Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 I have been semi-OK since my HM. I do have to take my Prilosec an hour or so before bed or I will feel it in my E where it does nothing for the reflux. There have been lots of people here with your experience. Best wishes. Dan Sent from my Samsung Epicâ„¢ 4G lindsayaus <lindsay_kite@...> wrote: This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. Am I the only one on liquids still after having both HM and dilation. I want to know if there are any others here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Dan I always took my Prilosec in the morning and that normally gave me coverage all day. in Georgia. Sent from my iPhone On Apr 8, 2012, at 19:59, Hoffman <rp518dan@...> wrote: > I have been semi-OK since my HM. I do have to take my Prilosec an hour or so before bed or I will feel it in my E where it does nothing for the reflux. > > There have been lots of people here with your experience. > > Best wishes. > > Dan > > Sent from my Samsung Epicâ„¢ 4G > > lindsayaus <lindsay_kite@...> wrote: > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > Am I the only one on liquids still after having both HM and dilation. > I want to know if there are any others here. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Everyone's different, . I had diffuse esophageal spasm for 30 years before the first sign of Achalasia showed up seven years ago. It lurched, got better, got worse, and finally pretty much shut down my LES last summer. I came *very* close to checking out. It was a struggle to stay alive long enough to get the Heller. My diet is about 3/4 liquid right now, and I'm not complaining. Some have dealt with it, at various stages for even longer. achalasia/message/20689 No doubt, some have an easier time; some have it very much worse. Doesn't seem to be any rhyme or reason, either. Hugs > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > Am I the only one on liquids still after having both HM and dilation. > I want to know if there are any others here. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Maybe I should move the time up. I seldom have trouble during the day. It is when lying down that I have trouble. I think I should start having it at dinner or so. Thanks. Dan Sent from my Samsung Epicâ„¢ 4G Mueller IV <mt4mar@...> wrote: Dan I always took my Prilosec in the morning and that normally gave me coverage all day. in Georgia. Sent from my iPhone On Apr 8, 2012, at 19:59, Hoffman <rp518dan@...> wrote: > I have been semi-OK since my HM. I do have to take my Prilosec an hour or so before bed or I will feel it in my E where it does nothing for the reflux. > > There have been lots of people here with your experience. > > Best wishes. > > Dan > > Sent from my Samsung Epicâ„¢ 4G > > lindsayaus <lindsay_kite@...> wrote: > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > Am I the only one on liquids still after having both HM and dilation. > I want to know if there are any others here. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Awww -- I'm so sorry for you. Sometimes I feel like I should keep my mouth shut, because I'm not the one with achalasia, my husband is, so I don't know what it " feels " like, all I know is what it looks like. My husband had a Heller in 2008 & hasn't seen a dr since, & it's been a roller coaster. He'll throw up for weeks at a time, then he'll eat just fine, then a couple months later he'll start throwing up again, then after a few weeks he eats just fine. He's kind of in between right now. We went to my mom's for dinner, he was able to eat some ham & potato salad. When there were a few bites left, he stood up & never sat back down. I also noticed he didn't have his huge jumbo size glass of water. When I asked if he wanted some, he said there was no way water was going to go down. Since he's never been back to the dr, he's never had a dilitation. He claims he's tried calling his dr a couple of times, but he's never called back. I can believe that would happen once, but not twice -- I don't think he's called at all. I told him to find another dr but he won't. He won't do anything. So you are very much like him with what's going on, but the big difference is you actually care, he doesn't. I'm still learning about A -- every time I read new posts I learn something new. My thoughts are with you! (in Milwaukee) > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > Am I the only one on liquids still after having both HM and dilation. > I want to know if there are any others here. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Hi, I'm new to the group. I found you all this afternoon. I had HM 21 years ago in the army. It's been failing over the past few years and now have no choice but to see another doc. I had thoracic surgery which was beyond painful and was punctured so was in ICU for a week. Had a fundlipication by army 2 yrs later. I understand why your husband does not want to go to another MD. I have an appt at Mayo in Rochester next month. Does anyone have any information about Mayo-Rochester???? Thanks, From the tundra of Minnesota Sent from my iPod On Apr 8, 2012, at 20:14, " milwaukeemommy " <milwaukeemommy@...