Re: Shelia and Lorraine need some WISE answers!

[Guest guest]

All i can say is that the quality of life i have had since Dr. Rice worked on me has been terrific, if it came down to having my e removed which is a possiblity in the future...i would go to Dr. Rice in a heart beat.

Just my 0.02

in Indianashelia.helm@... wrote:

Hi to all. Lorraine is really having problems deciding what to do about coming to Cleveland. Her insurance won't cover it. Dr. Rice said possible removal, like me. I posted to her about Why would we need Dr. Rice or and Achalasia specialist to remove our "E"? There are qualified surgeons everywhere that could perform this surgery, maybe? I don't know!!! I know we are surrounded by the wisest people I know, Please help with any input!!Shelia and Lorraine> ATTACHMENT part 2 message/rfc822 From: shelia.helm@...To: achalasia Subject: Re: Help ! I need help LorraineDate: Thu, 3 Feb 2005 03:28:59 +0000Hi Lorraine, Sorry I thought you were .Let me tell you what I have been into tonight. I have been really upset about having my "E" removed because Cleveland is 7 hours away, and hotels, foods and copays and deductibles add up. I thought about it today, and realized, that if I indeed have to have my "E" removed why does it have to be a Doctor familiar with Achalasia. There are surgeons everywhere that remove the "E" for cancer Patients, so I made a few phone calls to local hospitals and expect calls back tomorrow. If you are opting to

have it removed maybe you should check into the same thing. Why would it have to be Dr. Rice. There are some great surgeons out there that save alot of cancer patients by removing their "E" I guess if we get it taken out, then we would no longer have ACHALASIA huh? I sure hope this helps you. But please, if you are feeling uneasy about this, give yourself more time to think!!!!!!!!!!!Shelia> ATTACHMENT part 2.2 message/rfc822 From: L O'Neill achalasia Subject: Help ! I need helpDate: Thu, 3 Feb 2005 03:16:28 +0000

Hi Shelia its Lorraine not that posted that note and I couldn't agree with you more! What the heck! I am susposed to drive down to Cleveland tommorow night for post op info and test and I am know not sure if I should get dr. Rice to do it! I am not covered by insurance because I AM FROM CANADA AND THIS IS COSTING ME $30,000.00

I still have an apointment with a Dr Chang at U of M next tuesday and I am wondering if I should just go to him? Anybody!!!!suggestions!!!!I new help fast in making this decision! And you guys are the most informed people that I can rely on to give me advice! So Help!

Lorraineshelia.helm@... wrote:

, thank you for asking that question, because I have recently posted a few times about the treatments I have had with Dr. Rice. I had failed myotomy and failed dilation after myotomy, now he wants to remove it!! I WAS NEVER told by him that myotomy may not work, and was told my him that too many dilations would cause scaring that further complicate any further treatment. I am beginning to feel like he may not be sure what the best treatment is. I know that our insurance companies would probably not hear of paying to remove the "E" first because of the cost. But in my opinion they lost this time, and sounds like alot of others going thru the same thing. If they would have removed it in January 04, it would have saved LOTS of EGD's, barium swallows, manometries, botox injections, dilations plus the

surgery. I do not mean to dis credit Dr. Rice in anyway, but it is hard to swallow (parden the pun) all of these inconsistencies.> ATTACHMENT part 2 message/rfc822 From: L O'Neill achalasia Subject: RE: Dr Rice and more work doneDate: Thu, 3 Feb 2005 01:27:12 +0000

Hey , I am not making an assumptions here but do you know of anyone on this site who has gone to Dr Rice in Cleveland and not had to have their E removed or further dilation's/ I am getting a little worried that everyone that goes to see him has to have further dilation or the removal!!!!

Someone tell me please that the have used Dr Rice and have not that to have any further work!

anxious in Windsor Bleasdale <ableasdale@...> wrote:

Hi Lorraine

Welcome to the group! There is another member of the group, Penny, who lives near you. There are some of us sprinkled everywhere. Is 4 months “all” you have to wait to have it done in Canada? I was supposed to wait 3+ years for the surgeon I was reffered to. I contacted my MP, a surgeon in Calgary, and finally started emailing a bunch of other surgeons in Vancouver, before my surgeon caught on. Needless to say, he “squeezed” me in. I had the surgery Sept 29th. I feel back to 99%. ( I don’t say 100, because I still get the very odd stuckage and spasm, but soooo tolerable now!)

I am assuming you are paying out of pocket if you go to the US? Any idea what it might end up costing you? Just curious. I have contacted a bunch of surgeons in the Toronto area, and many of them highly recommend Dr. Gail Darling at Toronto General Hospital. I have no idea how long her wait list is.

