Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Hi, Mark! Sorry it's taken me a few days to respond to your message. Like you, I had the esophageal manometry to categorically diagnose the disease -- one of the worst experiences of my life. This was 5 years ago. The 2 balloon dilatations I had were only moderately successful, so when my condition deteriorated this fall, I had the laparascopic Heller myotomy. This, conversely, has been one of the best experiences of my life. It has given me my old eating habits and capabilities back - almost like erasing the past 5 years of my life. People ask why, then, did I wait so long to have the surgery and the simple answer is that the laparoscopic technique has not been available for that long. You say you are considering surgery to replace the esophagus, so I guess my question to you is -- why this particular procedure? Have you looked into the myotomy and been advised that you are not a candidate? When I asked my surgeon and gastroenterologist about my options should the myotomy fail, replacement was mentioned -- and I know it's also the treatment should cancer of the esophagus develop. Since they didn't think I needed to cross that bridge yet, I didn't get a lot of information. All I know is that they substitute a similar soft muscle for the esophagus - taking part of the intestine, I believe. If you haven't fully investigated the myotomy as a surgical option, I strongly advise it. In the hands of a skilled laparoscopic surgeon, as fortunately mine was, it was a remarkably easy procedure. The surgery, which takes under 2 hours, was performed on a Monday morning and I was home by Wednesday. I have 5 small scars in various places around my lower abdomen and because 4 of the 5 are about 1/2 inch, I had no post-op incision pain to speak of, and what little I did was easily handled by relatively mild pain killers. I began eating liquids and soft foods in the hospital, continued that for a couple of days at home, but within a week, I was eating fairly normally. Today, I am making up for lost time - 5 years without bread and bagels is a looooong time. I eat anything I want with no problem, although I haven't tried an actual sandwich yet -- it still seems like too much food to put down my throat all at once. I think old habits may be hard to break. I realize not everyone is a candidate for every procedure, so there are undoubtedly aspects of your case that may not make this possible. However, I can only repeat that I thank my lucky stars that I had great doctors who were able to give me my life back in a simple, relatively painless, and thoroughly caring way. They said I was an ideal candidate for myotomy, and I don't know exactly what characteristics of my esophagus they were referring to. By the way, I have vigorous achlasia which means I also get the heart-attack-like chest spasms -- these, too, have disappeared since the surgery. Well, I've taken up enough of your time, and I know I didn't answer your question. Hopefully you'll get some input from some other folks. In the meantime, do you know about the " All About Achalasia " website? If not, check it out at http://donn.lbl.gov/achalasia. Take care, and write whenever you'd like. Good luck! Carol Esophagus > Hello, > I am a 48 year old male who has had problems with Achalasia for about 10 > years. I have had Esohpageal Manometry and been stretched several times. I am > now considering a replacement of the Esophagus. I would like to hear from > somebody on info. of this surgery and would love to talk to somebody who has > had the surgery. > Thanks, > Mark~ > > ------------------------------------------------------------------------ > If you want to be single again, > Don't buy your Valentine a Gift by clicking here. > 1/1161/5/_/24373/_/950133418/ > > -- 20 megs of disk space in your group's Document Vault > -- docvault/achalasia/?m=1 > > > __________________________________________ NetZero - Defenders of the Free World Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Hello, Thanks for answering my letter. I guess I did not explain myself well. I have already had the Myotomy surgery in 1988 and it was great for about a year. I had the surgery at Cleveland Clinic and I feel that I have the best surgeon possible. He has advised me that my options now are to have the esophagus replaced. I was hoping to find somebody that has had this done so they could tell me about their experience with the surgery. Unlike you I did not have such an easy time with the surgery. It was the hardest thing I have ever done and had a two month recovery period before I could go back to work. The problem with me was that it got my old eating habits back and I did all the wrong things with eating and now I am back to having problems again. The strange thing is that I started having problems in 1990 eating fruits and nobody in the small town I come from had any idea what my problem was. All the doctors could do was give me pills and make the situation worse. Until I went to Cleveland Clinic in 1998 I had no idea what my problem was. After just a few questions and then some test they confirmed that I had Achalasia. It is hard to believe that all the doctors that I have seen over the years could not find the problem. I could ramble on about this all day so I think I have said enough. Thanks again for your reply. Mark~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Hello, Mark! I just had the myotomy done on Oct. 21st at UCLA Medical Center. I had a fantastic surgeon named Dr. McFadden. I had severe achalasia for over 2 years (meaning, chest pains, weight loss of over 30 lbs, regurgitating food and water), needing two botox injections, one ballon dilation and finally the myotomy. Before meeting with the surgeon I was lucky enough to meet Dr. Roth, who diagnosed what I had accurately. Up until then, the doctors I saw basically sent me to a shrink because they thought I was crazy and had an eating disorder. I am feeling much better now. The surgery was serious but UCLA Hospital was great. I had five small incisions on my upper abdomen and no more regurgitation. I do get chest pains when I don't eat right - meaning, I drank soda, smoked a cig, ate something spicy or heavy. The barium swallow after the surgery showed slow movement but it is such an improvement. I was so sick before - I literally thought this was going to kill me. I hope that you will contact me (directly if need be) if you need any other information and GOOD LUCK! Sincerely, Elena Wagner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Thank you! I'm (also) worried that it might come back and would like to see more information about replacement surgery. Keeping my fingers crossed for now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 I'm sorry I still haven't been able to find any information about your initial inquiry regarding esophageal replacement, but I'm still