Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Hi everyone, I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 I had the heller 6 years ago, my E has become huge and my surgeon recommended an esophagectomy also. It is my understanding that then you get a feeding tube and that is that. No more eating, or pretending to be normal. However, not eating stinks. Please keep us posted I am interested in your decision and how it all turns out. My thoughts and prayers go out to you at this tough time. > > Hi everyone, > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Nooooo. No feeding tube. Go to a surgeon who knows how to give you a second chance. My daughter had an esophagectomy in Tampa the end of September. Dr rosemurgy pulled her stomach up and she eats normally now. Are there problems? Yes. It was a difficult recovery, but every day is better. No more food stuck no more spasms. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Hang in there. Studies do show shrinkinge. esophagectomy after a HM Hi everyone, I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Where did she have it done? Re: esophagectomy after a HM Nooooo. No feeding tube. Go to a surgeon who knows how to give you a second chance. My daughter had an esophagectomy in Tampa the end of September. Dr rosemurgy pulled her stomach up and she eats normally now. Are there problems? Yes. It was a difficult recovery, but every day is better. No more food stuck no more spasms. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 Tampa general, dr Rosemurgy. Sent from my iPad On May 31, 2012, at 10:36 AM, weissf@... wrote: > Where did she have it done? > > Re: esophagectomy after a HM > > Nooooo. No feeding tube. Go to a surgeon who knows how to give you a second chance. My daughter had an esophagectomy in Tampa the end of September. Dr rosemurgy pulled her stomach up and she eats normally now. Are there problems? Yes. It was a difficult recovery, but every day is better. No more food stuck no more spasms. > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 ,  Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others.  ________________________________ From: " lindsaywalker877@... " <lindsaywalker877@...> achalasia Sent: Thursday, May 31, 2012 7:54 AM Subject: esophagectomy after a HM  Hi everyone, I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 , I just had surgery on May 4th. Please give yourself more time to heal before making your decision. I still have things get stuck, but stuff is staying down. I am not eating solids yet, but my surgeon says to give it time. He told me to wait six to eight weeks and if I can't toleratw solids than I will have another endiscope done. But please give yourself time to heal more. ________________________________ From: RICHARD FRIEDMAN <cynmark24@...> " achalasia " <achalasia > Sent: Thursday, May 31, 2012 11:09 AM Subject: Re: esophagectomy after a HM  ,  Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others.  ________________________________ From: " lindsaywalker877@... " <lindsaywalker877@...> achalasia Sent: Thursday, May 31, 2012 7:54 AM Subject: esophagectomy after a HM  Hi everyone, I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 I appreciate everyone's responses. I am going to talk to him about doing a few more dialations. The whole thing is so odd because the first 10 days after surgery I was swallowing liquids fine. Then I noticed things started backing up and eventually lead to a screaming halt. I did have an EGD done on Tuesday, they found an ulcer in my E and they did a diliation and botox at the myotomy part. I again was all of a sudden able to swallow, but unfortunitly only for a few hours. Doesn't that sound like a myotomy problem and not an e problem? My surgeon seems to want to blame it on my E (which is sigmoid) but I really believe that considering how I was able to swallow right after surgery and right after the first dilation that it has to have something to do with the myotomy part. I mean my E didn't change from pre to post surgery. If it was due to my E being too big I would think I would have been throwing up a lot more than I was before surgery. Does this seem like a logical thought process? I just don't understand why he doesn't feel the same way. What am I missing? So anyways, thank you for all the suggestions. I do think I'm going to push for the dilitations and then if those fail a repeat heller myotomy. And if that fails than an ectomy it is. Again though I really really appreciate all of you. Thank you again! It really has changed my thought process hearing from each of you. > > , >  > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. >  > > > > ________________________________ > From: " lindsaywalker877@... " <lindsaywalker877@...