Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Cara wrote: > The BIG question to be answered for people who choose not to have an ectomy is, " what will happen to my E if I do nothing? " . The fact that Dempsey didn't believe that the E will perforate on its own is such promising information. Obviously that was based on YOUR records and not mine ... > I was one of those that went for years before even telling my doctor that I had problems. After I was told I had achalasia and I should have the surgery I waited another six years. I didn' end up with a lot dilation just a little. When I met with the surgeon at Mayo, to talk about a myotomy not esophagectomy, I asked if I needed to do anything about my achalasia. She said the decision was about how I wanted to live. If I preferred to live without treatment then that was what I should do. I asked her about the dilation and would it progress if I did have treatment. She said it could but she would deal with it if I wanted surgery later. I asked about some people ending up needing an esophagectomy. She said a few people would end up needing an esophagectomy but most would not. We discussed risks of not having treatment (myotomy) and of having it. One of the comments she made that really summed it all up was that I should know and acknowledge the risks then put them out of mind and decide based on how I wanted to live. That was advice to me on that date. I can't know what the advise to someone else or at another time would be. My achalasia progressed very slowly, which is not the case for everyone. I love doctors that don't tell me how to live but help me live the life I want to live. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Not an, I have searched and searched and searched but I can't seem to find your story. Did you have the surgery? If so, was it a lap Heller? How are you doing now? I am sure you remember when I first posted back in april 2007, when I first learned that I was pregnant with twins. Well, I had planned to get the barium done after they were born but I was dealing with feeding issues with one of my twins that took up all of my time and energy and I didn't really focus on myself. So here I am 2 and a half years AFTER they are born and finally got the barium. I doubt that the state of my E was much different 2 years ago than it was on Friday but who knows? What matters now is whether or not surgery will be an option for me, and what type of surgery will that be (myotomy or 'ectomy). Then of course there is the wait and see approach with monitoring which sounds all too appealing. Since my quality of life is pretty good right now, why change it so drastically? I read back in 's old posts that Dr. Rice said that is wouldn't change the outcome if she did the 'ectomy at 32, 42 or even 50. So my age (36) makes me feel like I have some time. Even if my E is tortuous. I love that term, really do. Makes me all warm and fuzzy inside. I will know more tomorrow once I speak to my local GI and see what the reports say. Ofcourse my E looked terrible to me on the screen but maybe its not as bad as it looked? She gave me a carbonated drink to inflate it before I drank the barium, I guess that is standard. But since I fasted for 12 hours previous to the study, there was nothing in my E. At least I know stuff isn't sitting there for days on end. Anyway, I would love to know your story and I am so glad that you have slow progressing A. It just serves to show how everyone is so different in the progession of this disease. Regards, Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Cara wrote: > Not an, I have searched and searched and searched but I can't seem to find your story. Did you have the surgery? If so, was it a lap Heller? How are you doing now? > To make a long story short. I had symptoms off and on going back decades to my childhood. I can't say it was achalasia all those years because I was only diagnosed in 1999. I had the myotomy in 2005 and I eat whatever I want. I probably eat faster than most people without achalasia. Unless the food is dry I often don't drink until after the meal. I do drink a lot mostly because I get thirsty a lot. I am doing well. I take a PPI daily. They don't scare me. If I start to have problems I will deal with them then. I have an appointment to see my GI to update him and see if he thinks it is time to have anything checked out. I started another message for you yesterday but have not finished it. There is a section on cancer that I am going slowly on. I will cut the non-cancer part and add it to this message. My advice sometime comes from a different angle than you get from others. They aren't wrong I just want to say something else. --------- You are getting some good comments about the future. I have one about the past. Don't look back and do the what if thing. When we get a myotomy there is no guarantee that we will not need an esophagectomy latter. Most will not but a few will. You could have had the surgery and still ended up as you are. I don't think the dilation of the esophagus is well understood. Why some get end stage and some do not. If you read old papers about achalasia you find that they thought trapped gas because of a problem at the UES for some was the cause. Today some doctors believe it is the degree of muscle atrophy that is the main cause. Trapped food of course would not help, and good treatment sometimes causes the dilation to reverse some, though it seems that some people who do everything right still end up in end stage. --------- That wasn't much. I hope it helped. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Cara, Just out of interest: How did your pregnancy go with A? This is something that I think about, but have decided to not worry about that until the time comes (hopefully one day)... I've often comtemplated whether a pregnancy would worsen the symptoms of A- preventing enough space for food etc and if it would cause damage to a myotomy at a later stage. The group poll that was posted was interesting, as oral contraceptive pill causes terrible nausea and retching for me (A has removed my ability to vomit-lovely!) -I don't know if that was just me or if it's an effect of A. ________________________________ From: Cara Spoto <cspoto@...> achalasia Sent: Mon, 7 June, 2010 5:09:58 AM Subject: Re: RIchard  Not an, I have searched and searched and searched but I can't seem to find your story. Did you have the surgery? If so, was it a lap Heller? How are you doing now? I am sure you remember when I first posted back in april 2007, when I first learned that I was pregnant with twins. Well, I had planned to get the barium done after they were born but I was dealing with feeding issues with one of my twins that took up all of my time and energy and I didn't really focus on myself. So here I am 2 and a half years AFTER they are born and finally got the barium. I doubt that the state of my E was much different 2 years ago than it was on Friday but who knows? What matters now is whether or not surgery will be an option for me, and what type of surgery will that be (myotomy or 'ectomy). Then of course there is the wait and see approach with monitoring which sounds all too appealing. Since my quality of life is pretty good right now, why change it so drastically? I read back in 's old posts that Dr. Rice said that is wouldn't change the outcome if she did the 'ectomy at 32, 42 or even 50. So my age (36) makes me feel like I have some time. Even if my E is tortuous. I love that term, really do. Makes me all warm and fuzzy inside. I will know more tomorrow once I speak to my local GI and see what the reports say. Ofcourse my E looked terrible to me on the screen but maybe its not as bad as it looked? She gave me a carbonated drink to inflate it before I drank the barium, I guess that is standard. But since I fasted for 12 hours previous to the study, there was nothing in my E. At least I know stuff isn't sitting there for days on end. Anyway, I would love to know your story and I am so glad that you have slow progressing A. It just serves to show how everyone is so different in the progession of this disease. Regards, Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2010 Report Share Posted June 7, 2010 ALana, I can't comment on a myotomy during pregnancy because I never had one (just a dilatation) but I think there are some on here that have gone through it and maybe they can comment. However, I was pregnant with twins and my pregnancy was tough because of the hyperemesis. I was vomiting 10x a day from 8 weeks until about 24 weeks. I had to leave work and go on disability. I posted the poll because after going back and reading some old posts, I found a member here named who had the same thing during her pregnancy - funny huh? As far as the A goes, I had NO ISSUES what so ever. No dysphagia, no regurgitation, no aspiration, no reflux (ok maybe a little) but nothing out of the ordinary. A chiropractor told me that the natural hormone relaxin is released during pregnancy that affects ligaments and joints to let them expand more easily and that maybe had an effect on my LES? Maybe it opened it up a little more during pregnancy? I had a C section at 37 weeks and I fasted for 24 hours before the surgery to prevent aspiration. Everything went perfectly. I had no issues swallowing post delivery either. I do believe that my pregnancy may have exacerbated the sagging of my E since it was all pushed up at one point and then went back in place but definitely more tortuous after the kids were delivered. Its just a hypothesis so I really have no idea. I mention in my previous posts that I have gone untreated for A for 14 years and my E is now pretty messed up. I won't know the extent of the damage until tomorrow when I speak to my GI . I am hoping and praying its not beyond repair. But from reading everyone's posts here on this board with a tortuous/sigmoid/mega E, the 'ectomy is a strong possibility in the future. But as far as pregnancy and A go, I had no issues. Feel free to email me any time if you would like more info. Cara > From: Alana <ladybugs2501@...> > Subject: Re: RIchard > achalasia > Date: Sunday, June 6, 2010, 6:29 PM > > > > > > > > > > > > > > > >  > > > > > > > > > > Cara, > > Just out of interest: How did your pregnancy go with A? > This is something that I think about, but have decided to > not worry about that until the time comes (hopefully one > day)... I've often comtemplated whether a pregnancy > would worsen the symptoms of A- preventing enough space for > food etc and if it would cause damage to a myotomy at a > later stage. > > > > The group poll that was posted was interesting, as oral > contraceptive pill causes terrible nausea and retching for > me (A has removed my ability to vomit-lovely!) -I > don't know if that was just me or if it's an effect > of A. > > > > ________________________________ > > From: Cara Spoto <cspoto@...