RE: New Member with lots of questions

Posted July 8, 2003 · July 8, 2003

> Hi, everyone: I am a new member but having had Achalasia for the

past 14 years. Recently it is getting worse, and I HAVE to do

something. I am in an small area and haven't found any GI or surgeon

who treats Achalasia. I have been reading a lot of your messages

and have learned a lot from it. Now I don't feel alone anymore. I

have been frustrated for not knowing how to contact anyone of you.

Finally I can try.

>

> I plan to go to a GI doctor in Cleveland clinic, OH to discuss my

case. It is 800 miles away. I don't know if he will refer me to a

surgeon if he thinks I need surgery. I wonder if anyone knows

between Arkansas and OH there might be some experienced GI doctor and

surgeons (Dallas is about 6 hours away). Please respond and I am

waiting anxiously for any kind help.

>

> Good luck with everything you are in and do! (I have not beel able

to download the list containing doctors/surgeons some of you have

gone to).

>

> Thanks,

>

> Meng

hi meng...

i too had had achalasia for such a long time......i moved here to

ohio just 4 yrs ago...when my disease has gotten worse.....i go to

cleveland clinic now....where i did get surgery done....the surgeons

name is dr rice....and i still go there for more tests as well as my

symptoms hasnt gone away...i dont know if there is anything out there

to help us achalasia patients...but....we cant give up.....i know

alot of achalasia patients who now go to cleveland clinic...let me

know if you decide...i go back the 4th and the 5th for 2 more

tests....hmmm...dont you feel like a guinea pig??? i know i do!write

and let me know how you are.....ok? im concerned......

Posted July 8, 2003 · July 8, 2003

Hi, :

Thank you for your response and concerns. I have decided to drive 800 miles from Arkansas to Cleveland clinic, to see Dr. Richter (GI specialist) first, I also made an appointment with Dr. Rice the next day (7-16-03). I had no idea what I will be facing. I am sorry your symptoms are not much improved. But please don't be discouraged, I think stress is the main cause of this problem. I suggest you try to be relaxed, and put trust in HIM (if you believe in Jesus).

I am so glad to see so many people are willing to share their experiences, be positive or negative, that way help the other people who have been frusted by what to do with their lives, and in return, get some encouragement from each other. I am very thankful.

Keep in touch, and respond when you can. thank you and take care!kmont43599 <kmont43599@...> wrote:

> Hi, everyone: I am a new member but having had Achalasia for the past 14 years. Recently it is getting worse, and I HAVE to do something. I am in an small area and haven't found any GI or surgeon who treats Achalasia. I have been reading a lot of your messages and have learned a lot from it. Now I don't feel alone anymore. I have been frustrated for not knowing how to contact anyone of you. Finally I can try.> > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my case. It is 800 miles away. I don't know if he will refer me to a surgeon if he thinks I need surgery. I wonder if anyone knows between Arkansas and OH there might be some experienced GI doctor

and surgeons (Dallas is about 6 hours away). Please respond and I am waiting anxiously for any kind help. > > Good luck with everything you are in and do! (I have not beel able to download the list containing doctors/surgeons some of you have gone to).> > Thanks,> > Menghi meng...i too had had achalasia for such a long time......i moved here to ohio just 4 yrs ago...when my disease has gotten worse.....i go to cleveland clinic now....where i did get surgery done....the surgeons name is dr rice....and i still go there for more tests as well as my symptoms hasnt gone away...i dont know if there is anything out there to help us achalasia patients...but....we cant give up.....i know alot of achalasia patients who now go to cleveland clinic...let me know if you decide...i go back the 4th and the 5th for 2 more tests....hmmm...dont you feel like a

guinea pig??? i know i do!write and let me know how you are.....ok? im concerned......

