Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 -- I've not had the surgery, but there are a few here who have. If you do a search on it (try a few different spellings, too, everyone seems to have a variation on how they spell it) you'll find several entries, some even just in the past month. The search box is on the top part of any message page on the website. I'm glad you found this group -- it's SO nice to not be the only one who's been told "it's all in your head" or "relax, it's just nerves" -- just knowing I'm not the only one can make me feel better, even if my symptoms themselves don't change!Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi , I had an Esophagectomy 10 years ago and I am doing great, eat anything I want and gained back all the weight I lost and am maintaining it as a matter of fact I am now trying to lose a few pounds. My history can be found by inputting the message #1413 Esophectomy > I just joined this group this AM. It has been wonderful reading all > of your postings and finding people experiencing the same > frustrations and horrors as myself. > > I think the biggest frustration over the past 10 years has been > having to explain the condition to so many people. Their eyes just > glaze over. I have even had people tell me that it is just " my > nerves " and that if I slowed down and calmed down I would be fine. I > even had an ER doctor and nurse tell me that! When I went for surgery > (lap myotomy & wrap) in January 1999 this quickly stopped as I then > had proof that the condition was real. > > Anyways I have a question for the group. Has anyone had a esophectomy > and feeding tube? > > I had a myotomy in 1999 and did really well until 2002 when I started > having problems again. I had a motility study done at UCSF with Dr. > Patti's group and the results were ..... advancement of the Achalasia > to the point that I have NO peristalysis and several abnormalties in > the esophagus, including a large diviticular above the diagphram. His > view of a next course of action is the removal of the esophagus and a > feeding tube. > > Now miracuously I am getting enough nutrition (amazing what a diet of > chocolate, ice cream & cookies can do) and I am not yet aspirating so > I am delaying the surgery until this is no longer the case. I am > having my GI monitor and my GP monitor my nutrition levels. I have > even recently gained weight! > > Unfortunately I have moved back to Dallas and away from UCSF. I have > some time to research before the surgery. I know that this surgery > has a bad fatality rate if done by inexperienced surgeons. I am > looking for some good srugeons and to talk to anyone who has had this > done. What is your quality of life? Can you do fluids at least? > > let me know..... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Wow!! You have been through it all!!! Did you have a feeding tube? I thought that once the esophagus was removed that you could not eat normally but only through the tube? Your symptoms sound like mine only mine have occurred over the last 24 years with only the last 11 being actually diagnosed with Achalasia. I too am having parts of the esophagus collapse in and prolapse out. Where and when was your surgery? .... > Hi , > I had an Esophagectomy 10 years ago and I am doing great, eat anything I > want and gained back all the weight I lost and am maintaining it as a matter > of fact I am now trying to lose a few pounds. My history can be found by > inputting the message #1413 > > Esophectomy > > > > I just joined this group this AM. It has been wonderful reading all > > of your postings and finding people experiencing the same > > frustrations and horrors as myself. > > > > I think the biggest frustration over the past 10 years has been > > having to explain the condition to so many people. Their eyes just > > glaze over. I have even had people tell me that it is just " my > > nerves " and that if I slowed down and calmed down I would be fine. I > > even had an ER doctor and nurse tell me that! When I went for surgery > > (lap myotomy & wrap) in January 1999 this quickly stopped as I then > > had proof that the condition was real. > > > > Anyways I have a question for the group. Has anyone had a esophectomy > > and feeding tube? > > > > I had a myotomy in 1999 and did really well until 2002 when I started > > having problems again. I had a motility study done at UCSF with Dr. > > Patti's group and the results were ..... advancement of the Achalasia > > to the point that I have NO peristalysis and several abnormalties in > > the esophagus, including a large diviticular above the diagphram. His > > view of a next course of action is the removal of the esophagus and a > > feeding tube. > > > > Now miracuously I am getting enough nutrition (amazing what a diet of > > chocolate, ice cream & cookies can do) and I am not yet aspirating so > > I am delaying the surgery until this is no longer the case. I am > > having my GI monitor and my GP monitor my nutrition levels. I have > > even recently gained weight! > > > > Unfortunately I have moved back to Dallas and away from UCSF. I have > > some time to research before the surgery. I know that this surgery > > has a bad fatality rate if done by inexperienced surgeons. I am > > looking for some good srugeons and to talk to anyone who has had this > > done. What is your quality of life? Can you do fluids at least? > > > > let me know..... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 No, I never had a feeding tube, I was having liquids such as milk shakes before leaving the hospital. My impression is that a feeding tube is only temporary if the surgeons feels that it is better to keep food away from the surgical site. Like you, my symptoms occurred over a 45 year period, when in 1993 I had reached the point of deciding that I didn't have to live that way. The quality of my life had deteriorate to that extent. Most of my esophagus had collapsed in on itself making it difficult to function on a day to day basis. I was loosing weight at almost a pound a day and with almost no exertion I would have unbearable spasms. Even though my recovery time was quite long I am very glad I made the decision to have the surgery, today I can live a normal life. Esophectomy > > > > > > > I just joined this group this AM. It has been wonderful reading > all > > > of your postings and finding people experiencing the same > > > frustrations and horrors as myself. > > > > > > I think the biggest frustration over the past 10 years has been > > > having to explain the condition to so many people. Their eyes just > > > glaze over. I have even had people tell me that it is just " my > > > nerves " and that if I slowed down and calmed down I would be > fine. I > > > even had an ER doctor and nurse tell me that! When I went for > surgery > > > (lap myotomy & wrap) in January 1999 this quickly stopped as I > then > > > had proof that the condition was real. > > > > > > Anyways I have a question for the group. Has anyone had a > esophectomy > > > and feeding tube? > > > > > > I had a myotomy in 1999 and did really well until 2002 when I > started > > > having problems again. I had a motility study done at UCSF with > Dr. > > > Patti's group and the results were ..... advancement of the > Achalasia > > > to the point that I have NO peristalysis and several abnormalties > in > > > the esophagus, including a large diviticular above the diagphram. > His > > > view of a next course of action is the removal of the esophagus > and a > > > feeding tube. > > > > > > Now miracuously I am getting enough nutrition (amazing what a > diet of > > > chocolate, ice cream & cookies can do) and I am not yet > aspirating so > > > I am delaying the surgery until this is no longer the case. I am > > > having my GI monitor and my GP monitor my nutrition levels. I have > > > even recently gained weight! > > > > > > Unfortunately I have moved back to Dallas and away from UCSF. I > have > > > some time to research before the surgery. I know that this surgery > > > has a bad fatality rate if done by inexperienced surgeons. I am > > > looking for some good srugeons and to talk to anyone who has had > this > > > done. What is your quality of life? Can you do fluids at least? > > > > > > let me know..... > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi. I've only been diagnosed with A for a month and all this Esophagectomy talk has got me terrified. I'm just curious, but is it inevitable to eventually need a Esophagectomy if you have A? Or is it just extremely severe cases that may wind up in that direction? How are able to still eat? Where does the feeding tube go? in NYC > > Hi , > > I had an Esophagectomy 10 years ago and I am doing great, eat > anything I > > want and gained back all the weight I lost and am maintaining it as > a matter > > of fact I am now trying to lose a few pounds. My history can be > found by > > inputting the message #1413 > > > > Esophectomy > > > > > > > I just joined this group this AM. It has been wonderful reading > all > > > of your postings and finding people experiencing the same > > > frustrations and horrors as myself. > > > > > > I think the biggest frustration over the past 10 years has been > > > having to explain the condition to so many people. Their eyes just > > > glaze over. I have even had people tell me that it is just " my > > > nerves " and that if I slowed down and calmed down I would be > fine. I > > > even had an ER doctor and nurse tell me that! When I went for > surgery > > > (lap myotomy & wrap) in January 1999 this quickly stopped as I > then > > > had proof that the condition was real. > > > > > > Anyways I have a question for the group. Has anyone had a > esophectomy > > > and feeding tube? > > > > > > I had a myotomy in 1999 and did really well until 2002 when I > started > > > having problems again. I had a motility study done at UCSF with > Dr. > > > Patti's group and the results were ..... advancement of the > Achalasia > > > to the point that I have NO peristalysis and several abnormalties > in > > > the esophagus, including a large diviticular above the diagphram. > His > > > view of a next course of action is the removal of the esophagus > and a > > > feeding tube. > > > > > > Now miracuously I am getting enough nutrition (amazing what a > diet of > > > chocolate, ice cream & cookies can do) and I am not yet > aspirating so > > > I am delaying the surgery until this is no longer the case. I am > > > having my GI monitor and my GP monitor my nutrition levels. I have > > > even recently gained weight! > > > > > > Unfortunately I have moved back to Dallas and away from UCSF. I > have > > > some time to research before the surgery. I know that this surgery > > > has a bad fatality rate if done by inexperienced surgeons. I am > > > looking for some good srugeons and to talk to anyone who has had > this > > > done. What is your quality of life? Can you do fluids at least? > > > > > > let me know..... > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 , the vast majority of Achalasia patients do NOT need to have their esophagus removed, it's one of those rare "worst case" scenarios. Depending on the individual situation, the procedure that I think is probably the "preferred" method is to replace the esophagus with a length of intestine -- then you just let gravity (and water) get the food from point A to point B. This is really not so much different than people who don't have any peristalsis and who haven't had their esophagus removed -- the esophagus is just like a plumbing pipe, and you need something to "push" the food down the pipe until it gets to the stomach. I've also heard of the procedure done where the stomach is moved upwards a bit and basically attached to the throat, without having an esophagus at all. But like I said, it's VERY rare to need that particular surgery at all. Please don't let it worry you unnecessarily. Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 , Sorry to have scared you. I have had Achalasia for about 24 years (although only diagnosed for 10) and I have gone through the whole series of dilations, and myotomy. I have had so many barium swallows and esophagrams that I probably glow in the dark!!! (Is it me or do Mc's Strawberry shakes taste like barium to anyone else ?) My doctor told me that esopagectomy is not the ultimate result for all people. There is a lot they don't know about achalasia. They don't know the cause and they don't know how fast it will progress in some people. He told me that in some people it never gets worse, in some it takes 20 years and in others it can happen quickly. I had 3 years of almost normal life eating after my myotomy (although needed gallons of water, had night time spasms etc) In comparison to my pre- surgery days it was heaven, I thought it would continue. It came as a total shock to me that my Achalasia had progressed to have a completly dead esophagus. He told me it was fairly rare to go that fast. After a good cry at the back of UCSF it was time to move forward. I don't know how I eat other than gravity and lots and lots of water and hot tea. I don't eat most things ... my diet is pretty much chocolate, crisp cookies, potato chips (only Pringles --for some reason), yogurt, milk, smoothies, soup, ice cream. I love going out to " lunch " with my friends and ordering a chocolate shake while they have dry chicken and salad (ha ha). If you put enough calories in it you stay alive and keep the weight.I chew Flintstones with iron (my GP's suggestion to keep anemia in check). My doctors have told me they can't explain why I can get anything down. Maybe I am just stubborn. It takes a lot of strength to deal with this and a sense of humor. There are times when I want to stand up in a restaurant and yell at the top of my lungs " DO YOU PEOPLE HAVE ANY IDEA HOW LUCKY YOU ARE TO SIT THERE AND EAT !!! " But I have learned everybody has something going on in their lives and this is mine to bear. I am so glad to have found this website I am so excited to read all of your postings.... I am not alone. good luck .... ...... in Dallas P.S. where does the feeding tube go? I hope not up the nose etc. my motility study just about killed me. > > > Hi , > > > I had an Esophagectomy 10 years ago and I am doing great, eat > > anything I > > > want and gained back all the weight I lost and am maintaining it > as > > a matter > > > of fact I am now trying to lose a few pounds. My history can be > > found by > > > inputting the message #1413 > > > > > > Esophectomy > > > > > > > > > > I just joined this group this AM. It has been wonderful reading > > all > > > > of your postings and finding people experiencing the same > > > > frustrations and horrors as myself. > > > > > > > > I think the biggest frustration over the past 10 years has been > > > > having to explain the condition to so many people. Their eyes > just > > > > glaze over. I have even had people tell me that it is just " my > > > > nerves " and that if I slowed down and calmed down I would be > > fine. I > > > > even had an ER doctor and nurse tell me that! When I went for > > surgery > > > > (lap myotomy & wrap) in January 1999 this quickly stopped as I > > then > > > > had proof that the condition was real. > > > > > > > > Anyways I have a question for the group. Has anyone had a > > esophectomy > > > > and feeding tube? > > > > > > > > I had a myotomy in 1999 and did really well until 2002 when I > > started > > > > having problems again. I had a motility study done at UCSF with > > Dr. > > > > Patti's group and the results were ..... advancement of the > > Achalasia > > > > to the point that I have NO peristalysis and several > abnormalties > > in > > > > the esophagus, including a large diviticular above the > diagphram. > > His > > > > view of a next course of action is the removal of the esophagus > > and a > > > > feeding tube. > > > > > > > > Now miracuously I am getting enough nutrition (amazing what a > > diet of > > > > chocolate, ice cream & cookies can do) and I am not yet > > aspirating so > > > > I am delaying the surgery until this is no longer the case. I am > > > > having my GI monitor and my GP monitor my nutrition levels. I > have > > > > even recently gained weight! > > > > > > > > Unfortunately I have moved back to Dallas and away from UCSF. I > > have > > > > some time to research before the surgery. I know that this > surgery > > > > has a bad fatality rate if done by inexperienced surgeons. I am > > > > looking for some good srugeons and to talk to anyone who has > had > > this > > > > done. What is your quality of life? Can you do fluids at least? > > > > > > > > let me know..... > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi I can't say that it is inevitable, I do think the severity of each persons symptoms, coupled with the quality of life you have at any given time eventually might lead you to make this kind of decision. I had lived with this disease for 45 years before making the decision to have my esophagus removed. I think each individual has to decide for themselves whether or not they have reached such a point. I feel sure that there are people who will never have this surgery because they feel they can live without it. I reached the point 10 years ago where my symptoms were so severe and my quality of life had deteriorated to the point where I had to take this drastic step. I eat normally and there is nothing that I can't eat. I never had a feeding tube. It sounds like you are in the early; stages I would not worry about surgery right now. This is a treatable disease, discuss the options with your Dr. as you live with this disease. Esophectomy > > > > > > > > > > I just joined this group this AM. It has been wonderful reading > > all > > > > of your postings and finding people experiencing the same > > > > frustrations and horrors as myself. > > > > > > > > I think the biggest frustration over the past 10 years has been > > > > having to explain the condition to so many people. Their eyes > just > > > > glaze over. I have even had people tell me that it is just " my > > > > nerves " and that if I slowed down and calmed down I would be > > fine. I > > > > even had an ER doctor and nurse tell me that! When I went for > > surgery > > > > (lap myotomy & wrap) in January 1999 this quickly stopped as I > > then > > > > had proof that the condition was real. > > > > > > > > Anyways I have a question for the group. Has anyone had a > > esophectomy > > > > and feeding tube? > > > > > > > > I had a myotomy in 1999 and did really well until 2002 when I > > started > > > > having problems again. I had a motility study done at UCSF with > > Dr. > > > > Patti's group and the results were ..... advancement of the > > Achalasia > > > > to the point that I have NO peristalysis and several > abnormalties > > in > > > > the esophagus, including a large diviticular above the > diagphram. > > His > > > > view of a next course of action is the removal of the esophagus > > and a > > > > feeding tube. > > > > > > > > Now miracuously I am getting enough nutrition (amazing what a > > diet of > > > > chocolate, ice cream & cookies can do) and I am not yet > > aspirating so > > > > I am delaying the surgery until this is no longer the case. I am > > > > having my GI monitor and my GP monitor my nutrition levels. I > have > > > > even recently gained weight! > > > > > > > > Unfortunately I have moved back to Dallas and away from UCSF. I > > have > > > > some time to research before the surgery. I know that this > surgery > > > > has a bad fatality rate if done by inexperienced surgeons. I am > > > > looking for some good srugeons and to talk to anyone who has > had > > this > > > > done. What is your quality of life? Can you do fluids at least? > > > > > > > > let me know..... > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 , That is great ! Which surgery did you have? The one where a tube is fashioned from a piece of intestine? or the stomach pull up? Where did you have your surgery? I assume it was NOT laproscopic? You are giving me a lot of hope when I have had none since my last diagnosis... > > > Hi , > > > I had an Esophagectomy 10 years ago and I am doing great, eat > > anything I > > > want and gained back all the weight I lost and am maintaining it as > > a matter > > > of fact I am now trying to lose a few pounds. My history can be > > found by > > > inputting the message #1413 > > > > > > Esophectomy > > > > > > > > > > I just joined this group this AM. It has been wonderful reading > > all > > > > of your postings and finding people experiencing the same > > > > frustrations and horrors as myself. > > > > > > > > I think the biggest frustration over the past 10 years has been > > > > having to explain the condition to so many people. Their eyes just > > > > glaze over. I have even had people tell me that it is just " my > > > > nerves " and that if I slowed down and calmed down I would be > > fine. I > > > > even had an ER doctor and nurse tell me that! When I went for > > surgery > > > > (lap myotomy & wrap) in January 1999 this quickly stopped as I > > then > > > > had proof that the condition was real. > > > > > > > > Anyways I have a question for the group. Has anyone had a > > esophectomy > > > > and feeding tube? > > > > > > > > I had a myotomy in 1999 and did really well until 2002 when I > > started > > > > having problems again. I had a motility study done at UCSF with > > Dr. > > > > Patti's group and the results were ..... advancement of the > > Achalasia > > > > to the point that I have NO peristalysis and several abnormalties > > in > > > > the esophagus, including a large diviticular above the diagphram. > > His > > > > view of a next course of action is the removal of the esophagus > > and a > > > > feeding tube. > > > > > > > > Now miracuously I am getting enough nutrition (amazing what a > > diet of > > > > chocolate, ice cream & cookies can do) and I am not yet > > aspirating so > > > > I am delaying the surgery until this is no longer the case. I am > > > > having my GI monitor and my GP monitor my nutrition levels. I have > > > > even recently gained weight! > > > > > > > > Unfortunately I have moved back to Dallas and away from UCSF. I > > have > > > > some time to research before the surgery. I know that this surgery > > > > has a bad fatality rate if done by inexperienced surgeons. I am > > > > looking for some good srugeons and to talk to anyone who has had > > this > > > > done. What is your quality of life? Can you do fluids at least? > > > > > > > > let me know..... > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Hello and welcome to this wonderful group. These people have helped me to no end, and I am sure you will get all the help and support you need as well. I can relate to you in all aspects.I too was told it was all in my head at one point, I have been dealing with this since I was 13 and now am 36. You asked about the operation esophagectomy. Well I am heading to Vancouver in a few days to go through that very thing.Feeding tube and all. Talking to and reading his story helped me alot. He can help you too.I will let you know all about it when I get home. I will be away from home for about 3 weeks or so after the surgery. >From: "kbert_98" >Reply-achalasia >achalasia >Subject: Esophectomy >Date: Mon, 27 Oct 2003 16:36:32 -0000 > >I just joined this group this AM. It has been wonderful reading all >of your postings and finding people experiencing the same >frustrations and horrors as myself. > >I think the biggest frustration over the past 10 years has been >having to explain the condition to so many people. Their eyes just >glaze over. I have even had people tell me that it is just "my >nerves" and that if I slowed down and calmed down I would be fine. I >even had an ER doctor and nurse tell me that! When I went for surgery >(lap myotomy & wrap) in January 1999 this quickly stopped as I then >had proof that the condition was real. > >Anyways I have a question for the group. Has anyone had a esophectomy >and feeding tube? > >I had a myotomy in 1999 and did really well until 2002 when I started >having problems again. I had a motility study done at UCSF with Dr. >Patti's group and the results were ..... advancement of the Achalasia >to the point that I have NO peristalysis and several abnormalties in >the esophagus, including a large diviticular above the diagphram. His >view of a next course of action is the removal of the esophagus and a >feeding tube. > >Now miracuously I am getting enough nutrition (amazing what a diet of >chocolate, ice cream & cookies can do) and I am not yet aspirating so >I am delaying the surgery until this is no longer the case. I am >having my GI monitor and my GP monitor my nutrition levels. I have >even recently gained weight! > >Unfortunately I have moved back to Dallas and away from UCSF. I have >some time to research before the surgery. I know that this surgery >has a bad fatality rate if done by inexperienced surgeons. I am >looking for some good srugeons and to talk to anyone who has had this >done. What is your quality of life? Can you do fluids at least? > >let me know..... > MSN 8 with e-mail virus protection service: 2 months FREE* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 > ... all the best. Thank you for the note at a time when your mind must be racing. When is your surgery? My thoughts and prayers are will you. in Texas Quote Link to comment Share on other sites More sharing options...
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