> > achalasia > Sent: Thursday, May 31, 2012 7:54 AM > Subject: esophagectomy after a HM > > >  > Hi everyone, > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > Thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2012 Report Share Posted May 31, 2012 I am trying so hard to hang in there, but not being able to drink water or juice or anything is so debilitating. I miss food but I need water. The hardest thing for me right now is just trying to work full time nights, raise 2 toddlers, get IV's every few days, and try to sleep in there. Why can't I just pause my life while this gts sorted out? Or better yet fast forward to a time when I get drink again. Best of luck to you! I hope you will be on mushy foods soon at least. > > , I just had surgery on May 4th. Please give yourself more time to heal before making your decision. I still have things get stuck, but stuff is staying down. I am not eating solids yet, but my surgeon says to give it time. He told me to wait six to eight weeks and if I can't toleratw solids than I will have another endiscope done. But please give yourself time to heal more. > > > ________________________________ > From: RICHARD FRIEDMAN <cynmark24@...> > " achalasia " <achalasia > > Sent: Thursday, May 31, 2012 11:09 AM > Subject: Re: esophagectomy after a HM > > >  > > , >  > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. >  > > > ________________________________ > From: " lindsaywalker877@... " <lindsaywalker877@...> > achalasia > Sent: Thursday, May 31, 2012 7:54 AM > Subject: esophagectomy after a HM > >  > Hi everyone, > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2012 Report Share Posted June 1, 2012 ~~ doing a *so called* dilation during an EGD is NOT what we around here call a dilation. The " dilation " during an EGD is about 15mm, and is far from large enough!! My GIs do the EGD dilation but not the balloon dilation which is a separate procedure done by a separate group of peeps. A balloon (pneumatic) dilation uses 30, 35,40mm balloons. I think they should damn well STOP calling the tiny, and known to be temporary, *enlargement* during the EGD a dilation at all. And *yes* it does sound like either the myotomy was incomplete, or that you're forming scar tissue. Perhaps time to ask for a second (and third and fourth) opinions. . . . Wishing you the best! xox > > > > , > >  > > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. > >  > > > > > > > > ________________________________ > > From: " lindsaywalker877@ " <lindsaywalker877@> > > achalasia > > Sent: Thursday, May 31, 2012 7:54 AM > > Subject: esophagectomy after a HM > > > > > >  > > Hi everyone, > > > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2012 Report Share Posted June 1, 2012 After my myotomy, I've had to have three dilations over the years. The dilation that actually gave me three years of 100% trouble-free existence was to 40 mm and was done under general anesthesia. I wish I could get somebody to give me another one. I think my GI wants to go for a second BoTox injection before referring me to another specialist. > > > > > > , > > >  > > > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. > > >  > > > > > > > > > > > > ________________________________ > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > achalasia > > > Sent: Thursday, May 31, 2012 7:54 AM > > > Subject: esophagectomy after a HM > > > > > > > > >  > > > Hi everyone, > > > > > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > > > > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > > > > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > > > > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2012 Report Share Posted June 1, 2012 , I actually was put completely under in the anticipation they may need to do some things. I am waiting for my doc. to call to see how big of one they did. From the responses I have gotten on here it seems that is the way to go for now. i'm hoping I can get in for another dilitation next week. I'm just hoping he agrees with me. In the mean time I'm just drinking and regerging constantly. Thanks, > > > > > > , > > >  > > > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. > > >  > > > > > > > > > > > > ________________________________ > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > achalasia > > > Sent: Thursday, May 31, 2012 7:54 AM > > > Subject: esophagectomy after a HM > > > > > > > > >  > > > Hi everyone, > > > > > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > > > > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > > > > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > > > > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2012 Report Share Posted June 1, 2012 Just wanted to drop in and say that you are in my thoughts. I hope that things do get better for you. S -- esophagectomy after a HM > > > Â > Hi everyone, > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > Thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2012 Report Share Posted June 2, 2012 Thanks ! I am still trying to get ahold of my surgeon. I called on Thursday and never heard from him. On Monday I will call him again. I really like my surgeon, I just am having a hard time understanding why it