Guest guest Posted December 23, 2010 Report Share Posted December 23, 2010 Hello group. I adjust about ready to take the plunge and start the protocol, but I have a few questions. 1. Is it better to start right after your TOM or can you start before? 2. If I have to start after, how long will my premixed hcg be effective? I have had it for 3 days now. 3. Does anyone have a list or know of a web site of approved products to use while I am on the program? Thanks for your help. Sent from Nichole's iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2011 Report Share Posted June 26, 2011 Thanks- > > > I have been getting lots of good info from the files and old posts on this group so thanks to all for sharing so much. I have some questions I am hoping someone here could help with. > > > > First, what sort of wait period have others found when trying to get into see an Achalasia expert like Dr. Maish at UCLA or dr Katzka or Dr Nichols at Mayo in MN? Once I get all my test results, films, etc to them, is surgery weeks or months away? Until I get everything to them I can't seem to get much info at all. > > And if I go somewhere like Mayo or UCLA, can I request a specific surgeon or do they just assign me to someone on that team? Would it be better to have my local GI call to refer me or just go about all this on my own? My local GI seems pretty competent, but the surgeon he would send me to here in San has only done a few Hellyer Myotomies and I would rather have someone do it who has done many of them. > > Also, does anyone have a referral for a surgeon in the SF Bay Area they would recommend for the Hellyer Myotomy? Anyone heard of Dr Zare in San ? I guess he trained with Dr Doty at town. > > > > And in the meantime, if I am having a really hard time getting enough calories to slow down my weight loss. Are there any good interim options? I worried about doing a dilation if it makes the surgery more difficult. Can I go get an IV on really bad days? Who should I be talking to about the caloric survival until surgery-- my GI or someone else? So far no one really seems to think dehydration or starvation is an immediate concern but my husband thinks I am not making it clear how little I am getting down, how quickly I am losing weight, and how frequently I am regurgitating. > > > > I need to set some expectations for myself about how long I may have to survive on very few calories a day and some strategy to make it to surgery. > > Thanks for any advice. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2011 Report Share Posted June 26, 2011 We flew up to MN to see Katzka, but we made the appt months in advance. However, Mayo Clinic is set up so most people can get the treatment they need while they're there, as most people can only fly in for a week or so. When I saw Katzka and was diagnosed, I literally could have had the surgery that week while we were there. I asked Dr (the surgeon Katzka referred us to at Mayo) what the waiting list was like for surgery, and he said there's pretty much not one. They keep relatively clear schedules so they can do surgery on people like me from MS who will be flying out soon. We chose to fly back home and get insurance/work issues settled before going back to MN for surgery, though. My husband had my internist refer me to Mayo - I believe that was for insurance purposes (to get the out-of-network waiver). The HM/fundoplication surgery at Mayo IS going to be expensive (30-35000 before insurance for everything, including hospital stay), but I'd never risk letting a less-experienced surgeon botch the surgery. Personally, I'd be scared to go anywhere besides Mayo in Rochester, as it is supposed to be the best GI hospital in the country. > > I have been getting lots of good info from the files and old posts on this group so thanks to all for sharing so much. I have some questions I am hoping someone here could help with. > > First, what sort of wait period have others found when trying to get into see an Achalasia expert like Dr. Maish at UCLA or dr Katzka or Dr Nichols at Mayo in MN? Once I get all my test results, films, etc to them, is surgery weeks or months away? Until I get everything to them I can't seem to get much info at all. > And if I go somewhere like Mayo or UCLA, can I request a specific surgeon or do they just assign me to someone on that team? Would it be better to have my local GI call to refer me or just go about all this on my own? My local GI seems pretty competent, but the surgeon he would send me to here in San has only done a few Hellyer Myotomies and I would rather have someone do it who has done many of them. > Also, does anyone have a referral for a surgeon in the SF Bay Area they would recommend for the Hellyer Myotomy? Anyone heard of Dr Zare in San ? I guess he trained with Dr Doty at town. > > And in the meantime, if I am having a really hard time getting enough calories to slow down my weight loss. Are there any good interim options? I worried about doing a dilation if it makes the surgery more difficult. Can I go get an IV on really bad days? Who should I be talking to about the caloric survival until surgery-- my GI or someone else? So far no one really seems to think dehydration or starvation is an immediate concern but my husband thinks I am not making it clear how little I am getting down, how quickly I am losing weight, and how frequently I am regurgitating. > > I need to set some expectations for myself about how long I may have to survive on very few calories a day and some strategy to make it to surgery. > Thanks for any advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2011 Report Share Posted