Good luck on your journey to better health Lorraine!

22

Chilliwack, BC

-----Original Message-----From: summerhillinteriors [mailto:summerhillinteriors@...] Sent: Monday, January 17, 2005 3:56 PMachalasia Subject: Surgeon in Michigan area

Hello, My name is Lorraine and I have just been dianosed with A.I am looking for a surgeon in the michigian area I have been given a refferal to a Dr. Orringer out of U of M. Does anyone have a suggestion? I am from Canada but I cannot wait 4 months for the surgeons to do the surgery there so I am looking in the Michigan area for I am in Windsor Canada . Thanks

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[Guest guest]

Thanks for posting.When did you have your heller and did you have to have more or any dilation's after the surgery?

A quick reponse would be get, I am just trying to get the right person for me and Shelia for that matter! Did Dr Rice tell you as well that you would have to get it remove as well if the heller didn't work?

Lorraine Mimms <juliemimms@...> wrote:

All i can say is that the quality of life i have had since Dr. Rice worked on me has been terrific, if it came down to having my e removed which is a possiblity in the future...i would go to Dr. Rice in a heart beat.

Just my 0.02

in Indianashelia.helm@... wrote:

Hi to all. Lorraine is really having problems deciding what to do about coming to Cleveland. Her insurance won't cover it. Dr. Rice said possible removal, like me. I posted to her about Why would we need Dr. Rice or and Achalasia specialist to remove our "E"? There are qualified surgeons everywhere that could perform this surgery, maybe? I don't know!!! I know we are surrounded by the wisest people I know, Please help with any input!!Shelia and Lorraine> ATTACHMENT part 2 message/rfc822 From: shelia.helm@...To: achalasia Subject: Re: Help ! I need help LorraineDate: Thu, 3 Feb 2005 03:28:59 +0000Hi Lorraine, Sorry I thought you were .Let me tell you what I have been into tonight. I have been really

upset about having my "E" removed because Cleveland is 7 hours away, and hotels, foods and copays and deductibles add up. I thought about it today, and realized, that if I indeed have to have my "E" removed why does it have to be a Doctor familiar with Achalasia. There are surgeons everywhere that remove the "E" for cancer Patients, so I made a few phone calls to local hospitals and expect calls back tomorrow. If you are opting to have it removed maybe you should check into the same thing. Why would it have to be Dr. Rice. There are some great surgeons out there that save alot of cancer patients by removing their "E" I guess if we get it taken out, then we would no longer have ACHALASIA huh? I sure hope this helps you. But please, if you are feeling uneasy about this, give yourself more time to think!!!!!!!!!!!Shelia> ATTACHMENT part 2.2 message/rfc822 From:

L O'Neill achalasia Subject: Help ! I need helpDate: Thu, 3 Feb 2005 03:16:28 +0000

Hi Shelia its Lorraine not that posted that note and I couldn't agree with you more! What the heck! I am susposed to drive down to Cleveland tommorow night for post op info and test and I am know not sure if I should get dr. Rice to do it! I am not covered by insurance because I AM FROM CANADA AND THIS IS COSTING ME $30,000.00

I still have an apointment with a Dr Chang at U of M next tuesday and I am wondering if I should just go to him? Anybody!!!!suggestions!!!!I new help fast in making this decision! And you guys are the most informed people that I can rely on to give me advice! So Help!

Lorraineshelia.helm@... wrote:

, thank you for asking that question, because I have recently posted a few times about the treatments I have had with Dr. Rice. I had failed myotomy and failed dilation after myotomy, now he wants to remove it!! I WAS NEVER told by him that myotomy may not work, and was told my him that too many dilations would cause scaring that further complicate any further treatment. I am beginning to feel like he may not be sure what the best treatment is. I know that our insurance companies would probably not hear of paying to remove the "E" first because of the cost. But in my opinion they lost this time, and sounds like alot of others going thru the same thing. If they would have removed it in January 04, it would have saved LOTS of EGD's, barium swallows, manometries, botox injections, dilations plus the

surgery. I do not mean to dis credit Dr. Rice in anyway, but it is hard to swallow (parden the pun) all of these inconsistencies.> ATTACHMENT part 2 message/rfc822 From: L O'Neill achalasia Subject: RE: Dr Rice and more work doneDate: Thu, 3 Feb 2005 01:27:12 +0000

Hey , I am not making an assumptions here but do you know of anyone on this site who has gone to Dr Rice in Cleveland and not had to have their E removed or further dilation's/ I am getting a little worried that everyone that goes to see him has to have further dilation or the removal!!!!

