Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 I saw a new surgeon today. He says he has had a great deal of experience and knows a lot about achalasia and has been doing this kind of surgery since he was a junior surgeon. He says he is sure I have secondary achalasia which was caused by a hiatus hernia and not primary achalasia. He says that primary achalasia usually shows symptoms around age 30years and secondary achalasia is not apparent till much later - I only had mild symptoms when I was 63yrs. The shattering bit was that he says that in my case, it is a waste of time trying any more myotomies and dilatations because of the dilated oesophagus and the diverticulum and because they seldom work the next time and then not for long so he suggests an oesophagectomy which he says, after the initial surgery and recovery period will give me a better quality of life and a vast improvement on what I have now. I should be able to eat most things - but in smaller quantities and sleep with only slight elevation. Bending down will not be a problem. Acid reflux is not a problem in a high oesophagectomy, because the tubes feeding the acid into the stomach are cut when they pull the stomach up into my chest. In a partial oesophagectomy it can be a problem, but they do a kind of fundoplication. The surgery will involve a laparotomy as well as going into the chest at the side. I will be in ICU for 4 days and kept ventilated and asleep for that time to give me time to recover. Then a barium x-ray to check for leaks and back to the ward. I will be in hospital for 2 weeks and then they can send me to a recovery 'step down facility where I can be cared for until I can cope and go home. I will be given intravenous feeding (Total Preneteral Nutrition) until I can swallow and eat liquids and soft food. (liquids from the 5th day after the barium x-ray) I told him I would think seriously about this and it would have to be next year because there are too many things that I need to finish this year still, and if it is not an emergency cannot see my way to not do. Hell - it is traumatic and radical stuff !!! I am more than a little shell shocked to say the least. Even though you have an idea it could happen when your fears are confirmed it is a real shock anyway. At least I will be sort of prepared for it an not wake up to it when it is done like Jan and Biancka. I somehow like him, and sort of trust him, but he is a peppery sort of person and I guess he could have a short fuse ! His sort often get good response from the nurses - they are scared of him so it may work in my favour. He also seemed in a hurry, but did not hesitate to answer my questions and explain. On Monday I go for a barium x-ray and will try and see my gastroenterologist and talk it over with him. There is no one else here that I can discuss it with. I can almost taste the Lemonade ! Joan Joan PearseJohannesburg South Africa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Thanks Jan ! I sort of know it is inevitable, but while I am still managing it does seem to be silly to look for trouble ! I have a couple of projects which I feel obliged to finish if I can before I embark on a 6 month period of recovery. I am the author of a textbook on Infection Control used in this country which is due for reprint and revision. I am almost finished with my share of the revision and would like to complete this. I am also co-coordinator for an Infection Control Course which is due for it's next run in November - after that the rest of the team can take over until I get back. I have several hours of lectures to prepare overhead transparencies for as well - I have completed the power point presentation, but we like to have old fashioned transparencies in case the projector fails. It is not as though it is an emergency yet. I should be done with this all by November and then to get Christmas over with I should be free to have the op or not. I also have a small wound on my calf which is taking its time healing so until that is healed well I cannot go into elective surgery. It is not septic, but was a deep gash from the car door - should have had it stitched but did not realise how deep it was.My legs are rather swollen from oedema from BP meds and that does not help either. I could go to look for another surgeon who might be prepared to redo the Heller etc, but if the chances of success are slim why all that pain for nothing. Thanks for listening ! Hugs, Joan Re: Saw the surgeon today Joan, You have a lot to think about with this. It sounds like he knows his stuff and has some experience. I guess the thing you have to consider is the quality of life you are having now, and what you will have after surgery. I am still in too early recovery to know how much swallow ability I will have. Everyone I have contacted on the internet and the doctor's office and reading material about eating after esophogectomy all point to 6months to a year of being about when you can expect to be eating normally, but in smaller amounts. It sounds as if you have alot of time to think this over, but still it is not an easy decision to make. Hugs, Jan from NKY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Carol that makes two of us !! Perhaps one should not think about it in such detail, but I am the sort who is interested from a professional point of view and in any case I like to know what to expect. Somehow you feel better prepared. I will be thinking of you on the 19th. and hope you can post soon afterwards to tell us all about it. Hugs, Joan Re: Saw the surgeon today OMG Joan, this sounds like exactly what my surgeonsaid. Except that my A is probably secondary to ahiatal hernia surgery I had 34 years ok. They aregoing in thru my side as that was the way the originalsurgery was done. He does not know yet exactly what hewill have to do until he gets in and clears the scartissue away and "puts everything back where it issupposed to be". I have my surgery the 19th ofOctober. To say I'm scared to death is putting it mildly.