Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 I used to belong to this group a long time ago. I am a 40 year old male on disability due to Achalasia and my treatments. I have had my esophagus removed and replaced with my stomach. Then I had 4 infections because I could not hold my weight 180 pounds down to 115 pounds and I needed a j-tube put back in again this is my third. I am scheduled for surgery on 3/6/08 to reroute the food I eat due to massive acid reflux. I have a badly burned mouth and have lost 7 teeth I have not aspirated any acid that would be an emergency needing possible removal of a lung. In 2000 I had a badly dilated esophagus it was so wide that it was attaching itself to my lungs. It was twisted and I could not swallow anything at all. The esophagectomy was difficult to get through then when I could not eat again I fooled everyone went to work as an ICU RN by taking 4 crushed multivitamins per day and 8 cups of coffee just to get by. Then I ended up in the ICU do to weight loss and failure to thrive. If anyone is considerng a transhiatial esophagectomy or a laproscopic esophagectomy, think twice these operations were intended for people who are not supposed to live long thus all the complications are not supposed to come. If anyone has a j or a g tube contact the Oley Foundation for info on tubes and nutrution at www.oley.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 I am sorry to hear of all of your problems and recurring troubles.That sounds horrible!Are you dealing with a specialist with all this? I dont know if I am understanding your post correctly or not so correct me if I am wrong. Are you saying that those who need a esophectomy done should not have it done cause its not meant for long term and will suffer with complications as you have? If this is the case then why have many people had it done and are doing fine with no complications as you have indicated you are having? Could this just be a rare incident that you are having these isues cause I havent heard nothing of this before.I am confused...please do explain more so I can understand what your saying if this is incorrect. People are suffering before the surgery and cant continue to live that way so........What else is one to do? Ihope your health will get better and things will soon start to look up for you.This is not how one should have to live life.I can not imagine......... Tonia > > I used to belong to this group a long time ago. I am a 40 year old > male on disability due to Achalasia and my treatments. I have had my > esophagus removed and replaced with my stomach. Then I had 4 > infections because I could not hold my weight 180 pounds down to 115 > pounds and I needed a j-tube put back in again this is my third. > > I am scheduled for surgery on 3/6/08 to reroute the food I eat due to > massive acid reflux. I have a badly burned mouth and have lost 7 > teeth I have not aspirated any acid that would be an emergency > needing possible removal of a lung. In 2000 I had a badly dilated > esophagus it was so wide that it was attaching itself to my lungs. > It was twisted and I could not swallow anything at all. The > esophagectomy was difficult to get through then when I could not eat > again I fooled everyone went to work as an ICU RN by taking 4 crushed > multivitamins per day and 8 cups of coffee just to get by. Then I > ended up in the ICU do to weight loss and failure to thrive. > > If anyone is considerng a transhiatial esophagectomy or a laproscopic > esophagectomy, think twice these operations were intended for people > who are not supposed to live long thus all the complications are not > supposed to come. If anyone has a j or a g tube contact the Oley > Foundation for info on tubes and nutrution at www.oley.org > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Hi, Wow, you've been through the lot... I am really sorry for you... I am awaiting my transhiatial esophagectomy, I will have it done probably in April. I am totally aware of all risks and possible damage, even mortalitly rates. I have weighed my decision carefully and I can so much understand you warning achalasians like me for this huge step. Thank you! You know, I was sure the moment would come, that finally an -ectomy achalasian would write a non-success story here on the board (need to add, that I was afraid that it would make me doubt again, but thank God it doesn't). I find it astoneshing how many success -ectomy achalasians we have here on the board. I find it a very good thing that you write your complications and trouble now. As you do need to take your time to think your upcoming surgery over very carefully when it's a major surgery like the -ectomy and you need to get aware of every risk and how you feel towards it. Whether you are willing to take the risk or not; whether the evt. complications are better to live with than the way you are right now etc. etc. Like I said before I weighed my decision (carefully and for months and months and months - I drove everyone on the board crazy I guess). I am (and was) aware of the complications you mention and I discussed them with my surgeon. I stopped worrying (I am on a 7 month waiting list, if you keep doubting things, you go crazy) and feel confident and assured, something that is important while facing such major surgery. I find it very important that other -ectomy patients take their time to check and weigh too. Weighing each and every possible detail, as you should