seems like he doesn't believe me. He thought it was strange that I make myself throw up instead of just letting it happen. Does anyone else do this? When you know your E is getting full and it's uncomfortable, do you gag yourself to clear it out? I find this easier than letting my body do it eventually. I feel like he thinks I'm the one causing the problem, not the myotomy. And this is what I hope to address with him when I talk to him because I really need a surgeon who is going to listen to what I'm saying and actually plan to fix it, instead of insisting I wait it out. I feel like he's telling me to suck it up. I know I am getting small amounts of fluid in, but not enough to make me urinate more than once, sometimes twice a day and very little at that. And in order for me to get those fluids in, it's a constant battle. I've tried popsicles, sipping, timing the amount I drink.. etc. even drinking as much as I possible can until it's uncomfortable. Nothing works. So it can't be me, right? Something has to be wrong. I worry about the toll this has and will take on my body if I just " wait it out " and even mentally I find it hard to stay in a good place. Anyways, just frustrated this week with the whole thing. I miss food...a co-worker brought in these amazing pumpking creamcheese frosting whoopee pies. I almost cried just looking at them lol. 6 weeks no food, 3 weeks throwing up fluids. I wish I could undo the HM and go back to throwing up 3-5 times a day. At least then I was still enjoying food. > > > > , > >  > > Before you go running for an ectomy, please give the surgery more time. If > things don't improve, then have tests (eg. endoscopy & barium swallow) in > order to determine just what is going on inside of you (i.e. just what the > condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below > your stomach, etc. If it is the case that there is a chance that a > follow-up dilatation might help, I would strongly suggest you consider that > as an option before undergoing a far more radical approach. Yes, ectomies > are the appropriate solution in some cases, but might be premature in others > > >  > > > > > > > > ________________________________ > > From: " lindsaywalker877@ " <lindsaywalker877@> > > achalasia > > Sent: Thursday, May 31, 2012 7:54 AM > > Subject: esophagectomy after a HM > > > > > >  > > Hi everyone, > > > > I am wondering if anyone out there who had a failed heller myotomy under > went an esophagectomy shortly after? > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started > coming back up and shortly after everything stopped going down. I have spent > the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down > yesterday to have an endoscopy done. They did a dilatation and they but > botox in the muscle. It worked for about 10 hours, and I am already back to > throwing everything up. My surgeon really wants me to wait it out from about > 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months > of this. The other option is an esophagectomy. > > > > I am not sure what to do, I don't really want another surgery but I just > don't see how my E is going to shrink if things are getting stuck there. I > am a little frustrated with my surgeon because he actually tried to say > maybe it was just my perception that it wasn't going past my E. I quickly > told him that that was not the case. > > > > I'm planning on doing this for another 2 weeks and then talking to him > again about the surgery if things don't improve. I would feel so much better > if I could just get more liquids in but not being able to drink is extremely > frustrating. > > > > Anyways, just wondering if anyone has experienced anything like this and > ended up having an esophagectomy. > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2012 Report Share Posted June 2, 2012 Peppermint tea relaxes the LES. Try that maybe. Sent from my iPod On Jun 2, 2012, at 3:37, " lindsaywalker877@... " <lindsaywalker877@...> wrote: > Thanks ! I am still trying to get ahold of my surgeon. I called on Thursday and never heard from him. On Monday I will call him again. > > I really like my surgeon, I just am having a hard time understanding why it seems like he doesn't believe me. He thought it was strange that I make myself throw up instead of just letting it happen. Does anyone else do this? When you know your E is getting full and it's uncomfortable, do you gag yourself to clear it out? I find this easier than letting my body do it eventually. > > I feel like he thinks I'm the one causing the problem, not the myotomy. And this is what I hope to address with him when I talk to him because I really need a surgeon who is going to listen to what I'm saying and actually plan to fix it, instead of insisting I wait it out. I feel like he's telling me to suck it up. I know I am getting small amounts of fluid in, but not enough to make me urinate more than once, sometimes twice a day and very little at that. And in order for me to get those