Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 -Well said . -- In achalasia , " RICHARD " <cynmark24@...> wrote: > > For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any " work " done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help. > > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the " real " world. > > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus. > > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus " Breakfast with " is the subject of this post. (: I > was not " bored to tears " reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!). > > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said " Why me… " and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this " online world " asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I " google " " mega-esophagus " or " megaesophagus " I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help . > > By helping others we help ourselves. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Thank you so much for taking your time and sharing your compassion. Think I'm in lust w/ you. Although , always quiet, but there when you need him has a special spot in my heart too. Sandy in So Cal.... come visit, hot this weekend.>> For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any "work" done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help.> > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the "real" world.> > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus.> > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus "Breakfast with " is the subject of this post. (: I > was not "bored to tears" reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!).> > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said "Why me…" and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this "online world" asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I "google" "mega-esophagus" or "megaesophagus" I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help .> > By helping others we help ourselves.> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Amazing, . Last night as we tried to be supportive ot , I had wished for someone with more knowledge to help. A few of us are going to be seen soon, and as you said, we can help her by gleaning what we can from our Drs on her condition. May I suggest that at the next chat that the " experts " on this board (, , Notan, Debbi, Carolyn and all the others) to meet with . That way she will get more than emotional support. Jo > > For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any " work " done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help. > > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the " real " world. > > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus. > > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus " Breakfast with " is the subject of this post. (: I > was not " bored to tears " reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!). > > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said " Why me… " and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this " online world " asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I " google " " mega-esophagus " or " megaesophagus " I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help . > > By helping others we help ourselves. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 You guys are awesome. You have made me cry tonight with your encouraging words and support. I cannot get over it. Thank you EVERYONE. And, not to be a downer when I am feeling so comforted and somewhat optimistic thanks to you all. But when you are speaking to your doctors, don’t just ask the questions for my sake. I don’t know how to say it other than just to say it, but you could all be in my shoes at some point in the future. The fact remains that this is a progressive disease, and I hope none of you have to be where I am at. However, learn all you can now, and take control of your treatment now, so that hopefully you can avoid all this. The best thing we can do is educate ourselves and stay on top of our options and our treatment. That being said, I’d love to hear what they say when you do ask the questions. in NY From: achalasia [mailto:achalasia ] On Behalf Of Jo Blauer Sent: Friday, February 10, 2006 9:14 PM achalasia Subject: Re: BREAKFAST WITH TRACY Amazing, . Last night as we tried to be supportive ot , I had wished for someone with more knowledge to help. A few of us are going to be seen soon, and as you said, we can help her by gleaning what we can from our Drs on her condition. May I suggest that at the next chat that the " experts " on this board (, , Notan, Debbi, Carolyn and all the others) to meet with . That way she will get more than emotional support. Jo > > For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any " work " done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help. > > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the " real " world. > > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus. > > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus " Breakfast with " is the subject of this post. (: I > was not " bored to tears " reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!). > > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said " Why me… " and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this " online world " asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I " google " " mega-esophagus " or " megaesophagus " I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help . > > By helping others we help ourselves. