Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 32uk wrote: > ... I'm reading that in a lot of cases the myotomy helps with swallowing > but not the spasms/chest pain. ... > Sometimes the pain is worse and more frequent after surgery but in time become less than before surgery. For some, after they heal the pains are no longer a problem. We are all different though so you can't make any guarantees about it. Has he had a manometry and if so what did it show about where his spasms are? Could he have vigorous achalasia or DES and not classic achalasia? In my case I have no problem with pains after the myotomy. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi , If a brief testimonial might offer you come comfort, I will just say that when I was 32, like your husband, I started with achalasia symptoms, had 5 or 6 dilatations (pre-botox era), the regurgitations and difficulty swallowing that led to the myotomy at age 42, when I was diagnosed with end-stage achalasia, suffered and successfully dealt with the (chest pain) spasms, and 17 years later still holding my own (now 59 years old). Point being, though we are all different, there is help for him that can improve the way he is. It can be done; you need not be pessimistic. ________________________________ From: melanie32uk <melanie32uk@...> achalasia Sent: Thursday, January 29, 2009 8:35:55 AM Subject: achalasia - surgery question Hi everyone, My husband is 39. He's in hospital just now because his symptoms (severe non-cardiac chest pain, regurgitation, difficulty swallowing) have become too debilitating for him to cope with. He was diagnosed about 6 years ago after suffering the symptoms for 18 months. One NHS consultant gastro-enterolgist told him it was in his head!! Fast foward to having 4 or 5 dilations (it may have been 6 but his notes are down south) and 2 Botox injections. It's the chest pain that floors him the most at the moment. Nifedipine, GTN and viagra gave no effect except to give him headaches. I'm reading that in a lot of cases the myotomy helps with swallowing but not the spasms/chest pain. Would that be a reasonable generalisation to make or not? I'm not sure what is going to happen to him. I've yet to speak to medical staff or get reliable info from him! They mentioned myotomy but also partial removal of his lower eosophagus, which I thought was a bit extreme, considering they could try a myotomy with fundoplication first. Perhaps they learned something from the barium swallow. He'll have an endoscopy tomorrow, so hopefully will know more. My worry is that they'll discharge him without doing anything other than swallow tests and endoscopy. It's a relief to know others have the same symptoms and to get tips and ideas from others about what relieves their chest pain/spasms. I do find reading about " end stage achalasia " disturbing. I've seen TV documentaries about oesophagectomy, and I've read about people's experiences. Anyway thanks for letting me think out loud! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Thank you for your reply. At what point can it be deemed end stage? I'm surprised the medics can even tell when " end stage " is because the experience we've had with the NHS at the " beginning and middle stages " leaves a lot to be desired - at least now things seem to be moving. Thank you for offering hope! > Hi , > > If a brief testimonial might offer you come comfort, I will just say that when I was 32, like your husband, I started with achalasia symptoms, had 5 or 6 dilatations (pre-botox era), the regurgitations and difficulty swallowing that led to the myotomy at age 42, when I was diagnosed with end-stage achalasia, suffered and successfully dealt with the (chest pain) spasms, and 17 years later still holding my own (now 59 years old). Point being, though we are all different, there is help for him that can improve the way he is. It can be done; you need not be pessimistic. > > > > > > > ________________________________ > From: melanie32uk <melanie32uk@...> > achalasia > Sent: Thursday, January 29, 2009 8:35:55 AM > Subject: achalasia - surgery question > > > Hi everyone, > > My husband is 39. He's in hospital just now because his symptoms > (severe non-cardiac chest pain, regurgitation, > difficulty swallowing) have become too debilitating for him to cope > with. > > He was diagnosed about 6 years ago after suffering the symptoms for > 18 months. One NHS consultant gastro-enterolgist told him it was in > his head!! > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > notes are down south) and 2 Botox injections. > > It's the chest pain that floors him the most at the moment. > Nifedipine, GTN and viagra gave no effect except to give him > headaches. > > I'm reading that in a lot of cases the myotomy helps with swallowing > but not the spasms/chest pain. > Would that be a reasonable generalisation to make or not? > > I'm not sure what is going to happen to him. I've yet to speak to > medical staff or get reliable info from him! They mentioned myotomy > but also partial removal of his lower eosophagus, which I thought > was a bit extreme, considering they could try a myotomy with > fundoplication first. > Perhaps they learned something from the barium swallow. He'll have > an endoscopy tomorrow, so hopefully will know more. My worry is that > they'll discharge him without doing anything other than swallow > tests and endoscopy. > > It's a relief to know others have the same symptoms and to get tips > and ideas from others about what relieves their chest pain/spasms. > > I do find reading about " end stage achalasia " disturbing. I've seen > TV documentaries about oesophagectomy, and I've read about people's > experiences. > > Anyway thanks for letting me think out loud! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi Notan, As far as we were aware it is primary or classic achalasia, but I didn't know prior to my recent research online that there were types, although I might've known! Every other medical condition has types. We were told his oesophagus doesn't perform peristalsis but it contracts randomly / ll at once. Is this vigorous achalasia? What is the difference between that and ordinary A or secondary A. Surely symptoms are all similar? Isn't treatment the same? Please remind me what DES stands for? UK spells oesophagus with an O as you know, and it is sometimes confusing. He had a manometer about a year ago. He sees his consultant once a month. I'm not sure if they'll do another manometer - STILL haven't seen a medic. Thanks for your reply. > > ... I'm reading that in a lot of cases the myotomy helps with swallowing > > but not the spasms/chest pain. ... > > > > Sometimes the pain is worse and more frequent after surgery but in time > become less than before surgery. For some, after they heal the pains are > no longer a problem. We are all different though so you can't make any > guarantees about it. Has he had a manometry and if so what did it show > about where his spasms are? Could he have vigorous achalasia or DES and > not classic achalasia? > > In my case I have no problem with pains after the myotomy. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I guess since they said his had contracting motions it is vigorous A. " Achalasia (Latin a= absence, chalus = relaxation) is a disease of unknown cause, which is characterised by an absence of peristalsis in the smooth muscle oesophagus and failed or incomplete relaxation of the lower oesophageal sphincter. A variant of achalasia, called vigorous achalasia, shows the same abnormalities in the lower oesophageal sphincter but vigorous contractions within the oesophageal body. " I still need to know what the difference is in terms of treatment, if anyone can help? > > ... I'm reading that in a lot of cases the myotomy helps with swallowing > > but not the spasms/chest pain. ... > > > > Sometimes the pain is worse and more frequent after surgery but in time > become less than before surgery. For some, after they heal the pains are > no longer a problem. We are all different though so you can't make any > guarantees about it. Has he had a manometry and if so what did it show > about where his spasms are? Could he have vigorous achalasia or DES and > not classic achalasia? > > In my case I have no problem with pains after the myotomy. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi , Another brief testimonial...I too had debilitating spasms of the esophagus, regurgitation, and extremem difficulty swallowing before i had the Heller myomyotomy. Non of my doctors ever pronounced me as being end stage at the time, but I can tell you that I was limited to eating jello and apple juice. That was over 30 yeras ago. I am now 53 and other thatn the achalasia I am in very good health. I still have spasms sometimes and still sleep elevated because of not having the ability to keep food and drink confined to my stomach when lying flat. But the point is... I have a very normal life other than having to sleep on 2 or 3 soft pillows and avoiding summersaults and headstands:-). There definately is hope for your husband. Achalasia doesn't have to signal the end of a productive, active life. > > > Thank you for your reply. > At what point can it be deemed end stage? > I'm surprised the medics can even tell when " end stage " is because > the experience we've had with the NHS at the " beginning and middle > stages " leaves a lot to be desired - at least now things seem to be > moving. > Thank you for offering hope! > > > > > > Hi , > > > > If a brief testimonial might offer you come comfort, I will just > say that when I was 32, like your husband, I started with achalasia > symptoms, had 5 or 6 dilatations (pre-botox era), the regurgitations > and difficulty swallowing that led�to the myotomy at age 42,�when I > was diagnosed with end-stage achalasia, suffered and successfully > dealt with the (chest pain) spasms, and 17 years later still holding > my own (now 59 years old).� Point being, though we are all > different, there is help for him that can improve the way he is.� It > can be done; you need not be pessimistic. > > > > > > > > > > > > > > ________________________________ > > From: melanie32uk <melanie32uk@> > > achalasia > > Sent: Thursday, January 29, 2009 8:35:55 AM > > Subject: achalasia - surgery question > > > > > > Hi everyone, > > > > My husband is 39. He's in hospital just now because his symptoms > > (severe non-cardiac chest pain, regurgitation, > > difficulty swallowing) have become too debilitating for him to > cope > > with. > > > > He was diagnosed about 6 years ago after suffering the symptoms > for > > 18 months. One NHS consultant gastro-enterolgist told him it was > in > > his head!! > > > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > > notes are down south) and 2 Botox injections. > > > > It's the chest pain that floors him the most at the moment. > > Nifedipine, GTN and viagra gave no effect except to give him > > headaches. > > > > I'm reading that in a lot of cases the myotomy helps with > swallowing > > but not the spasms/chest pain. > > Would that be a reasonable generalisation to make or not? > > > > I'm not sure what is going to happen to him. I've yet to speak to > > medical staff or get reliable info from him! They mentioned > myotomy > > but also partial removal of his lower eosophagus, which I thought > > was a bit extreme, considering they could try a myotomy with > > fundoplication first. > > Perhaps they learned something from the barium swallow. He'll have > > an endoscopy tomorrow, so hopefully will know more. My worry is > that > > they'll discharge him without doing anything other than swallow > > tests and endoscopy. > > > > It's a relief to know others have the same symptoms and to get > tips > > and ideas from others about what relieves their chest pain/spasms. > > > > I do find reading about " end stage achalasia " disturbing. I've > seen > > TV documentaries about oesophagectomy, and I've read about > people's > > experiences. > > > > Anyway thanks for letting me think out loud! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 If you would like someone to talk to you are more than welcome to bend my ear. I had my " E " taken out a year ago and yes it seems a bit extream but I am so glad it is done now. <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > ________________________________ From: melanie32uk <melanie32uk@...