Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hello and welcome to the Group,  Referring to your last comment about how horrendous the diet diet sounds afterwards, let me put your mind at rest and tell you that far from being horrendous, it feels absolutely wonderful when food of any kind starts going down into the stomach, instead of hanging around and frequently reappearing!  I always advise caution with regard to healing times and to take the diet gently at first but I honestly do not think that it will take 3 months for you to be eating normal stuff. I had my first proper meal, with meat and vegetables, at exactly 2 months and had been slowly building towards that for the last 3 weeks. Only the first 5 weeks involved liquids and mushy food only. I have heard of many people eating pizza etc in the first week, but personally I think that is taking things too quickly and asking for problems, BUT we are all different.  I too was a first-timer with surgery and it can be frightening, but your attitude is very very important. If you can be positive and cheerful and concentrate on the benefits that this is going to give you, you are able to control that fear. As for the op itself, sorry to state the obvious ( I had not realised what it would be like either), you know nothing! They inject you with something or other, you go drowsy, then they are telling you it's all over. That part is a doddle.  There are some lovely people in this Group who will answer all the questions you have. You are fortunate that you do not have to put up with this way of living for long. I am glad that your surgery is coming soon. Best of Luck.  From Ann in England. From: loufimpke <loufimpke@...> Subject: Heller Myotomy... achalasia Date: Sunday, 21 September, 2008, 12:23 AM Hi, I'm a new member here. I've been really struggling with Achalasia for a few months now, and just this week my doctor scheduled a Heller Myotomy surgery for October. My questions to everybody here are: How many people had the procedure done? What is the success rate? I was told the procedure doesn't work for everybody... Some background information: I'm a 29 year-old male, that other than Achalasia has been pretty healthy throughout my life. The symptoms started about a year ago, but have gotten terribly worse in the last couple of months. I can't really eat most things, so my doctor told me that surgery is the only viable option. I live in Seattle and my surgery is supposed to take place at Harborview Medical Center. I never had any kind of surgery, so I'm really anxious about it, I'm also really worried about the diet of liquids and mushy foods I'm supposed to keep for about three months after surgery (sounds horrendous). Any suggestions, advice, personal experiences, etc. will be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Each person is different as to how they respond to surgey? Is he doing it by laperoscopy? (small incisions) or open (one big incision)? I had an open only because I am larger through the belly and it would have been bore of a risk. My heller failed after less than a year. These results aren't normal. I've had achalasion for over twenty years and this was my first surgery. If you haven't had any dilitations, I believe that your chances of long-term relief are good. Especially if you are in good health otherwise. This is a good site. Chances are any questions you may have, someone will have the answer for you. As for the soft diet, it's not that bad. That's where a blender will come in handy. It may not look that great, but the taste is the same. lol. Better than nothing at all. I wish you luck. I'm sure you will be glad you had it done. From: loufimpke <loufimpke@...> Subject: Heller Myotomy... achalasia Date: Saturday, September 20, 2008, 7:23 PM Hi, I'm a new member here. I've been really struggling with Achalasia for a few months now, and just this week my doctor scheduled a Heller Myotomy surgery for October. My questions to everybody here are: How many people had the procedure done? What is the success rate? I was told the procedure doesn't work for everybody... Some background information: I'm a 29 year-old male, that other than Achalasia has been pretty healthy throughout my life. The symptoms started about a year ago, but have gotten terribly worse in the last couple of months. I can't really eat most things, so my doctor told me that surgery is the only viable option. I live in Seattle and my surgery is supposed to take place at Harborview Medical Center. I never had any kind of surgery, so I'm really anxious about it, I'm also really worried about the diet of liquids and mushy foods I'm supposed to keep for about three months after surgery (sounds horrendous). Any suggestions, advice, personal experiences, etc. will be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hello, Wow, we are almost neighbors, considering this group is world wide and we have active members from Australia, England and all over. My daughter who is now 11 was diagnosed with Achalasia almost 2 years ago and had surgery at Seattle Childrens Hospital. We live in Sequim, WA. If you would like to talk rather than email you could email me at my other address ccbourm@... and I can give you my contact info. This support group is awesome and got us through the most difficult time of our lives. One thing is that everyone is different and has different experiences and issues but there is some things that are common for most. Reading others stories is very helpful and you can learn alot. Good luck and hope to hear from you soon. , mom of an achalasian Heller Myotomy... Hi, I'm a new member here. I've been really struggling with Achalasia for a few months now, and just this week my doctor scheduled a Heller Myotomy surgery for October. My questions to everybody here are: How many people had the procedure done? What is the success rate? I was told the procedure doesn't work for everybody... Some background information: I'm a 29 year-old male, that other than Achalasia has been pretty healthy throughout my life. The symptoms started about a year ago, but have gotten terribly worse in the last couple of months. I can't really eat most things, so my doctor told me that surgery is the only viable option. I live in Seattle and my surgery is supposed to take place at Harborview Medical Center. I never had any kind of surgery, so I'm really anxious about it, I'm also really worried about the diet of liquids and mushy foods I'm supposed to keep for about three months after surgery (sounds horrendous). Any suggestions, advice, personal experiences, etc. will be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Thanks Ann. I guess the post-op diet is not much worse than my eating habits now My main problem with Achalasia is the eating part, food is always getting stuck in my throat, then my nose starts running, and then the coughing starts. I've never thrown up or had food come back up, it usually just gets stuck in my throat. Is that unusual? > > From: loufimpke <loufimpke@...