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 , I am deeply moved by your post and flattered with the time and energy you spent not only reading my post, but in writing this exceptional post back to everyone about my situation and the major issues we all face. That is, trying to find the right doctor who has the right treatment for each of us AND getting the moral support we all so desperately need from each other in order to make these life-altering decisions. I have no idea what your line of work is, but you should seriously consider motivational speaking. in Lancaster, PA already has Dr. Haluck expecting my call……AMAZING. I truly don’t know what to say, besides THANK YOU, and maybe someday we can really have breakfast together! I hope to continue talking with you. Your kindness and support has been incredible, and I can only hope to help others through my situation the way you have helped me with even this one post. in NY (with tears in her eyes) From: achalasia [mailto:achalasia ] On Behalf Of RICHARD Sent: Friday, February 10, 2006 4:50 PM achalasia Subject: BREAKFAST WITH TRACY For those of you new to this board, I was diagnosed with Achalasis in 1982. After numerous stretchings and dilitations had the open Heller Myotomy 12/17/91 Despite my doctor calling my operation his first failure, I have not had any " work " done on me since. While many come to this board relatively new to this disease looking for help, I came here looking to help. I have met many courageous people here, but in all likelihood will never meet any in person. However, in the world of 2006, you often get to know people online better than people you see everyday in the " real " world. One of the people I have sought to know better is from upstate NY. I'm from downstate, NY. She is 32 years old. To distinguish people you see every day, you might say a person is the one with the blonde hair, or the glasses, or overweight. On this board, is the one with the mega-esophagus. has had this disease over half her life, so at age 32 it has been for at least 16 years. 16 years ago, there was no internet as we know it to research and communicate amongst ourselves. 16 years ago laparoscopic surgery was still in its infancy, having been performed for the first time in 1987. 16 years ago, most doctors had never heard of achalasia, and the ones that did rarely or never saw a patient with this disorder. 16 years ago found herself alone with this disease after first being accused of being bulemic! I have been trying to coordinate with to talk with her in the chat room. Wednesday night I failed again, but in response to my attempt she sent me a rather lengthy email telling me about herself and this disease. I read it over breakfastthe following morning, thus " Breakfast with " is the subject of this post. (: I was not " bored to tears " reading it. In fact, you left me wanting to read more. I guess I took that long to finish eating breakfast!). I am not writing to recount or summarize what she has written. Its all on this board starting back in Sept 2005. My point in writing is to pay tribute to a person who through no fault of her own finds herself seeking medical help where they may not be any available. Yes, she can have an esophagectomy (the removal of the esophagus), but if it were that simple, it might have been performed already. Heller myotomy is a piece of cake compared to an esophagectomy. Perhaps she will find another alternative. This board has provided all kinds of help and support to hundreds, if not thousands of people with achalasia who would otherwise have been alone. When I was first diagnosed, it was like I had arrived from another planet, with biological attributes not common to any other life form. Likewise with . With her own resources and the help of others on this board she has been seeking the opinions of other physicians and surgeons. has neither complained, nor said " Why me… " and is not living in the past regretting what was. She is going forward with her life, while being the mother of two pre-school children, working full time, and studying nursing. The lessons to be learned from are that we must be in control of our own lives. We have to be our own advocate. We cannot and must not let a doctor get away with giving incomplete, unsatisfactory answers to questions that are vitally important to us. We are human beings with a disease, not a disease that happens to be in a human being. The resources provided by this website are incredible and we owe a debt of gratitude to those responsible for it. There are links to numerous useful sights, the databases with vital information at our fingertips, but most importantly the message boards here, with over 31,000 posts representing people looking for help and others giving of themselves. Asking for help is not enough. One must act upon it too. The more I read, the more I become aware of so many people here who deserve so much credit for helping others to make an informed decision. Many of us have entered this " online world " asking about the Heller Myotomy, and once having it done, have generously shared their experiences with the rest of us. We all know that it is the surgeon's job to cut, and its sometimes difficult to escape the feeling as to where their motivation lies. The help and encouragement selflessly given here is heartwarming, and has enabled Achalasians to make confident decisions as to what