> achalasia Sent: Thursday, January 29, 2009 8:35:55 AM Subject: achalasia - surgery question Hi everyone, My husband is 39. He's in hospital just now because his symptoms (severe non-cardiac chest pain, regurgitation, difficulty swallowing) have become too debilitating for him to cope with. He was diagnosed about 6 years ago after suffering the symptoms for 18 months. One NHS consultant gastro-enterolgist told him it was in his head!! Fast foward to having 4 or 5 dilations (it may have been 6 but his notes are down south) and 2 Botox injections. It's the chest pain that floors him the most at the moment. Nifedipine, GTN and viagra gave no effect except to give him headaches. I'm reading that in a lot of cases the myotomy helps with swallowing but not the spasms/chest pain. Would that be a reasonable generalisation to make or not? I'm not sure what is going to happen to him. I've yet to speak to medical staff or get reliable info from him! They mentioned myotomy but also partial removal of his lower eosophagus, which I thought was a bit extreme, considering they could try a myotomy with fundoplication first. Perhaps they learned something from the barium swallow. He'll have an endoscopy tomorrow, so hopefully will know more. My worry is that they'll discharge him without doing anything other than swallow tests and endoscopy. It's a relief to know others have the same symptoms and to get tips and ideas from others about what relieves their chest pain/spasms. I do find reading about " end stage achalasia " disturbing. I've seen TV documentaries about oesophagectomy, and I've read about people's experiences. Anyway thanks for letting me think out loud! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hate to burst a bubble but I never got the spasms until AFTER my myotomy. Everyone is different which is extremely frustrating. Either way, Good luck to your husband! , FL http://www.achalasia.today.com > > Hi everyone, > > My husband is 39. He's in hospital just now because his symptoms > (severe non-cardiac chest pain, regurgitation, > difficulty swallowing) have become too debilitating for him to cope > with. > > He was diagnosed about 6 years ago after suffering the symptoms for > 18 months. One NHS consultant gastro-enterolgist told him it was in > his head!! > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > notes are down south) and 2 Botox injections. > > It's the chest pain that floors him the most at the moment. > Nifedipine, GTN and viagra gave no effect except to give him > headaches. > > I'm reading that in a lot of cases the myotomy helps with swallowing > but not the spasms/chest pain. > Would that be a reasonable generalisation to make or not? > > I'm not sure what is going to happen to him. I've yet to speak to > medical staff or get reliable info from him! They mentioned myotomy > but also partial removal of his lower eosophagus, which I thought > was a bit extreme, considering they could try a myotomy with > fundoplication first. > Perhaps they learned something from the barium swallow. He'll have > an endoscopy tomorrow, so hopefully will know more. My worry is that > they'll discharge him without doing anything other than swallow > tests and endoscopy. > > It's a relief to know others have the same symptoms and to get tips > and ideas from others about what relieves their chest pain/spasms. > > I do find reading about " end stage achalasia " disturbing. I've seen > TV documentaries about oesophagectomy, and I've read about people's > experiences. > > Anyway thanks for letting me think out loud! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi Im from the Uk and had a myotomy in September 2006 where abouts in the Uk are you? I had my surgery done in a hospital in Northamptonshire and two years on still doing well. You really need to ask the consultant whats going on get a list of questions written down and make sure either you or your husband ask them. One of the first questions is how many myotmies has the consultant/surgeon performed. Pippa > > Hi everyone, > > My husband is 39. He's in hospital just now because his symptoms > (severe non-cardiac chest pain, regurgitation, > difficulty swallowing) have become too debilitating for him to cope > with. > > He was diagnosed about 6 years ago after suffering the symptoms for > 18 months. One NHS consultant gastro-enterolgist told him it was in > his head!! > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > notes are down south) and 2 Botox injections. > > It's the chest pain that floors him the most at the moment. > Nifedipine, GTN and viagra gave no effect except to give him > headaches. > > I'm reading that in a lot of cases the myotomy helps with swallowing > but not the spasms/chest pain. > Would that be a reasonable generalisation to make or not? > > I'm not sure what is going to happen to him. I've yet to speak to > medical staff or get reliable info from him! They mentioned myotomy > but also partial removal of his lower eosophagus, which I thought > was a bit extreme, considering they could try a myotomy with > fundoplication first. > Perhaps they learned something from the barium swallow. He'll have > an endoscopy tomorrow, so hopefully will know more. My worry is that > they'll discharge him without doing anything other than swallow > tests and endoscopy. > > It's a relief to know others have the same symptoms and to get tips > and ideas from others about what relieves their chest pain/spasms. > > I do find reading about " end stage achalasia " disturbing. I've seen > TV documentaries about oesophagectomy, and I've read about people's > experiences. > > Anyway thanks for letting me think out loud! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 Thank you for all your replies. One constant of achalasia is there is no rhyme or reason to it! Preliminary report from hubby is that his medics say he is " too far gone " for a myotomy - then why the hell did they not offer him one before now - and he'll most likely have thoracic surgery to remove lower end of oesophagus. They seem to know this after only the barium swallow - he hasn't yet been for his endoscopy but I expect he's having it done now. Thanks Pippa - I've got plenty of questions!!!! But mainly I just want to know what they know and what they'll do. We're in Edinburgh at the supposed great teaching hospital. So if the surgeon says he's only done one lower O-ectomy - we do what? You know you can't pick and choose on the NHS. Can't afford this op privately unless we financially ruin ourselves and chances are BUPA's surgeons (who are almost always usually NHS surgeons anyway) will be in same postion of not having lots of experience with this as it's so uncommon. In achalasia , " manchesterpippa " <manchesterpippa@...