> > Subject: Heller Myotomy... > achalasia > Date: Sunday, 21 September, 2008, 12:23 AM > > > > > > > Hi, > > I'm a new member here. I've been really struggling with Achalasia for > a few months now, and just this week my doctor scheduled a Heller > Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I > was told the procedure doesn't work for everybody... > > Some background information: I'm a 29 year-old male, that other than > Achalasia has been pretty healthy throughout my life. The symptoms > started about a year ago, but have gotten terribly worse in the last > couple of months. I can't really eat most things, so my doctor told me > that surgery is the only viable option. I live in Seattle and my > surgery is supposed to take place at Harborview Medical Center. I > never had any kind of surgery, so I'm really anxious about it, I'm > also really worried about the diet of liquids and mushy foods I'm > supposed to keep for about three months after surgery (sounds horrendous). > > Any suggestions, advice, personal experiences, etc. will be greatly > appreciated. > > Thanks. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hi , The surgery is supposed to be a laperoscopy. The did warn me of the possibility of open surgery, but they don't expect it. I never had any dilations, so I hope the Heller Myotomy will be a definite fix. I'm keeping my fingers crossed... Thanks for your response and support. > > From: loufimpke <loufimpke@...> > Subject: Heller Myotomy... > achalasia > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > Hi, > > I'm a new member here. I've been really struggling with Achalasia for > a few months now, and just this week my doctor scheduled a Heller > Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I > was told the procedure doesn't work for everybody... > > Some background information: I'm a 29 year-old male, that other than > Achalasia has been pretty healthy throughout my life. The symptoms > started about a year ago, but have gotten terribly worse in the last > couple of months. I can't really eat most things, so my doctor told me > that surgery is the only viable option. I live in Seattle and my > surgery is supposed to take place at Harborview Medical Center. I > never had any kind of surgery, so I'm really anxious about it, I'm > also really worried about the diet of liquids and mushy foods I'm > supposed to keep for about three months after surgery (sounds horrendous). > > Any suggestions, advice, personal experiences, etc. will be greatly > appreciated. > > Thanks. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 G'day, Ray here from Australia. I had my Heller Myotomy 2 years ago this coming October. I had not had any dilations prior to the op ,and so far I have not encountered any real problems to speak of. Mine was done via key hole (laparoscopic). Any questions regarding my op and post op, that I may be able to help you with, please don't hesitate to ask. Regards Ray in OZ achalasia@...: loufimpke@...: Mon, 22 Sep 2008 00:21:38 +0000Subject: Re: Heller Myotomy... Hi ,The surgery is supposed to be a laperoscopy. The did warn me of thepossibility of open surgery, but they don't expect it.I never had any dilations, so I hope the Heller Myotomy will be adefinite fix. I'm keeping my fingers crossed...Thanks for your response and support.> > From: loufimpke <loufimpke@...>> Subject: Heller Myotomy...> To: achalasia > Date: Saturday, September 20, 2008, 7:23 PM> > > > > > > Hi,> > I'm a new member here. I've been really struggling with Achalasia for> a few months now, and just this week my doctor scheduled a Heller> Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I> was told the procedure doesn't work for everybody...> > Some background information: I'm a 29 year-old male, that other than> Achalasia has been pretty healthy throughout my life. The symptoms> started about a year ago, but have gotten terribly worse in the last> couple of months. I can't really eat most things, so my doctor told me> that surgery is the only viable option. I live in Seattle and my> surgery is supposed to take place at Harborview Medical Center. I> never had any kind of surgery, so I'm really anxious about it, I'm> also really worried about the diet of liquids and mushy foods I'm> supposed to keep for about three months after surgery (soundshorrendous).> > Any suggestions, advice, personal experiences, etc. will be greatly> appreciated.> > Thanks.> > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hey new guy - what's your name? The single most important thing here is to find a surgeon who has done a LOT of myo's. They do exist and if I'm remembering correctly here, isn't Dr. Pelligrini the guy in the Seattle area? Someone will pipe up and give you the info. If you find an experienced surgeon, one who does at least 30-50 myo's a year - there's about a 90% success rate. Take the time now to go to someone experienced - it will save you hassles in the future. Now that being said... you'll never be back to 'normal' again. You will not have peristalsis so you will ALWAYS need some fluid to help get your food down *but* you'll only need 1 normal sized glass - not liters!! there may be some foods that continue to cause problems *but* you should be able to eat most of what you want most of the time. You'll adjust to your 'new normal' and within a few months, it'll be like being back to your old self. Certainly take it easy with eating in the beginning but I think 3 months of mushy is a bit conservative. Don't push it though. I would think by a month you should be back to burgers and pizza, just pay attention and chew well. Most of us (1700+ members) have had the myo at some point. I had one in 1989 and did really well for 19 years. Even sitting down at dinner, if you didn't know me - you'd have never known I had a swallowing problem - no more regurging at the kitchen sink, no more running to the rest room at restaurants and no gallons of liquids to get it down. Lap surgery is pretty easy. You'll be sore and tired for a few weeks but being young and healthy - you should be up and about quickly. Look at this time as a good way to catch up on books and movies!! good luck and keep us posted. We'll be happy to help any way we can. Also, please be sure to tell us who your surgeon is, we might have some experience and recommendations for you there as well. - in NC > > > > From: loufimpke <loufimpke@> > > Subject: Heller Myotomy... > > achalasia > > Date: Sunday, 21 September, 2008, 12:23 AM > > > > > > > > > > > > > > Hi, > > > > I'm a new member here. I've been really struggling with Achalasia for > > a few months now, and just this week my doctor scheduled a Heller > > Myotomy surgery for October. > > > > My questions to everybody here are: > > How many people had the procedure done? What is the success rate? I > > was told the procedure doesn't work for everybody... > > > > Some background information: I'm a 29 year-old male, that other than > > Achalasia has been pretty healthy throughout my life. The symptoms > > started about a year ago, but have gotten terribly worse in the last > > couple of months. I can't really eat most things, so my doctor told me > > that surgery is the only viable option. I live in Seattle and my > > surgery is supposed to take place at Harborview Medical Center. I > > never had any kind of surgery, so I'm really anxious about it, I'm > > also really worried about the diet of liquids and mushy foods I'm > > supposed to keep for about three months after surgery (sounds > horrendous). > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > appreciated. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi, Lou! I'm a fairly new member, too, and your story is somewhat similar to mine. I was just diagnosed in August. The swallowing problems began about a year ago but not until the past few months, past couple actually, that the condition has really worsened. I'm a 46 year old female in Ft. Wayne, IN with a wonderful husband of 22 years with 3 wonderful sons....ages 19, 16, and 15. I've been healthy all my life......eat healthy, exercise regularly, etc. I've never had any major surgery. I'm small framed, 5'1 " and currently weigh 103 lbs. I've not really lost weight yet with this disease but I am worried about the clear liquid diet prior to surgery and then the diet post surgery. Do most people lose weight during this time??? This group has been a tremendous help to me!!! Thank you all! Just an update on my situation.....I tried to appeal with my insurance to go to the Cleveland Clinic (my first choice) and it was denied as they feel that the Univ of MI have capable surgeons as well. The Univ of MI is a top notch med center, too, and I do feel comfortable with Dr. Pickens. He's not done as many as Dr.Rice but he and his partner have done 60 Hellers in the past 3 years, of which he said he's performed more than his partner. The day I saw him last week, he said he had done 3 the prior year. So I am praying that I will be in capable hands. My surgery is scheduled for Oct. 7th. Good luck to you, Lou, and to others who are still suffering from the disease, will be going through treatments, etc. I will be praying for all of you! Eloisa Heller Myotomy...> achalasia@grou ps.com> Date: Saturday, September 20, 2008, 7:23 PM> > > > > > > Hi,> > I'm a new member here. I've been really struggling with Achalasia for> a few months now, and just this week my doctor scheduled a Heller> Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I> was told the procedure doesn't work for everybody... > > Some background information: I'm a 29 year-old male, that other than> Achalasia has been pretty healthy throughout my life. The symptoms> started about a year ago, but have gotten terribly worse in the last> couple of months. I can't really eat most things, so my doctor told me> that surgery is the only viable option. I live in Seattle and my> surgery is supposed to take place at Harborview Medical Center. I> never had any kind of surgery, so I'm really anxious about it, I'm> also really worried about the diet of liquids and mushy foods I'm> supposed to keep for about three months after surgery (soundshorrendous) .> > Any suggestions, advice, personal experiences, etc. will be greatly> appreciated. > > Thanks.> > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Lou, when is your surgery in Oct? By the way, I've not had any prior treatments either, except prior to me being diagnosed with achalasia, my local GI doc here did a bougie dilation (not a pneumatic balloon dilation) during a scope. Also, I was advised by the surgeon at Univ of MI that I need to be on a clear liquid diet 3 days prior to surgery and then for two full weeks after surgery, I have to be on a liquid diet (not three months?).....soft, mushy foods the following two weeks, then I can slowly start solids..... Pre-op, he wants me to walk regularly, about 2 miles a day. He also gave me this breathing apparatus to help strengthen my lungs....I'm suppose to do this breathing exericse three times a day, 10x each......Surgery is 2-4 hrs and he expects me to be in the hospital two days, one overnight.. I'm also having the Dor Fundoplasty done with the Heller...... All sound familiar, Lou? I, too, am anxious about the surgery but also a little nervous...... Eloisa Heller Myotomy... > achalasia@grou ps.com > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > Hi, > > I'm a new member here. I've been really struggling with Achalasia for > a few months now, and just this week my doctor scheduled a Heller > Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I > was told the procedure doesn't work for everybody... > > Some background information: I'm a 29 year-old male, that other than > Achalasia has been pretty healthy throughout my life. The symptoms > started about a year ago, but have gotten terribly worse in the last > couple of months. I can't really eat most things, so my doctor told me > that surgery is the only viable option. I live in Seattle and my > surgery is supposed to take place at Harborview Medical Center. I > never had any kind of surgery, so I'm really anxious about it, I'm > also really worried about the diet of liquids and mushy foods I'm > supposed to keep for about three months after surgery (sounds horrendous). > > Any suggestions, advice, personal experiences, etc. will be greatly > appreciated. > > Thanks. