told me they don't know what to do regarding the swallowing.

The most they can do is put me on an IV. It's been so bad I haven't been able to

get my sublingual B vitamins down, which I'm sure is making it worse. Obviously

I'm not able to take any prenatal vitamins so I'm worried that the little fetus

isn't getting what it needs.

Has anyone had any experience with a feeding tube? I will not be able to go to

work if I have to do this, will they put me on disability? What a mess! I really

thought I was going to be one of the lucky ladies who had a symptom-free

pregnancy. These last 3-4 days have been frightening and filled with tears and

anxiety.

> > > >

> > > > I'm pregnant and have had achalasia for approx 5 years but no insurance.

Now that I'm preggo I have a medical card and my OB docs are trying to get me to

a specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> > > >

> > > > I have been managing my A with B12 injections and a sublingual B

coenzyme complex for about a year and I am so much better now. I had lost over

100 pounds and thought I was going to die, but with these vitamins I can swallow

most of the time and was even beginning to put weight back on before I became

pregnant. I still had/have days when it's bad. I have found that drinking

something hot, like coffee or tea, before I eat almost always " pops " my LES open

just like the giant tube my GI doc used to put down my throat did. Feels the

same and everything.

> > > >

> > > > But now with another life inside me, I'm constantly worrying about

getting enough nutrients and water for the baby, and the anxiety makes the

problem worse. Anyway, I think we are going to be okay through the pregnancy,

but like I said, I would like to get the surgery immediately after the birth.

> > > >

> > > > Thanks in advance!

> > > >

> > >

> >

>

[Guest guest]

devinisvegan wrote:

>

> ... It's been so bad I haven't been able to get my sublingual B

> vitamins down, ...

>

You shouldn't need to get sublinguals down. You should be able to

passively absorb the vitamin through the tissue of the mouth.

notan

[Guest guest]

I feel your distress but take heart. Our son had a feeding tube in his left

nostril while doctors from our area tried to figure out what was wrong with him.

He had it for 6 month and was able to go to high school, amusement parks,

camping, most thing 16 year old boys like to do. Was it " fun " having tube

dangling out his nose in high school. Uhhh no but he had a back pac and a pump

which made him mobile. He fed 24 hours a day to get the calories he needed.

Point is he did what was necessary until we got him to the cleveland clinic

where Dr thomas rice worked his magic. Today I have a happy, healthy 18 year old

who will graduate in june. So smile through your tears. U already know what the

problem is and where to go to fix it. And best of all you will have a healthy

beautiful baby. One day u will tell them the story of their birth. Trust me, he

or she will marvel in their mother strength, just as I marvel at my sons

strength....angela

Sent from my Verizon Wireless BlackBerry

Re: Clev Clinic won't call me back!

Update...I emailed Dr. Rice and you were right! He emailed me back within 3

hours and copied a on the email. They called today and said there is

basically nothing they can/will do while I am pregnant because all of the tests

must be done before surgery and they require x-rays, barium, etc. They want me

to send my previous records up there so that they can send them to a Dr. Shay

(?) in Columbus who is an ear/nose/throat specialist they work with and is much

closer to me. They said he will be able to place a feeding tube if it becomes

necessary for me and the baby. Once the baby is born, they will get me in

quickly for the tests and surgery before my medical coverage runs out.

I am quite disheartened because I have been doing so well for the last year or

so with the B vitamin therapy, and I was hoping all those hormones that relax

everything while pregnant and cause heartburn would further alleviate my

achalasia, but this has been a very bad week. I'm 13 1/2 weeks along and up

until last Monday I had been swallowing almost every day with almost no

problems. Monday I started having issues but could open up with a hot drink.

Issues continued throughout the week and by Friday I could eat nothing at all. I

haven't had any solid food since Thursday night. I've been drinking Ensure,

juice, and broth up until today. Today nothing will go down, not even water, and

so far the hot liquid doesn't seem to be doing the magic trick. I have no idea

what could have changed and I'm starting to panic. I see my OBGYN Thursday but

they have already told me they don't know what to do regarding the swallowing.

The most they can do is put me on an IV. It's been so bad I haven't been able to

get my sublingual B vitamins down, which I'm sure is making it worse. Obviously

I'm not able to take any prenatal vitamins so I'm worried that the little fetus

isn't getting what it needs.