Someone tell me please that the have used Dr Rice and have not that to have any further work!

anxious in Windsor Bleasdale <ableasdale@...> wrote:

Hi Lorraine

Welcome to the group! There is another member of the group, Penny, who lives near you. There are some of us sprinkled everywhere. Is 4 months “all” you have to wait to have it done in Canada? I was supposed to wait 3+ years for the surgeon I was reffered to. I contacted my MP, a surgeon in Calgary, and finally started emailing a bunch of other surgeons in Vancouver, before my surgeon caught on. Needless to say, he “squeezed” me in. I had the surgery Sept 29th. I feel back to 99%. ( I don’t say 100, because I still get the very odd stuckage and spasm, but soooo tolerable now!)

I am assuming you are paying out of pocket if you go to the US? Any idea what it might end up costing you? Just curious. I have contacted a bunch of surgeons in the Toronto area, and many of them highly recommend Dr. Gail Darling at Toronto General Hospital. I have no idea how long her wait list is.

Good luck on your journey to better health Lorraine!

22

Chilliwack, BC

-----Original Message-----From: summerhillinteriors [mailto:summerhillinteriors@...] Sent: Monday, January 17, 2005 3:56 PMachalasia Subject: Surgeon in Michigan area

Hello, My name is Lorraine and I have just been dianosed with A.I am looking for a surgeon in the michigian area I have been given a refferal to a Dr. Orringer out of U of M. Does anyone have a suggestion? I am from Canada but I cannot wait 4 months for the surgeons to do the surgery there so I am looking in the Michigan area for I am in Windsor Canada . Thanks

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[Guest guest]

I had one dialation by Dr Richter after my surgery and it was due to scar tissue from having part of it removed. They weren't sure what my outcome would really be...hopefully good. But Dr Rice wasn't real opptomistic after my first surgery. Like i said he told me 5 yrs hopefully and if i made it to that he would be suprised. So in other words..this was a surgery that may help but didn't know for how long. The fact that i was only 32 at the time he said that i had progressed fast for my age. That yes i may have to have it removed in the future, but only time would tell. He told me the Heller was not a cure for me and others with very progressed disease...but it is a chance to live normally for awhile, possibly it might work long term. My story is a long one!!! I'm sure no one wants to hear all the hairy details. My stomach is now in my chest cavity....he removed the lower 3rd of my e. Which may be why i've done so well. Although the top portion has

been affected in the past...dialations have kept that open...mine closes not dialates.

L O'Neill <summerhillinteriors@...> wrote:

Thanks for posting.When did you have your heller and did you have to have more or any dilation's after the surgery?

A quick reponse would be get, I am just trying to get the right person for me and Shelia for that matter! Did Dr Rice tell you as well that you would have to get it remove as well if the heller didn't work?

Lorraine Mimms <juliemimms@...> wrote:

All i can say is that the quality of life i have had since Dr. Rice worked on me has been terrific, if it came down to having my e removed which is a possiblity in the future...i would go to Dr. Rice in a heart beat.

Just my 0.02

in Indianashelia.helm@... wrote:

Hi to all. Lorraine is really having problems deciding what to do about coming to Cleveland. Her insurance won't cover it. Dr. Rice said possible removal, like me. I posted to her about Why would we need Dr. Rice or and Achalasia specialist to remove our "E"? There are qualified surgeons everywhere that could perform this surgery, maybe? I don't know!!! I know we are surrounded by the wisest people I know, Please help with any input!!Shelia and Lorraine> ATTACHMENT part 2 message/rfc822 From: shelia.helm@...To: achalasia Subject: Re: Help ! I need help LorraineDate: Thu, 3 Feb 2005 03:28:59 +0000Hi Lorraine, Sorry I thought you were .Let me tell you what I have been into tonight. I have been really

upset about having my "E" removed because Cleveland is 7 hours away, and hotels, foods and copays and deductibles add up. I thought about it today, and realized, that if I indeed have to have my "E" removed why does it have to be a Doctor familiar with Achalasia. There are surgeons everywhere that remove the "E" for cancer Patients, so I made a few phone calls to local hospitals and expect calls back tomorrow. If you are opting to have it removed maybe you should check into the same thing. Why would it have to be Dr. Rice. There are some great surgeons out there that save alot of cancer patients by removing their "E" I guess if we get it taken out, then we would no longer have ACHALASIA huh? I sure hope this helps you. But please, if you are feeling uneasy about this, give yourself more time to think!!!!!!!!!!!Shelia> ATTACHMENT part 2.2 message/rfc822 From:

L O'Neill achalasia Subject: Help ! I need helpDate: Thu, 3 Feb 2005 03:16:28 +0000

Hi Shelia its Lorraine not that posted that note and I couldn't agree with you more! What the heck! I am susposed to drive down to Cleveland tommorow night for post op info and test and I am know not sure if I should get dr. Rice to do it! I am not covered by insurance because I AM FROM CANADA AND THIS IS COSTING ME $30,000.00

I still have an apointment with a Dr Chang at U of M next tuesday and I am wondering if I should just go to him? Anybody!!!!suggestions!!!!I new help fast in making this decision! And you guys are the most informed people that I can rely on to give me advice! So Help!

