Guest guest Posted February 17, 2006 Report Posted February 17, 2006 > Late last year, my friend was diagnosed with breast cancer. She is > currently undergoing chemotherapy. The side effects have been so > severe that she has been forced to leave her job - a job she had just > started and which therefore provides no disability benefits - and her > doctors tell her that she will be unable to work for the next year. I'd like to reiterate that the medical archives show a reduction or elimination of side effects from chemotherapy (or radiation) when a person takes precautions against them. The precaution is cold-processed whey. In this case what it's doing is reducing the toxin load of the chemotherapy itself, and reducing or eliminating the free radical damage (primarily hydroxyl ions) that continues to cook one for weeks after radication, and in chemo, causes the bowel lining to slough off and causes people to feel ill. When cold-processed whey and selenium is used as an adjuvant treatment, many people don't even get sick enough fom their cancer treatment to have to miss any work. All I can do on a good day with timely information is help prevent the treatment from causing so much illness, but that I CAN do; all she has to do is get on the detox and nutrition program and it won't take but a short while to feel better. I think some of the studies are in a Glutahtione Ebook I have, all of them are in the book, " Glutathione: Your Body's Most Powerful Healing Agent " , and all of them are also in the booklet " Glutathione: Its Role in Cancer and Anticancer Therapy " . This has been well known in the medical literature for several years; more's the pity the cancer clinics don't refer their charges to this information. Duncan Crow Quote
Guest guest Posted February 17, 2009 Report Posted February 17, 2009 Rich wrote: > Has anyone had or heard of someone who had a myontomy when their > throat is curved and it can no longer rely on gravity to bring food > into the stomach. I am wondering if it's possible to take out the > curve, have a myotomy and thus save your stomach ... There are some studies that suggest it is possible. I posted these not long ago so if you have been reading old messages you may have seen them: Long-term outcome of Heller myotomy in achalasic sigmoid esophagus http://jtcs.ctsnetjournals.org/cgi/content/full/128/3/402 The outcome of laparoscopic Heller myotomy for achalasia is not influenced by the degree of esophageal dilatation. http://www.ncbi.nlm.nih.gov/pubmed/17710504 Laparoscopic Heller myotomy relieves dysphagia in achalasia when the esophagus is dilated. http://www.ncbi.nlm.nih.gov/pubmed/10449836 One of the names on two of those is Dr. Patti. He is now at the University of Chicago Medical Center. See: http://www.uchospitals.edu/physicians/marco-patti.html You can contact him there for more information. > There was someone in Spain who got a new wind pipe by growing her > own stem cells on a donor wind pipe. I am afraid we are probably > many years away from growing a replacement esophagus. > Actually they are working on it and someone posted an article about it not long ago. But I think at this time even if you could get someone to do it for you, you would end up with no peristalsis in it. Basically, you would end up with just a tube. Much like you get if you replace the esophagus with colon, which is sometimes done to replace the esophagus. notan Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 rich- I have just returned from cleveland where dr thomas rice did a myotomy on my 16 year old son. when we were there he showed us pictures of an eophagus like the one you describe. he said it was difficult but he was able to correct the s curve in that incident. I believe he said in that case he had to do an open myotomy due to the damage, but I could be wrong. in my opinion you owe it to yourself to see if he could help you...angela Seeking help Hello Everyone, I'm looking for advice, feeling desperate/scared and running out of time and options. I was diagnosed with achalasia in 1987. I had Witzel balloon dilitations in 1987 and 1992. I had botox injections in 1992,1999, and Februrary 2007. A barium esophagram in Jan 2006 revealed my esophagus was dilated up to 10 centimeters. I was stunned. They call it a sigmoid esophagus or a sink trp deformity because of the way is curves. Food and liquids must come down through the curve and then back up before getting to my stomach. The esophagus never clears so there is increased risk of cancer and aspiration. But I have always been basically asymtomatic. But I am having major problems swallowing now. Have been drinking lots of Ensure and some soft solid food for the past week. I need some kind of intervention very soon. Dr. Chang, a thoracic surgeon at University of Michigan, is recommeding an esophajectomy. He recommended that back in Jan. 2006 but I opted for a botox. He says a myontomy won't work since my esophagus is shaped in a J with that curve. My gastroenterologist, Dr. Nostrandt at UM is willing to do more botox or stretching though it is very difficult because my throat is so jammed with food and liquid that even 4 days of fasting on clear liquids does not clear the throat. He believes it is a highly unlikely that I can go the rest of my life without an esophajectomy. Since I am 55, he thinks I should do it now and get it over with while I am still relatively young and healthy. I have an appointment on Friday for another barium esophagram and consult with Dr. Chang. Has anyone had or heard of someone who had a myontomy when their throat is curved and it can no longer rely on gravity to bring food into the stomach. I am wondering if it's possible to take out the curve, have a myotomy and thus save your stomach (esophajectomy means they form your stomach into an esophgus and take out most of the esophagus - leaving you with basically no stomach.) Or has anyone heard of any other alternative, innovative treatments? There was someone in Spain who got a new wind pipe by growing her own stem cells on a donor wind pipe. I am afraid we are probably many years away from growing a replacement esophagus. If you've had an esophjectomy, how did it go? How bad was the surgery and how have things gone since? Thank you for any answers, advice, information, experience you can share with me. And if I can help anyone with questions I am more than happy to. Rich Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 Thanks for sharing these Notan! The studies are very interesting and I will bringing copies of them to the appointment with my surgeon on Friday. Thanks also for the bio on Dr. Patti. > > Has anyone had or heard of someone who had a myontomy when their > > throat is curved and it can no longer rely on gravity to bring food > > into the stomach. I am wondering if it's possible to take out the > > curve, have a myotomy and thus save your stomach ... > > There are some studies that suggest it is possible. I posted these not > long ago so if you have been reading old messages you may have seen them: > > Long-term outcome of Heller myotomy in achalasic sigmoid esophagus > http://jtcs.ctsnetjournals.org/cgi/content/full/128/3/402 > > The outcome of laparoscopic Heller myotomy for achalasia is not > influenced by the degree of esophageal dilatation. > http://www.ncbi.nlm.nih.gov/pubmed/17710504 > > Laparoscopic Heller myotomy relieves dysphagia in achalasia when the > esophagus is dilated. > http://www.ncbi.nlm.nih.gov/pubmed/10449836 > > One of the names on two of those is Dr. Patti. He is now at the > University of Chicago Medical Center. See: > http://www.uchospitals.edu/physicians/marco-patti.html > You can contact him there for more information. > > > There was someone in Spain who got a new wind pipe by growing her > > own stem cells on a donor wind pipe. I am afraid we are probably > > many years away from growing a replacement esophagus. > > > > Actually they are working on it and someone posted an article about it > not long ago. But I