course of action to take. The networking between patients and surgeons have created a strong sense of community that has directed many of us to follow the course of action that has been best for ourselves. When I " google " " mega-esophagus " or " megaesophagus " I find many more references to dogs with that condition than people. No cures for the canine either. While I don't know exactly where is in her journey to decide a course of action, I believe that in making doctors more aware of this disease, and her condition in particular, (and others who have it), it may ultimately result in more research being done and other, more desirable alternatives. I would suggest to everyone reading this message that the next time you speak with your GI doctor or surgeon, you ask the question what they know about the mega-esophagus conditon, and if there is any research or treatments they know about which might improve it. That could add a thousand voices to help . By helping others we help ourselves. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 To both and RIchard, and all of you too. It was so touching to read your posts and remember what I went through 30 years ago and like most of you, be diagnosed with acid reflux. I went through Procardia, Pepsid, - I can't even remember all of the prescribed medications I tried, and of course, they checked me as the "knew" I was having heart attacks. After all of this time, with NO help until about seven years ago when I was truly diagnosed with Achalasia after a major blockage, - I now have no pain, and no surgery. I know those of you that know me (Hi Sandy) know my story, but your posts really touched me. To spend so many years with NO ONE knowing or understanding what is going on, and suffering the pain,etc. as you all know, - we now have each other. I don't write often, but I read everything every day, and live it all with all of you. THank you for beinig there, not only for me, but all of the others who join us every day. Thank you again. Marilyn in Beverly Hills RE: BREAKFAST WITH TRACY , I am deeply moved by your post and flattered with the time and energy you spent not only reading my post, but in writing this exceptional post back to everyone about my situation and the major issues we all face. That is, trying to find the right doctor who has the right treatment for each of us AND getting the moral support we all so desperately need from each other in order to make these life-altering decisions. I have no idea what your line of work is, but you should seriously consider motivational speaking. in Lancaster, PA already has Dr. Haluck expecting my call??AMAZING. I truly don?t know what to say, besides THANK YOU, and maybe someday we can really have breakfast together! I hope to continue talking with you. Your kindness and support has been incredible, and I can only hope to help others through my situation the way you have helped me with even this one post. in NY (with tears in her eyes) From: achalasia [mailto:achalasia ] On Behalf Of RICHARDSent: Friday, February 10, 2006 4:50 PMachalasia Subject: BREAKFAST WITH TRACY For those of you new to this board, I was diagnosed with Achalasis in 1982. After numerous stretchings and dilitations had the open Heller Myotomy 12/17/91 Despite my doctor calling my operation his first failure, I have not had any "work" done on me since. While many come to this board relatively new to this disease looking for help, I came here looking to help.I have met many courageous people here, but in all likelihood will never meet any in person. However, in the world of 2006, you often get to know people online better than people you see everyday in the "real" world.One of the people I have sought to know better is from upstate NY. I'm from downstate, NY. She is 32 years old. To distinguish people you see every day, you might say a person is the one with the blonde hair, or the glasses, or overweight. On this board, is the one with the mega-esophagus. has had this disease over half her life, so at age 32 it has been for at least 16 years. 16 years ago, there was no internet as we know it to research and communicate amongst ourselves. 16 years ago laparoscopic surgery was still in its infancy, having been performed for the first time in 1987. 16 years ago, most doctors had never heard of achalasia, and the ones that did rarely or never saw a patient with this disorder. 16 years ago found herself alone with this disease after first being accused of being bulemic! I have been trying to coordinate with to talk with her in the chat room. Wednesday night I failed again, but in response to my attempt she sent me a rather lengthy email telling me about herself and this disease. I read it over breakfastthe following morning, thus "Breakfast with " is the subject of this post. (: I was not "bored to tears" reading it. In fact, you left me wanting to read more. I guess I took that long to finish eating breakfast!).I am not writing to recount or summarize what she has written. Its all on this board starting back in Sept 2005. My point in writing is to pay tribute to a person who through no fault of her own finds herself seeking medical help where they may not be any available. Yes, she can have an esophagectomy (the removal of the esophagus), but if it were that simple, it might have been performed already. Heller myotomy is a piece of cake compared to an esophagectomy. Perhaps she will find another alternative. This board has provided all kinds of help and support to hundreds, if not