fluids in, it's a constant battle. I've tried popsicles, sipping, timing the amount I drink.. etc. even drinking as much as I possible can until it's uncomfortable. Nothing works. So it can't be me, right? Something has to be wrong. > > I worry about the toll this has and will take on my body if I just " wait it out " and even mentally I find it hard to stay in a good place. > > Anyways, just frustrated this week with the whole thing. I miss food...a co-worker brought in these amazing pumpking creamcheese frosting whoopee pies. I almost cried just looking at them lol. > > 6 weeks no food, 3 weeks throwing up fluids. I wish I could undo the HM and go back to throwing up 3-5 times a day. At least then I was still enjoying food. > > > > > > > > > > , > > >  > > > Before you go running for an ectomy, please give the surgery more time. If > > things don't improve, then have tests (eg. endoscopy & barium swallow) in > > order to determine just what is going on inside of you (i.e. just what the > > condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below > > your stomach, etc. If it is the case that there is a chance that a > > follow-up dilatation might help, I would strongly suggest you consider that > > as an option before undergoing a far more radical approach. Yes, ectomies > > are the appropriate solution in some cases, but might be premature in others > > > > >  > > > > > > > > > > > > ________________________________ > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > achalasia > > > Sent: Thursday, May 31, 2012 7:54 AM > > > Subject: esophagectomy after a HM > > > > > > > > >  > > > Hi everyone, > > > > > > I am wondering if anyone out there who had a failed heller myotomy under > > went an esophagectomy shortly after? > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started > > coming back up and shortly after everything stopped going down. I have spent > > the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down > > yesterday to have an endoscopy done. They did a dilatation and they but > > botox in the muscle. It worked for about 10 hours, and I am already back to > > throwing everything up. My surgeon really wants me to wait it out from about > > 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months > > of this. The other option is an esophagectomy. > > > > > > I am not sure what to do, I don't really want another surgery but I just > > don't see how my E is going to shrink if things are getting stuck there. I > > am a little frustrated with my surgeon because he actually tried to say > > maybe it was just my perception that it wasn't going past my E. I quickly > > told him that that was not the case. > > > > > > I'm planning on doing this for another 2 weeks and then talking to him > > again about the surgery if things don't improve. I would feel so much better > > if I could just get more liquids in but not being able to drink is extremely > > frustrating. > > > > > > Anyways, just wondering if anyone has experienced anything like this and > > ended up having an esophagectomy. > > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2012 Report Share Posted June 2, 2012 Hi , When I was at my worst, I felt the same way. I felt so hopeless, frustrated, unable to care for my kids, resentful when I would see food that I couldn't eat, scared that I was going to end up in the hospital with a feeding tube, etc. My GI tried to blow it off, too, when I said that I was worried because I was regurging everything, even water and sometimes my saliva. I asked him if I should get an IV for dehydration and he walked away from me, waved his hand in the air and said, " no- you just need to decide if you want surgery or a dilation and schedule it. " I said that that would take time and what should I do in the meantime? He said, " don't eat solids, just drink fluids slowly. " Seriously? I hadn't had solids in months and the fluids weren't going down! He refused to listen to me so my husband called my regular doctor and told him what was going on and then my regular doctor called both the GI doc and my surgeon and pitched a fit and all of a sudden I was getting calls from both doctors trying to schedule something. I ended up getting the emergency BoTox and now I am trying to last on this until the fall when my kids are back in school to schedule the surgery. Anyway, all of that was to say that I understand about the doctors blowing you off. I was lucky that my regular doctor chose to get involved. It took that to get some attention! Oh, and I also force the food/liquids to come up. It won't come up on its own, and it is VERY painful when it builds up, so I gag myself. Otherwise it would sit there indefinitely. I hope you can get through to him!! Thinking about you! xoxo, > > > > > > , > > >  > > > Before you go running for an ectomy, please give the surgery more time. If > > things don't improve, then have tests (eg. endoscopy & barium swallow) in > > order to determine just what is going on inside of