> wrote: > > Hi > > Im from the Uk and had a myotomy in September 2006 where abouts in > the Uk are you? > > I had my surgery done in a hospital in Northamptonshire and two years > on still doing well. > > You really need to ask the consultant whats going on get a list of > questions written down and make sure either you or your husband ask > them. One of the first questions is how many myotmies has the > consultant/surgeon performed. > > Pippa > > > > > > > Hi everyone, > > > > My husband is 39. He's in hospital just now because his symptoms > > (severe non-cardiac chest pain, regurgitation, > > difficulty swallowing) have become too debilitating for him to cope > > with. > > > > He was diagnosed about 6 years ago after suffering the symptoms for > > 18 months. One NHS consultant gastro-enterolgist told him it was in > > his head!! > > > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > > notes are down south) and 2 Botox injections. > > > > It's the chest pain that floors him the most at the moment. > > Nifedipine, GTN and viagra gave no effect except to give him > > headaches. > > > > I'm reading that in a lot of cases the myotomy helps with > swallowing > > but not the spasms/chest pain. > > Would that be a reasonable generalisation to make or not? > > > > I'm not sure what is going to happen to him. I've yet to speak to > > medical staff or get reliable info from him! They mentioned myotomy > > but also partial removal of his lower eosophagus, which I thought > > was a bit extreme, considering they could try a myotomy with > > fundoplication first. > > Perhaps they learned something from the barium swallow. He'll have > > an endoscopy tomorrow, so hopefully will know more. My worry is > that > > they'll discharge him without doing anything other than swallow > > tests and endoscopy. > > > > It's a relief to know others have the same symptoms and to get tips > > and ideas from others about what relieves their chest pain/spasms. > > > > I do find reading about " end stage achalasia " disturbing. I've seen > > TV documentaries about oesophagectomy, and I've read about people's > > experiences. > > > > Anyway thanks for letting me think out loud! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 It's been a stressful week so I can only imagine what it's been like for him. He doesn't want to know the details and he doesn't take them in. I am the opposite. I tried to phone the ward for an update - waited 5 mins for switchboard to answer, 5 minutes for ward to answer, then I was put straight on to....my husband! The very person who knows nothing! He put me back onto the nurse who then went off for 5 minutes, came back to tell me the doctor was on the phone and could I phone back in half hour. I have this overpowering need to KNOW WHAT IS HAPPENING!!! lol agggghhhhhhhhh!! Last I was told by hubby is that a myotomy was no longer an option, and that the lower end O would be removed. Either this Monday or next, but a letter would be sent out? But nobody seems to know whether he's being discharged or not first. He says he's been told so many conflicting things he doesn't know anymore. I've been told nothing by either medical or nursing staff, and it's frustrating. > > At what point can it be deemed end stage? > > > > When the esophagus becomes like a large pouch (mega-esophagus) and may > have a curve (sigmoid) or hang down below the stomach, that is end stage. > > notan > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 The pain is always worst at his sternum so that would be in the lower O area. Thanks for the explanation. > > ... We were told his oesophagus doesn't perform peristalsis but > > it contracts randomly / ll at once. Is this vigorous achalasia? > > The lack of peristalsis is the main symptom of achalasia. In vigorous > achalasia there are also vigorous contraction of the esophagus. Those > " all at once " contractions could indicate vigorous achalasia. Some of > the literature indicates that vigorous achalasia patients may report > more chest pain but there is conflicting studies on the topic. It seems > intuitive that there would be if the spasms are strong enough and long > enough to cause pain, like a cramp in the leg causes pain. DES or DOS in > the UK is Diffuse Oesophageal Spasm, a strong simultaneous contraction > along the body of the esophagus. It does cause pain which can be very > intense. There is literature that indicates that it may in time develop > into achalasia, but again the data on this is conflicting. Vigorous > achalasia is kind of a combination of achalasia with DES. If some of the > esophagus is removed there would be less of it to spasm. If the spasms > are just in the lower esophagus and that part is removed that could be > the end of the spasms. Pain can also be caused by distention of the > esophagus. As the esophagus is stretched it feels pain. Pain could also > be caused by irritation of the esophagus or esophagitis. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 Hi Melenie In the UK under the NHS you don't have to go with the first surgeon you see you can ask your own GP to be refered to other surgeons/consultants that have more experience. You might have to stand your ground and be determined but it can be done. Its not a well know fact but its been mentioned on this board before that in the uk you can seek help from another consultant. There are a list of recommended surgeons/consultants in the files of this group you could ask your GP to see if he is willing to refer you. The first thing you need to do is find out how many the surgeon at Edinburgh Teaching Hospital has already done and how successful they were, You might find that he has done many and had very good results. Good luck and let us know how you get on. Pippa > > > > > > Hi everyone, > > > > > > My husband is 39. He's in hospital just now because his symptoms > > > (severe non-cardiac chest pain, regurgitation, > > > difficulty swallowing) have become too debilitating for him to > cope > > > with. > > > > > > He was diagnosed about 6 years ago after suffering the symptoms > for > > > 18 months. One NHS consultant gastro-enterolgist told him it was > in > > > his head!! > > > > > > Fast foward to having 4 or 5 dilations (it may have been 6 but > his > > > notes are down south) and 2 Botox injections. > > > > > > It's