thousands of people with achalasia who would otherwise have been alone. When I was first diagnosed, it was like I had arrived from another planet, with biological attributes not common to any other life form. Likewise with . With her own resources and the help of others on this board she has been seeking the opinions of other physicians and surgeons. has neither complained, nor said "Why me?" and is not living in the past regretting what was. She is going forward with her life, while being the mother of two pre-school children, working full time, and studying nursing. The lessons to be learned from are that we must be in control of our own lives. We have to be our own advocate. We cannot and must not let a doctor get away with giving incomplete, unsatisfactory answers to questions that are vitally important to us. We are human beings with a disease, not a disease that happens to be in a human being. The resources provided by this website are incredible and we owe a debt of gratitude to those responsible for it. There are links to numerous useful sights, the databases with vital information at our fingertips, but most importantly the message boards here, with over 31,000 posts representing people looking for help and others giving of themselves. Asking for help is not enough. One must act upon it too. The more I read, the more I become aware of so many people here who deserve so much credit for helping others to make an informed decision. Many of us have entered this "online world" asking about the Heller Myotomy, and once having it done, have generously shared their experiences with the rest of us. We all know that it is the surgeon's job to cut, and its sometimes difficult to escape the feeling as to where their motivation lies. The help and encouragement selflessly given here is heartwarming, and has enabled Achalasians to make confident decisions as to what course of action to take. The networking between patients and surgeons have created a strong sense of community that has directed many of us to follow the course of action that has been best for ourselves. When I "google" "mega-esophagus" or "megaesophagus" I find many more references to dogs with that condition than people. No cures for the canine either. While I don't know exactly where is in her journey to decide a course of action, I believe that in making doctors more aware of this disease, and her condition in particular, (and others who have it), it may ultimately result in more research being done and other, more desirable alternatives. I would suggest to everyone reading this message that the next time you speak with your GI doctor or surgeon, you ask the question what they know about the mega-esophagus conditon, and if there is any research or treatments they know about which might improve it. That could add a thousand voices to help .By helping others we help ourselves. 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Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Dear Marilyn, I can see that you would prefer not to post regularly, but wondered if you would answer just this one question for me? If you now have no pain and have not had any surgery, what has happened to improve things for you? I respect your privacy if you prefer not to reply. Best Wishes from Ann in England x>> To both and RIchard, and all of you too. It was so touching to read your posts and remember what I went through 30 years ago and like most of you, be diagnosed with acid reflux. I went through Procardia, Pepsid, - I can't even remember all of the prescribed medications I tried, and of course, they checked me as the "knew" I was having heart attacks. After all of this time, with NO help until about seven years ago when I was truly diagnosed with Achalasia after a major blockage, - I now have no pain, and no surgery. I know those of you that know me (Hi Sandy) know my story, but your posts really touched me. To spend so many years with NO ONE knowing or understanding what is going on, and suffering the pain,etc. as you all know, - we now have each other. I don't write often, but I read everything every day, and live it all with all of you. THank you for beinig there, not only for me, but all of the others who join us every day. Thank you again. Marilyn in Beverly Hills > > BREAKFAST WITH TRACY> > For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any "work" done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help.> > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the "real" world.> > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus.> > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus "Breakfast with " is the subject of this post. (: I > was not "bored to tears" reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!).> > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said "Why me?" and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this "online world" asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I "google" "mega-esophagus" or "megaesophagus" I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help .> > By helping others we help ourselves.> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Dear Ann, I suffered through the many years of pain, regurgitation, no sleep, always running to the bathroom in a restaurant over and over again. The weird thing is that I have for the past about five-six years been drinking a sip of carbonation before every bite of food. The doc suggested I do that "until" my surgery. As time progressed, the pain subsided, and I was able to "manage" the problem. I learned what NOT to eat, and mainly to not eat fast and chew my food thoroughly. I learned that if I felt a blockage coming on, I would raise both hands high over my head, and most times the food would go down. I have suggested carbonation to many, but stopped leaving posts, as Sandy can tell you, when I was chastised for recommending it. The trick was a sip of carbonation, which triggers the esphagus to open, thence the food would go down. I suffered terribly the first ten years. The chest pains (heart attacks???) the nerve spasms in my throat and roof of my mouth, etc. etc. Now, after 30 years, I can feel the cold and hot go down, and do not swallow until I know things are moving. I do know I should have another endoscopy, and called my personal physician re; that a few weeks ago. I recently aspirated after an epidural and spend weeks in bed with pneumonia. I have now recovered, and will proceed soon to seed what is going on. Perhaps an upper GI would help me know. The last time I had one, I frightened the doctor so much he came screaming in and said, "don't swallow any more, it's not going down". HaHa, I knew it, but even he didn't realize what Achalasia does. I used to post more often, but stopped when I realized that we are all so different, and "what is good for the goose, is not always good for the gander". Good luck to you. When I know what has happened with my runaway E, I will let you know. Regards, Marilyn in Beverly HIlls BREAKFAST WITH TRACY> > For those of you new to this board, I was diagnosed with Achalasis in > 1982. After numerous stretchings and dilitations had the open Heller > Myotomy 12/17/91 Despite my doctor calling my operation his first > failure, I have not had any "work" done on me since. While many come > to this board relatively new to this disease looking for help, I came > here looking to help.> > > I have met many courageous people here, but in all likelihood will > never meet any in person. However, in the world of 2006, you often > get to know people online better than people you see everyday in > the "real" world.> > > One of the people I have sought to know better is from upstate > NY. I'm from downstate, NY. She is 32 years old. To distinguish > people you see every day, you might say a person is the one with the > blonde hair, or the glasses, or overweight. On this board, is > the one with the mega-esophagus.> > > has had this disease over half her life, so at age 32 it has > been for at least 16 years. 16 years ago, there was no internet as > we know it to research and communicate amongst ourselves. 16 years > ago laparoscopic surgery was still in its infancy, having been > performed for the first time in 1987. 16 years ago, most doctors > had never heard of achalasia, and the ones that did rarely or never > saw a patient with this disorder. 16 years ago found herself > alone with this disease after first being accused of being bulemic! > > > I have been trying to coordinate with to talk with her in the > chat room. Wednesday night I failed again, but in response to my > attempt she sent me a rather lengthy email telling me about herself > and this disease. I read it over breakfastthe following morning, > thus "Breakfast with " is the subject of this post. (: I > was not "bored to tears" reading it. In fact, you left me wanting to > read more. I guess I took that long to finish eating breakfast!).> > > I am not writing to recount or summarize what she has written. Its > all on this board starting back in Sept 2005. My point in writing is > to pay tribute to a person who through no fault of her own finds > herself seeking medical help where they may not be any available. > Yes, she can have an esophagectomy (the removal of the esophagus), > but if it were that simple, it might have been performed already. > Heller myotomy is a piece of cake compared to an esophagectomy. > Perhaps she will find another alternative. > > > This board has provided all kinds of help and support to hundreds, if > not thousands of people with achalasia who would otherwise have been > alone. When I was first diagnosed, it was like I had arrived from > another planet, with biological attributes not common to any other > life form. Likewise with . With her own resources and the help > of others on this board she has been seeking the opinions of other > physicians and surgeons. > > > has neither complained, nor said "Why me?" and is not living in > the past regretting what was. She is going forward with her life, > while being the mother of two pre-school children, working full time, > and studying nursing. The lessons to be learned from are that > we must be in control of our own lives. We have to be our own > advocate. We cannot and must not let a doctor get away with giving > incomplete, unsatisfactory answers to questions that are vitally > important to us. We are human beings with a disease, not a disease > that happens to be in a human being. > > > The resources provided by this website are incredible and we owe a > debt of gratitude to those responsible for it. There are links to > numerous useful sights, the databases with vital information at our > fingertips, but most importantly the message boards here, with over > 31,000 posts representing people looking for help and others giving > of themselves. Asking for help is not enough. One must act upon it > too. > > > The more I read, the more I become aware of so many people here who > deserve so much credit for helping others