you (i.e. just what the > > condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below > > your stomach, etc. If it is the case that there is a chance that a > > follow-up dilatation might help, I would strongly suggest you consider that > > as an option before undergoing a far more radical approach. Yes, ectomies > > are the appropriate solution in some cases, but might be premature in others > > > > >  > > > > > > > > > > > > ________________________________ > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > achalasia > > > Sent: Thursday, May 31, 2012 7:54 AM > > > Subject: esophagectomy after a HM > > > > > > > > >  > > > Hi everyone, > > > > > > I am wondering if anyone out there who had a failed heller myotomy under > > went an esophagectomy shortly after? > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started > > coming back up and shortly after everything stopped going down. I have spent > > the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down > > yesterday to have an endoscopy done. They did a dilatation and they but > > botox in the muscle. It worked for about 10 hours, and I am already back to > > throwing everything up. My surgeon really wants me to wait it out from about > > 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months > > of this. The other option is an esophagectomy. > > > > > > I am not sure what to do, I don't really want another surgery but I just > > don't see how my E is going to shrink if things are getting stuck there. I > > am a little frustrated with my surgeon because he actually tried to say > > maybe it was just my perception that it wasn't going past my E. I quickly > > told him that that was not the case. > > > > > > I'm planning on doing this for another 2 weeks and then talking to him > > again about the surgery if things don't improve. I would feel so much better > > if I could just get more liquids in but not being able to drink is extremely > > frustrating. > > > > > > Anyways, just wondering if anyone has experienced anything like this and > > ended up having an esophagectomy. > > > > > > Thanks! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2012 Report Share Posted June 2, 2012 I hate to say it, but gender is sometimes a factor in treatment. Sent from my iPod On Jun 2, 2012, at 9:33, " erin_lievens " <erinl@...> wrote: > Hi , > > When I was at my worst, I felt the same way. I felt so hopeless, frustrated, unable to care for my kids, resentful when I would see food that I couldn't eat, scared that I was going to end up in the hospital with a feeding tube, etc. My GI tried to blow it off, too, when I said that I was worried because I was regurging everything, even water and sometimes my saliva. I asked him if I should get an IV for dehydration and he walked away from me, waved his hand in the air and said, " no- you just need to decide if you want surgery or a dilation and schedule it. " I said that that would take time and what should I do in the meantime? He said, " don't eat solids, just drink fluids slowly. " Seriously? I hadn't had solids in months and the fluids weren't going down! He refused to listen to me so my husband called my regular doctor and told him what was going on and then my regular doctor called both the GI doc and my surgeon and pitched a fit and all of a sudden I was getting calls from both doctors trying to schedule something. I ended up getting the emergency BoTox and now I am trying to last on this until the fall when my kids are back in school to schedule the surgery. > > Anyway, all of that was to say that I understand about the doctors blowing you off. I was lucky that my regular doctor chose to get involved. It took that to get some attention! > > Oh, and I also force the food/liquids to come up. It won't come up on its own, and it is VERY painful when it builds up, so I gag myself. Otherwise it would sit there indefinitely. > > I hope you can get through to him!! Thinking about you! > > xoxo, > > > > > > > > > > > , > > > >  > > > > Before you go running for an ectomy, please give the surgery more time. If > > > things don't improve, then have tests (eg. endoscopy & barium swallow) in > > > order to determine just what is going on inside of you (i.e. just what the > > > condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below > > > your stomach, etc. If it is the case that there is a chance that a > > > follow-up dilatation might help, I would strongly suggest you consider that > > > as an option before undergoing a far more radical approach. Yes, ectomies > > > are the appropriate solution in some cases, but might be premature in others > > > > > > >  > > > > > > > > > > > > > > > > ________________________________ > > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > > achalasia > > > > Sent: Thursday, May 31, 2012 7:54 AM > > > > Subject: esophagectomy after a HM > > > > > > > > > > > >  > > > > Hi everyone, > > > > > > > > I am wondering if anyone out there who had a failed heller myotomy