think at this time even if you could get someone to > do it for you, you would end up with no peristalsis in it. Basically, > you would end up with just a tube. Much like you get if you replace the > esophagus with colon, which is sometimes done to replace the esophagus. > > notan > Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 Hi Isabella, Wow. 2 open myotomies and the -ectomy with complications. You've been through so much yet it's so heartening to read how you are feeling now - more energy than in 15 years....Energy is an issue for me too. What is a J-tube?? Did the myotomies make the -ectomy more difficult to perform? Do you have to eat six small meals per day and chew very carefully? Have you had any problems with dumping? Thanks so much for answering my questions. This whole group is so cool. Rich > > Hi , > > Sorry to hear the trouble you're in. I can imagine this being very hard on you both fysically and mentally. It's hard to decide for which treatment you should opt. > > I have had them all: balloon dilatations, bougie dilatations, Botox, 2 open myotomies and finally last year the -ectomy. > > I can only speak from my own experience and with that I can give you some information concerning the -ectomy. > > If I had to do it all over again, I would. But only if there were no other options available or if chances of reaching a positive result were too little. This was the case in my situation, therefore I had my -ectomy done. > > If you are otherwise in good health, the -ectomy will be hard to deal with, but not life threatening. I believe there is hardly anyone that didn't have to deal with issues/complications post - ectomy. I dealt with severe scar tissue (had over 20 dilatations to push it aside and they cut the tissue away 6 weeks ago, treatment will be repeated in 2 weeks, but I'm fine now) and I lost my voice for over 4 months (I could speak, but like I was having the worst cold and very soft). My surgery was done March 31st last and I got rid of my J-tube 2 weeks ago. > > I am getting stronger by the day. I am able to work very very hard again and I can swallow about anything. Sure there are issues, but nobody ever told me it was going to be easy. Nowadays I am very very happy with my " new " esophagus. It brings me joy and energy, I have more energy than I've had in over 15 years! > > It's worth it, though it's a long road. Bear in mind that it's only worth it, if there's no other way to deal with things. But also bear in mind, that it's not the end of the world to get your esophagus removed, you can live a pretty normal life without that d... thing! > > Good luck with whatever decision you make and if you have any questions, please don't hesitate to ask. > > Isabella > > > > > ________________________________ > From: richardbailhe <rbailhe@...> > achalasia > Sent: Wednesday, February 18, 2009 3:11:33 AM > Subject: Seeking help > > > Hello Everyone, > I'm looking for advice, feeling desperate/scared and running out > of time and options. I was diagnosed with achalasia in 1987. I had > Witzel balloon dilitations in 1987 and 1992. I had botox injections > in 1992,1999, and Februrary 2007. > A barium esophagram in Jan 2006 revealed my esophagus was dilated > up to 10 centimeters. I was stunned. They call it a sigmoid > esophagus or a sink trp deformity because of the way is curves. Food > and liquids must come down through the curve and then back up before > getting to my stomach. The esophagus never clears so there is > increased risk of cancer and aspiration. But I have always been > basically asymtomatic. But I am having major problems swallowing > now. Have been drinking lots of Ensure and some soft solid food for > the past week. I need some kind of intervention very soon. > Dr. Chang, a thoracic surgeon at University of Michigan, is > recommeding an esophajectomy. He recommended that back in Jan. 2006 > but I opted for a botox. He says a myontomy won't work since my > esophagus is shaped in a J with that curve. My gastroenterologist, > Dr. Nostrandt at UM is willing to do more botox or stretching though > it is very difficult because my throat is so jammed with food and > liquid that even 4 days of fasting on clear liquids does not clear > the throat. He believes it is a highly unlikely that I can go the > rest of my life without an esophajectomy. Since I am 55, he thinks I > should do it now and get it over with while I am still relatively > young and healthy. I have an appointment on Friday for another > barium esophagram and consult with Dr. Chang. > Has anyone had or heard of someone who had a myontomy when their > throat is curved and it can no longer rely on gravity to bring food > into the stomach. I am wondering if it's possible to take out the > curve, have a myotomy and thus save your stomach (esophajectomy > means they form your stomach into an esophgus and take out most of > the esophagus - leaving you with basically no stomach.) > Or has anyone heard of any other alternative, innovative > treatments? > There was someone in Spain who got a new wind pipe by growing her > own stem cells on a donor wind pipe. I am afraid we are probably > many years away from growing a replacement esophagus. > If you've had an esophjectomy, how did it go? How bad was the > surgery and how have things gone since? > Thank you for any answers, advice, information, experience you > can share with me. And if I can help anyone with questions I am more > than happy to. > Rich > > > > > > > > Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 , Thank you. I am so happy to have found this group. Until now, I only met one other person with achalasia. Could you give me more specifics about Dr. Nostrandt? In some ways, I blame him for my sigmoid esophagus because I went 7 years on one botox injection which I think would be some kind of record. But what was acually happening was my esophagus was growing worse and worse. I feel like he should have followed me closer. Like, we'll see you back here next year or at leat in two years. But on the other hand, I had no symtoms and no reason to call him (or so I thought)which is unusual I am leaning. What did Dr. Rice do for your husband? Ann Arbor is so convenient for me since I live in Lansing and my sister lives in Ann Arbor. And my niece is a nurse at St. Joe's in Ann Arbor and my sister has a good friend who works at UM Hospital in the OR. She doesn't know Nostrandt at all but has heard good things about the thoracic surgion who's name is Chang. He's kind of young looking but has done esophajectomies for 7 or 8 years and mentored under Dr. Orringer. He says in his own words, " I've done a lot. I've done 60 or 70, it's hard to count - well over 50 anyway. I see him again on Friday. I'm sure Dr Rice has done way more that Chang. Thanks, Rich > > > > Hello Everyone, > > I'm looking for advice, feeling desperate/scared and running out > > of time and options. I was diagnosed with achalasia in 1987. I had > > Witzel balloon dilitations in 1987 and 1992. I had botox injections > > in 1992,1999, and Februrary 2007. > > A barium esophagram in Jan 2006 revealed my esophagus was dilated > > up to 10 centimeters. I was stunned. They call it a sigmoid > > esophagus or a sink trp deformity because of the way is curves. Food > > and liquids must come down through the curve and then back up before > > getting to my stomach. The esophagus never clears so there is > > increased risk of cancer and aspiration. But I have always been > > basically asymtomatic. But I am having major problems swallowing > > now. Have been drinking lots of Ensure and some soft solid food for > > the past week. I need some kind of intervention very soon. > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > recommeding an esophajectomy. He recommended that back in Jan. 2006 > > but I opted for a botox. He says a myontomy won't work since my > > esophagus is shaped in a J with that curve. My gastroenterologist, > > Dr. Nostrandt at UM is willing to do more botox or stretching though > > it