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Correction to my email here.....Dr. Pickens indicated to me that just the week before I saw him, he had done 3 Hellers.....not 3 total done the prior year!!!! Heller Myotomy...> To: achalasia@grou ps.com> Date: Saturday, September 20, 2008, 7:23 PM> > > > > > > Hi,> > I'm a new member here. I've been really struggling with Achalasia for> a few months now, and just this week my doctor scheduled a Heller> Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I> was told the procedure doesn't work for everybody... > > Some background information: I'm a 29 year-old male, that other than> Achalasia has been pretty healthy throughout my life. The symptoms> started about a year ago, but have gotten terribly worse in the last> couple of months. I can't really eat most things, so my doctor told me> that surgery is the only viable option. I live in Seattle and my> surgery is supposed to take place at Harborview Medical Center. I> never had any kind of surgery, so I'm really anxious about it, I'm> also really worried about the diet of liquids and mushy foods I'm> supposed to keep for about three months after surgery (soundshorrendous) .> > Any suggestions, advice, personal experiences, etc. will be greatly> appreciated. > > Thanks.> > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi Eloisa, My surgery is scheduled for October 8th. Your story is very similar to mine. I even have the same breathing apparatus How bad is your Achalasia? In my case, eating is very hard but I don't throw up (at least not yet). I know some people can't even drink liquids, but I only have problems when drinking while eating. Do you have spasms? Yep, I'm also having the Dor Fundoplasty... I'm extremely anxious and nervous about the surgery, I try not to but I can't help it > > > > From: loufimpke <loufimpke@ ..> > > Subject: Heller Myotomy... > > achalasia@grou ps.com > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > Hi, > > > > I'm a new member here. I've been really struggling with Achalasia for > > a few months now, and just this week my doctor scheduled a Heller > > Myotomy surgery for October. > > > > My questions to everybody here are: > > How many people had the procedure done? What is the success rate? I > > was told the procedure doesn't work for everybody... > > > > Some background information: I'm a 29 year-old male, that other than > > Achalasia has been pretty healthy throughout my life. The symptoms > > started about a year ago, but have gotten terribly worse in the last > > couple of months. I can't really eat most things, so my doctor told me > > that surgery is the only viable option. I live in Seattle and my > > surgery is supposed to take place at Harborview Medical Center. I > > never had any kind of surgery, so I'm really anxious about it, I'm > > also really worried about the diet of liquids and mushy foods I'm > > supposed to keep for about three months after surgery (sounds > horrendous). > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > appreciated. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi , My name is Mike... The user name LouFimpke is just an anagram for my full name, I was trying to be clever My surgeon supposedly has a lot of experience. I know it sounds terrible, but I forgot his name. I was just too agitated... I think he works with Dr. Pellegrini, his name was brought up during my consultation. I hope my new normal will be normal enough. I've been quite depressed since Achalasia took over, and I need some solution. Your story gives me some hope, thank you. Mike. > > > > > > From: loufimpke <loufimpke@> > > > Subject: Heller Myotomy... > > > achalasia > > > Date: Sunday, 21 September, 2008, 12:23 AM > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > I'm a new member here. I've been really struggling with Achalasia > for > > > a few months now, and just this week my doctor scheduled a Heller > > > Myotomy surgery for October. > > > > > > My questions to everybody here are: > > > How many people had the procedure done? What is the success rate? > I > > > was told the procedure doesn't work for everybody... > > > > > > Some background information: I'm a 29 year-old male, that other > than > > > Achalasia has been pretty healthy throughout my life. The symptoms > > > started about a year ago, but have gotten terribly worse in the > last > > > couple of months. I can't really eat most things, so my doctor > told me > > > that surgery is the only viable option. I live in Seattle and my > > > surgery is supposed to take place at Harborview Medical Center. I > > > never had any kind of surgery, so I'm really anxious about it, I'm > > > also really worried about the diet of liquids and mushy foods I'm > > > supposed to keep for about three months after surgery (sounds > > horrendous). > > > > > > Any suggestions, advice, personal experiences, etc. will be > greatly > > > appreciated. > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Of course I think my situation is bad, but I don't think it's as bad as others who are considered in more advanced stages. The GI doc told me I'm in the " early stages " . I'm having swallowing problems but the size of my esophagus is still considered " normal " , meaning it has not yet stretched (as a result of food staying in the esophagus for longer period of times....). Is this your case, too? I think I know what you mean, when you say that your problem is when you drink. I feel ok as I eat and chew food. I feel even ok as it goes down my throat, but the moment I drink, I can feel my food sticking. Yes, I have spasms and I've actually regurgitated and vomited my food and drink (out through my mouth and nose...) maybe two to three times....