to make an informed > decision. Many of us have entered this "online world" asking about > the Heller Myotomy, and once having it done, have generously shared > their experiences with the rest of us. We all know that it is the > surgeon's job to cut, and its sometimes difficult to escape the > feeling as to where their motivation lies. The help and > encouragement selflessly given here is heartwarming, and has enabled > Achalasians to make confident decisions as to what course of action > to take. The networking between patients and surgeons have created a > strong sense of community that has directed many of us to follow the > course of action that has been best for ourselves. > > When I "google" "mega-esophagus" or "megaesophagus" I find many more > references to dogs with that condition than people. No cures for the > canine either. While I don't know exactly where is in her > journey to decide a course of action, I believe that in making > doctors more aware of this disease, and her condition in particular, > (and others who have it), it may ultimately result in more research > being done and other, more desirable alternatives. I would suggest > to everyone reading this message that the next time you speak with > your GI doctor or surgeon, you ask the question what they know about > the mega-esophagus conditon, and if there is any research or > treatments they know about which might improve it. That could add a > thousand voices to help .> > By helping others we help ourselves.> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Marilyn; So great to hear from you again and glad to know you have recovered. Get in and see that GI and let us know how things look, Peggy Cordero > > > > To both and RIchard, and all of you too. It was so touching to read your posts and remember what I went through 30 years ago and like most of you, be diagnosed with acid reflux. I went through Procardia, Pepsid, - I can't even remember all of the prescribed medications I tried, and of course, they checked me as the " knew " I was having heart attacks. After all of this time, with NO help until about seven years ago when I was truly diagnosed with Achalasia after a major blockage, - I now have no pain, and no surgery. I know those of you that know me (Hi Sandy) know my story, but your posts really touched me. To spend so many years with NO ONE knowing or understanding what is going on, and suffering the pain,etc. as you all know, - we now have each other. I don't write often, but I read everything every day, and live it all with all of you. THank you for beinig there, not only for me, but all of the others who join us every day. Thank you again. Marilyn in Beverly Hills > > > > BREAKFAST WITH TRACY > > > > For those of you new to this board, I was diagnosed with Achalasis in > > 1982. After numerous stretchings and dilitations had the open Heller > > Myotomy 12/17/91 Despite my doctor calling my operation his first > > failure, I have not had any " work " done on me since. While many come > > to this board relatively new to this disease looking for help, I came > > here looking to help. > > > > > > I have met many courageous people here, but in all likelihood will > > never meet any in person. However, in the world of 2006, you often > > get to know people online better than people you see everyday in > > the " real " world. > > > > > > One of the people I have sought to know better is from upstate > > NY. I'm from downstate, NY. She is 32 years old. To distinguish > > people you see every day, you might say a person is the one with the > > blonde hair, or the glasses, or overweight. On this board, is > > the one with the mega-esophagus. > > > > > > has had this disease over half her life, so at age 32 it has > > been for at least 16 years. 16 years ago, there was no internet as > > we know it to research and communicate amongst ourselves. 16 years > > ago laparoscopic surgery was still in its infancy, having been > > performed for the first time in 1987. 16 years ago, most doctors > > had never heard of achalasia, and the ones that did rarely or never > > saw a patient with this disorder. 16 years ago found herself > > alone with this disease after first being accused of being bulemic! > > > > > > I have been trying to coordinate with to talk with her in the > > chat room. Wednesday night I failed again, but in response to my > > attempt she sent me a rather lengthy email telling me about herself > > and this disease. I read it over breakfastthe following morning, > > thus " Breakfast with " is the subject of this post. (: I > > was not " bored to tears " reading it. In fact, you left me wanting to > > read more. I guess I took that long to finish eating breakfast!). > > > > > > I am not writing to recount or summarize what she has written. Its > > all on this board starting back in Sept 2005. My point in writing is > > to pay tribute to a person who through no fault of her own finds > > herself seeking medical help where they may not be any available. > > Yes, she can have an esophagectomy (the removal of the esophagus), > > but if it were that simple, it might have been performed already. > > Heller myotomy is a piece of cake compared to an esophagectomy. > > Perhaps she will find another alternative. > > > > > > This board has provided all kinds of help and support to hundreds, if > > not thousands of people with achalasia who would otherwise have been > > alone. When I was first diagnosed, it was like I had arrived from > > another planet, with biological