under > > > went an esophagectomy shortly after? > > > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started > > > coming back up and shortly after everything stopped going down. I have spent > > > the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down > > > yesterday to have an endoscopy done. They did a dilatation and they but > > > botox in the muscle. It worked for about 10 hours, and I am already back to > > > throwing everything up. My surgeon really wants me to wait it out from about > > > 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months > > > of this. The other option is an esophagectomy. > > > > > > > > I am not sure what to do, I don't really want another surgery but I just > > > don't see how my E is going to shrink if things are getting stuck there. I > > > am a little frustrated with my surgeon because he actually tried to say > > > maybe it was just my perception that it wasn't going past my E. I quickly > > > told him that that was not the case. > > > > > > > > I'm planning on doing this for another 2 weeks and then talking to him > > > again about the surgery if things don't improve. I would feel so much better > > > if I could just get more liquids in but not being able to drink is extremely > > > frustrating. > > > > > > > > Anyways, just wondering if anyone has experienced anything like this and > > > ended up having an esophagectomy. > > > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2012 Report Share Posted June 2, 2012 I absolutely have to resort to gagging sometimes to bring the food stuck in my esophagus back up. It seems your doctor does not understand the difference between vomiting and regurgitating. In our cases the food is not getting into the stomach through the tight or blocked LES. So we aren't vomiting when the food comes back up, we are regurgitating. Since my HM, I do not vomit at all. When I get nauseous (not very often thank God), it often sets off incredibly painful spasms. I asked my most current GI for an anti-nausea drug but apparently he doesn't believe in it. It helped before. > > > > > > > > , > > > >  > > > > Before you go running for an ectomy, please give the surgery more time. If > > > things don't improve, then have tests (eg. endoscopy & barium swallow) in > > > order to determine just what is going on inside of you (i.e. just what the > > > condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below > > > your stomach, etc. If it is the case that there is a chance that a > > > follow-up dilatation might help, I would strongly suggest you consider that > > > as an option before undergoing a far more radical approach. Yes, ectomies > > > are the appropriate solution in some cases, but might be premature in others > > > > > > >  > > > > > > > > > > > > > > > > ________________________________ > > > > From: " lindsaywalker877@ " <lindsaywalker877@> > > > > achalasia > > > > Sent: Thursday, May 31, 2012 7:54 AM > > > > Subject: esophagectomy after a HM > > > > > > > > > > > >  > > > > Hi everyone, > > > > > > > > I am wondering if anyone out there who had a failed heller myotomy under > > > went an esophagectomy shortly after? > > > > > > > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started > > > coming back up and shortly after everything stopped going down. I have spent > > > the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down > > > yesterday to have an endoscopy done. They did a dilatation and they but > > > botox in the muscle. It worked for about 10 hours, and I am already back to > > > throwing everything up. My surgeon really wants me to wait it out from about > > > 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months > > > of this. The other option is an esophagectomy. > > > > > > > > I am not sure what to do, I don't really want another surgery but I just > > > don't see how my E is going to shrink if things are getting stuck there. I > > > am a little frustrated with my surgeon because he actually tried to say > > > maybe it was just my perception that it wasn't going past my E. I quickly > > > told him that that was not the case. > > > > > > > > I'm planning on doing this for another 2 weeks and then talking to him > > > again about the surgery if things don't improve. I would feel so much better > > > if I could just get more liquids in but not being able to drink is extremely > > > frustrating. > > > > > > > > Anyways, just wondering if anyone has experienced anything like this and > > > ended up having an esophagectomy. > > > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 Hi , I've been offline for a few weeks - just catching up on some posts. So sorry to hear you're still struggling with this after your HM - I was so hoping for you that things would settle out.  