=====Carol (aka Carol_in_VA and GrnEyesVA) ...If life gives you lemons, make lemonade... but if life gives you limes, make margaritas!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2007 Report Share Posted September 11, 2007 wrote: > ...my last scope it showed I had an E. ring - scar tissue > from terrible reflux. ... This could be a Schatzki Ring. They can do a pretty good imitation of achalasia. They generally stretch or bust these with dilatation. Then it is mostly a matter of controlling the reflux so it does not happen again. See: Schatzki Ring MedicineNet http://www.medicinenet.com/schatzki_ring/article.htm > He said that if it comes back that I have a high level of acid, they > can do a surgery to correct that, but he warned that I would never > be the same again. Probably a selective vagectomy. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 , It sounds like you went into today's appointment very prepared - that's great! What a surprise that an E ring showed up previously and no one told you! Who did that particular scope? I don't think I would trust that doctor in the future to give you the whole report. I'm not sure if I'm understanding you correctly, in one sentence you say you're not on acid-reducing meds. and another you say you're not? Did they tell you before that you had reflux? It would be great if they could help you out with a dilation! has had the 24 hour pH probe done twice. I think it wasn't too uncomfortable (the tube is narrower than for a manometry), just kind of embarrassing for him to be seen with the tube taped to his face. He didn't go to work that day and kind of stayed indoors. Good luck on Thursday and thanks for keeping us updated! in Michigan > > I wanted to keep everyone posted on what has been happening with me. > Today I saw Dr. Little. I took my mom with me so we were both trying > to think of everything to ask him. I also wrote out a 2 > page 'letter' explaining in order all the tests I have had and all > my symptoms for the past year and a half. He was very nice but he > gave me a big surprise by saying that he doesn't think there is any > way in the world that I have achalasia! He said basically that I DO > NOT. He left no room for question. > > He said on my last scope it showed I had an E. ring - scar tissue > from terrible reflux. No one had ever told me that. I don't have > heartburn (I am not acid meds) but I have terrible stomach pain > which is located at the bottom of my E. - probably from acid. He > wants me to have a test which checks the acid level in my stomach. > Has anyone had one of these? I can either do it through scope or > they can put a tube in my nose for 24hrs. I am due to have the scope > Thurs, but this isn't long enough to be off my acid meds (I need to > be off about 4 days, and I took one this AM). So not sure what they > are going to do. > > He said that if it comes back that I have a high level of acid, they > can do a surgery to correct that, but he warned that I would never > be the same again. Dumb me didn't ask what THAT meant. Anyway, > that is where it all stands. > > I was surprised about the achalasia bit. I just want to get a > diagnosis and be done with it!!!! Surgery sounds good right now! > > Oh well. I hope you all are doing good today. Just wanted to give > you latest news update;) > > in Ohio....who doesn't have achalasia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Notan and , I wondered if her surgeon could've meant a fundoplication, to keep the stomach acid from coming up. , before you have that particular surgery done, they must do a manometry to make sure you don't have a motility problem. As 's Univ. of Michigan doctor once said, If it turns out you have a motility problem, " you'll be miserable and the surgery is irreversible. " I don't know how accurate that statement is, but I would get that checked out first. Have you had a manometry done, ? in Michigan > > ...my last scope it showed I had an E. ring - scar tissue > > from terrible reflux. ... > > This could be a Schatzki Ring. They can do a pretty good imitation of > achalasia. They generally stretch or bust these with dilatation. Then > it is mostly a matter of controlling the reflux so it does not happen again. > > See: > Schatzki Ring > MedicineNet > http://www.medicinenet.com/schatzki_ring/article.htm > > > He said that if it comes back that I have a high level of acid, they > > can do a surgery to correct that, but he warned that I would never > > be the same again. > > Probably a selective vagectomy. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Oop! I didn't mean: I'm not sure if I'm understanding you correctly, in one sentence you > say you're not on acid-reducing meds. and another you say you're not? I meant that it sounded in one sentence like you were taking them and in one that you were not. in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 , I'm in a similar situation. I've had 2 manometry tests done. One showed possible achalasia and one showed poor motility but no achalasia. Be sure that all of the tests are done to prove you have reflux before considering surgery. I'm waiting a few months and then plan to do the Bravo test. I did a 24 hour ph study already, but it did not show good correlation; unfortunately I did the test while on PPI meds. I'm very curious to know what your tests show. Good Luck! > > > > I wanted to keep everyone posted on what has been happening with me. > > Today I saw Dr. Little. I took my mom with me so we were both trying > > to think of everything to ask him. I also wrote out a 2 > > page 'letter' explaining