Guest guest Posted June 26, 2011 Report Share Posted June 26, 2011 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 The new GI expert we used had a four month waiting list but when we found our surgeon he got us in to see that GI within a week for testing and my son had sugary the next week. His school started back in two weeks so we had to act fast or wait till Christmas and I was not sure what shape he would be in if we waited that long. We went to Vanderbilt Hospital. First find the surgeon at UCLA that has done this surgery 100 times. They will be able to get u in to the doctor ASAP that will test you. Good luck. You don't have to wait. There are loop holes. Email doctors directly. Bypass staff. On Jun 26, 2011, at 1:51 AM, Cipresse <steph@...> wrote: > 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 ,  Once I had all my tests done, I emailed Dr. Maish myself, she put me in touch with her staff and they helped me get the appt. It was very quick, I had my first appt with Dr. Maish and within 10 days I was in surgery. If you would like to email her staff I can get you that email address, just let me know, okay?  Research all your options, check these surgeons out REALLY well, make sure that you are comfortable with their expertise on this surgery. I had a list of questions for Dr. Maish when I met with her. She is very amazing and good at what she does.  As far as eating and drinking now, you must STRESS to your doctor that you can't swallow and NEED HELP, have them look up achalasia....be the squeaky wheel. Explain to them that with little or no motility and vomiting things up, you are exhausted and need help NOW. Many of my doctors just did not understand how bad this can be on a daily basis.  Eat small amounts and eat often, do the best you can for now. Wishing you all the best.  Julee So. Calif.  From: Cipresse <steph@...> " achalasia " <achalasia > Sent: Saturday, June 25, 2011 11:51 PM Subject: Lots of questions  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 Good luck with the insurance! That has been the biggest headache for us. Thought I had great insurance 'til I needed this surgery done in an out-of-network hospital!! > > > > > > > > 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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