is very difficult because my throat is so jammed with food and > > liquid that even 4 days of fasting on clear liquids does not clear > > the throat. He believes it is a highly unlikely that I can go the > > rest of my life without an esophajectomy. Since I am 55, he thinks I > > should do it now and get it over with while I am still relatively > > young and healthy. I have an appointment on Friday for another > > barium esophagram and consult with Dr. Chang. > > Has anyone had or heard of someone who had a myontomy when their > > throat is curved and it can no longer rely on gravity to bring food > > into the stomach. I am wondering if it's possible to take out the > > curve, have a myotomy and thus save your stomach (esophajectomy > > means they form your stomach into an esophgus and take out most of > > the esophagus - leaving you with basically no stomach.) > > Or has anyone heard of any other alternative, innovative > > treatments? > > There was someone in Spain who got a new wind pipe by growing her > > own stem cells on a donor wind pipe. I am afraid we are probably > > many years away from growing a replacement esophagus. > > If you've had an esophjectomy, how did it go? How bad was the > > surgery and how have things gone since? > > Thank you for any answers, advice, information, experience you > > can share with me. And if I can help anyone with questions I am more > > than happy to. > > Rich > > > Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 Rich, Let me first tell you that my husband () doesn't have Achalasia, he has Diffuse Esophageal Spasm (DES is similar, with severe spasms, but normally the esophagus doesn't dilate and his problem is actually in the mid-esophagus). Dr. Nostrandt actually was the first to diagnose , but he never really told us the name (said it was just an " esophagus motility problem " ). He recommended Botox, which was performed by our local GI doc, but when things didn't improve he didn't really suggest much else besides more Botox (which was starting to have a " rebound " effect for a few weeks after the tx). wanted more answers and that's when I found this group and we learned a LOT! At Cleveland Clinic, he first saw a GI doc for tests to confirm the diagnosis and even more Botox. When he again had a bad reaction a few weeks later and a medication he prescribed didn't help, we insisted on seeing Dr. Rice for a consult. With DES, surgery is considered a last resort, and DES is more rare than Achalasia. Dr. Rice had only done 3 surgeries on DES patients, with only 1 total success. He prescribed Nifidipine, which helped a little bit and decided not to have surgery. Dr. Rice seemed to discourage it in this case, too. If you read messages on the website, look on the left hand side of the page under either files or database for questions to ask the doctor. It's been said on here before that it's best to find a surgeon who has done at least 50 of that type of surgery. You could ask the surgeon how many esophagectomies he's done for achalasia patients (that'll probably much less than his total #) and how his patients are doing now. I know U of M is convenient, but you should probably get more opinions before making your decision. Good luck and let me know if I can be of any other help! in SE Michigan > > > > > > Hello Everyone, > > > I'm looking for advice, feeling desperate/scared and running > out > > > of time and options. I was diagnosed with achalasia in 1987. I > had > > > Witzel balloon dilitations in 1987 and 1992. I had botox > injections > > > in 1992,1999, and Februrary 2007. > > > A barium esophagram in Jan 2006 revealed my esophagus was > dilated > > > up to 10 centimeters. I was stunned. They call it a sigmoid > > > esophagus or a sink trp deformity because of the way is curves. > Food > > > and liquids must come down through the curve and then back up > before > > > getting to my stomach. The esophagus never clears so there is > > > increased risk of cancer and aspiration. But I have always been > > > basically asymtomatic. But I am having major problems swallowing > > > now. Have been drinking lots of Ensure and some soft solid food > for > > > the past week. I need some kind of intervention very soon. > > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > > recommeding an esophajectomy. He recommended that back in Jan. > 2006 > > > but I opted for a botox. He says a myontomy won't work since my > > > esophagus is shaped in a J with that curve. My > gastroenterologist, > > > Dr. Nostrandt at UM is willing to do more botox or stretching > though > > > it is very difficult because my throat is so jammed with food > and > > > liquid that even 4 days of fasting on clear liquids does not > clear > > > the throat. He believes it is a highly unlikely that I can go > the > > > rest of my life without an esophajectomy. Since I am 55, he > thinks I > > > should do it now and get it over with while I am still > relatively > > > young and healthy. I have an appointment on Friday for another > > > barium esophagram and consult with Dr. Chang. > > > Has anyone had or heard of someone who had a myontomy when > their > > > throat is curved and it can no longer rely on gravity to bring > food > > > into the stomach. I am wondering if it's possible to take out > the > > > curve, have a myotomy and thus save your stomach (esophajectomy > > > means they form your stomach into an esophgus and take out most > of > > > the esophagus - leaving you with basically no stomach.) > > > Or has anyone heard of any other alternative, innovative > > > treatments? > > > There was someone in Spain who got a new wind pipe by growing > her > > > own stem cells on a donor wind pipe. I am afraid we are probably > > > many years away from growing a replacement esophagus. > > > If you've had an esophjectomy, how did it go? How bad was the > > > surgery and how have things gone since? > > > Thank you for any answers, advice, information, experience > you > > > can share with me. And if I can help anyone with questions I am > more > > > than happy to. > > > Rich > > > > > > Quote
Guest guest Posted February 18, 2009 Report Posted February 18, 2009 , I was reading some of the posts regarding your son. It sounds like things are really looking up for him. Thanks for this tip and I am definetely going to see if Dr Rice might be able to help. Thanks for writing. Rich > > rich- I have just returned from cleveland where dr thomas rice did a myotomy on my 16 year old son. when we were there he showed us pictures of an eophagus like the one you describe. he said it was difficult but he was able to correct the s curve in that incident. I believe he said in that case he had to do an open myotomy due to the damage, but I could be wrong. in my opinion you owe it to yourself to see if he could help you...angela > > Seeking help > > > Hello Everyone, > I'm looking for advice, feeling desperate/scared and running out > of time and options. I was diagnosed with achalasia in 1987. I had > Witzel balloon dilitations in 1987 and 1992. I had botox injections > in 1992,1999, and Februrary 2007. > A barium esophagram in Jan 2006 revealed my esophagus was dilated > up to 10 centimeters. I was stunned. They call it a sigmoid > esophagus or a sink trp deformity because of the way is curves. Food > and liquids must come down through the curve and then back up before > getting to my stomach. The esophagus never clears so there is > increased risk of cancer and aspiration. But I have always been > basically asymtomatic. But I am having major problems swallowing > now. Have been drinking lots of Ensure and some soft solid food for > the past week. I need some kind of intervention very soon. > Dr. Chang, a thoracic surgeon at University of Michigan, is > recommeding an esophajectomy. He recommended that back in Jan. 2006 > but I opted for a botox. He says a myontomy won't work since my > esophagus is shaped in a J with that curve. My gastroenterologist, > Dr. Nostrandt at UM is willing to do more botox or stretching