June 26, 2011 I went to see Dr. Katzka and received an appt quickly because he had a cancellation. Mayo Clinic is fantastic because you schedule an appt, all testing is scheduled quickly and you have a follow-up appt with the doctor before you fly home (initial appt, 4 test, follow up appt in a week). Quick and easy, very efficient. My insurance was no issue since I can go to any doctor/specialist, but you need to know your insurance requirements. Have copies of all previous testing/diagnosis ready to send/fax to Mayo for prompt attention. Dr. Katzka is great!! Mayo is one of the best in the USA. I used Ensure when I could not eat or drink and was losing weight every day. Good luck!! Barb > > > > I have been getting lots of good info from the files and old posts on this group so thanks to all for sharing so much. I have some questions I am hoping someone here could help with. > > > > First, what sort of wait period have others found when trying to get into see an Achalasia expert like Dr. Maish at UCLA or dr Katzka or Dr Nichols at Mayo in MN? Once I get all my test results, films, etc to them, is surgery weeks or months away? Until I get everything to them I can't seem to get much info at all. > > And if I go somewhere like Mayo or UCLA, can I request a specific surgeon or do they just assign me to someone on that team? Would it be better to have my local GI call to refer me or just go about all this on my own? My local GI seems pretty competent, but the surgeon he would send me to here in San has only done a few Hellyer Myotomies and I would rather have someone do it who has done many of them. > > Also, does anyone have a referral for a surgeon in the SF Bay Area they would recommend for the Hellyer Myotomy? Anyone heard of Dr Zare in San ? I guess he trained with Dr Doty at town. > > > > And in the meantime, if I am having a really hard time getting enough calories to slow down my weight loss. Are there any good interim options? I worried about doing a dilation if it makes the surgery more difficult. Can I go get an IV on really bad days? Who should I be talking to about the caloric survival until surgery-- my GI or someone else? So far no one really seems to think dehydration or starvation is an immediate concern but my husband thinks I am not making it clear how little I am getting down, how quickly I am losing weight, and how frequently I am regurgitating. > > > > I need to set some expectations for myself about how long I may have to survive on very few calories a day and some strategy to make it to surgery. > > Thanks for any advice. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Thanks to all for all the great advice & support-- I have an appointment with Dr. Francis Nichols on July 11 -- I feel pretty lucky to get in so soon. I am talking to a local surgeon tomorrow but am pretty sure he is not the guy. Now to work on that insurance pre-auth.... On Jun 26, 2011, at 8:09 PM, Barb C. wrote: > I went to see Dr. Katzka and received an appt quickly because he had a cancellation. Mayo Clinic is fantastic because you schedule an appt, all testing is scheduled quickly and you have a follow-up appt with the doctor before you fly home (initial appt, 4 test, follow up appt in a week). Quick and easy, very efficient. My insurance was no issue since I can go to any doctor/specialist, but you need to know your insurance requirements. Have copies of all previous testing/diagnosis ready to send/fax to Mayo for prompt attention. Dr. Katzka is great!! Mayo is one of the best in the USA. > I used Ensure when I could not eat or drink and was losing weight every day. > Good luck!! > Barb > > > > > > > > I have been getting lots of good info from the files and old posts on this group so thanks to all for sharing so much. I have some questions I am hoping someone here could help with. > > > > > > First, what sort of wait period have others found when trying to get into see an Achalasia expert like Dr. Maish at UCLA or dr Katzka or Dr Nichols at Mayo in MN? Once I get all my test results, films, etc to them, is surgery weeks or months away? Until I get everything to them I can't seem to get much info at all. > > > And if I go somewhere like Mayo or UCLA, can I request a specific surgeon or do they just assign me to someone on that team? Would it be better to have my local GI call to refer me or just go about all this on my own? My local GI seems pretty competent, but the surgeon he would send me to here in San has only done a few Hellyer Myotomies and I would rather have someone do it who has done many of them. > > > Also, does anyone have a referral for a surgeon in the SF Bay Area they would recommend for the Hellyer Myotomy? Anyone heard of Dr Zare in San ? I guess he trained with Dr Doty at town. > > > > > > And in the meantime, if I am having a really hard time getting enough calories to slow down my weight loss. Are there any good interim options? I worried about doing a dilation if it makes the surgery more difficult. Can I go get an IV on really bad days? Who should I be talking to about the caloric survival until surgery-- my GI or someone else? So far no one really seems to think dehydration or starvation is an immediate concern but my husband thinks I am not making it clear how little I am getting down, how quickly I am losing weight, and how frequently I am regurgitating. > > > > > > I need to set some expectations for myself about how long I may have to survive on very few calories a day and some strategy to make it to surgery. > > > Thanks for any advice. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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