Lorraineshelia.helm@... wrote:

, thank you for asking that question, because I have recently posted a few times about the treatments I have had with Dr. Rice. I had failed myotomy and failed dilation after myotomy, now he wants to remove it!! I WAS NEVER told by him that myotomy may not work, and was told my him that too many dilations would cause scaring that further complicate any further treatment. I am beginning to feel like he may not be sure what the best treatment is. I know that our insurance companies would probably not hear of paying to remove the "E" first because of the cost. But in my opinion they lost this time, and sounds like alot of others going thru the same thing. If they would have removed it in January 04, it would have saved LOTS of EGD's, barium swallows, manometries, botox injections, dilations plus the

surgery. I do not mean to dis credit Dr. Rice in anyway, but it is hard to swallow (parden the pun) all of these inconsistencies.> ATTACHMENT part 2 message/rfc822 From: L O'Neill achalasia Subject: RE: Dr Rice and more work doneDate: Thu, 3 Feb 2005 01:27:12 +0000

Hey , I am not making an assumptions here but do you know of anyone on this site who has gone to Dr Rice in Cleveland and not had to have their E removed or further dilation's/ I am getting a little worried that everyone that goes to see him has to have further dilation or the removal!!!!

Someone tell me please that the have used Dr Rice and have not that to have any further work!

anxious in Windsor Bleasdale <ableasdale@...> wrote:

Hi Lorraine

Welcome to the group! There is another member of the group, Penny, who lives near you. There are some of us sprinkled everywhere. Is 4 months “all” you have to wait to have it done in Canada? I was supposed to wait 3+ years for the surgeon I was reffered to. I contacted my MP, a surgeon in Calgary, and finally started emailing a bunch of other surgeons in Vancouver, before my surgeon caught on. Needless to say, he “squeezed” me in. I had the surgery Sept 29th. I feel back to 99%. ( I don’t say 100, because I still get the very odd stuckage and spasm, but soooo tolerable now!)

I am assuming you are paying out of pocket if you go to the US? Any idea what it might end up costing you? Just curious. I have contacted a bunch of surgeons in the Toronto area, and many of them highly recommend Dr. Gail Darling at Toronto General Hospital. I have no idea how long her wait list is.

Good luck on your journey to better health Lorraine!

22

Chilliwack, BC

-----Original Message-----From: summerhillinteriors [mailto:summerhillinteriors@...] Sent: Monday, January 17, 2005 3:56 PMachalasia Subject: Surgeon in Michigan area

Hello, My name is Lorraine and I have just been dianosed with A.I am looking for a surgeon in the michigian area I have been given a refferal to a Dr. Orringer out of U of M. Does anyone have a suggestion? I am from Canada but I cannot wait 4 months for the surgeons to do the surgery there so I am looking in the Michigan area for I am in Windsor Canada . Thanks

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I'm on my way

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I'm on my way

[Guest guest]

Hi Shelia and Lorraine,

While Dr Rice is no doubt one of the best at what he does, you are right

that there are other very experienced Drs. who as you stated in another

email. Most of the esophagectomies are performed on patients with other

problem such as cancer of the esophagus. When I first talked to the surgeon

who did my surgery he informed me that most of his esophagectomies were for

esophageal cancer, he went on to explain that the procedure is the same

regardless of the disease. My surgery was done at a teaching hospital the

University of Kansas Medical Center. I would try if at all possible to seek

out an academic hospital where they probably treat the more difficult cases.

Fitzgerald

Shelia and Lorraine need some WISE answers!

> Hi to all. Lorraine is really having problems deciding what to do about

> coming to Cleveland. Her insurance won't cover it. Dr. Rice said

> possible

> removal, like me. I posted to her about Why would we need Dr. Rice or and

> Achalasia specialist to remove our " E " ? There are qualified surgeons

> everywhere that could perform this surgery, maybe? I don't know!!! I

> know we

> are surrounded by the wisest people I know, Please help with any input!!

> Shelia and Lorraine

>

>

>

>

>

>

>

>

>