(I notice that these times happened after I ate too much too soon...). I also have awaken in the middle of the night and regurgitated/vomited some " foamy " saliva. This has happened to me a handful of times only.....just the past month. How much recovery time are you being given? So your surgery is the day after mine. I will pray for you! I'm about 2.5 hrs from the Univ of MI, so my husband and I are trying to determine how long to stay before driving back. As rare as this is, can you believe that I know 3 people personally who has this disease??? I don't know them very well but I know who they are......one is an ex-brother in law who lives in CA (for the longest time, my sister - his ex-wife, thought he was bulimic!), two are in Ft. Wayne....a friend of a friend and then a mother of a friend. All three had the dilations prior to the surgery.....All are doing fine right now from the surgery (2, 4, and 5 yrs ago) but they are showing some sign of symptoms coming back....so this worries me!!! Have you lost weight from this? Like I said, I've not been a heavy person to start with, so I'm worried about losing weight......I'm 103 lbs now at 5'2 " ...... Heller Myotomy... > > achalasia@grou ps.com > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > Hi, > > > > I'm a new member here. I've been really struggling with Achalasia for > > a few months now, and just this week my doctor scheduled a Heller > > Myotomy surgery for October. > > > > My questions to everybody here are: > > How many people had the procedure done? What is the success rate? I > > was told the procedure doesn't work for everybody... > > > > Some background information: I'm a 29 year-old male, that other than > > Achalasia has been pretty healthy throughout my life. The symptoms > > started about a year ago, but have gotten terribly worse in the last > > couple of months. I can't really eat most things, so my doctor told me > > that surgery is the only viable option. I live in Seattle and my > > surgery is supposed to take place at Harborview Medical Center. I > > never had any kind of surgery, so I'm really anxious about it, I'm > > also really worried about the diet of liquids and mushy foods I'm > > supposed to keep for about three months after surgery (sounds > horrendous). > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > appreciated. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Mike, I'm sorry, I think I just called you Lou in my emails to you..... , I think 19 years doing well after a Heller is the longest I've seen. Are you still doing fine with it? I'm the one who's about to have a Heller done Oct 7th..... Thanks for your help! Eloisa Heller Myotomy... > > > achalasia@grou ps.com > > > Date: Sunday, 21 September, 2008, 12:23 AM > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > I'm a new member here. I've been really struggling with Achalasia > for > > > a few months now, and just this week my doctor scheduled a Heller > > > Myotomy surgery for October. > > > > > > My questions to everybody here are: > > > How many people had the procedure done? What is the success rate? > I > > > was told the procedure doesn't work for everybody... > > > > > > Some background information: I'm a 29 year-old male, that other > than > > > Achalasia has been pretty healthy throughout my life. The symptoms > > > started about a year ago, but have gotten terribly worse in the > last > > > couple of months. I can't really eat most things, so my doctor > told me > > > that surgery is the only viable option. I live in Seattle and my > > > surgery is supposed to take place at Harborview Medical Center. I > > > never had any kind of surgery, so I'm really anxious about it, I'm > > > also really worried about the diet of liquids and mushy foods I'm > > > supposed to keep for about three months after surgery (sounds > > horrendous). > > > > > > Any suggestions, advice, personal experiences, etc. will be > greatly > > > appreciated. > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi, My condition is very similar to yours, I'm also in the early stages. I guess I'm somehow lucky, I never regurgitated anything. I do have spasms, but for a while was misdiagnosed as acid reflux. The recovering time I was given was 2-3 days in the hospital (maybe less). In case of an open surgery, they told me up to 5 days. Wow, you actually know other people that have it? Nobody I know has even heard of Achalasia, it's always an ordeal trying to explain it. So all three of them have some symptoms back? That's an unnerving thought... I lost almost twenty pounds in the last couple of months. I've never been heavy either, so I'm looking more skinny than ever. I'm 6'1 and now I weight 175. Talk to you soon, Mike. > > > > > > From: loufimpke <loufimpke@ ..> > > > Subject: Heller Myotomy... > > > achalasia@grou ps.com > > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > I'm a new member here. I've been really struggling with Achalasia for > > > a few months now, and just this week my doctor scheduled a Heller > > > Myotomy surgery for October. > > > > > > My questions to everybody here are: > > > How many people had the procedure done? What is the success rate? I > > > was told the procedure doesn't work for everybody... > > > > > > Some background information: I'm a 29 year-old male, that other than > > > Achalasia has been pretty healthy throughout my life. The symptoms > > > started about a year ago, but have gotten terribly worse in the last > > > couple of months. I can't really eat most things, so my doctor told me > > > that surgery is the only viable option. I live in Seattle and my > > > surgery is supposed to take place at Harborview Medical Center. I > > > never had any kind of surgery, so I'm really anxious about it, I'm > > > also really worried about the diet of liquids and mushy foods I'm > > > supposed to keep for about three months after surgery (sounds > > horrendous). > > > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > > appreciated. > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 many of us have had myotomies it isnt a big operation. i had 2 already but unfortunately not sure what to do next myself. the most important thing is to stay strong and stay positive ! lots of people have it and it is normal mike 28 nyc > From: loufimpke <loufimpke@...