Posted July 9, 2003 · July 9, 2003

> > Hi, everyone: I am a new member but having had Achalasia for the

> past 14 years. Recently it is getting worse, and I HAVE to do

> something. I am in an small area and haven't found any GI or

surgeon

> who treats Achalasia. I have been reading a lot of your messages

> and have learned a lot from it. Now I don't feel alone anymore. I

> have been frustrated for not knowing how to contact anyone of you.

> Finally I can try.

> >

> > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my

> case. It is 800 miles away. I don't know if he will refer me to a

> surgeon if he thinks I need surgery. I wonder if anyone knows

> between Arkansas and OH there might be some experienced GI doctor

and

> surgeons (Dallas is about 6 hours away). Please respond and I am

> waiting anxiously for any kind help.

> >

> > Good luck with everything you are in and do! (I have not beel

able

> to download the list containing doctors/surgeons some of you have

> gone to).

> >

> > Thanks,

> >

> > Meng

>

> hi meng...

> i too had had achalasia for such a long time......i moved here to

> ohio just 4 yrs ago...when my disease has gotten worse.....i go to

> cleveland clinic now....where i did get surgery done....the

surgeons

> name is dr rice....and i still go there for more tests as well as

my

> symptoms hasnt gone away...i dont know if there is anything out

there

> to help us achalasia patients...but....we cant give up.....i know

> alot of achalasia patients who now go to cleveland clinic...let me

> know if you decide...i go back the 4th and the 5th for 2 more

> tests....hmmm...dont you feel like a guinea pig??? i know i do!

write

> and let me know how you are.....ok? im concerned......

i'm so glad that you have decide to go to cleveland clinic.....

i have seen dr ritcher...but since i had the surgery they always just

send me to dr. rice now......please...let me know how it goes..ok?

you are in good hands with them.........

karen

>

Posted July 9, 2003 · July 9, 2003

Hello, I just wanted to give you some feedback about the Cleveland

Clinic with regards to achalasia. The Cleveland Clinic is one of if

not the best medical institutions in the world for Achalasia. I had

the surgery on April 30th and I am doing very well. The surgeon, Dr.

Rice, head of the thoracic surgery department is probably the

best surgeon in the country to perform the heller myotomy procedure.

He has performed over three hundred myotomies. You are in the best

hands at the Cleveland Clinic. They will be able to diagnose and

treat your problem.

Arthur Grossman

> > > Hi, everyone: I am a new member but having had Achalasia for

the

> > past 14 years. Recently it is getting worse, and I HAVE to do

> > something. I am in an small area and haven't found any GI or

> surgeon

> > who treats Achalasia. I have been reading a lot of your

messages

> > and have learned a lot from it. Now I don't feel alone anymore.

I

> > have been frustrated for not knowing how to contact anyone of

you.

> > Finally I can try.

> > >

> > > I plan to go to a GI doctor in Cleveland clinic, OH to discuss

my

> > case. It is 800 miles away. I don't know if he will refer me to

a

> > surgeon if he thinks I need surgery. I wonder if anyone knows

> > between Arkansas and OH there might be some experienced GI doctor

> and

> > surgeons (Dallas is about 6 hours away). Please respond and I am

> > waiting anxiously for any kind help.

> > >

> > > Good luck with everything you are in and do! (I have not beel

> able

> > to download the list containing doctors/surgeons some of you have

> > gone to).

> > >

> > > Thanks,

> > >

> > > Meng

> >

> > hi meng...

> > i too had had achalasia for such a long time......i moved here to

> > ohio just 4 yrs ago...when my disease has gotten worse.....i go

to

> > cleveland clinic now....where i did get surgery done....the

> surgeons

> > name is dr rice....and i still go there for more tests as well as

> my

> > symptoms hasnt gone away...i dont know if there is anything out

> there

> > to help us achalasia patients...but....we cant give up.....i know

> > alot of achalasia patients who now go to cleveland clinic...let

me

> > know if you decide...i go back the 4th and the 5th for 2 more

> > tests....hmmm...dont you feel like a guinea pig??? i know i do!