in order all the tests I have had and all > > my symptoms for the past year and a half. He was very nice but he > > gave me a big surprise by saying that he doesn't think there is any > > way in the world that I have achalasia! He said basically that I DO > > NOT. He left no room for question. > > > > He said on my last scope it showed I had an E. ring - scar tissue > > from terrible reflux. No one had ever told me that. I don't have > > heartburn (I am not acid meds) but I have terrible stomach pain > > which is located at the bottom of my E. - probably from acid. He > > wants me to have a test which checks the acid level in my stomach. > > Has anyone had one of these? I can either do it through scope or > > they can put a tube in my nose for 24hrs. I am due to have the scope > > Thurs, but this isn't long enough to be off my acid meds (I need to > > be off about 4 days, and I took one this AM). So not sure what they > > are going to do. > > > > He said that if it comes back that I have a high level of acid, they > > can do a surgery to correct that, but he warned that I would never > > be the same again. Dumb me didn't ask what THAT meant. Anyway, > > that is where it all stands. > > > > I was surprised about the achalasia bit. I just want to get a > > diagnosis and be done with it!!!! Surgery sounds good right now! > > > > Oh well. I hope you all are doing good today. Just wanted to give > > you latest news update;) > > > > in Ohio....who doesn't have achalasia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 > > > > > > I wanted to keep everyone posted on what has been happening with > me. > > > Today I saw Dr. Little. I took my mom with me so we were both > trying > > > to think of everything to ask him. I also wrote out a 2 > > > page 'letter' explaining in order all the tests I have had and > all > > > my symptoms for the past year and a half. He was very nice but > he > > > gave me a big surprise by saying that he doesn't think there is > any > > > way in the world that I have achalasia! He said basically that I > DO > > > NOT. He left no room for question. > > > > > > He said on my last scope it showed I had an E. ring - scar > tissue > > > from terrible reflux. No one had ever told me that. I don't have > > > heartburn (I am not acid meds) but I have terrible stomach pain > > > which is located at the bottom of my E. - probably from acid. He > > > wants me to have a test which checks the acid level in my > stomach. > > > Has anyone had one of these? I can either do it through scope or > > > they can put a tube in my nose for 24hrs. I am due to have the > scope > > > Thurs, but this isn't long enough to be off my acid meds (I need > to > > > be off about 4 days, and I took one this AM). So not sure what > they > > > are going to do. > > > > > > He said that if it comes back that I have a high level of acid, > they > > > can do a surgery to correct that, but he warned that I would > never > > > be the same again. Dumb me didn't ask what THAT meant. > Anyway, > > > that is where it all stands. > > > > > > I was surprised about the achalasia bit. I just want to get a > > > diagnosis and be done with it!!!! Surgery sounds good right now! > > > > > > Oh well. I hope you all are doing good today. Just wanted to > give > > > you latest news update;) > > > > > > in Ohio....who doesn't have achalasia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 let45ride wrote: > ...I wondered if her surgeon could've meant a fundoplication,... It is possible but the statement that she " would never be the same again, " sounded more like a vagectomy than fundoplication. I have a fundoplication and if I didn't know it was there I wouldn't have any idea it was there, even though I will never be the same again inside. But with a vagectomy, even if you didn't know you had it you may well know that you are never the same again. Actually, some people get over vagectomies very well, but it has that potential to cause long-term changes in the way your body works. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi , As for the reversability (wow, is that correct English?) of the fundoplication: my surgeon suggested to undo my fundo a while ago. He didn't think it would truly make a difference, but if I wanted to, he wanted to give it a go. Yet, it seems to be a pretty heavy surgery to undo a fundo. Just for your information. Love, Isabellalet45ride <brendacoyle@...> wrote: Notan and ,I wondered if her surgeon could've meant a fundoplication, to keepthe stomach acid from coming up. , before you have thatparticular surgery done, they must do a manometry to make sure youdon't have a motility problem. As 's Univ. of Michigan doctoronce said, If it turns out you have a motility problem, "you'll bemiserable and the surgery is irreversible." I don't know how accuratethat statement is, but I would get that checked out first. Have youhad a manometry done, ? in Michigan> > ...my last scope it showed I had an E. ring - scar tissue > > from terrible reflux. ...> > This could be a Schatzki Ring. They can do a pretty good imitation of > achalasia. They generally stretch or bust these with dilatation. Then > it is mostly a matter of controlling the reflux so it does nothappen again.> > See:> Schatzki Ring> MedicineNet> http://www.medicinenet.com/schatzki_ring/article.htm> > > He said that if it comes back that I have a high level of acid, they > > can do a surgery to correct that, but he warned that I would never > > be the same again. > > Probably a selective vagectomy.