the chest pain that floors him the most at the moment. > > > Nifedipine, GTN and viagra gave no effect except to give him > > > headaches. > > > > > > I'm reading that in a lot of cases the myotomy helps with > > swallowing > > > but not the spasms/chest pain. > > > Would that be a reasonable generalisation to make or not? > > > > > > I'm not sure what is going to happen to him. I've yet to speak > to > > > medical staff or get reliable info from him! They mentioned > myotomy > > > but also partial removal of his lower eosophagus, which I > thought > > > was a bit extreme, considering they could try a myotomy with > > > fundoplication first. > > > Perhaps they learned something from the barium swallow. He'll > have > > > an endoscopy tomorrow, so hopefully will know more. My worry is > > that > > > they'll discharge him without doing anything other than swallow > > > tests and endoscopy. > > > > > > It's a relief to know others have the same symptoms and to get > tips > > > and ideas from others about what relieves their chest > pain/spasms. > > > > > > I do find reading about " end stage achalasia " disturbing. I've > seen > > > TV documentaries about oesophagectomy, and I've read about > people's > > > experiences. > > > > > > Anyway thanks for letting me think out loud! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 , Welcome to the group! I hope you can get some answers soon to your questions and that the medical staff will talk to you soon! My husband, , has DES (or DOS in the U.K.). From my research, the difference between his condition and achalasia (or vigorous achalasia) is that he's never had any widening of his (o)esophagus. As I understand it, with true DES, you don't get that. As Notan said, studies suggest that DES (DOS) can develop into achalasia, but so far as we know, that hasn't happened to my husband, yet. Also, DES is defined as the strong contractions along with some normal peristalsis. On a manometry, my husband had some ineffective swallows, a lot of strong contractions, but still some normal peristalsis. I hope you can get answers to what your husband's barium swallow test results are. That helps to tell what kind of shape the Oesophagus is in. If it's really distended, bent below the stomach, and/or sigmoid, that could rate the " end-stage " diagnosis. Again, I hope you can get some answers. I really think knowledge is power. It's important to help a patient make an informed decision on what to do about their own health care. Your husband is lucky to have you, working hard to get answers to what is going on. It sounds like he may be afraid to hear what's actually happening and just wants it fixed, but you want to be sure the right doctor is doing the right thing for him. Good luck to you both and please keep us informed with what's going on! in Michigan, USA > > ... We were told his oesophagus doesn't perform peristalsis but > > it contracts randomly / ll at once. Is this vigorous achalasia? > > The lack of peristalsis is the main symptom of achalasia. In vigorous > achalasia there are also vigorous contraction of the esophagus. Those > " all at once " contractions could indicate vigorous achalasia. Some of > the literature indicates that vigorous achalasia patients may report > more chest pain but there is conflicting studies on the topic. It seems > intuitive that there would be if the spasms are strong enough and long > enough to cause pain, like a cramp in the leg causes pain. DES or DOS in > the UK is Diffuse Oesophageal Spasm, a strong simultaneous contraction > along the body of the esophagus. It does cause pain which can be very > intense. There is literature that indicates that it may in time develop > into achalasia, but again the data on this is conflicting. Vigorous > achalasia is kind of a combination of achalasia with DES. If some of the > esophagus is removed there would be less of it to spasm. If the spasms > are just in the lower esophagus and that part is removed that could be > the end of the spasms. Pain can also be caused by distention of the > esophagus. As the esophagus is stretched it feels pain. Pain could also > be caused by irritation of the esophagus or esophagitis. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 Thank you . I discussed with hubby my findings for today. He still strongly needs me to speak to docs and take it all on board for him which I am happy to do. I told myself not to waste energy on anger for nobody even telling us about the myotomy, but to concentrate on what he needs now. I still feel, after reading articles Notan sent, that a myotomy would be worth the risk first rather than removal of lower oesophagus. The articles seem to say that myotomy is still the first treatment of choice with Os that are grossly dilated or sigmoid in shape. I have to ascertain from the doc the results of the barium as you say. I need to know their rationale for suggesting ectomy. He'd be off work a long time. He is scared of the length of the op too - 5.5 hours. He even suggested being able to cope as he was (in severe pain at times, unable to eat when and what he likes, eating painfully slowly, regurgitating, burping, energy-zapping pain again...) - he'd just raise his bed a bit instead of surgery!!! He's got a day pass over the weekend but has to return to the bed each night. On Monday he'll either be discharged or operated on. He may have to wait a while for the op if he is discharged - whatever that op may be. I can't believe we still don't know what's happening. > > , > Welcome to the group! I hope you can get some answers soon to > your questions and that the medical staff will talk to you soon! My > husband, , has DES (or DOS in the U.K.). From my research, the > difference between his condition and achalasia (or vigorous achalasia) > is that he's never had any widening of his (o)esophagus. As I > understand it, with true DES, you don't get that. As Notan said, > studies suggest that DES (DOS) can develop into achalasia, but so far > as we know, that hasn't happened to my husband, yet. Also, DES is > defined as the strong contractions along with some normal peristalsis. > On a manometry, my husband had some ineffective swallows, a lot of > strong contractions, but still some normal peristalsis. > I hope you can get answers to what your husband's barium swallow > test results are. That helps to tell what kind of shape