> write

> > and let me know how you are.....ok? im concerned......

>

> i'm so glad that you have decide to go to cleveland clinic.....

> i have seen dr ritcher...but since i had the surgery they always

just

> send me to dr. rice now......please...let me know how it goes..ok?

> you are in good hands with them.........

> karen

> >

Posted July 9, 2003 · July 9, 2003

Hi Arthur:

Thank you so much for your response which gives me a lot of positive assurance about the trip. It is a relief to hear that my decision, at least at this point, is going toward the right direction.

I am glad for your positive results, hope everyone in this group will have such good results. Now I am looking forward to this trip, I think I am doing something right for myself, instead of postponing again and again, not knowing what to do.

Thank you again for the encouragement. I will keep you posted about my visits.

Meng

ag5683 <agro55@...> wrote:

Hello, I just wanted to give you some feedback about the Cleveland Clinic with regards to achalasia. The Cleveland Clinic is one of if not the best medical institutions in the world for Achalasia. I had the surgery on April 30th and I am doing very well. The surgeon, Dr. Rice, head of the thoracic surgery department is probably the best surgeon in the country to perform the heller myotomy procedure. He has performed over three hundred myotomies. You are in the best hands at the Cleveland Clinic. They will be able to diagnose and treat your problem.Arthur Grossman > > > Hi, everyone: I am a new member but having had Achalasia for the > > past 14 years. Recently it is getting worse, and I HAVE to do > > something. I am in an small area and haven't found any GI or > surgeon > > who treats Achalasia. I have been reading a lot of your messages > > and have learned a lot from it. Now I don't feel alone anymore. I > > have been frustrated for not knowing how to contact anyone of you. > > Finally I can try.> > > > > > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my > > case. It is 800 miles away. I don't know if he will refer me to a > > surgeon if he thinks I need

surgery. I wonder if anyone knows > > between Arkansas and OH there might be some experienced GI doctor > and > > surgeons (Dallas is about 6 hours away). Please respond and I am > > waiting anxiously for any kind help. > > > > > > Good luck with everything you are in and do! (I have not beel > able > > to download the list containing doctors/surgeons some of you have > > gone to).> > > > > > Thanks,> > > > > > Meng> > > > hi meng...> > i too had had achalasia for such a long time......i moved here to > > ohio just 4 yrs ago...when my disease has gotten worse.....i go to > > cleveland clinic now....where i did get surgery done....the > surgeons > > name is dr rice....and i still go there for more tests as well as > my

> > symptoms hasnt gone away...i dont know if there is anything out > there > > to help us achalasia patients...but....we cant give up.....i know > > alot of achalasia patients who now go to cleveland clinic...let me > > know if you decide...i go back the 4th and the 5th for 2 more > > tests....hmmm...dont you feel like a guinea pig??? i know i do!> write > > and let me know how you are.....ok? im concerned......> > > > i'm so glad that you have decide to go to cleveland clinic.....> i have seen dr ritcher...but since i had the surgery they always just > send me to dr. rice now......please...let me know how it goes..ok? > you are in good hands with them.........> karen> > > > > >

Posted July 9, 2003 · July 9, 2003

Hi, :

Thank you for your response again, I am glad you sounded better. Hope things are getting better. I will let you know the results of my visits with the doctors.

Hanging there and think positive, I am sure you will feel better. Take care!

Meng kmont43599 <kmont43599@...> wrote:

> > Hi, everyone: I am a new member but having had Achalasia for the > past 14 years. Recently it is getting worse, and I HAVE to do > something. I am in an small area and haven't found any GI or surgeon > who treats Achalasia. I have been reading a lot of your messages > and have learned a lot from it. Now I don't feel alone anymore. I > have been frustrated for not knowing how to contact anyone of you. > Finally I can try.> > > > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my > case. It is 800 miles away. I don't know if he

will refer me to a > surgeon if he thinks I need surgery. I wonder if anyone knows > between Arkansas and OH there might be some experienced GI doctor and > surgeons (Dallas is about 6 hours away). Please respond and I am > waiting anxiously for any kind help. > > > > Good luck with everything you are in and do! (I have not beel able > to download the list containing doctors/surgeons some of you have > gone to).> > > > Thanks,> > > > Meng> > hi meng...> i too had had achalasia for such a long time......i moved here to > ohio just 4 yrs ago...when my disease has gotten worse.....i go to > cleveland clinic now....where i did get surgery done....the surgeons > name is dr rice....and i still go there for more tests as well as my > symptoms hasnt gone away...i dont know if

there is anything out there > to help us achalasia patients...but....we cant give up.....i know > alot of achalasia patients who now go to cleveland clinic...let me > know if you decide...i go back the 4th and the 5th for 2 more > tests....hmmm...dont you feel like a guinea pig??? i know i do!write > and let me know how you are.....ok? im concerned......i'm so glad that you have decide to go to cleveland clinic.....i have seen dr ritcher...but since i had the surgery they always just send me to dr. rice now......please...let me know how it goes..ok? you are in good hands with them.........karen> > >

Posted July 9, 2003 · July 9, 2003

Hi, :

Thank you for your response again, I am glad you sounded better. Hope things are getting better. I will let you know the results of my visits with the doctors.

Hanging there and think positive, I am sure you will feel better. Take care!

Meng kmont43599 <kmont43599@...> wrote:

> > Hi, everyone: I am a new member but having had Achalasia for the > past 14 years. Recently it is getting worse, and I HAVE to do > something. I am in an small area and haven't found any GI or surgeon > who treats Achalasia. I have been reading a lot of your messages > and have learned a lot from it. Now I don't feel alone anymore. I > have been frustrated for not knowing how to contact anyone of you. > Finally I can try.> > > > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my > case. It is 800 miles away. I don't know if he

will refer me to a > surgeon if he thinks I need surgery. I wonder if anyone knows > between Arkansas and OH there might be some experienced GI doctor and > surgeons (Dallas is about 6 hours away). Please respond and I am > waiting anxiously for any kind help. > > > > Good luck with everything you are in and do! (I have not beel able > to download the list containing doctors/surgeons some of you have > gone to).> > > > Thanks,> > > > Meng> > hi meng...> i too had had achalasia for such a long time......i moved here to > ohio just 4 yrs ago...when my disease has gotten worse.....i go to > cleveland clinic now....where i did get surgery done....the surgeons > name is dr rice....and i still go there for more tests as well as my > symptoms hasnt gone away...i dont know if

there is anything out there > to help us achalasia patients...but....we cant give up.....i know > alot of achalasia patients who now go to cleveland clinic...let me > know if you decide...i go back the 4th and the 5th for 2 more > tests....hmmm...dont you feel like a guinea pig??? i know i do!write > and let me know how you are.....ok? im concerned......i'm so glad that you have decide to go to cleveland clinic.....i have seen dr ritcher...but since i had the surgery they always just send me to dr. rice now......please...let me know how it goes..ok? you are in good hands with them.........karen> > >

Posted July 9, 2003 · July 9, 2003

Hi, :

Thank you for your response again, I am glad you sounded better. Hope things are getting better. I will let you know the results of my visits with the doctors.

Hanging there and think positive, I am sure you will feel better. Take care!