looking. I didn't realize in your earlier messages that you'd had such a hard time with the myotomy surgery. You are indeed fortunate to be a patient at the Cleveland Clinic, which has such an excellent reputation in this field; so if your surgeon recommends replacing the esophagus, I'm sure that is the right decision. I will try to keep researching this and pass along any information I uncover. As someone who has just undergone the myotomy and hopes fervently that it is successful and remains so for the rest of my life, I would like to ask you some more questions about your relapse and how you got to the stage you're in now. You mentioned getting your old eating habits back, which is what I've done, but you said you " did all the wrong things with eating " . Would you mind giving me some examples? If there's something I can avoid doing now so as to prevent further surgeries, I sure would like to know about it. In the meantime, good luck and take care. I hope you get some information and some relief soon. Carol Re: Esophagus > Hello, > Thanks for answering my letter. I guess I did not explain myself well. I have > already had the Myotomy surgery in 1988 and it was great for about a year. I > had the surgery at Cleveland Clinic and I feel that I have the best surgeon > possible. He has advised me that my options now are to have the esophagus > replaced. I was hoping to find somebody that has had this done so they could > tell me about their experience with the surgery. > Unlike you I did not have such an easy time with the surgery. It was the > hardest thing I have ever done and had a two month recovery period before I > could go back to work. > The problem with me was that it got my old eating habits back and I did all > the wrong things with eating and now I am back to having problems again. > The strange thing is that I started having problems in 1990 eating fruits and > nobody in the small town I come from had any idea what my problem was. All > the doctors could do was give me pills and make the situation worse. Until I > went to Cleveland Clinic in 1998 I had no idea what my problem was. After > just a few questions and then some test they confirmed that I had Achalasia. > It is hard to believe that all the doctors that I have seen over the years > could not find the problem. > I could ramble on about this all day so I think I have said enough. > Thanks again for your reply. > Mark~ > > ------------------------------------------------------------------------ > eLerts! > Save cash today! > 1/1413/5/_/24373/_/950305690/ > > -- Create a poll/survey for your group! > -- vote?listname=achalasia & m=1 > > > __________________________________________ NetZero - Defenders of the Free World Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Hello, again Elena! It's been a long time since we've chatted so I was happy to hear from you and very glad to know you had such a successful experience with your myotomy. You had yours right before I had mine (Nov. 15) and, like you, I had a fantastic experience. Small incisions, relatively little post-op pain, and back to eating like my old self again. In fact, in about another half hour I'll have my typical lunch of a bagel - I'm making up for 5 years of not being able to eat bread! My MD told me to avoid chocolate, caffeine, alcohol and peppermint and prescribed Zantac which I take just once a day (late afternoon before dinner). He was right about the peppermint - that produced an immediate burning sensation - but fortunately I've been able to eat chocolate without any side effects (I'm an avowed chocoholic!). I haven't tried alcohol and gave up caffeine, feeling I was better off all the way around without these 2 substances anyhow. I haven't had post-op barium swallow yet - they said I could wait 6 months since I was doing so well. I just hope things continue this way for both of us -- I'm concerned about the message from Mark about esophageal replacement after failed myotomy. If that happens, I don't know how I'll face it. Like you, I thought the achalasia was going to do me in! I'll cross that bridge when I come to it - for now, I'm thrilled to have my life back. Continued good luck to you -- Carol Re: Esophagus > Hello, Mark! I just had the myotomy done on Oct. 21st at UCLA Medical Center. > I had a fantastic surgeon named Dr. McFadden. I had severe achalasia for > over 2 years (meaning, chest pains, weight loss of over 30 lbs, regurgitating > food and water), needing two botox injections, one ballon dilation and > finally the myotomy. Before meeting with the surgeon I was lucky enough to > meet Dr. Roth, who diagnosed what I had accurately. Up until then, > the doctors I saw basically sent me to a shrink because they thought I was > crazy and had an eating disorder. I am feeling much better now. The surgery > was serious but UCLA Hospital was great. I had five small incisions on my > upper abdomen and no more regurgitation. I do get chest pains when I don't > eat right - meaning, I drank soda, smoked a cig, ate something spicy or > heavy. The barium swallow after the surgery showed slow movement but it is > such an improvement. I was so sick before - I literally thought this was > going to kill me. I hope that you will contact me (directly if need be) if > you need any other information and GOOD LUCK! Sincerely, Elena Wagner > > ------------------------------------------------------------------------ > Save cash today! > 1/1414/5/_/24373/_/950313601/ > > eGroups.com Home: achalasia/ > - Simplifying group communications > > > __________________________________________ NetZero - Defenders of the Free World Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Dear Mark, A replacement of the esophagus is not indicated even if one has had many esophageal dilatations. The recommended procedure is called a Laparoscopic Heller Myotomy. This procedure is done with a laparoscope and opens up the Lower Esophageal Sphincter muscle that has been hypertensive. Most patients leave the hospital on the second postoperative day. Jim Garza MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Hello, I have already had the Heller Myotomy in May of 1998. at Cleveland Clinic. The surgery worked well for about a year and then I started having problems again. I am scheduled for the next surgery on March 21. Thanks for the reply. Mark~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Good, hope all goes well. Jim Garza MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 I post occasionally and I hope you will remember me. Once again, a new problem. Doc did scope this week and found hypertonic lower esophageal spincther; hypertensive spasm at lower esophageal spinchter. Is this part of HLA B27? Seems I wake with a new problem every day. Thanks for helping me. Jane Quote Link to comment Share on other sites More sharing options...
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