Has anyone had any experience with a feeding tube? I will not be able to go to

work if I have to do this, will they put me on disability? What a mess! I really

thought I was going to be one of the lucky ladies who had a symptom-free

pregnancy. These last 3-4 days have been frightening and filled with tears and

anxiety.

> > > >

> > > > I'm pregnant and have had achalasia for approx 5 years but no insurance.

Now that I'm preggo I have a medical card and my OB docs are trying to get me to

a specialist so that I might get everything set up and ready to have the surgery

soon after the baby is born, since I will have medical coverage for 60 days

after the birth. They have called Dr. Rice's office two times over the last 3

months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> > > >

> > > > I have been managing my A with B12 injections and a sublingual B

coenzyme complex for about a year and I am so much better now. I had lost over

100 pounds and thought I was going to die, but with these vitamins I can swallow

most of the time and was even beginning to put weight back on before I became

pregnant. I still had/have days when it's bad. I have found that drinking

something hot, like coffee or tea, before I eat almost always " pops " my LES open

just like the giant tube my GI doc used to put down my throat did. Feels the

same and everything.

> > > >

> > > > But now with another life inside me, I'm constantly worrying about

getting enough nutrients and water for the baby, and the anxiety makes the

problem worse. Anyway, I think we are going to be okay through the pregnancy,

but like I said, I would like to get the surgery immediately after the birth.

> > > >

> > > > Thanks in advance!

> > > >

> > >

> >

>

[Guest guest]

Beautifully written and so true. I am the one with Achalasia but my son had an

NG tube when he was three months because he stopped eating. We found out later

that it was a terriblly tight tongue tie that was causing it but at the time

doctors said it was reflux that was causing a feeding aversion. Truth was that

his tongue tie made it unable for him to swallow anything - it felt like he was

drowning when he nursed or drank from a bottle.

Anyway, my point is that for those three months that he was on the tube, we were

able to feed him on the go if we had to. The pump is extremely mobile so you

could possibly still work if you had to.

hopefully your trouble swallowing will ease up and you won't need a tube. When I

was pregnant, my swallowing was really great. I hope the same for you.

Either way, you will get the nutrition you need for yourself and your growing

baby. You will be ok and then once you deliver you'll get the help you need for

a more longer lasting solution.

All the best and keep us posted!

So glad Rice got back to you so soon

Cara

> > > > >

> > > > > I'm pregnant and have had achalasia for approx 5 years but no

insurance. Now that I'm preggo I have a medical card and my OB docs are trying

to get me to a specialist so that I might get everything set up and ready to

have the surgery soon after the baby is born, since I will have medical coverage

for 60 days after the birth. They have called Dr. Rice's office two times over

the last 3 months or so, and were told that his office would call me to make an

appointment. I have heard nothing from them. My boyfriend called Dr. Rice's

office yesterday and was told to leave another message. Are they usually hard to

get ahold of? Does anyone have any advice? I'm getting anxious as this is

probably the only time in my life I will have health insurance so I have a very

small window of opportunity here. I live in Southeast Ohio, about 3 hours away

from Cleveland. My OB is trying to convince me to go to Ohio State since it's

only an hour away but I really want to hold out for Dr. Rice. Oh, about 3 years

ago, I also sent all my medical records to Dr. Rice and filled out paperwork for

a scholarship surgery for people with no insurance and I never heard a word back

then either.

> > > > >

> > > > > I have been managing my A with B12 injections and a sublingual B

coenzyme complex for about a year and I am so much better now. I had lost over

100 pounds and thought I was going to die, but with these vitamins I can swallow

most of the time and was even beginning to put weight back on before I became

pregnant. I still had/have days when it's bad. I have found that drinking

something hot, like coffee or tea, before I eat almost always " pops " my LES open

just like the giant tube my GI doc used to put down my throat did. Feels the

same and everything.

> > > > >

> > > > > But now with another life inside me, I'm constantly worrying about

getting enough nutrients and water for the baby, and the anxiety makes the

problem worse. Anyway, I think we are going to be okay through the pregnancy,

but like I said, I would like to get the surgery immediately after the birth.

> > > > >

> > > > > Thanks in advance!

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>