attributes not common to any other > > life form. Likewise with . With her own resources and the help > > of others on this board she has been seeking the opinions of other > > physicians and surgeons. > > > > > > has neither complained, nor said " Why me? " and is not living in > > the past regretting what was. She is going forward with her life, > > while being the mother of two pre-school children, working full time, > > and studying nursing. The lessons to be learned from are that > > we must be in control of our own lives. We have to be our own > > advocate. We cannot and must not let a doctor get away with giving > > incomplete, unsatisfactory answers to questions that are vitally > > important to us. We are human beings with a disease, not a disease > > that happens to be in a human being. > > > > > > The resources provided by this website are incredible and we owe a > > debt of gratitude to those responsible for it. There are links to > > numerous useful sights, the databases with vital information at our > > fingertips, but most importantly the message boards here, with over > > 31,000 posts representing people looking for help and others giving > > of themselves. Asking for help is not enough. One must act upon it > > too. > > > > > > The more I read, the more I become aware of so many people here who > > deserve so much credit for helping others to make an informed > > decision. Many of us have entered this " online world " asking about > > the Heller Myotomy, and once having it done, have generously shared > > their experiences with the rest of us. We all know that it is the > > surgeon's job to cut, and its sometimes difficult to escape the > > feeling as to where their motivation lies. The help and > > encouragement selflessly given here is heartwarming, and has enabled > > Achalasians to make confident decisions as to what course of action > > to take. The networking between patients and surgeons have created a > > strong sense of community that has directed many of us to follow the > > course of action that has been best for ourselves. > > > > When I " google " " mega-esophagus " or " megaesophagus " I find many more > > references to dogs with that condition than people. No cures for the > > canine either. While I don't know exactly where is in her > > journey to decide a course of action, I believe that in making > > doctors more aware of this disease, and her condition in particular, > > (and others who have it), it may ultimately result in more research > > being done and other, more desirable alternatives. I would suggest > > to everyone reading this message that the next time you speak with > > your GI doctor or surgeon, you ask the question what they know about > > the mega-esophagus conditon, and if there is any research or > > treatments they know about which might improve it. That could add a > > thousand voices to help . > > > > By helping others we help ourselves. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 -Good luck with the appointment Marilyn. Thanks for your story. We are all so different but so much the same. I couldn't have carbonated drinks before surgery it caused me so much greif but tried it since surgery and can tolerate small quantities. Some times I crave it. -- In achalasia , mwatsonre@... wrote: > > Dear Ann, I suffered through the many years of pain, regurgitation, no sleep, always running to the bathroom in a restaurant over and over again. The weird thing is that I have for the past about five- six years been drinking a sip of carbonation before every bite of food. The doc suggested I do that " until " my surgery. As time progressed, the pain subsided, and I was able to " manage " the problem. I learned what NOT to eat, and mainly to not eat fast and chew my food thoroughly. I learned that if I felt a blockage coming on, I would raise both hands high over my head, and most times the food would go down. I have suggested carbonation to many, but stopped leaving posts, as Sandy can tell you, when I was chastised for recommending it. The trick was a sip of carbonation, which triggers the esphagus to open, thence the food would go down. I suffered terribly the first ten years. The chest pains (heart attacks???) the nerve spasms in my throat and roof of my mouth, etc. etc. Now, after 30 years, I can feel the cold and hot go down, and do not swallow until I know things are moving. I do know I should have another endoscopy, and called my personal physician re; that a few weeks ago. I recently aspirated after an epidural and spend weeks in bed with pneumonia. I have now recovered, and will proceed soon to seed what is going on. Perhaps an upper GI would help me know. The last time I had one, I frightened the doctor so much he came screaming in and said, " don't swallow any more, it's not going down " . HaHa, I knew it, but even he didn't realize what Achalasia does. I used to post more often, but stopped when I realized that we are all so different, and " what is good for the goose, is not always good for the gander " . Good luck to you. When I know what has happened with my runaway E, I will let you know. Regards, Marilyn in Beverly HIlls > > > BREAKFAST WITH TRACY > > > > For those of you new to this board, I was diagnosed with Achalasis in > > 1982. After numerous stretchings and dilitations had the open Heller > > Myotomy 12/17/91 Despite my doctor calling my operation his first > > failure, I have not had any " work " done on me since. While many come > > to this board relatively new to this disease looking for help, I came > > here looking to help. > > > > > > I have met many courageous people here, but in all likelihood will > > never meet any in person. However, in the world of 2006, you often > > get to know people online better than people you see everyday in > > the " real " world. > > > > > > One of the people I have sought to know better is from upstate > > NY. I'm from downstate, NY. She is 32 years old. To distinguish > > people you see every day, you might say a person is the one with the > > blonde hair, or the glasses, or overweight. On this board, is > > the one with the mega-esophagus. > > > > > > has had this disease over half her life, so at age 32 it has > > been for at least 16 years. 