> wrote: > Awww -- I'm so sorry for you. Sometimes I feel like I should keep my mouth shut, because I'm not the one with achalasia, my husband is, so I don't know what it " feels " like, all I know is what it looks like. My husband had a Heller in 2008 & hasn't seen a dr since, & it's been a roller coaster. He'll throw up for weeks at a time, then he'll eat just fine, then a couple months later he'll start throwing up again, then after a few weeks he eats just fine. He's kind of in between right now. We went to my mom's for dinner, he was able to eat some ham & potato salad. When there were a few bites left, he stood up & never sat back down. I also noticed he didn't have his huge jumbo size glass of water. When I asked if he wanted some, he said there was no way water was going to go down. Since he's never been back to the dr, he's never had a dilitation. He claims he's tried calling his dr a couple of times, but he's never called back. I can be lieve that would happen once, but not twice -- I don't think he's called at all. I told him to find another dr but he won't. He won't do anything. So you are very much like him with what's going on, but the big difference is you actually care, he doesn't. I'm still learning about A -- every time I read new posts I learn something new. My thoughts are with you! > > (in Milwaukee) > > > > > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > > Am I the only one on liquids still after having both HM and dilation. > > I want to know if there are any others here. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Welcome, Faith! Sounds like it's been a *very* long road for you. Your Mayo is one of the best places in the country to be dealing with. Rest easy. And good luck! xox /WV (Lots of s in this group, lol!) > > > > > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > > > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > > > Am I the only one on liquids still after having both HM and dilation. > > > I want to know if there are any others here. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Faith, I had my first HM done at Mayo in 1993. It lasted until just recently, and I was very happy with them. I would guess you will have great results. I don't know where you live, my next HM is scheduled for Gundersen-Lutheran, in La Crosse, WI, and the surgeon there is supposed to be really good with performing second HMs. Plus we know a surgeon there that recommended him and my original surgeon is now in Arizona, so that is why I didn't go back to Mayo for this one. I hope it goes well, and feel free to holler if you have issues finidng someone or need a shoulder to lean on! H.Buffalo City, WI CC: achalasia achalasia From: weissf@... Date: Sun, 8 Apr 2012 20:32:30 -0500 Subject: Re: Re: Anyone else like me? Hi, I'm new to the group. I found you all this afternoon. I had HM 21 years ago in the army. It's been failing over the past few years and now have no choice but to see another doc. I had thoracic surgery which was beyond painful and was punctured so was in ICU for a week. Had a fundlipication by army 2 yrs later. I understand why your husband does not want to go to another MD. I have an appt at Mayo in Rochester next month. Does anyone have any information about Mayo-Rochester???? Thanks, From the tundra of Minnesota Sent from my iPod On Apr 8, 2012, at 20:14, " milwaukeemommy " <milwaukeemommy@...> wrote: > Awww -- I'm so sorry for you. Sometimes I feel like I should keep my mouth shut, because I'm not the one with achalasia, my husband is, so I don't know what it " feels " like, all I know is what it looks like. My husband had a Heller in 2008 & hasn't seen a dr since, & it's been a roller coaster. He'll throw up for weeks at a time, then he'll eat just fine, then a couple months later he'll start throwing up again, then after a few weeks he eats just fine. He's kind of in between right now. We went to my mom's for dinner, he was able to eat some ham & potato salad. When there were a few bites left, he stood up & never sat back down. I also noticed he didn't have his huge jumbo size glass of water. When I asked if he wanted some, he said there was no way water was going to go down. Since he's never been back to the dr, he's never had a dilitation. He claims he's tried calling his dr a couple of times, but he's never called back. I can be lieve that would happen once, but not twice -- I don't think he's called at all. I told him to find another dr but he won't. He won't do anything. So you are very much like him with what's going on, but the big difference is you actually care, he doesn't. I'm still learning about A -- every time I read new posts I learn something new. My thoughts are with you! > > (in Milwaukee) > > > > > > This forum seems to be full of people waiting for first HM or dilation, or people who have had one or the other and are able to eat again (even if limited). > > My question now is am I alone here? I seem to be the only one who has had HM and dilation and who keeps going backwards and is worse than before either treatment. > > Am I the only one on liquids still after having both HM and dilation. > > I want to know if there are any others here. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 , I'm in the Metro Area-Minneapolis-St. . I'm going in for an initial consultation early next month. I hope they are good. My first surgeon had to be called in off of retirement (military) because no one new what to do. I guess I have been lucky, as the wrap was done by a surgeon who used a text book as he had never done that particular type of wrap. I will see what Mayo says. I'm not looking forward to a repeat manography. I found them to be particularly painful. Who is the surgeon in La Cross? Thanks. RE: Re: Anyone else like me? aith, I had my first HM done at Mayo in 1993. It lasted until just recently, nd I was very happy with them. I would guess you will have great results. I on't know where you live, my next HM is scheduled for Gundersen-Lutheran, in La rosse, WI, and the surgeon there is supposed to be really good with performing econd HMs. Plus we know a surgeon there that recommended him and my original urgeon is now in Arizona, so that is why I didn't go back to Mayo for this one. hope it goes well, and feel free to holler if you have issues finidng someone r need a shoulder to lean on! H.Buffalo City, WI CC: achalasia o: achalasia rom: weissf@... ate: Sun, 8 Apr 2012 20:32:30 -0500 ubject: Re: Re: Anyone else like me? Hi, I'm new to the group. I found you all this afternoon. I had HM 21 years ago in the army. It's been failing over the past few years and now have no choice but to see another doc. I had thoracic surgery which was beyond painful and was punctured so was in ICU for a week. Had a fundlipication by army 2 yrs later. I understand why your husband does not want to go to another MD. I have an appt at Mayo in Rochester next month. Does anyone have any information about Mayo-Rochester???? Thanks, From the tundra of Minnesota Sent from my iPod On Apr 8, 2012, at 20:14, " milwaukeemommy " <milwaukeemommy@...> wrote: > Awww -- I'm so sorry for you. Sometimes I feel like I should keep my outh shut, because I'm not the one with achalasia, my husband is, so I don't now what it " feels " like, all I know is what it looks like. My husband had a eller in 2008 & hasn't seen a dr since, & it's been a roller coaster. He'll hrow up for weeks at a time, then he'll eat just fine, then a couple months ater he'll start throwing up again, then after a few weeks he eats just fine. e's kind of in between right now. We went to my mom's for dinner, he was able o eat some ham & potato salad. When there were a few bites left, he stood up & ever sat back down. I also noticed he didn't have his huge jumbo size glass of ater. When I asked if he wanted some, he said there was no way water was going o go down. Since he's never been back to the dr, he's never had a dilitation. e claims he's tried calling his dr a couple of times, but he's never called ack. I can be lieve that would happen once, bu t not twice -- I don't think he's called at all. I told him to find another dr ut he won't. He won't do anything. So you are very much like him with what's oing on, but the big difference is you actually care, he doesn't. I'm still earning about A -- every time I read new posts I learn something new. My houghts are with you! > > (in Milwaukee) > > > > > > This forum seems to be full of people waiting for first HM or dilation, or eople who have had one or the other and are able to eat again (even if imited). > > My question now is am I alone here? I seem to be the only one who has had HM nd dilation and who keeps going backwards and is worse than before either reatment. > > Am I the only one on liquids still after having both HM and dilation. > > I want to know if there are any others here. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Faith, The surgeon in La Crosse is Dr. Kothari. My wife has a lifelong friend that is a surgical resident in the hospital and said he is the best surgeon she has ever met. Very thorough and keeps very up to date on the latest techniques and procedures. When my wife and I met him, we were very impressed. He was kind of fun to talk to since he really respected the 20 years of experience with achalasia that I brought to the table. I would guess that military doctors rarely see achalasia since it's supposedly only found in 1 out of 100,000 people and tends to not be in very many 18-25 year olds! I am sure others will agree with me that you shouldn't be afraid to research yourself and get a list of questions ready for the doctor. As far as the manometry (I think that's what you meant) goes, just relax and try to stay as calm as possible during it. well, as calm as you can be with a tube shoved up your nose and down your throat! Good luck! achalasia From: weissf@... Date: Mon, 9 Apr 2012 12:03:57 -0400 Subject: Re: Re: Anyone else like me? , I'm in the Metro Area-Minneapolis-St. . I'm going in for an initial consultation early next month. I hope they are good. My first surgeon had to be called in off of retirement (military) because no one new what to do. I guess I have been lucky, as the wrap was done by a surgeon who used a text book as he had never done that particular type of wrap. I will see what Mayo says. I'm not looking forward to a repeat manography. I found them to be particularly painful. Who is the surgeon in La Cross? Thanks. RE: Re: Anyone else like me? aith, I had my first HM done at Mayo in 1993. It lasted until just recently, nd I was very happy with them. I would guess you will have great results. I on't know where you live, my next HM is scheduled for Gundersen-Lutheran, in La rosse, WI, and the surgeon there is supposed to be really good with performing econd HMs. Plus we know a surgeon there that recommended him and my original urgeon is now in Arizona, so that is why I didn't go back to Mayo for this one. hope it goes well, and feel free to holler if you have issues finidng someone r need a shoulder to lean on! H.Buffalo City, WI CC: achalasia o: achalasia rom: weissf@... ate: Sun, 8 Apr 2012 20:32:30 -0500 ubject: Re: Re: Anyone else like me? Hi, I'm new to the group. I found you all this afternoon. I had HM 21 years ago in the army. It's been failing over the past few years and now have no choice but to see another doc. I had thoracic surgery which was beyond painful and was punctured so was in ICU for a week. Had a fundlipication by army 2 yrs later. I understand why your husband does not want to go to another MD. I have an appt at Mayo in Rochester next month. Does anyone have any information about Mayo-Rochester???? Thanks, From the tundra of Minnesota Sent from my iPod On Apr 8, 2012, at 20:14, " milwaukeemommy " <milwaukeemommy@...