> > > achalasia > > Sent: Mon, 7 June, 2010 5:09:58 AM > > Subject: Re: RIchard > > > >  > > Not an, I have searched and searched and searched but I > can't seem to find your story. Did you have the surgery? > If so, was it a lap Heller? How are you doing now? > > > > I am sure you remember when I first posted back in april > 2007, when I first learned that I was pregnant with twins. > Well, I had planned to get the barium done after they were > born but I was dealing with feeding issues with one of my > twins that took up all of my time and energy and I > didn't really focus on myself. So here I am 2 and a half > years AFTER they are born and finally got the barium. > > > > I doubt that the state of my E was much different 2 years > ago than it was on Friday but who knows? What matters now is > whether or not surgery will be an option for me, and what > type of surgery will that be (myotomy or 'ectomy). > > > > Then of course there is the wait and see approach with > monitoring which sounds all too appealing. Since my quality > of life is pretty good right now, why change it so > drastically? > > > > I read back in 's old posts that Dr. Rice said > that is wouldn't change the outcome if she did the > 'ectomy at 32, 42 or even 50. So my age (36) makes me > feel like I have some time. Even if my E is tortuous. I love > that term, really do. Makes me all warm and fuzzy inside. > > > > I will know more tomorrow once I speak to my local GI and > see what the reports say. Ofcourse my E looked terrible to > me on the screen but maybe its not as bad as it looked? She > gave me a carbonated drink to inflate it before I drank the > barium, I guess that is standard. But since I fasted for 12 > hours previous to the study, there was nothing in my E. At > least I know stuff isn't sitting there for days on end. > > > > > Anyway, I would love to know your story and I am so glad > that you have slow progressing A. It just serves to show how > everyone is so different in the progession of this disease. > > > > Regards, > > Cara > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2010 Report Share Posted June 7, 2010 Hi Cara, I tip my hat to you for going back to my original posts and to the other research you have done. With tens of thousands of posts here, it has created a body of knowledge that probably has no rivals. I posted contemporaneously back in the summer of 2006 as the most effective way to describe what I was going through in order to get the best feedback from other members, and to have it out there for future readers to possibly read in order to have it available in order to compare notes without having to break any new ground. One of the things that ran through my mind back then, and please excuse me if I did say it back then, but its worth repeating. Probably anyone can go to any number of doctors for additional opinions until they hear the one they want to hear. How does hearing the one you want to hear make it right, when all the others before have given you the opinion that you don't want to hear? Surgeons cut; that's what they do for a living. Anytime a surgeon tells you that you don't need surgery, it goes beyond what they do to make a living, thus making it an opinion rendered that is not self serving (let's not get involved with the surgeon who gives an opinion knowing that they will not be the one who operates). While it still doesn't mean that they are right with what they said, it is still worth noting. You still need to use your own common sense and make sure that you review what all the doctors have told you and come to YOUR own conclusion. What are the risks with what Dr. Dempsey left me? If I don't have it done, maybe I never will need to have it done, then I " win. "  Maybe I will need to have it done anyway, and it will be in just a few years and the years waiting did not made a difference, (then I am no worse off, and perhaps surgical techniques will have improved. The problem occurs when I am no longer a good surgical candidate and my esophagus has gone really bad and the surgery must be done. Again, perhaps surgical techniques will be much better than now. But, that is where the risk lies. As someone once said, once your esophagus is gone, there are not too many viable options to fall back on if your reconfigured esophagus/stomach should fail. Besides the surgery and recovery involved with an ectomy, this is a low percentage concern of ectomy patients. The ones I know have such great attitudes that they probably do not have this thought cross their minds too often...but they can speak for themselves. In answer to your burping question, I do not create " little burps, " rather I create massive sounding hiccups, and based upon the way I feel a moment later (less pressure), the sound signals to me that food or liquid has passed thru the LES to the stomach. Heads will often turn when people hear this. Fortunately for me, they turn their heads too late to see from whose mouth the sound came from, and I just go about my business with a straight face. Cara, you are doing the right thing researching the Boards and speaking to many doctors. Knowledge is power. I am sure that you will come to a decision that you feel is right, and will never " turn around. " ________________________________ From: spotoca <cspoto@...