I'm so thankful that mine was a success - have you thought about seeing another surgeon for a second opinion? I also had a " bend " at the bottom of my esophagus - when he performed the HM he pulled the esophagus down into the stomach to straighten it before doing the wrap. Not sure if this is standard procedure, but whatever he did certainly fixed the problem. If you ever want to come to Atlanta for a procedure I'll be happy to help you out any way I can. I hate to think you need an ectomy after all you've been though! Take care, Kim ________________________________ From: " lindsaywalker877@... " <lindsaywalker877@...> achalasia Sent: Thursday, May 31, 2012 11:13 PM Subject: Re: esophagectomy after a HM  I appreciate everyone's responses. I am going to talk to him about doing a few more dialations. The whole thing is so odd because the first 10 days after surgery I was swallowing liquids fine. Then I noticed things started backing up and eventually lead to a screaming halt. I did have an EGD done on Tuesday, they found an ulcer in my E and they did a diliation and botox at the myotomy part. I again was all of a sudden able to swallow, but unfortunitly only for a few hours. Doesn't that sound like a myotomy problem and not an e problem? My surgeon seems to want to blame it on my E (which is sigmoid) but I really believe that considering how I was able to swallow right after surgery and right after the first dilation that it has to have something to do with the myotomy part. I mean my E didn't change from pre to post surgery. If it was due to my E being too big I would think I would have been throwing up a lot more than I was before surgery. Does this seem like a logical thought process? I just don't understand why he doesn't feel the same way. What am I missing? So anyways, thank you for all the suggestions. I do think I'm going to push for the dilitations and then if those fail a repeat heller myotomy. And if that fails than an ectomy it is. Again though I really really appreciate all of you. Thank you again! It really has changed my thought process hearing from each of you. > > , >  > Before you go running for an ectomy, please give the surgery more time. If things don't improve, then have tests (eg. endoscopy & barium swallow) in order to determine just what is going on inside of you (i.e. just what the condition of your E is.) Is it mega, tortuous, sigmoid, does it sink below your stomach, etc. If it is the case that there is a chance that a follow-up dilatation might help, I would strongly suggest you consider that as an option before undergoing a far more radical approach. Yes, ectomies are the appropriate solution in some cases, but might be premature in others. >  > > > > ________________________________ > From: " lindsaywalker877@... " <lindsaywalker877@...> > achalasia > Sent: Thursday, May 31, 2012 7:54 AM > Subject: esophagectomy after a HM > > >  > Hi everyone, > > I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? > > I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. > > I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. > > I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. > > Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. > > Thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 That's a very tough decision to make. I have not had the HM yet but generally it seems to work for 90 % of the A population. It seems as though time, and not necessarily a month and a half, it seems to get better. Only you can decide if that is right for you.  Best of luck to you!  Kim A ________________________________ From: " lindsaywalker877@... " <lindsaywalker877@...> achalasia Sent: Thursday, May 31, 2012 5:54 AM Subject: esophagectomy after a HM  Hi everyone, I am wondering if anyone out there who had a failed heller myotomy under went an esophagectomy shortly after? I had a HM on 4/25. Things started out okay, but by week 2 fluids started coming back up and shortly after everything stopped going down. I have spent the past 2 weeks in E.R.'s for IV fluids due to dehydration. I went down yesterday to have an endoscopy done. They did a dilatation and they but botox in the muscle. It worked for about 10 hours, and I am already back to throwing everything up. My surgeon really wants me to wait it out from about 6 months in hopes my E will shrink back. I'm just not sure I can do 6 months of this. The other option is an esophagectomy. I am not sure what to do, I don't really want another surgery but I just don't see how my E is going to shrink if things are getting stuck there. I am a little frustrated with my surgeon because he actually tried to say maybe it was just my perception that it wasn't going past my E. I quickly told him that that was not the case. I'm planning on doing this for another 2 weeks and then talking to him again about the surgery if things don't improve. I would feel so much better if I could just get more liquids in but not being able to drink is extremely frustrating. Anyways, just wondering if anyone has experienced anything like this and ended up having an esophagectomy. Thanks! Quote Link to comment Share on other sites More sharing options...
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