16 years ago, there was no internet as > > we know it to research and communicate amongst ourselves. 16 years > > ago laparoscopic surgery was still in its infancy, having been > > performed for the first time in 1987. 16 years ago, most doctors > > had never heard of achalasia, and the ones that did rarely or never > > saw a patient with this disorder. 16 years ago found herself > > alone with this disease after first being accused of being bulemic! > > > > > > I have been trying to coordinate with to talk with her in the > > chat room. Wednesday night I failed again, but in response to my > > attempt she sent me a rather lengthy email telling me about herself > > and this disease. I read it over breakfastthe following morning, > > thus " Breakfast with " is the subject of this post. (: I > > was not " bored to tears " reading it. In fact, you left me wanting to > > read more. I guess I took that long to finish eating breakfast!). > > > > > > I am not writing to recount or summarize what she has written. Its > > all on this board starting back in Sept 2005. My point in writing is > > to pay tribute to a person who through no fault of her own finds > > herself seeking medical help where they may not be any available. > > Yes, she can have an esophagectomy (the removal of the esophagus), > > but if it were that simple, it might have been performed already. > > Heller myotomy is a piece of cake compared to an esophagectomy. > > Perhaps she will find another alternative. > > > > > > This board has provided all kinds of help and support to hundreds, if > > not thousands of people with achalasia who would otherwise have been > > alone. When I was first diagnosed, it was like I had arrived from > > another planet, with biological attributes not common to any other > > life form. Likewise with . With her own resources and the help > > of others on this board she has been seeking the opinions of other > > physicians and surgeons. > > > > > > has neither complained, nor said " Why me? " and is not living in > > the past regretting what was. She is going forward with her life, > > while being the mother of two pre-school children, working full time, > > and studying nursing. The lessons to be learned from are that > > we must be in control of our own lives. We have to be our own > > advocate. We cannot and must not let a doctor get away with giving > > incomplete, unsatisfactory answers to questions that are vitally > > important to us. We are human beings with a disease, not a disease > > that happens to be in a human being. > > > > > > The resources provided by this website are incredible and we owe a > > debt of gratitude to those responsible for it. There are links to > > numerous useful sights, the databases with vital information at our > > fingertips, but most importantly the message boards here, with over > > 31,000 posts representing people looking for help and others giving > > of themselves. Asking for help is not enough. One must act upon it > > too. > > > > > > The more I read, the more I become aware of so many people here who > > deserve so much credit for helping others to make an informed > > decision. Many of us have entered this " online world " asking about > > the Heller Myotomy, and once having it done, have generously shared > > their experiences with the rest of us. We all know that it is the > > surgeon's job to cut, and its sometimes difficult to escape the > > feeling as to where their motivation lies. The help and > > encouragement selflessly given here is heartwarming, and has enabled > > Achalasians to make confident decisions as to what course of action > > to take. The networking between patients and surgeons have created a > > strong sense of community that has directed many of us to follow the > > course of action that has been best for ourselves. > > > > When I " google " " mega-esophagus " or " megaesophagus " I find many more > > references to dogs with that condition than people. No cures for the > > canine either. While I don't know exactly where is in her > > journey to decide a course of action, I believe that in making > > doctors more aware of this disease, and her condition in particular, > > (and others who have it), it may ultimately result in more research > > being done and other, more desirable alternatives. I would suggest > > to everyone reading this message that the next time you speak with > > your GI doctor or surgeon, you ask the question what they know about > > the mega-esophagus conditon, and if there is any research or > > treatments they know about which might improve it. That could add a > > thousand voices to help . > > > > By helping others we help ourselves. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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