> achalasia Sent: Sun, June 6, 2010 1:31:40 PM Subject: RIchard  I just went back and read all the posts that related to your 'ectomy investigation and ultimate decision. I read what Dr. Dempsey told you. I actually felt the relief that you must have felt when you were hearing the news for the 1st time. Its all becoming clear to me how the decision process is made. Its so individual, its so unique. There is no " right " or " wrong " way to go unless of course it was a life threatening situation. Which in our case it doesn't seem to be. The BIG question to be answered for people who choose not to have an ectomy is, " what will happen to my E if I do nothing? " . The fact that Dempsey didn't believe that the E will perforate on its own is such promising information. Obviously that was based on YOUR records and not mine so I will have to undergo further testing and gather more information to determine the long term survival of my E. But I, like you, do not have a quality of life issue. I don't even have rotting food in my E. Why take it out and run the risk of all these complications and possibly death (albeit a low risk - but still enough to scare the hell out of me). So I just wanted to say that I have read, and read and read all of your posts from that time period and I feel for what you went through. Its a scary time and I am embarking on it now. But I what I have (that you didn't) is your knowledge from the experience!! I am glad to know that there are other options, especially if you are not suffering currently. As an aside, I wanted to know if you do this too. When I eat, I am able to create little burps (i call them inside burps) in my E that help get my food through the LES. They are not real burps that come from the stomach (I lost that when I got A) but rather little ones that I believe are form the E and that give me relief and I feel the food go down. Do you experience this at all? Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2010 Report Share Posted June 7, 2010 Hi What an interesting post you have written. One item caught my eye and i wonder if you can clarify something for me please? You say " As someone who once said, once your oesophagus is gone, there are not too many viable options to fall back on if your reconfigured esophagus/stomach should fail. " what exactly do you mean by this? Does the quote mean that like me swallowing problems continue more or less quite similarly as before the ectomy? Because this seams to have happened to me. I have swallowing problems with food getting stuck in chest, taking nearly an hour to eat what little i do manage, food backing up into throat that gives me a hacking cough (nothing to do with chest infection) when something goes down the wrong way litterly. But what gets me is the pain that i get everytime that i swallow something, a pain that starts in the chest and goes through to my back and up into my jaw and quite paralises me. And yes i had the ectomy done through the left side of my chest and abdomen and was left with about 2 inches of my old " e " and my stomach made into a tube and pulled up into my chest. Does your quote possabily mean that there are possabilities that this new stomach tube can fail like an esophagus fails? Intriging. I am to see surgeon in clinic in Liverpool, UK on July 12th and may mention this to him if i get the chance.Look forward to hearing from you on this. from the UK ________________________________ From: RICHARD FRIEDMAN <cynmark24@...> achalasia Sent: Mon, June 7, 2010 3:22:25 AM Subject: Re: RIchard  Hi Cara, I tip my hat to you for going back to my original posts and to the other research you have done. With tens of thousands of posts here, it has created a body of knowledge that probably has no rivals. I posted contemporaneously back in the summer of 2006 as the most effective way to describe what I was going through in order to get the best feedback from other members, and to have it out there for future readers to possibly read in order to have it available in order to compare notes without having to break any new ground. One of the things that ran through my mind back then, and please excuse me if I did say it back then, but its worth repeating. Probably anyone can go to any number of doctors for additional opinions until they hear the one they want to hear. How does hearing the one you want to hear make it right, when all the others before have given you the opinion that you don't want to hear? Surgeons cut; that's what they do for a living. Anytime a surgeon tells you that you don't need surgery, it goes beyond what they do to make a living, thus making it an opinion rendered that is not self serving (let's not get involved with the surgeon who gives an opinion knowing that they will not be the one who operates). While it still doesn't mean that they are right with what they said, it is still worth noting. You still need to use your own common sense and make sure that you review what all the doctors have told you and come to YOUR own conclusion. What are the risks with what Dr. Dempsey left me? If I don't have it done, maybe I never will need to have it done, then I " win. "  Maybe I will need to have it done anyway, and it will be in just a few years and the years waiting did not made a difference, (then I am no worse off, and perhaps surgical techniques will have improved. The problem occurs when I am no longer a good surgical candidate and my esophagus has gone really bad and the surgery