know upfront what you might regret later. It's good to have both the success stories and the non-successes in mind while weighing. Thanks again and I wish you so much luck on your next surgery. Keeping my fingers crossed it'll finally be your last surgery and things will finally improve for you. Love, Isabella Back in the Group I used to belong to this group a long time ago. I am a 40 year old male on disability due to Achalasia and my treatments. I have had my esophagus removed and replaced with my stomach. Then I had 4 infections because I could not hold my weight 180 pounds down to 115 pounds and I needed a j-tube put back in again this is my third. I am scheduled for surgery on 3/6/08 to reroute the food I eat due to massive acid reflux. I have a badly burned mouth and have lost 7 teeth I have not aspirated any acid that would be an emergency needing possible removal of a lung. In 2000 I had a badly dilated esophagus it was so wide that it was attaching itself to my lungs. It was twisted and I could not swallow anything at all. The esophagectomy was difficult to get through then when I could not eat again I fooled everyone went to work as an ICU RN by taking 4 crushed multivitamins per day and 8 cups of coffee just to get by. Then I ended up in the ICU do to weight loss and failure to thrive. If anyone is considerng a transhiatial esophagectomy or a laproscopic esophagectomy, think twice these operations were intended for people who are not supposed to live long thus all the complications are not supposed to come. If anyone has a j or a g tube contact the Oley Foundation for info on tubes and nutrution at www.oley.org Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi there....do you know Donna Noble through the Oley Foundation? She is their "rep" here in Columbus, Ohio and is a mother of a deceased (so sad) mitochondrial disease boy, (www.caringbridge.org/oh/kyle)....I know her as my daughter has mitochondrial disease. Just curious...the world really is a small place...kk Kris Kovalcikmkovalci@...caringbridge.org/visit/elliegallery.mac.com/kovalciks/100016www.umdf.org On Jan 13, 2008, at 9:38 AM, jmr12667 wrote:I used to belong to this group a long time ago. I am a 40 year old male on disability due to Achalasia and my treatments. I have had my esophagus removed and replaced with my stomach. Then I had 4 infections because I could not hold my weight 180 pounds down to 115 pounds and I needed a j-tube put back in again this is my third. I am scheduled for surgery on 3/6/08 to reroute the food I eat due to massive acid reflux. I have a badly burned mouth and have lost 7 teeth I have not aspirated any acid that would be an emergency needing possible removal of a lung. In 2000 I had a badly dilated esophagus it was so wide that it was attaching itself to my lungs. It was twisted and I could not swallow anything at all. The esophagectomy was difficult to get through then when I could not eat again I fooled everyone went to work as an ICU RN by taking 4 crushed multivitamins per day and 8 cups of coffee just to get by. Then I ended up in the ICU do to weight loss and failure to thrive. If anyone is considerng a transhiatial esophagectomy or a laproscopic esophagectomy, think twice these operations were intended for people who are not supposed to live long thus all the complications are not supposed to come. If anyone has a j or a g tube contact the Oley Foundation for info on tubes and nutrution at www.oley.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Dear Isabella, I just want to comment on your gracious reply. And also to take the opportunity to say that I think that your attitude is an example to all of us. You have shown us how to work through your vulnerability and arrive at a place of courage. Thank you for the valuable contribution that you always make to this Group. Best Wishes and love to you from Ann in England XX Isabella Arnold <arnoldisabella@...> wrote: Hi, Wow, you've been through the lot... I am really sorry for you... I am awaiting my transhiatial esophagectomy, I will have it done probably in April. I am totally aware of all risks and possible damage, even mortalitly rates. I have weighed my decision carefully and I can so much understand you warning achalasians like me for this huge step. Thank you! You know, I was sure the moment would come, that finally an -ectomy achalasian would write a non-success story here on the board (need to add, that I was afraid that it would make me doubt again, but thank God it doesn't). I find it astoneshing how many success -ectomy achalasians we have here on the board. I find it a very good thing that you write your complications and trouble now. As you do need to take your time to think your upcoming surgery over very carefully when it's a major surgery like the -ectomy and you need to get aware of every risk and how you feel towards it. Whether you are willing to take the risk or not; whether the evt. complications are better to live with than the way you are right now etc. etc. Like I said before I weighed my decision (carefully and for months and months and months - I drove everyone on the board crazy I guess). I am (and was) aware of the complications you mention and I discussed them with my surgeon. I stopped worrying (I am on a 7 month waiting list, if you keep doubting things, you go crazy) and feel confident and assured, something that is important while facing such major surgery. I find it very important that other -ectomy