though > it is very difficult because my throat is so jammed with food and > liquid that even 4 days of fasting on clear liquids does not clear > the throat. He believes it is a highly unlikely that I can go the > rest of my life without an esophajectomy. Since I am 55, he thinks I > should do it now and get it over with while I am still relatively > young and healthy. I have an appointment on Friday for another > barium esophagram and consult with Dr. Chang. > Has anyone had or heard of someone who had a myontomy when their > throat is curved and it can no longer rely on gravity to bring food > into the stomach. I am wondering if it's possible to take out the > curve, have a myotomy and thus save your stomach (esophajectomy > means they form your stomach into an esophgus and take out most of > the esophagus - leaving you with basically no stomach.) > Or has anyone heard of any other alternative, innovative > treatments? > There was someone in Spain who got a new wind pipe by growing her > own stem cells on a donor wind pipe. I am afraid we are probably > many years away from growing a replacement esophagus. > If you've had an esophjectomy, how did it go? How bad was the > surgery and how have things gone since? > Thank you for any answers, advice, information, experience you > can share with me. And if I can help anyone with questions I am more > than happy to. > Rich > > > > > > Quote
Guest guest Posted February 19, 2009 Report Posted February 19, 2009 Hi Rich, Energy was a big issue for me as well. In fact it was one of the main reasons for me to go for the -ectomy. I wanted to have more energy, to be the wife and mother I wanted to be. I was 33 years old when I had to decide whether or not to go for the -ectomy. On one hand my family was the reason why I didn't want to go for it, on the other hand my family was the reason why I absolutely did want to do it. As I could barely eat, I didn't get the things in that I needed to get the energy levels up and therefore I couldn't be the fun mum to play with the boys etc. But all of that has changed now! We are going away for a few days next week and we are so much looking forward to it. It will be the first holiday where I will be a " normal " mum. A J-tube is another word for a jejunostomy. It's a feeding tube. When they perform the -ectomy they make a tiny hole in your belly and small intestines (the part that's called the jejunum) and they place a small size tube in it. With this tube they can feed you during the days after surgery that you cannot eat. Usually the tube is used for a few days/weeks only and it usually can be taken out within about 6 weeks (doesn't hurt). Unfortunately I had a complication that was pretty severe. I had severe scar tissueing at in the adhesion area (where the stomach is sewed to the little bit of esophagus left in the neck). This scar tissue caused a narrowing that made eating quite similar to my achalasia days. I sometimes wasn't even able to drink a sip. Of course it was a good thing to have that tube available. I have had the tube in form March 31st 2008 untill Feb. 7th 2009. Seems like a long time and sure it was a long time. On the other hand I can honestly say that I was so glad to have that thing in. It made sure I didn't freak out when things couldn't be swallowed anymore. I have had plenty dilatations to push the tissue aside, that didn't work great for me, I would need another about 50 or more to get the issue resolved. Therefore they used a new technique and cut the tissue away. This is now about 6 weeks ago. I can now feel the tissue growing back again, but only slowly. I am still able to swallow everything, it's just that I can feel it not going down as easily as it should. But that's no big deal, in 2 weeks they will cut the tissue away again. Now you shouldn't get scared from what I wrote about the scar tissue. This doesn't happen very often, they have only a handfull of cases like mine over at my hospital, though they perform -ectomies very very often. Furthermore it's something that can be resolved. And like I wrote before: I don't think anyone gets away with an -ectomy without complications. If you are aware of that and you are prepared to go through a year of fighting, you can make it. If you go for it, be positive and strong, know that things might work out somewhat different than you expected, but also know that it will turn out OK in the end. It's worth it, like I said before, but only if there are no other options (and whether or not you have other options is up to you and experienced docs to decide). My myotomies didn't make the -ectomy more difficult to perform. My first myotomy was performed over 13 years ago and back then lap. surgery was something new and I had an open surgery. When they started off my second myotomy laparoscopically with a robot 2 years ago, they had to stop and alter surgery into an open one again. This since I had too much scar tissue in my body and it was dangerous to proceed with the lap. surgery. They had to separate spleen and liver since they had grown together. Therefore they decided not to perform my -ectomy lap., but I had an open -ectomy. That's no big deal. They now had to remove my spleen as well, since it had grown together with the liver again. But I don't notice it being gone. My surgeon told me my -ectomy wasn't harder to perform than any other -ectomy. Perhaps it's even easier to perform an -ectomy on us, since we don't have cancer and they don't have to look for tumors to be removed and blood that may not be spread since it can spread the tumor cells... I bet the scar tissue caused him some trouble, but not too much, I think it only had the surgery last a bit longer. At the moment I eat at least 6 meals a day, but I should try to eat 8. I don't have enough time to do so, though. I should get in at least 2000/2500 kcal, but on my best days I get in about 1400. It's because the bit of stomach that I've got left is only so small and indeed the dumping causes me not being able to eat specific types of food (with many calories). Yet, I have so much energy! I bet that is, since I watch carefully what I eat. I eat healthy (but nice) foods. I eat lots of fruit, lots of bread and I have dinner 2x a day (toddler portions). I now eat the vitamins and minerals the body needs, not as much as I should, but enough. You know, my body wasn't used to getting this type of food in and it really really works miracles for me to now be able to eat this all. I could chose to have some chocolate (only a tiny bit, say 4 bites, or I get dumping), but I don't like it anymore and I know it won't help me feeling better. I rather take a banana or an apple. In the evening I get hungry as well of course. I love having some cheese with red wine in the evening and it contains loads of calories and it's " healthy " as well! The dumping is something you learn to live with. Everyone is different and for everyone different things work to avoid getting dumping issues. You learn quickly, believe me. Furthermore you really don't like the stuff that causes dumping anymore, even if it was your favorite food before, your body tells you it's a no-go. I cannot have sugar together with warm food/drinks anymore. So no more sugar in my coffee, no more biscuits and cake with coffee, no more pancakes with marmelade. I cannot have peanuts, so no more peanutbutter as well. I cannot have soda's with sugar anymore, so I cannot drink beer or coke. I cannot have white wine, but I can have red. I can absolutely not have any milk products, except cheese (that is since cheese doesn't have lactose in it and the other products do). In the beginning I couldn't have pasta anymore, but nowadays I can. I may not drink too much with my food, that causes dumping as well. During dinner I don't have more than about 5/6 sips of water. Your system does alter in time, though most of the things I cannot have right now will stay this way, since it now has almost been a year since the surgery. The most important thing is to not have