must be done. Again, perhaps surgical techniques will be much better than now. But, that is where the risk lies. As someone once said, once your esophagus is gone, there are not too many viable options to fall back on if your reconfigured esophagus/stomach should fail. Besides the surgery and recovery involved with an ectomy, this is a low percentage concern of ectomy patients. The ones I know have such great attitudes that they probably do not have this thought cross their minds too often...but they can speak for themselves. In answer to your burping question, I do not create " little burps, " rather I create massive sounding hiccups, and based upon the way I feel a moment later (less pressure), the sound signals to me that food or liquid has passed thru the LES to the stomach. Heads will often turn when people hear this. Fortunately for me, they turn their heads too late to see from whose mouth the sound came from, and I just go about my business with a straight face. Cara, you are doing the right thing researching the Boards and speaking to many doctors. Knowledge is power. I am sure that you will come to a decision that you feel is right, and will never " turn around. " ________________________________ From: spotoca <cspoto@...> achalasia Sent: Sun, June 6, 2010 1:31:40 PM Subject: RIchard  I just went back and read all the posts that related to your 'ectomy investigation and ultimate decision. I read what Dr. Dempsey told you. I actually felt the relief that you must have felt when you were hearing the news for the 1st time. Its all becoming clear to me how the decision process is made. Its so individual, its so unique. There is no " right " or " wrong " way to go unless of course it was a life threatening situation. Which in our case it doesn't seem to be. The BIG question to be answered for people who choose not to have an ectomy is, " what will happen to my E if I do nothing? " . The fact that Dempsey didn't believe that the E will perforate on its own is such promising information. Obviously that was based on YOUR records and not mine so I will have to undergo further testing and gather more information to determine the long term survival of my E. But I, like you, do not have a quality of life issue. I don't even have rotting food in my E. Why take it out and run the risk of all these complications and possibly death (albeit a low risk - but still enough to scare the hell out of me). So I just wanted to say that I have read, and read and read all of your posts from that time period and I feel for what you went through. Its a scary time and I am embarking on it now. But I what I have (that you didn't) is your knowledge from the experience!! I am glad to know that there are other options, especially if you are not suffering currently. As an aside, I wanted to know if you do this too. When I eat, I am able to create little burps (i call them inside burps) in my E that help get my food through the LES. They are not real burps that come from the stomach (I lost that when I got A) but rather little ones that I believe are form the E and that give me relief and I feel the food go down. Do you experience this at all? Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 , The nurse at my GI doctor's office called me with results that she did not understand. I had to ask pointed questions and she would not put me on with the GI doctor. I am so upset right now. Anyway, she told me that the diameter of my E was measured at 10.5cm!!!!!!!!!!!!!! Holy cow. I am stunned. Doubt I'll be a candidate for a Heller now. This just plain sucks and my GI doesn't seem concerned at all. He actually didn't understand why I wanted to talk with him!!!!!!!!!!! ok so now I know I need to go to Dr. Rice and Dr. Patti ASAP. They will do all the testing there. I am wasting my time with amateurs... BTW, what is the diameter of your E? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2011 Report Share Posted April 15, 2011 Thank for the warm welcome , and may blessings be with you also. P.S. I don't really see it as giving up, more like waiting in this sandbox of life, for my graduation into the 1st. grade :-} > > hi richard, you came to the right support group everyone here has hep c .please dont give up there are many solution such as mr don has said please talk to him more about your situation he is a doctor to all of us and a good father and friend.please talk to him he can help many doctors out there simply dont care maybe thats your doctor now, dont give up my friend my brother in christ i love you jesus lover you we need to fight we are warriors!! love karen, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2011 Report Share Posted April 17, 2011 Welcome to the group, it is comforting to share with others who r in the same boat/different Sea's, we all set sail, go thru storms, calming flat water periods, drop dead sunsets, up n down riding the waves, we do our best not to sink.. stay a float in search of a landing...I quit searching n just let it be as i can not tx either, I am in it for the ride, the journey is what I seek, the most comfortable journey that i can muster each day! u have docked at a great ship, come a board mattie, get some wind in those sails.watch out for pirates LOL! we r a bunch of loving well rounded characters!! Welcome!! Quote Link to comment Share on other sites More sharing options...
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