> wrote: > Awww -- I'm so sorry for you. Sometimes I feel like I should keep my outh shut, because I'm not the one with achalasia, my husband is, so I don't now what it " feels " like, all I know is what it looks like. My husband had a eller in 2008 & hasn't seen a dr since, & it's been a roller coaster. He'll hrow up for weeks at a time, then he'll eat just fine, then a couple months ater he'll start throwing up again, then after a few weeks he eats just fine. e's kind of in between right now. We went to my mom's for dinner, he was able o eat some ham & potato salad. When there were a few bites left, he stood up & ever sat back down. I also noticed he didn't have his huge jumbo size glass of ater. When I asked if he wanted some, he said there was no way water was going o go down. Since he's never been back to the dr, he's never had a dilitation. e claims he's tried calling his dr a couple of times, but he's never called ack. I can be lieve that would happen once, bu t not twice -- I don't think he's called at all. I told him to find another dr ut he won't. He won't do anything. So you are very much like him with what's oing on, but the big difference is you actually care, he doesn't. I'm still earning about A -- every time I read new posts I learn something new. My houghts are with you! > > (in Milwaukee) > > > > > > This forum seems to be full of people waiting for first HM or dilation, or eople who have had one or the other and are able to eat again (even if imited). > > My question now is am I alone here? I seem to be the only one who has had HM nd dilation and who keeps going backwards and is worse than before either reatment. > > Am I the only one on liquids still after having both HM and dilation. > > I want to know if there are any others here. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 well after posting yesterday while cooking dinner for DH and two other couples... i fixed cornbread dressing which normally " works " fresh asparagus bunches, lovely huge salad, banana pudding (yep from scratch) brown sugar ham, deviled eggs, potato dish and more greens etc... i had not eaten all day, and i ate.. really thought i was doing ok . not eating too badly.. i was sick as a dog all evening .. and of course since on mondays i have to get up at 415 am and be on the road by five. i was up till almost midnight. barfing. barfing.. finally did a " Mr Ray " and got that E cleaned out and slept like a baby.. am at this very moment making a wonderful pot of potato soup,, DH will enjoy Easter leftovers.. SOOOOOOO i guess we all have surprises,,, Kim Ellen in the Deep South Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Poor baby!! I think that letting ourselves get *hungry* is a big pitfall: when we're really hungry, we forget to drink between bites. And once it gets packed in, drinking only helps it come back up until we get down to the original blob. We'll learn (I hope!) HugZ!!! > > well after posting yesterday while cooking dinner for DH and two other couples... i fixed cornbread dressing which normally " works " fresh asparagus bunches, lovely huge salad, banana pudding (yep from scratch) brown sugar ham, deviled eggs, potato dish and more greens etc... i had not eaten all day, and i ate.. really thought i was doing ok . not eating too badly.. i was sick as a dog all evening .. and of course since on mondays i have to get up at 415 am and be on the road by five. i was up till almost midnight. barfing. barfing.. finally did a " Mr Ray " and got that E cleaned out and slept like a baby.. am at this very moment making a wonderful pot of potato soup,, DH will enjoy Easter leftovers.. SOOOOOOO i guess we all have surprises,,, Kim Ellen in the Deep South > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2012 Report Share Posted April 9, 2012 Guess I am lucky then that I don't get hungry! > > > > well after posting yesterday while cooking dinner for DH and two other couples... i fixed cornbread dressing which normally " works " fresh asparagus bunches, lovely huge salad, banana pudding (yep from scratch) brown sugar ham, deviled eggs, potato dish and more greens etc... i had not eaten all day, and i ate.. really thought i was doing ok . not eating too badly.. i was sick as a dog all evening .. and of course since on mondays i have to get up at 415 am and be on the road by five. i was up till almost midnight. barfing. barfing.. finally did a " Mr Ray " and got that E cleaned out and slept like a baby.. am at this very moment making a wonderful pot of potato soup,, DH will enjoy Easter leftovers.. SOOOOOOO i guess we all have surprises,,, Kim Ellen in the Deep South > > > > Quote Link to comment Share on other sites More sharing options...
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