that last bite of food when you feel you shouldn't. If you have that last bite, boy oh boy, do you regret it afterwards... This sounds bad, but honestly it isn't. It's different in every person what you can and cannot have. And like I said: you really really don't want that type of food anymore! There are plenty other things you can have and you really appreciate being able to swallow that all! And think of the other people that need to stick to some type of diet: diabetics, allergies etc. They live a normal life as well and so do I. Oh, and about the chewing, I don't have to chew a bit more than anyone else in the world has to, it all slides down marvellous (well, as long as there is no scar tissue). My life has improved so much, that I really am glad I did it, it was worth the whole cr... You are right: this group is so cool! It has helped an supported me so much when I had to decide what to do myself and then again when I didn't know how to deal with the complications. I am so glad to have found it. If you have any other questions that I could answer for you, please let me know. I know how hard this must be on you, since I've been there myself. Isabella ________________________________ From: richardbailhe <rbailhe@...> achalasia Sent: Thursday, February 19, 2009 3:00:15 AM Subject: Re: Seeking help Hi Isabella, Wow. 2 open myotomies and the -ectomy with complications. You've been through so much yet it's so heartening to read how you are feeling now - more energy than in 15 years....Energy is an issue for me too. What is a J-tube?? Did the myotomies make the -ectomy more difficult to perform? Do you have to eat six small meals per day and chew very carefully? Have you had any problems with dumping? Thanks so much for answering my questions. This whole group is so cool. Rich > > Hi , > > Sorry to hear the trouble you're in. I can imagine this being very hard on you both fysically and mentally. It's hard to decide for which treatment you should opt. > > I have had them all: balloon dilatations, bougie dilatations, Botox, 2 open myotomies and finally last year the -ectomy. > > I can only speak from my own experience and with that I can give you some information concerning the -ectomy. > > If I had to do it all over again, I would. But only if there were no other options available or if chances of reaching a positive result were too little. This was the case in my situation, therefore I had my -ectomy done. > > If you are otherwise in good health, the -ectomy will be hard to deal with, but not life threatening. I believe there is hardly anyone that didn't have to deal with issues/complication s post - ectomy. I dealt with severe scar tissue (had over 20 dilatations to push it aside and they cut the tissue away 6 weeks ago, treatment will be repeated in 2 weeks, but I'm fine now) and I lost my voice for over 4 months (I could speak, but like I was having the worst cold and very soft). My surgery was done March 31st last and I got rid of my J-tube 2 weeks ago. > > I am getting stronger by the day. I am able to work very very hard again and I can swallow about anything. Sure there are issues, but nobody ever told me it was going to be easy. Nowadays I am very very happy with my " new " esophagus. It brings me joy and energy, I have more energy than I've had in over 15 years! > > It's worth it, though it's a long road. Bear in mind that it's only worth it, if there's no other way to deal with things. But also bear in mind, that it's not the end of the world to get your esophagus removed, you can live a pretty normal life without that d... thing! > > Good luck with whatever decision you make and if you have any questions, please don't hesitate to ask. > > Isabella > > > > > ____________ _________ _________ __ > From: richardbailhe <rbailhe@... > > achalasia@grou ps.com > Sent: Wednesday, February 18, 2009 3:11:33 AM > Subject: Seeking help > > > Hello Everyone, > I'm looking for advice, feeling desperate/scared and running out > of time and options. I was diagnosed with achalasia in 1987. I had > Witzel balloon dilitations in 1987 and 1992. I had botox injections > in 1992,1999, and Februrary 2007. > A barium esophagram in Jan 2006 revealed my esophagus was dilated > up to 10 centimeters. I was stunned. They call it a sigmoid > esophagus or a sink trp deformity because of the way is curves. Food > and liquids must come down through the curve and then back up before > getting to my stomach. The esophagus never clears so there is > increased risk of cancer and aspiration. But I have always been > basically asymtomatic. But I am having major problems swallowing > now. Have been drinking lots of Ensure and some soft solid food for > the past week. I need some kind of intervention very soon. > Dr. Chang, a thoracic surgeon at University of Michigan, is > recommeding an esophajectomy. He recommended that back in Jan. 2006 > but I opted for a botox. He says a myontomy won't work since my > esophagus is shaped in a J with that curve. My gastroenterologist, > Dr. Nostrandt at UM is willing to do more botox or stretching though > it is very difficult because my throat is so jammed with food and > liquid that even 4 days of fasting on clear liquids does not clear > the throat. He believes it is a highly unlikely that I can go the > rest of my life without an esophajectomy. Since I am 55, he thinks I > should do it now and get it over with while I am still relatively > young and healthy. I have an appointment on Friday for another > barium esophagram and consult with Dr. Chang. > Has anyone had or heard of someone who had a myontomy when their > throat is curved and it can no longer rely on gravity to bring food > into the stomach. I am wondering if it's possible to take out the > curve, have a myotomy and thus save your stomach (esophajectomy > means they form your stomach into an esophgus and take out most of > the esophagus - leaving you with basically no stomach.) > Or has anyone heard of any other alternative, innovative > treatments? > There was someone in Spain who got a new wind pipe by growing her > own stem cells on a donor wind pipe. I am afraid we are probably > many years away from growing a replacement esophagus. > If you've had an esophjectomy, how did it go? How bad was the > surgery and how have things gone since? > Thank you for any answers, advice, information, experience you > can share with me. And if I can help anyone with questions I am more > than happy to. > Rich > > > > > > > > Quote
Guest guest Posted February 19, 2009 Report Posted February 19, 2009 Marin, It was great and very helpful talking to you today. I have more courage now! Thanks again. Rich Quote
Guest guest Posted February 19, 2009 Report Posted February 19, 2009 Hi Isabella, Thank you so much for all this information. And you are a good writer too. I almost felt like I was reading a few pages of a good novel!! Really it's invaluable to me. I meet with a surgeon (Dr. Chang) from U-M tomorrow and will be sending out my records to Dr. Rice and at least one more Doc for 2nd and 3rd opinions. It's so encouraging to know there are others going through what you are going through and have come through it so well. Thanks you again! Rich > > > > Hi , > > > > Sorry to hear the trouble you're in. I can imagine this being very > hard on you both fysically and mentally. It's hard to decide for > which treatment you should opt. > > > > I have had them all: balloon dilatations, bougie dilatations, > Botox, 2 open myotomies and finally last year the -ectomy. > > > > I can only speak from my own experience and with that I can give > you some information concerning the -ectomy. > > > > If I had to do it all over again, I would. But only if there were > no other options available or if chances of reaching a positive > result were too little. This was the case in my situation, therefore > I had my -ectomy done. > > > > If you are otherwise in good health, the -ectomy will be hard to > deal with, but not life threatening. I believe there is hardly > anyone that didn't have to deal with issues/complication s post - > ectomy. I dealt with severe scar tissue (had over 20 dilatations to > push it aside and they cut the tissue away 6 weeks ago, treatment > will be repeated in 2 weeks, but I'm fine now) and I lost my voice > for over 4 months (I could speak, but like I was having the worst > cold and very soft). My surgery was done March 31st last and I got > rid of my J-tube 2 weeks ago. > > > > I am getting stronger by the day. I am able to work very very hard > again and I can swallow about anything. Sure there are issues, but > nobody ever told me it was going to be easy. Nowadays I am very very > happy with my " new " esophagus. It brings me joy and energy, I have > more energy than I've had in over 15 years! > > > > It's worth it, though it's a long road. Bear in mind that it's > only worth it, if there's no other way to deal with things. But also > bear in mind, that it's not the end of the world to get your > esophagus removed, you can live a pretty normal life without that > d... thing! > > > > Good luck with whatever decision you make and if you have any > questions, please don't hesitate to ask. > > > > Isabella > > > > > > > > > > ____________ _________ _________ __ > > From: richardbailhe <rbailhe@ > > > achalasia@grou ps.com > > Sent: Wednesday, February 18, 2009 3:11:33 AM > > Subject: Seeking help > > > > > > Hello Everyone, > > I'm looking for advice, feeling desperate/scared and running out > > of time and options. I was diagnosed with achalasia in 1987. I had > > Witzel balloon dilitations in 1987 and 1992. I had botox > injections > > in 1992,1999, and Februrary 2007. > > A barium esophagram in Jan 2006 revealed my esophagus was dilated > > up to 10 centimeters. I was stunned. They call it a sigmoid > > esophagus or a sink trp deformity because of the way is curves. > Food > > and liquids must come down through the curve and then back up > before > > getting to my stomach. The esophagus never clears so there is > > increased risk of cancer and aspiration. But I have always been > > basically asymtomatic. But I am having major problems swallowing > > now. Have been drinking lots of Ensure and some soft solid food > for > > the past week. I need some kind of intervention very soon. > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > recommeding an esophajectomy. He recommended that back in Jan. > 2006 > > but I opted for a botox. He says a myontomy won't work since my > > esophagus is shaped in a J with that curve. My gastroenterologist, > > Dr. Nostrandt at UM is willing to do more botox or stretching > though > > it is very difficult because my throat is so jammed with food and > > liquid that even 4 days of fasting on clear liquids does not clear > > the throat. He believes it is a highly unlikely that I can go the > > rest of my life without an esophajectomy. Since I am 55, he thinks > I > > should do it now and get it over with while I am still relatively > > young and healthy. I have an appointment on Friday for another > > barium esophagram and consult with Dr. Chang. > > Has anyone had or heard of someone who had a myontomy when their > > throat is curved and it can no longer rely on gravity to bring > food > > into the stomach. I am wondering if it's possible to take out the > > curve, have a myotomy and thus save your stomach (esophajectomy > > means they form your stomach into an esophgus and take out most of > > the esophagus - leaving you with basically no stomach.) > > Or has anyone heard of any other alternative, innovative > > treatments? > > There was someone in Spain who got a new wind pipe by growing her > > own stem cells on a donor wind pipe. I am afraid we are probably > > many years away from growing a replacement esophagus. > > If you've had an esophjectomy, how did it go? How bad was the > > surgery and how have things gone since? > > Thank you for any answers, advice, information, experience you > > can share with me. And if I can help anyone with questions I am > more > > than happy to. > > Rich > > > > > > > > > > > > > > > > Quote
Guest guest Posted February 19, 2009 Report Posted February 19, 2009 Rich:  In paying Isabella such a nice compliment about her writing, you wrote:  " And you are a good writer too. I almost felt like I was reading a few pages of a good novel!! "  You should know that English is our dear Isabella's second or third language.  To add in my two cents, another dear friend of mine from this Board, also overseas, was referring to me when she wrote:  " I do not believe that I had a J shape at the bottom, but I know of some who do, who cope without an 'ectomy. "  I sought many opinions, all recommending -ectomy, before hearing the one I wanted to hear, that there was a chance that I could manage without having the operation. I keep myself closely monitored and am careful as to how I eat. Doesn't mean I'm right. I might still need the -ectomy, but it was two and a half years ago that Dr. Richter told me, with a note of arrogance, that in a year I'll come crawling back for an -ectomy.   You have received wonderful and caring advice from many on the Board. Seek out as many opinions as you can from the best doctors you can consult with. Then make your own informed decision.  ________________________________ From: richardbailhe <rbailhe@...> achalasia Sent: Thursday, February 19, 2009 9:37:31 PM Subject: Re: Seeking help Hi Isabella, Thank you so much for all this information. And you are a good writer too. I almost felt like I was reading a few pages of a good novel!! Really it's invaluable to me. I meet with a surgeon (Dr. Chang) from U-M tomorrow and will be sending out my records to Dr. Rice and at least one more Doc for 2nd and 3rd opinions. It's so encouraging to know there are others going through what you are going through and have come through it so well. Thanks you again! Rich > > > > Hi , > > > > Sorry to hear the trouble you're in. I can imagine this being very > hard on you both fysically and mentally. It's hard to decide for > which treatment you should opt. > > > > I have had them all: balloon dilatations, bougie dilatations, > Botox, 2 open myotomies and finally last year the -ectomy. > > > > I can only speak from my own experience and with that I can give > you some information concerning the -ectomy. > > > > If I had to do it all over again, I would. But only if there were > no other options available or if chances of reaching a positive > result were too little. This was the case in my situation, therefore > I had my -ectomy done. > > > > If you are otherwise in good health, the -ectomy will be hard to > deal with, but not life threatening. I believe there is hardly > anyone that didn't have to deal with issues/complication s post - > ectomy. I dealt with severe scar tissue (had over 20 dilatations to > push it aside and they cut the tissue away 6 weeks ago, treatment > will be repeated in 2 weeks, but I'm fine now) and I lost my voice > for over 4 months (I could speak, but like I was having the worst > cold and very soft). My surgery was done March 31st last and I got > rid of my J-tube 2 weeks ago. > > > > I am getting stronger by the day. I am able to work very very hard > again and I can swallow about anything. Sure there are issues, but > nobody ever told me it was going to be easy. Nowadays I am very very > happy with my " new " esophagus. It brings me joy and energy, I have > more energy than I've had in over 15 years! > > > > It's worth it, though it's a long road. Bear in mind that it's > only worth it, if there's no other way to deal with things. But also > bear in mind, that it's not the end of the world to get your > esophagus removed, you can live a pretty normal life without that > d... thing! > > > > Good luck with whatever decision you make and if you have any > questions, please don't hesitate to ask. > > > > Isabella > > > > > > > > > > ____________ _________ _________ __ > > From: richardbailhe <rbailhe@ > > > achalasia@grou ps.com > > Sent: Wednesday, February 18, 2009 3:11:33 AM > > Subject: Seeking help > > > > > > Hello Everyone, > > I'm looking for advice, feeling desperate/scared and running out > > of time and options. I was diagnosed with achalasia in 1987. I had > > Witzel balloon dilitations in 1987 and 1992. I had botox > injections > > in 1992,1999, and Februrary 2007. > > A barium esophagram in Jan 2006 revealed my esophagus was dilated > > up to 10 centimeters. I was stunned. They call it a sigmoid > > esophagus or a sink trp deformity because of the way is curves. > Food > > and liquids must come down through the curve and then back up > before > > getting to my stomach. The esophagus never clears so there is > > increased risk of cancer and aspiration. But I have always been > > basically asymtomatic. But I am having major problems swallowing > > now. Have been drinking lots of Ensure and some soft solid food > for > > the past week. I need some kind of intervention very soon. > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > recommeding an esophajectomy. He recommended that back in Jan. > 2006 > > but I opted for a botox. He says a myontomy won't work since my > > esophagus is shaped in a J with that curve. My gastroenterologist, > > Dr. Nostrandt at UM is willing to do more botox or stretching > though > > it is very difficult because my throat is so jammed with food and > > liquid that even 4 days of fasting on clear liquids does not clear > > the throat. He believes it is a highly unlikely that I can go the > > rest of my life without an esophajectomy. Since I am 55, he thinks > I > > should do it now and get it over with while I am still relatively > > young and healthy. I have an appointment on Friday for another > > barium esophagram and consult with Dr. Chang. > > Has anyone had or heard of someone who had a myontomy when their > > throat is curved and it can no longer rely on gravity to bring > food > > into the stomach. I am wondering if it's possible to take out the > > curve, have a myotomy and thus save your stomach (esophajectomy > > means they form your stomach into an esophgus and take out most of > > the esophagus - leaving you with basically no stomach.) > > Or has anyone heard of any other alternative, innovative > > treatments? > > There was someone in Spain who got a new wind pipe by growing her > > own stem cells on a donor wind pipe. I am afraid we are probably > > many years away from growing a replacement esophagus. > > If you've had an esophjectomy, how did it go? How bad was the > > surgery and how have things gone since? > > Thank you for any answers, advice, information, experience you > > can share with me. And if I can help anyone with questions I am > more > > than happy to. > > Rich > > > > > > > > > > > > > > > > Quote
Guest guest Posted February 20, 2009 Report Posted February 20, 2009 Hi, Rich,         Sounds like you are really going through it! In my case, with no motility and with food almost jet-propelling out of my nose a split second after I ate or drank it, I found this great group and I decided, based on all the posts I'd read, and almost all of the great articles here, too, a lot sent in by Notan, I went straight for the myotomy, skipped the botox (which was suggested) and the dilations. Somehow the idea of being dilated, when all the photos I saw showed esophagi slipping and sloping down, with a bird-beak connection, just didn't sound prudent to me.          I will be reading your posts and I hope you can find your best solution soon, and get back to enjoying eating, drinking and all other activities...!          Deborah, at the beach Quote
Guest guest Posted February 20, 2009 Report Posted February 20, 2009 You guys made me blush. Love, Isabella ________________________________ From: RICHARD FRIEDMAN <cynmark24@...> achalasia Sent: Friday, February 20, 2009 4:05:37 AM Subject: Re: Re: Seeking help Rich:  In paying Isabella such a nice compliment about her writing, you wrote:  " And you are a good writer too. I almost felt like I was reading a few pages of a good novel!! "  You should know that English is our dear Isabella's second or third language.  To add in my two cents, another dear friend of mine from this Board, also overseas, was referring to me when she wrote:  " I do not believe that I had a J shape at the bottom, but I know of some who do, who cope without an 'ectomy. "  I sought many opinions, all recommending -ectomy, before hearing the one I wanted to hear, that there was a chance that I could manage without having the operation. I keep myself closely monitored and am careful as to how I eat. Doesn't mean I'm right. I might still need the -ectomy, but it was two and a half years ago that Dr. Richter told me, with a note of arrogance, that in a year I'll come crawling back for an -ectomy.   You have received wonderful and caring advice from many on the Board. Seek out as many opinions as you can from the best doctors you can consult with. Then make your own informed decision.  ____________ _________ _________ __ From: richardbailhe <rbailhemea (DOT) org> achalasia@grou ps.com Sent: Thursday, February 19, 2009 9:37:31 PM Subject: Re: Seeking help Hi Isabella, Thank you so much for all this information. And you are a good writer too. I almost felt like I was reading a few pages of a good novel!! Really it's invaluable to me. I meet with a surgeon (Dr. Chang) from U-M tomorrow and will be sending out my records to Dr. Rice and at least one more Doc for 2nd and 3rd opinions. It's so encouraging to know there are others going through what you are going through and have come through it so well. Thanks you again! Rich > > > > Hi , > > > > Sorry to hear the trouble you're in. I can imagine this being very > hard on you both fysically and mentally. It's hard to decide for > which treatment you should opt. > > > > I have had them all: balloon dilatations, bougie dilatations, > Botox, 2 open myotomies and finally last year the -ectomy. > > > > I can only speak from my own experience and with that I can give > you some information concerning the -ectomy. > > > > If I had to do it all over again, I would. But only if there were > no other options available or if chances of reaching a positive > result were too little. This was the case in my situation, therefore > I had my -ectomy done. > > > > If you are otherwise in good health, the -ectomy will be hard to > deal with, but not life threatening. I believe there is hardly > anyone that didn't have to deal with issues/complication s post - > ectomy. I dealt with severe scar tissue (had over 20 dilatations to > push it aside and they cut the tissue away 6 weeks ago, treatment > will be repeated in 2 weeks, but I'm fine now) and I lost my voice > for over 4 months (I could speak, but like I was having the worst > cold and very soft). My surgery was done March 31st last and I got > rid of my J-tube 2 weeks ago. > > > > I am getting stronger by the day. I am able to work very very hard > again and I can swallow about anything. Sure there are issues, but > nobody ever told me it was going to be easy. Nowadays I am very very > happy with my " new " esophagus. It brings me joy and energy, I have > more energy than I've had in over 15 years! > > > > It's worth it, though it's a long road. Bear in mind that it's > only worth it, if there's no other way to deal with things. But also > bear in mind, that it's not the end of the world to get your > esophagus removed, you can live a pretty normal life without that > d... thing! > > > > Good luck with whatever decision you make and if you have any > questions, please don't hesitate to ask. > > > > Isabella > > > > > > > > > > ____________ _________ _________ __ > > From: richardbailhe <rbailhe@ > > > achalasia@grou ps.com > > Sent: Wednesday, February 18, 2009 3:11:33 AM > > Subject: Seeking help > > > > > > Hello Everyone, > > I'm looking for advice, feeling desperate/scared and running out > > of time and options. I was diagnosed with achalasia in 1987. I had > > Witzel balloon dilitations