Meng kmont43599 <kmont43599@...> wrote:

> > Hi, everyone: I am a new member but having had Achalasia for the > past 14 years. Recently it is getting worse, and I HAVE to do > something. I am in an small area and haven't found any GI or surgeon > who treats Achalasia. I have been reading a lot of your messages > and have learned a lot from it. Now I don't feel alone anymore. I > have been frustrated for not knowing how to contact anyone of you. > Finally I can try.> > > > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my > case. It is 800 miles away. I don't know if he

will refer me to a > surgeon if he thinks I need surgery. I wonder if anyone knows > between Arkansas and OH there might be some experienced GI doctor and > surgeons (Dallas is about 6 hours away). Please respond and I am > waiting anxiously for any kind help. > > > > Good luck with everything you are in and do! (I have not beel able > to download the list containing doctors/surgeons some of you have > gone to).> > > > Thanks,> > > > Meng> > hi meng...> i too had had achalasia for such a long time......i moved here to > ohio just 4 yrs ago...when my disease has gotten worse.....i go to > cleveland clinic now....where i did get surgery done....the surgeons > name is dr rice....and i still go there for more tests as well as my > symptoms hasnt gone away...i dont know if

there is anything out there > to help us achalasia patients...but....we cant give up.....i know > alot of achalasia patients who now go to cleveland clinic...let me > know if you decide...i go back the 4th and the 5th for 2 more > tests....hmmm...dont you feel like a guinea pig??? i know i do!write > and let me know how you are.....ok? im concerned......i'm so glad that you have decide to go to cleveland clinic.....i have seen dr ritcher...but since i had the surgery they always just send me to dr. rice now......please...let me know how it goes..ok? you are in good hands with them.........karen> > >

Posted July 30, 2003 · July 30, 2003

Hi, and everyone:

I just came back from the trip (to Cleveland Clinic, and then Canada). I am gonna give you a report. I visited with Dr. Richter several times. He first did the motility testing, then repeated the B-swallow, all confirmed I do have A. Then he suggested doing the Dilation on the third day (He said he wouldn't recommend botox for me due to the possibility of messing up the surgery if I need it later). At this point he thought I don't have to have surgery. (Although I have had this A for so long, but he said it was strange that I seemed to by "Asymptomatic", i,e., I don't have a lot of difficulty swallowing than when I just got A.

However, my insurance company called 5 minutes right before the dilation procedure was set to be done. Dr. Richter was very nice and he said he didn't feel comfortable to do the procedure since my insurance changed its mind (out of net-work stuff), should anything go wrong. He has done over 100 in the past years, with only one incidence of needing emergency surgery. I took his advice. I really think he is a great doctor, he is very knowledgable about A, and he is very kind and thoughtful. I will recommend him to anybody. His office staff was also wonderful. I also asked him about the alternatives, such as meditation and acupuncture. He did say there was a small study done on acupuncture which showing some people got help from it. It won't hurt to try.

At this point, I haven't decide what to do yet. I might take the alternative approach. I read from some of your messsages, and maybe the alternative method would help. Please share this information if any one has more info. I will share with anybody outthere who might want to know. I don't think the trip was in vain, I learned more about A, and now I am looking at it from a different angle. Before this, I tried to avoid it, now I am FACING the problem. I want to find a way to get better. I also don't want to deal with my insurance,(premierecare, triad hospital, etc.), because in the net work I have yet found anybody who knows how to treat A yet, (at least in my area-Arkansas).

Good luck, everybody, and keep in touch. Take care and God bless y'all.

Mengkmont43599 <kmont43599@...> wrote:

> Hi, everyone: I am a new member but having had Achalasia for the past 14 years. Recently it is getting worse, and I HAVE to do something. I am in an small area and haven't found any GI or surgeon who treats Achalasia. I have been reading a lot of your messages and have learned a lot from it. Now I don't feel alone anymore. I have been frustrated for not knowing how to contact anyone of you. Finally I can try.> > I plan to go to a GI doctor in Cleveland clinic, OH to discuss my case. It is 800 miles away. I don't know if he will refer me to a surgeon if he thinks I need surgery. I wonder if anyone knows between Arkansas and OH there might be some experienced GI doctor

and surgeons (Dallas is about 6 hours away). Please respond and I am waiting anxiously for any kind help. > > Good luck with everything you are in and do! (I have not beel able to download the list containing doctors/surgeons some of you have gone to).> > Thanks,> > Menghi meng...i too had had achalasia for such a long time......i moved here to ohio just 4 yrs ago...when my disease has gotten worse.....i go to cleveland clinic now....where i did get surgery done....the surgeons name is dr rice....and i still go there for more tests as well as my symptoms hasnt gone away...i dont know if there is anything out there to help us achalasia patients...but....we cant give up.....i know alot of achalasia patients who now go to cleveland clinic...let me know if you decide...i go back the 4th and the 5th for 2 more tests....hmmm...dont you feel like a

guinea pig??? i know i do!write and let me know how you are.....ok? im concerned......