> > Subject: Re: Heller Myotomy... > achalasia > Date: Monday, September 22, 2008, 8:08 PM > Hi, > > My condition is very similar to yours, I'm also in the > early stages. > > I guess I'm somehow lucky, I never regurgitated > anything. I do have > spasms, but for a while was misdiagnosed as acid reflux. > > The recovering time I was given was 2-3 days in the > hospital (maybe > less). In case of an open surgery, they told me up to 5 > days. > > Wow, you actually know other people that have it? Nobody I > know has > even heard of Achalasia, it's always an ordeal trying > to explain it. > So all three of them have some symptoms back? That's an > unnerving > thought... > > I lost almost twenty pounds in the last couple of months. > I've never > been heavy either, so I'm looking more skinny than > ever. I'm 6'1 and > now I weight 175. > > Talk to you soon, > Mike. > > > > > > > > > > > > From: loufimpke <loufimpke@ ..> > > > > Subject: Heller Myotomy... > > > > achalasia@grou ps.com > > > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > I'm a new member here. I've been > really struggling with > Achalasia for > > > > a few months now, and just this week my > doctor scheduled a Heller > > > > Myotomy surgery for October. > > > > > > > > My questions to everybody here are: > > > > How many people had the procedure done? What > is the success rate? I > > > > was told the procedure doesn't work for > everybody... > > > > > > > > Some background information: I'm a 29 > year-old male, that other than > > > > Achalasia has been pretty healthy throughout > my life. The symptoms > > > > started about a year ago, but have gotten > terribly worse in the last > > > > couple of months. I can't really eat > most things, so my doctor > told me > > > > that surgery is the only viable option. I > live in Seattle and my > > > > surgery is supposed to take place at > Harborview Medical Center. I > > > > never had any kind of surgery, so I'm > really anxious about it, I'm > > > > also really worried about the diet of > liquids and mushy foods I'm > > > > supposed to keep for about three months > after surgery (sounds > > > horrendous). > > > > > > > > Any suggestions, advice, personal > experiences, etc. will be greatly > > > > appreciated. > > > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Group - For those of you who have had the Lap Heller Myo and have had another surgery or symptoms are starting to come back, what reasons were you given as to why the first surgery didn't last? If the surgery was done right, would it still be possible for symptoms to come back? I know the answer is could be yes, but why? Like I mentioned, I know of three people personally and the only common thread I see is that they were in more advanced stages before the surgery and they had dilations done prior. Two of the three were also done by general surgeons and not necessarily thoracic surgeons. Thanks, Eloisa Heller Myotomy... > > > achalasia@grou ps.com > > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > I'm a new member here. I've been really struggling with Achalasia for > > > a few months now, and just this week my doctor scheduled a Heller > > > Myotomy surgery for October. > > > > > > My questions to everybody here are: > > > How many people had the procedure done? What is the success rate? I > > > was told the procedure doesn't work for everybody... > > > > > > Some background information: I'm a 29 year-old male, that other than > > > Achalasia has been pretty healthy throughout my life. The symptoms > > > started about a year ago, but have gotten terribly worse in the last > > > couple of months. I can't really eat most things, so my doctor told me > > > that surgery is the only viable option. I live in Seattle and my > > > surgery is supposed to take place at Harborview Medical Center. I > > > never had any kind of surgery, so I'm really anxious about it, I'm > > > also really worried about the diet of liquids and mushy foods I'm > > > supposed to keep for about three months after surgery (sounds > > horrendous). > > > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > > appreciated. > > > > > > Thanks.. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 My Heller is scheduled for tomorrow afternoon. My achalasia has gotten really bad fast with terrible regurgitation, aspiration, pain, the whole ball of yarn. Looking normal to some NORMAL or at least NEAR NORMAL eating again. My mother in law has promised to make me a pot roast with mashed potatoes and all the fixings once I am able to eat normally again. -- On Mon, Sep 22, 2008 at 8:26 PM, Eloisa Herberger <e.herberger@...>wrote: > Group - For those of you who have had the Lap Heller Myo and have > had another surgery or symptoms are starting to come back, what reasons were > you given as to why the first surgery didn't last? > > If the surgery was done right, would it still be possible for symptoms to > come back? I know the answer is could be yes, but why? > > Like I mentioned, I know of three people personally and the only common > thread I see is that they were in more advanced stages before the surgery > and they had dilations done prior. Two of the three were also done by > general surgeons and not necessarily thoracic surgeons. > > Thanks, > Eloisa > > > Heller Myotomy... > > > > achalasia@grou ps.com > > > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > I'm a new member here. I've been really struggling with > Achalasia for > > > > a few months now, and just this week my doctor scheduled a Heller > > > > Myotomy surgery for October. > > > > > > > > My questions to everybody here are: > > > > How many people had the procedure done? What is the success rate? I > > > > was told the procedure doesn't work for everybody... > > > > > > > > Some background information: I'm a 29 year-old male, that other than > > > > Achalasia has been pretty healthy throughout my life. The symptoms > > > > started about a year ago, but have gotten terribly worse in the last > > > > couple of months. I can't really eat most things, so my doctor > told me > > > > that surgery is the only viable option. I live in Seattle and my > > > > surgery is supposed to take place at Harborview Medical Center. I > > > > never had any kind of surgery, so I'm really anxious about it, I'm > > > > also really worried about the diet of liquids and mushy foods I'm > > > > supposed to keep for about three months after surgery (sounds > > > horrendous). > > > > > > > > Any suggestions, advice, personal experiences, etc. will be greatly > > > > appreciated. > > > > > > > > Thanks.. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Eloisa wrote: > what reasons were you given as to why the first surgery didn't last? > When a myotomy lasts long enough to be considered a success there are a few reasons why it may not work as well in latter years. First, achalasia is a progressive disorder. Peristalsis may become weaker over time and the muscles of the esophagus may atrophy. Also, scarring from the surgery and from acid reflux may cause strictures in the area of the myotomy. As muscle contractions become weaker there is less force to push the food into the stomach through the strictures and the myotomized portion of the esophagus. More and more food is able to build up in the lower esophagus and stay there. The food staying in the esophagus pushes against the atrophied esophageal muscles and causes the esophagus to distend and in time to dilate, lengthen and bend. In time a few will even need to have their esophagi removed because another myotomy or dilatation will no longer help. Some people progress more and faster than others. I don't know any way to know who will have the worst progression. Those who have successful treatments tend to progress slower than those that do not. We do what we can to prevent and slow the progression but I don't know that you can prevent it in everyone no matter how careful you are. Sometimes a myotomy is so successful that the esophagus will become less dilated, but in time as thing become worse that could change. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hiya - Curious to know what can be done to slow the worsening of achalasia symptoms. Seeing as it's a life long condition i would like to try everything I can to make this heller last as long as possible!! Thanks! Hannah > > what reasons were you given as to why the first surgery didn't last? > > > > When a myotomy lasts long enough to be considered a success there are a > few reasons why it may not work as well in latter years. First, > achalasia is a progressive disorder. Peristalsis may become weaker over > time and the muscles of the esophagus may atrophy. Also, scarring from > the surgery and from acid reflux may cause strictures in the area of the > myotomy. As muscle contractions become weaker there is less force to > push the food into the stomach through the strictures and the myotomized > portion of the esophagus. More and more food is able to build up in the > lower esophagus and stay there. The food staying in the esophagus pushes > against the atrophied esophageal muscles and causes the esophagus to > distend and in time to dilate, lengthen and bend. In time a few will > even need to have their esophagi removed because another myotomy or > dilatation will no longer help. Some people progress more and faster > than others. I don't know any way to know who will have the worst > progression. Those who have successful treatments tend to progress > slower than those that do not. We do what we can to prevent and slow the > progression but I don't know that you can prevent it in everyone no > matter how careful you are. Sometimes a myotomy is so successful that > the esophagus will become less dilated, but in time as thing become > worse that could change. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi Mike - I had my surgery 9 days ago (having suffered since I was 19 - 13 years ago) and I was nil by mouth for three days (plus the 48 hours pre-surgery liquid only diet) and up until yesterday I was on the " thin liquid " only diet. Today I had some pureed fruit (seived) with yoghurt and milk for breakfast (very small quantities mind) and for lunch (and dinner) I had boiled and blended mushroom soup with a dollap of yoghurt (tasted much nicer than it sounds) and it has been the most exciting thing ever!!!! The pre-surgery worry and depression was terrible, the 12 days of liquids only (minus three of nil by mouth) was HELL quite frankly the most terrible MENTAL torture ever. Physically in comparison has been a walk in the park. I'm over the worst and I'm sure most others would agree with me that the first 1-2 weeks post-op is the worst and after that it's plain sailing and there's nothing wrong with eating healthy and rediscovering the simple foods :-) My friend just lent me her " weaning baby " book (!!!) for some inspiration for blended veggies and stuff so anything like that can be inspiring. Good luck with it and with a bit of luck you'll be able to have a good Christmas dinner - and maybe some nice mushy thanksgiving stuff (you're American right?) if you have 2-3 weeks to recover. Better than not being able to eat at all that's for sure! Hannah (london). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Thanks Ray... Would you say that eating is normal again for you? My main problem with Achalasia is eating, so I'm just hoping that gets fixed with the surgery. What was the diet the doctors gave you post-op? Mike. > > From: loufimpke <loufimpke@>> Subject: Heller Myotomy...> To: achalasia > Date: Saturday, September 20, 2008, 7:23 PM> > > > > > > Hi,> > I'm a new member here. I've been really struggling with Achalasia for> a few months now, and just this week my doctor scheduled a Heller> Myotomy surgery for October. > > My questions to everybody here are: > How many people had the procedure done? What is the success rate? I> was told the procedure doesn't work for everybody...> > Some background information: I'm a 29 year-old male, that other than> Achalasia has been pretty healthy throughout my life. The symptoms> started about a year ago, but have gotten terribly worse in the last> couple of months. I can't really eat most things, so my doctor told me> that surgery is the only viable option. I live in Seattle and my> surgery is supposed to take place at Harborview Medical Center. I> never had any kind of surgery, so I'm really anxious about it, I'm> also really worried about the diet of liquids and mushy foods I'm> supposed to keep for about three months after surgery (soundshorrendous).> > Any suggestions, advice, personal experiences, etc. will be greatly> appreciated.> > Thanks.> > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been removed]> > > > > > > _________________________________________________________________ > It's simple! Sell your car for just $40 at CarPoint.com.au > http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fsecure%2Dau%2Eimrworldwide%2Ecom\ %2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai%5F8596\ 41 & _t=762955845 & _r=tig_OCT07 & _m=EXT > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi Mike, You had two Myotomies done and you're still having problems? Mike from Seattle. > > > > > > > > > > From: loufimpke <loufimpke@ ..> > > > > > Subject: Heller Myotomy... > > > > > achalasia@grou ps.com > > > > > Date: Saturday, September 20, 2008, 7:23 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > I'm a new member here. I've been > > really struggling with > > Achalasia for > > > > > a few months now, and just this week my > > doctor scheduled a Heller > > > > > Myotomy surgery for October. > > > > > > > > > > My questions to everybody here are: > > > > > How many people had the procedure done? What > > is the success rate? I > > > > > was told the procedure doesn't work for > > everybody... > > > > > > > > > > Some background information: I'm a 29 > > year-old male, that other than > > > > > Achalasia has been pretty healthy throughout > > my life. The symptoms > > > > > started about a year ago, but have gotten > > terribly worse in the last > > > > > couple of months. I can't really eat > > most things, so my doctor > > told me > > > > > that surgery is the only viable option. I > > live in Seattle and my > > > > > surgery is supposed to take place at > > Harborview Medical Center. I > > > > > never had any kind of surgery, so I'm > > really anxious about it, I'm > > > > > also really worried about the diet of > > liquids and mushy foods I'm > > > > > supposed to keep for about three months > > after surgery (sounds > > > > horrendous). > > > > > > > > > > Any suggestions, advice, personal > > experiences, etc. will be greatly > > > > > appreciated. > > > > > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi Hannah, Thank you for your insights. My doctor gave me a different pre-op diet than yours, I can eat whatever till the night before, they're supposed to " vacuum " my stomach before the operation. But it's not like Achalasia actually allows me to eat most things these days... I'm glad your surgery went well, I hope I'm in good spirits after mine. Right now the anxiety is getting the best of me. Yeah, a Christmas dinner would be very nice! Thanks again Hannah, Mike. > > Hi Mike - > > I had my surgery 9 days ago (having suffered since I was 19 - 13 years > ago) and I was nil by mouth for three days (plus the 48 hours > pre-surgery liquid only diet) and up until yesterday I was on the > " thin liquid " only diet. Today I had some pureed fruit (seived) with > yoghurt and milk for breakfast (very small quantities mind) and for > lunch (and dinner) I had boiled and blended mushroom soup with a > dollap of yoghurt (tasted much nicer than it sounds) and it has been > the most exciting thing ever!!!! > > The pre-surgery worry and depression was terrible, the 12 days of > liquids only (minus three of nil by mouth) was HELL quite frankly the > most terrible MENTAL torture ever. Physically in comparison has been > a walk in the park. I'm over the worst and I'm sure most others would > agree with me that the first 1-2 weeks post-op is the worst and after > that it's plain sailing and there's nothing wrong with eating healthy > and rediscovering the simple foods :-) > > My friend just lent me her " weaning baby " book (!!!) for some > inspiration for blended veggies and stuff so anything like that can be > inspiring. > > Good luck with it and with a bit of luck you'll be able to have a good > Christmas dinner - and maybe some nice mushy thanksgiving stuff > (you're American right?) if you have 2-3 weeks to recover. Better > than not being able to eat at all that's for sure! > > Hannah (london). > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Hannah wrote: > Curious to know what can be done to slow the worsening of achalasia > symptoms. We know that untreated the esophagus can dilate and become megaesophagus. We also know that sometimes after a myotomy the esophageal diameter can shrink. So it seems that having food constantly stuck in the esophagus has an impact on the dilating of the esophagus. Treatment and watching how you eat and what you do, to minimize the amount of food and time stuck in the esophagus, and controlling reflux, is all I know that can be done for that. You have to control the reflux so it doesn't cause strictures. Over time peristalsis and even dysfunctional contractions of the esophagus become less and the muscles atrophy. This makes the esophagus weaker and easier to dilate and lengthen. This is because of the loss of nerve function to those muscles. Some of the nerve damage may be from being stretched to much so again doing what you can to prevent food from stretching them may be helpful. It seems though, that the nerves may also be damaged by something that is not yet understood, virus, autoimmune or some other cause. There may be nothing you can do to stop the atrophy of the muscles effected by that. One theoretical possibility would be electrical muscle stimulation with something like a TNS device. Possibly regular treatments could strengthen the muscles, (though they would still be dysfunctional), and so strengthen the esophagus. I know of no studies on that idea though. One thing that happens is patients after treatment decide to just live with symptoms when they start to recur or worsen. I think often patients think that they have already tried treatment and they are just going to live with it now. Achalasia is not a one treatment permanent fix or cure. I think checking up on changes in symptoms with an experienced doctor is probably one of the best things we can do. Others feel that even without symptom changes having the esophagus checked every year or few years may be good. We don't all progress in the same way. For some people their achalasia is more about the LES while for others it is more about peristalsis. Some progress very fast and others progress little over many years. I don't think anyone knows why there are these differences. There are no guarantees how much you will progress or if you can stop it. notan Quote Link to comment Share on other sites More sharing options...
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