in 1987 and 1992. I had botox > injections > > in 1992,1999, and Februrary 2007. > > A barium esophagram in Jan 2006 revealed my esophagus was dilated > > up to 10 centimeters. I was stunned. They call it a sigmoid > > esophagus or a sink trp deformity because of the way is curves. > Food > > and liquids must come down through the curve and then back up > before > > getting to my stomach. The esophagus never clears so there is > > increased risk of cancer and aspiration. But I have always been > > basically asymtomatic. But I am having major problems swallowing > > now. Have been drinking lots of Ensure and some soft solid food > for > > the past week. I need some kind of intervention very soon. > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > recommeding an esophajectomy. He recommended that back in Jan. > 2006 > > but I opted for a botox. He says a myontomy won't work since my > > esophagus is shaped in a J with that curve. My gastroenterologist, > > Dr. Nostrandt at UM is willing to do more botox or stretching > though > > it is very difficult because my throat is so jammed with food and > > liquid that even 4 days of fasting on clear liquids does not clear > > the throat. He believes it is a highly unlikely that I can go the > > rest of my life without an esophajectomy. Since I am 55, he thinks > I > > should do it now and get it over with while I am still relatively > > young and healthy. I have an appointment on Friday for another > > barium esophagram and consult with Dr. Chang. > > Has anyone had or heard of someone who had a myontomy when their > > throat is curved and it can no longer rely on gravity to bring > food > > into the stomach. I am wondering if it's possible to take out the > > curve, have a myotomy and thus save your stomach (esophajectomy > > means they form your stomach into an esophgus and take out most of > > the esophagus - leaving you with basically no stomach.) > > Or has anyone heard of any other alternative, innovative > > treatments? > > There was someone in Spain who got a new wind pipe by growing her > > own stem cells on a donor wind pipe. I am afraid we are probably > > many years away from growing a replacement esophagus. > > If you've had an esophjectomy, how did it go? How bad was the > > surgery and how have things gone since? > > Thank you for any answers, advice, information, experience you > > can share with me. And if I can help anyone with questions I am > more > > than happy to. > > Rich > > > > > > > > > > > > > > > > Quote
Guest guest Posted February 23, 2009 Report Posted February 23, 2009 , Could you give me some of your history? When you were diagnosed and what you have had done so far? Your age, etc. You are the only person I've met so far with that J-shape where gravity is no longer working for you. Thanks, Rich > > > > > > Hi , > > > > > > Sorry to hear the trouble you're in. I can imagine this being > very > > hard on you both fysically and mentally. It's hard to decide for > > which treatment you should opt. > > > > > > I have had them all: balloon dilatations, bougie dilatations, > > Botox, 2 open myotomies and finally last year the -ectomy. > > > > > > I can only speak from my own experience and with that I can give > > you some information concerning the -ectomy. > > > > > > If I had to do it all over again, I would. But only if there > were > > no other options available or if chances of reaching a positive > > result were too little. This was the case in my situation, > therefore > > I had my -ectomy done. > > > > > > If you are otherwise in good health, the -ectomy will be hard to > > deal with, but not life threatening. I believe there is hardly > > anyone that didn't have to deal with issues/complication s post - > > ectomy. I dealt with severe scar tissue (had over 20 dilatations > to > > push it aside and they cut the tissue away 6 weeks ago, treatment > > will be repeated in 2 weeks, but I'm fine now) and I lost my voice > > for over 4 months (I could speak, but like I was having the worst > > cold and very soft). My surgery was done March 31st last and I got > > rid of my J-tube 2 weeks ago. > > > > > > I am getting stronger by the day. I am able to work very very > hard > > again and I can swallow about anything. Sure there are issues, but > > nobody ever told me it was going to be easy. Nowadays I am very > very > > happy with my " new " esophagus. It brings me joy and energy, I have > > more energy than I've had in over 15 years! > > > > > > It's worth it, though it's a long road. Bear in mind that it's > > only worth it, if there's no other way to deal with things. But > also > > bear in mind, that it's not the end of the world to get your > > esophagus removed, you can live a pretty normal life without that > > d... thing! > > > > > > Good luck with whatever decision you make and if you have any > > questions, please don't hesitate to ask. > > > > > > Isabella > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: richardbailhe <rbailhe@ > > > > achalasia@grou ps.com > > > Sent: Wednesday, February 18, 2009 3:11:33 AM > > > Subject: Seeking help > > > > > > > > > Hello Everyone, > > > I'm looking for advice, feeling desperate/scared and running out > > > of time and options. I was diagnosed with achalasia in 1987. I > had > > > Witzel balloon dilitations in 1987 and 1992. I had botox > > injections > > > in 1992,1999, and Februrary 2007. > > > A barium esophagram in Jan 2006 revealed my esophagus was > dilated > > > up to 10 centimeters. I was stunned. They call it a sigmoid > > > esophagus or a sink trp deformity because of the way is curves. > > Food > > > and liquids must come down through the curve and then back up > > before > > > getting to my stomach. The esophagus never clears so there is > > > increased risk of cancer and aspiration. But I have always been > > > basically asymtomatic. But I am having major problems swallowing > > > now. Have been drinking lots of Ensure and some soft solid food > > for > > > the past week. I need some kind of intervention very soon. > > > Dr. Chang, a thoracic surgeon at University of Michigan, is > > > recommeding an esophajectomy. He recommended that back in Jan. > > 2006 > > > but I opted for a botox. He says a myontomy won't work since my > > > esophagus is shaped in a J with that curve. My > gastroenterologist, > > > Dr. Nostrandt at UM is willing to do more botox or stretching > > though > > > it is very difficult because my throat is so jammed with food > and > > > liquid that even 4 days of fasting on clear liquids does not > clear > > > the throat. He believes it is a highly unlikely that I can go > the > > > rest of my life without an esophajectomy. Since I am 55, he > thinks > > I > > > should do it now and get it over with while I am still > relatively > > > young and healthy. I have an appointment on Friday for another > > > barium esophagram and consult with Dr. Chang. > > > Has anyone had or heard of someone who had a myontomy when their > > > throat is curved and it can no longer rely on gravity to bring > > food > > > into the stomach. I am wondering if it's possible to take out > the > > > curve, have a myotomy and thus save your stomach (esophajectomy > > > means they form your stomach into an esophgus and take out most > of > > > the esophagus - leaving you with basically no stomach.) > > > Or has anyone heard of any other alternative, innovative > > > treatments? > > > There was someone in Spain who got a new wind pipe by growing > her > > > own stem cells on a donor wind pipe. I am afraid we are probably > > > many years away from growing a replacement esophagus. > > > If you've had an esophjectomy, how did it go? How bad was the > > > surgery and how have things gone since? > > > Thank you for any answers, advice, information, experience you > > > can share with me. And if I can help anyone with questions I am > > more > > > than happy to. > > > Rich > > > > > > > > > > > > > > > > > > > > > > > > Quote
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