the > Oesophagus is in. If it's really distended, bent below the stomach, > and/or sigmoid, that could rate the " end-stage " diagnosis. Again, I > hope you can get some answers. I really think knowledge is power. > It's important to help a patient make an informed decision on what to > do about their own health care. Your husband is lucky to have you, > working hard to get answers to what is going on. It sounds like he > may be afraid to hear what's actually happening and just wants it > fixed, but you want to be sure the right doctor is doing the right > thing for him. Good luck to you both and please keep us informed with > what's going on! > > in Michigan, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Thanks Notan. At least I know that myotomy doesn't have to be completely ruled out - unless they give us good reason. We still have the option of a 2nd opinion... from somewhere and that'll be a mission in itself, to seek a real live medical expert on achalasia. I've already printed those articles out! They said the op would be open thoracic. It would take 1 year to 18 months to heal properly (and that's if there are no setbacks). They didn't say how long he'd be off work but it's not a manual job at least. This info is all from hubby. I won't see any medics till at least Monday and they may even discharge him, but I really don't know! *He* can't manage without surgery or something to help alleviate the symptoms. He was at breaking point before he went in. He can't tolerate the pains anymore, nothing works (although we've yet to try some of the tips provided by the people here). All I know is that after the barium they said he definitely needed surgery, it was a matter of which kind, then said ectomy rather than myotomy... so we'll see. Collecting him this morning - he's allowed out till 8pm tonight. > > ... I still feel, after reading articles Notan sent, that a myotomy > > would be worth the risk first rather than removal of lower > > oesophagus. The articles seem to say that myotomy is still the first > > treatment of choice with Os that are grossly dilated or sigmoid in > > shape. ... > > > > I don't know if it would be worth doing a myotomy first or not. The > point of the studies is that it may be worth it, but not all doctors are > going to agree with those studies. I suggest you print them out and ask > your doctors about them. Let them explain why the studies may or may not > apply in his case. > > > I have to ascertain from the doc the results of the barium as you > > say. I need to know their rationale for suggesting ectomy. > > > > Without peristalsis we need gravity to move food and drinks into the > stomach from the esophagus. If the esophagus dips below the entry to the > stomach then food is going to get trapped there even if he has a > myotomy, if the dip is not corrected. Likewise if the esophagus is > folded or twisted. Sometimes when a myotomy is done there are things > done to correct the shape of the esophagus. How well things can be > corrected in his case I do not know. It may depend on the skill of the > surgeon. > > > He is scared of the length of the op too - 5.5 hours. > > It is a major surgery, much more so than a myotomy. Have they said if > they can do it laparoscopically? Or will they have to do an open > surgery? Have they said how long he would be in the hospital and how > long before he can return to work? > > Have they said how long he can go without the surgery? > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 He was discharged yesterday. The barium swallow says: normal swallow, delayed emptying distal oesophagus and beaked appearance. Endoscopy: no stenosis. Further investigations (to come): Case has been referred to thoracic surgeons for their advice - to arrange out patient appointment to discuss possibility of distal oesopagectomy. HOWEVER when he left the hospital te surgeon said to him they may not need to do the ectomy. He's to go in for a manometry on Thursday, which they could have done the week he was an inpatient. > > > > , > > Welcome to the group! I hope you can get some answers soon to > > your questions and that the medical staff will talk to you soon! > My > > husband, , has DES (or DOS in the U.K.). From my research, > the > > difference between his condition and achalasia (or vigorous > achalasia) > > is that he's never had any widening of his (o)esophagus. As I > > understand it, with true DES, you don't get that. As Notan said, > > studies suggest that DES (DOS) can develop into achalasia, but so > far > > as we know, that hasn't happened to my husband, yet. Also, DES is > > defined as the strong contractions along with some normal > peristalsis. > > On a manometry, my husband had some ineffective swallows, a lot of > > strong contractions, but still some normal peristalsis. > > I hope you can get answers to what your husband's barium > swallow > > test results are. That helps to tell what kind of shape the > > Oesophagus is in. If it's really distended, bent below the > stomach, > > and/or sigmoid, that could rate the " end-stage " diagnosis. Again, > I > > hope you can get some answers. I really think knowledge is power. > > It's important to help a patient make an informed decision on what > to > > do about their own health care. Your husband is lucky to have you, > > working hard to get answers to what is going on. It sounds like he > > may be afraid to hear what's actually happening and just wants it > > fixed, but you want to be sure the right doctor is doing the right > > thing for him. Good luck to you both and please keep us informed > with > > what's going on! > > > > in Michigan, USA > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Hi If you need further advice please consider the following group which I found extremely helpfull when I thought all the docs were against me before I had my ectomy even before I was diagnosed with Achalasia. Here goes. The Oesophageal Patients Association based in Birmingham UK. Contact no is 0121 7049860. The Assoc. Chairman is Kirby and believe me there is nothing but nothing he does not know about Achalasia sufferers. He is also a font of knowledge about specialists in each and every area of the country in the UK. If you don't get through to him 1st time his secretary will tell him who you are and he personnaly will phone you back. That's how helpfull he is. His knowledge included Thoracic Surgeons who have dealt with Achalasia. Good Luck. > > He was discharged yesterday. > > The barium swallow says: normal swallow, delayed emptying distal > oesophagus and beaked appearance. > > Endoscopy: no stenosis. > > Further investigations (to come): Case has been referred to thoracic > surgeons for their advice - to arrange out patient appointment to > discuss possibility of distal oesopagectomy. > > HOWEVER when he left the hospital te surgeon said to him they may > not need to do the ectomy. > He's to go in for a manometry on Thursday, which they could have > done the week he was an inpatient. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 , The " bird's beak " on a barium swallow usually indicates Achalasia (it's the extreme narrowing at the Lower Oesophageal Sphincter). Does the report say anything about how wide the oesophagus is (aside from the LOS)? Did you get a report or a cd or dvd of the actual test? If you go for a second opinion (and it sounds like that would be wise here), you'll want to get a copy of the actual test video on cd or dvd for the other doctor(s). Any idea of who the thoracic surgeons are that he's been referred to? Maybe you could research their qualifications ahead of time. Hang in there, ! Best of luck in your search for answers and trying to get your hubby the best treatment! in Michigan > > He was discharged yesterday. > > The barium swallow says: normal swallow, delayed emptying distal > oesophagus and beaked appearance. > > Endoscopy: no stenosis. > > Further investigations (to come): Case has been referred to thoracic > surgeons for their advice - to arrange out patient appointment to > discuss possibility of distal oesopagectomy. > > HOWEVER when he left the hospital te surgeon said to him they may > not need to do the ectomy. > He's to go in for a manometry on Thursday, which they could have > done the week he was an inpatient. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Thanks . In the time he was in hospital hubby was told he'd have an oesphagectomy, a myotomy or perhaps a dilatation. No wonder he is confused. I don't even know his potential surgeon's name, or spoken to any medical staff despite trying to, and actually being there a lot of the time.The mention of more dilatations thrown into the mix has made me scurry away to find evidence for and against!! I copied out these interesting debates... Achalasia of the Cardia: Dilatation or Division? Is Pneumatic Balloon Dilatation Justifiable Any More? http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1963626 <http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1963626> I read that Mike is allegedly a " confirmed dilator " ! [:-?] > > > > He was discharged yesterday. > > > > The barium swallow says: normal swallow, delayed emptying distal > > oesophagus and beaked appearance. > > > > Endoscopy: no stenosis. > > > > Further investigations (to come): Case has been referred to > thoracic > > surgeons for their advice - to arrange out patient appointment to > > discuss possibility of distal oesopagectomy. > > > > HOWEVER when he left the hospital te surgeon said to him they may > > not need to do the ectomy. > > He's to go in for a manometry on Thursday, which they could have > > done the week he was an inpatient. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 I don't think any of the tests were visually recorded. It's not something I've seen done here except for ultrasounds for pregnant people to buy a copy of. Hubby did meet the surgeon and wrote what he thought was how the name sounded...then lost the piece of paper. The surgeon is a woman. It's laughable how little I know. > > > > He was discharged yesterday. > > > > The barium swallow says: normal swallow, delayed emptying distal > > oesophagus and beaked appearance. > > > > Endoscopy: no stenosis. > > > > Further investigations (to come): Case has been referred to thoracic > > surgeons for their advice - to arrange out patient appointment to > > discuss possibility of distal oesopagectomy. > > > > HOWEVER when he left the hospital te surgeon said to him they may > > not need to do the ectomy. > > He's to go in for a manometry on Thursday, which they could have > > done the week he was an inpatient. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 I'm far from being an expert in this area but this is my experience. I had my 6 month post surgical check-up with a manometry two weeks ago. The doctor said I'm still having contractions in my esophagus but when I swallow the contractions occur all at the same time so they don't get food down to the stomach. Oddly when I had my manometry before surgery it showed no peristalsis at all. But the second manometry was done at the University of Washington and was much more comprehensive than the first so I think there is really no change. When I was diagnosed with achalasia last year the barium swallow showed a bird's beak. When I brought my copy (on a CD) of the test to my surgeon, he said I was showing signs of end stage disease with the formation of a j pouch all of which scared the living daylights out of me. I scheduled surgery ASAP and had my myotomy a month later. After surgery I stopped having the pain when I swallowed. Swallowing became easier, regurgitation stopped, aspiration and coughing at night stopped and I can now sleep flat at night. The awful incredibly painful " heartburn " stopped although I did get regular heartburn on and off that slowly stopped. Before my second manometry I hadn't had any heartburn for two months. Ha Ha but I've been getting heartburn after the tests. My esophagus obviously didn't like them. It goes away with Pepcid AC which didn't work before surgery but now works like a charm. The most important change after surgery was being able to eat again and get food into my stomach. My diagnosis is just achalasia. From what my doctor said my esophagus will eventually stop all movement as the nerves die. It doesn't work now anyway so that won't be a change. As long as the pain stopped and I can eat I'm happy. Apparently all the pain with swallowing wasn't my esophagus in spasm or caused by the way my esophagus contracts. Who knows what it was as long as it is gone now. Get a good surgeon and a myotomy will be a snap. .... I'm reading that in a lot of cases the myotomy helps with swallowing but not the spasms/chest pain. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Following his 8 day admission to hospital and an endoscopy, manometry test and barium swallow, he & I are going to speak to medicals staff tomorrow afternoon about the options. > > Hi everyone, > > My husband is 39. He's in hospital just now because his symptoms > (severe non-cardiac chest pain, regurgitation, > difficulty swallowing) have become too debilitating for him to cope > with. > > He was diagnosed about 6 years ago after suffering the symptoms for > 18 months. One NHS consultant gastro-enterolgist told him it was in > his head!! > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > notes are down south) and 2 Botox injections. > > It's the chest pain that floors him the most at the moment. > Nifedipine, GTN and viagra gave no effect except to give him > headaches. > > I'm reading that in a lot of cases the myotomy helps with swallowing > but not the spasms/chest pain. > Would that be a reasonable generalisation to make or not? > > I'm not sure what is going to happen to him. I've yet to speak to > medical staff or get reliable info from him! They mentioned myotomy > but also partial removal of his lower eosophagus, which I thought > was a bit extreme, considering they could try a myotomy with > fundoplication first. > Perhaps they learned something from the barium swallow. He'll have > an endoscopy tomorrow, so hopefully will know more. My worry is that > they'll discharge him without doing anything other than swallow > tests and endoscopy. > > It's a relief to know others have the same symptoms and to get tips > and ideas from others about what relieves their chest pain/spasms. > > I do find reading about " end stage achalasia " disturbing. I've seen > TV documentaries about oesophagectomy, and I've read about people's > experiences. > > Anyway thanks for letting me think out loud! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 After his admission in February, FINALLY, with no 2nd opinion as he couldn't wait that long, hubby is having surgery on 26th Aug with thoracic surgeon. Surgeon will attempt to do keyhole surgery but if he finds the O is a mess, will just open hubby up and chop some off. Sorry not in the mood for technical terms. I think I'm more anxious and cynical than he is, me being an NHS nurse. Anyway, I might have vent here soon, so have re-awakened my thread! > > > > Hi everyone, > > > > My husband is 39. He's in hospital just now because his symptoms > > (severe non-cardiac chest pain, regurgitation, > > difficulty swallowing) have become too debilitating for him to > cope > > with. > > > > He was diagnosed about 6 years ago after suffering the symptoms > for > > 18 months. One NHS consultant gastro-enterolgist told him it was > in > > his head!! > > > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > > notes are down south) and 2 Botox injections. > > > > It's the chest pain that floors him the most at the moment. > > Nifedipine, GTN and viagra gave no effect except to give him > > headaches. > > > > I'm reading that in a lot of cases the myotomy helps with > swallowing > > but not the spasms/chest pain. > > Would that be a reasonable generalisation to make or not? > > > > I'm not sure what is going to happen to him. I've yet to speak to > > medical staff or get reliable info from him! They mentioned > myotomy > > but also partial removal of his lower eosophagus, which I thought > > was a bit extreme, considering they could try a myotomy with > > fundoplication first. > > Perhaps they learned something from the barium swallow. He'll have > > an endoscopy tomorrow, so hopefully will know more. My worry is > that > > they'll discharge him without doing anything other than swallow > > tests and endoscopy. > > > > It's a relief to know others have the same symptoms and to get > tips > > and ideas from others about what relieves their chest pain/spasms. > > > > I do find reading about " end stage achalasia " disturbing. I've > seen > > TV documentaries about oesophagectomy, and I've read about > people's > > experiences. > > > > Anyway thanks for letting me think out loud! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 Thanks . We were waiting for a 2nd opinion but hubby unable to wait that long (he feels) so has elected to go with this surgeon at the Royal Infirmary Edinburgh. He has experience in ectomies but less experience with achalasia sufferers. > > > > > > Hi everyone, > > > > > > My husband is 39. He's in hospital just now because his symptoms > > > (severe non-cardiac chest pain, regurgitation, > > > difficulty swallowing) have become too debilitating for him to > > cope > > > with. > > > > > > He was diagnosed about 6 years ago after suffering the symptoms > > for > > > 18 months. One NHS consultant gastro-enterolgist told him it was > > in > > > his head!! > > > > > > Fast foward to having 4 or 5 dilations (it may have been 6 but his > > > notes are down south) and 2 Botox injections. > > > > > > It's the chest pain that floors him the most at the moment. > > > Nifedipine, GTN and viagra gave no effect except to give him > > > headaches. > > > > > > I'm reading that in a lot of cases the myotomy helps with > > swallowing > > > but not the spasms/chest pain. > > > Would that be a reasonable generalisation to make or not? > > > > > > I'm not sure what is going to happen to him. I've yet to speak to > > > medical staff or get reliable info from him! They mentioned > > myotomy > > > but also partial removal of his lower eosophagus, which I thought > > > was a bit extreme, considering they could try a myotomy with > > > fundoplication first. > > > Perhaps they learned something from the barium swallow. He'll have > > > an endoscopy tomorrow, so hopefully will know more. My worry is > > that > > > they'll discharge him without doing anything other than swallow > > > tests and endoscopy. > > > > > > It's a relief to know others have the same symptoms and to get > > tips > > > and ideas from others about what relieves their chest pain/spasms. > > > > > > I do find reading about " end stage achalasia " disturbing. I've > > seen > > > TV documentaries about oesophagectomy, and I've read about > > people's > > > experiences. > > > > > > Anyway thanks for letting me think out loud! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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