patients take their time to check and weigh too. Weighing each and every possible detail, as you should know upfront what you might regret later. It's good to have both the success stories and the non-successes in mind while weighing. Thanks again and I wish you so much luck on your next surgery. Keeping my fingers crossed it'll finally be your last surgery and things will finally improve for you. Love, Isabella Back in the Group I used to belong to this group a long time ago. I am a 40 year old male on disability due to Achalasia and my treatments. I have had my esophagus removed and replaced with my stomach. Then I had 4 infections because I could not hold my weight 180 pounds down to 115 pounds and I needed a j-tube put back in again this is my third. I am scheduled for surgery on 3/6/08 to reroute the food I eat due to massive acid reflux. I have a badly burned mouth and have lost 7 teeth I have not aspirated any acid that would be an emergency needing possible removal of a lung. In 2000 I had a badly dilated esophagus it was so wide that it was attaching itself to my lungs. It was twisted and I could not swallow anything at all. The esophagectomy was difficult to get through then when I could not eat again I fooled everyone went to work as an ICU RN by taking 4 crushed multivitamins per day and 8 cups of coffee just to get by. Then I ended up in the ICU do to weight loss and failure to thrive. If anyone is considerng a transhiatial esophagectomy or a laproscopic esophagectomy, think twice these operations were intended for people who are not supposed to live long thus all the complications are not supposed to come. If anyone has a j or a g tube contact the Oley Foundation for info on tubes and nutrution at www.oley.org Never miss a thing. Make your homepage. Sent from - a smarter inbox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hello, Joe. For the most part I agree with what I believe your intension was behind what you have said, to inform others of the risks and seriousness of esophagectomy. It is one of those surgeries that one should definitely think and rethink. For some, after all the rethinking, they will find there is not really another option. I have to take some issue with how you said something. Perhaps I am being picky but I think the way you put it makes it sound like it can only be a mistake in the long-term. You said: .... these operations were intended for people who are not supposed to live long thus all the complications are not supposed to come. ... "Intended" is a funny word there. Also, the way you worded the part about complications made it sound as if they would not do it if the patient might live long-term after the treatment. I am sure you are thinking of treatment for later stages of esophageal cancer. However there are other contexts in which the surgery is done. I think it depends on the surgeon and the patient to determine what the intention of the surgery is. Even in the context of esophageal cancer I think it is often intended as a chance for long-term survival, not something to make dying easier. This is certainly true in early stage 1 or 2 esophageal cancer, especially when the surgery is done prior to chemo or radiation. In patient with Barrett's that have had endoscopic surveillance the cancer is often found very early. If they have an esophagectomy as first treatment there are studies that indicate chances for long-term survival are good. For many years esophagectomy has been recognized as a treatment for motility disorders, such as achalasia, in extreme cases and where other treatments have failed. I don't think I have ever seen expected long-term survival listed as a contraindication for esophagectomy. It would be nice if there were more studies showing 30 year follow-ups but 30 year follow-up is hard to do even in common conditions. However, if there is a problem with the procedures I would think that most doctors would pass these difficult patients on to better doctors and centers. If so, these being the same centers and doctors that do many of the studies and other articles you would think that they would comment on the number of bad long-term cases they would see if they thought there were more than expected. Also, there are surgery options for failed esophagectomies. Other than that, I think your caution to others is good advice. See also: Clinical outcome and long-term survival rates after esophagectomy are not determined by age over 70 years (Mostly about cancer patients) http://www.springerlink.com/content/xq10hv706132456l/ "The 12-year survival rate was 28% and the 5-year rate was 31%, and this was correlated to tumor stage ..." Long-term survival after esophagectomy for Barrett's adenocarcinoma in endoscopically surveyed and nonsurveyed patients. (Again this is cancer) http://www.ncbi.nlm.nih.gov/pubmed/11986015 "Median survival for patients in the surveillance group was 107 months compared to 12 months for those in the no surveillance group..." Esophagectomy for complex benign esophageal disease (1988, non-cancer) http://jtcs.ctsnetjournals.org/cgi/content/abstract/95/3/378 "... in a group of 21 patients between 1976 and 1986 ... one perioperative death ... Follow-up is complete between 1 and 10 years and reveals the following functional results: 12 patients good to excellent, seven fair, one poor. ..." notan Quote Link to comment Share on other sites More sharing options...
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