Posted June 7, 2004 · June 7, 2004

Hi Sherryl,

Welcome to the group! Congratulations on the newest edition to your

family.

I'm going to try and answer all of your questions, 1, you don't know

if the person you are seeing is plagio educated or band friendly. A

lot of doctors aren't, sadly. You have to go with your Mommy instinct

on this one. It is YOUR decision whether or not Zander gets banded,

not your specialists. What is your specialists name? Maybe someone

here has used him before and can give you a heads up.

2, Once a baby is casted it shouldn't be longer then 2 weeks before

fitting. The younger a baby is banded the better and faster the

correction. While you're waiting for your appointment you really

should be aggressively repositioning Zander off his flat spot. Look

in the files section under REPOSITIONING HEADQUARTERS for some

helpful info.

3, Some insurance companies DO pay for bands and helmets, some don't.

Who is your insurance company?

Please keep us posted on your little cutie.

--- In Plagiocephaly , " Sherryl " <nickandgabe@h...>

wrote:

> Hi everyone! I'm so happy to have found this group. My name is

> Sherryl. My husband and I have 3 boys. We adopted our youngest,

> Zander, from birth. He is now 4 months old. At Zander's 4 month

> check up, the pediatrician noted his misshapen head. We have been

> aware of it for quite a while, but were hoping that it was normal

> and it would just fix itself. It is flat across the back, more on

> one side than the other. He has an odd groove on one side and an

> indentation on the other. Those two things worry me more than the

> flatness. Anyway, our Ped said Zander's Plagio is severe and has

> referred us to a Pediatric Plastic Surgeon for follow up.

>

> I plan on making myself into a Plagio Expert before we go to his

> appointment in July. I need help though..I have so many

questions.

> I hope you all can help me.

>

> First, how do I know the doctor I am going to see is familiar with

> Plagio? How do I trust his diagnosis?

>

> Once we see the specialist, how long does it usually take to get

> through the fitting and actually getting the band? Zander will be

5

> 1/2 months by the time we even get in to see him for the first

> time. I worry that the longer it takes, the harder it will be on

my

> little guy.

>

> I'm also concerned about insurance. How likely is it that they

will

> cover treatment? Do your insurance companies cover it? Has

> anyone's company totally refused to cover?

>

> Thanks so much for all of your help. I've been reading everything

I

> can find and will continue to do so. This group will be so

helpful,

> I'm sure.

>

> Sherryl

Posted June 7, 2004 · June 7, 2004

Hi Sherryl,

Welcome to the group! I have gotten so much good support here and

everyone is so helpful and nice. I'm not sure about others here, but

it's interesting to me that you were referred to a plastic surgeon. I

was referred to a neurosurgeon and I think pretty much everyone here

who has been referred was sent to a neurologist or a neurosurgeon. I

could be wrong though! From personal experience, it took about 2

weeks from when they did the initial exam at Cranial Technologies to

the casting. After the casting it's 1-2 weeks before the helmet is

fitted. Finally about the insurance, when we started this whole

process I had United Healthcare and they refused to pay for the

helmet. In the middle I switched jobs and now have Aetna. They paid

for it,no questions asked. There is a great folder in the database

with insurance companies and how much they paid. You are doing this

in plenty of time, you should see great correction at this age. Good

luck and keep us posted! Hope that helps!

Mia

09/22/03

brachycephaly, tort, DOC band 05/27/04