> > notan> Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Yes, I've had one done, but only one. That showed I swallowed normally 78% of the time, which I thought was low. But the surgeon said that people with A. didn't swallowing normally any of the time with those tests. So... I didn't know about the surgery harming you if you have a motility problem. That is really scary, since I have always thought I DID have a motility problem. If the surgeon does want to go ahead with the surgery, I think I'll request another manometry, just to be on the safe side. I just find it hard to believe that I don't have a motility problem, because I am constantly constipated and when I took Elavil (the side effects were supposed to make the E more active) it worked! I could eat again with it. I don't know. It is so complicated and confusing. Thanks for all the responses! let45ride <brendacoyle@...> wrote: Notan and ,I wondered if her surgeon could've meant a fundoplication, to keepthe stomach acid from coming up. , before you have thatparticular surgery done, they must do a manometry to make sure youdon't have a motility problem. As 's Univ. of Michigan doctoronce said, If it turns out you have a motility problem, "you'll bemiserable and the surgery is irreversible." I don't know how accuratethat statement is, but I would get that checked out first. Have youhad a manometry done, ? in Michigan> > ...my last scope it showed I had an E. ring - scar tissue > > from terrible reflux. ...> > This could be a Schatzki Ring. They can do a pretty good imitation of > achalasia. They generally stretch or bust these with dilatation. Then > it is mostly a matter of controlling the reflux so it does nothappen again.> > See:> Schatzki Ring> MedicineNet> http://www.medicinenet.com/schatzki_ring/article.htm> > > He said that if it comes back that I have a high level of acid, they > > can do a surgery to correct that, but he warned that I would never > > be the same again. > > Probably a selective vagectomy.> > notan> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 , I've been on acid meds (Protonix, Prevacid, Acihpex, you name it) for about 3 years now. But I never thought I had that bad of reflux. I never have heartburn, tho I di have the terrible stomach pain (right at the end of my E). I don't know why I have so much acid because I hardly ever drink pop (maybe a Coke 2-3 times a year), don't drink, don't smoke, and don't eat spicy foods. I do eat tomatoes (we grow them in our garden) but I am careful not to eat too much of that kind of thing. Maybe some people's bodies produce more acid than others, no matter what their diet is? Sorry about the mixup - I guess I meant even tho I took reflux meds, I didn't think the GERD was that bad - I thought it was a mild case. Take care!! Thanks for being there:) let45ride <brendacoyle@...> wrote: Oop! I didn't mean: I'm not sure if I'm understanding you correctly,in one sentence you> say you're not on acid-reducing meds. and another you say you're not? I meant that it sounded in one sentence like you were taking them andin one that you were not. in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi JoAnn, It's nice to hear from you too! I'm glad you're doing well. I haven't posted much lately, but I read the forum everyday. I'm just laying low until I'm ready for more testing. I did contact Dr. Rice's office and sent him my medical records. He told me to wait a few months to see if anything develops and then go up there for re- testing. Things are very busy for me since we are building a house, so testing will have to wait. So far, I'm not getting worse. Dr. Rice's nurse told me that if things worsen, in the meantime, to call her; they will keep my records on file. It's so nice to know I can go there if things get bad again. I'm trying to decide if I should do the Bravo test here or just go to Cleveland and have everything done there. I was amazed at how easy it was to contact his office. Sorry I missed you when you were in Albuquerque. Give me a call if you're in town again. Take Care! > > > > > > > > I wanted to keep everyone posted on what has been happening > with > > me. > > > > Today I saw Dr. Little. I took my mom with me so we were both > > trying > > > > to think of everything to ask him. I also wrote out a 2 > > > > page 'letter' explaining in order all the tests I have had and > > all > > > > my symptoms for the past year and a half. He was very nice but > > he > > > > gave me a big surprise by saying that he doesn't think there is > > any > > > > way in the world that I have achalasia! He said basically that > I > > DO > > > > NOT. He left no room for question. > > > > > > > > He said on my last scope it showed I had an E. ring - scar > > tissue > > > > from terrible reflux. No one had ever told me that. I don't > have > > > > heartburn (I am not acid meds) but I have terrible stomach pain > > > > which is located at the bottom of my E. - probably from acid. > He > > > > wants me to have a test which checks the acid level in my > > stomach. > > > > Has anyone had one of these? I can either do it through scope > or > > > > they can put a tube in my nose for 24hrs. I am due to have the > > scope > > > > Thurs, but this isn't long enough to be off my acid meds (I > need > > to > > > > be off about 4 days, and I took one this AM). So not sure what > > they > > > > are going to do. > > > > > > > > He said that if it comes back that I have a high level of acid, > > they > > > > can do a surgery to correct that, but he warned that I would > > never > > > > be the same again. Dumb me didn't ask what THAT meant. > > Anyway, > > > > that is where it all stands. > > > > > > > > I was surprised about the achalasia bit. I just want to get a > > > > diagnosis and be done with it!!!! Surgery sounds good right > now! > > > > > > > > Oh well. I hope you all are doing good today. Just wanted to > > give > > > > you latest news update;) > > > > > > > > in Ohio....who doesn't have achalasia > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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