Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Hi my son (aged 32) is very near to reaching end stage achalasia. He is scared to death and at present is in denial and whilst surgeons in NZ want to operate in February 09 he is finding every reason not to have it. Have trawled the net to find out more about the meaning and treatment for end stage but the language is far to technical. Can anyone give me in plain english what to expect? Thank you for your time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Hi So sorry to hear that your son has reached end stage Achalasia. I am already there. Show him this message. Urge him to have surgery because without it he will starve to death. Frightening I know but I faced it and althogh I was as in denial as your son had to have surger to rescue, yes rescue my life. I only weighed 88lbs before surgery! I looked like something from a wartime concentration camp. That's how bad I was and had to have my ectomy to save my life. Now the consequenses for most end stage Achalasian is (to be brutal) death. Ask your son this. How much does he value family life? Or his own!! Implore himto have the surgery. The consequenses of delaying my surgery until almost to late is that I am now very vulnerable to MRSA (which I have at present), E-coli (which affected my kidneys and liver). I now have to have a J-Tube feed every night for the rest of my life (this was made plain to me by surgeons that I know). But oh I feel for your son. He must be frightened. If he wishes to talk by e-mail please pass on the following e-mail address christine@... I will be there to answer as many questions about what to expect. That is if he needs to talk to someone who has gone through what he is now going through. Good luck. I live in the UK by the way and check my e-mails 3 times a day so can always chat with your son. ________________________________ From: phil.brown55 <phil.brown55@...> achalasia Sent: Wednesday, December 3, 2008 9:45:43 AM Subject: end stage achalasia Hi my son (aged 32) is very near to reaching end stage achalasia. He is scared to death and at present is in denial and whilst surgeons in NZ want to operate in February 09 he is finding every reason not to have it. Have trawled the net to find out more about the meaning and treatment for end stage but the language is far to technical. Can anyone give me in plain english what to expect? Thank you for your time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Phil.wrote: > Hi my son (aged 32) is very near to reaching end stage achalasia. What treatments has he had in the past and what kind of surgery are they suggesting now? Even with end stage achalasia (megaesophagus) they will sometimes try to do a Heller myotomy or redo one that has been done before. That is not a bad surgery. It is worse if it has to be open but still there are many worse surgeries than open Heller myotomy. The biggie is the esophagectomy, known here as simply ectomy. That is were they remove part of the esophagus or more likely remove much and leave only a part of it. It is major surgery and it is understandable that one would be afraid of it. There are members here that have had an ectomy. He won't get better without help and at that stage his esophagus probably will get worse. If there is nothing left but ectomy then he may decide to live with it until symptoms become too bad. There are others here that have been in that situation and used the time to consult more doctors and look at all the options. They can tell you more about how it has worked out for them. Let us know more and we can be more specific. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The term " end stage achalasia " sounds dreadfully scary, but not nearly as bad as a term such as " end stage lymphoma, " where it means or implies an imminent death. I am not even sure as to the precision of the term " end stage achalasia, " in other words precisely what it means. My belief (without checking the internet for definitions) is that it is the last stage the esophagus goes through in its deterioration from achalasia. (Notan, as always, please feel free to correct me if I'm wrong). A couple of things, I believe that this is a subjective call based upon observations taken from diagnostic tests, such as a barium swallow, endoscopy or manometry. I think different doctors have different " interpretations " of what they would consider " end stage. " I had my (open) heller myotomy in 1991. Many years later when I needed my medical records, s Hopkins sent hundreds of pages to me. That was about two years ago. In those papers I discovered, for the first time, that I had " end stage achalasia " back then. Nobody told me that. I still have my esophagus. I still, with " limitaitons " eat well and sleep fine, and have myself monitored annually. I am agreeing with the excellent information provided by Notan and , and adding on that you can't allow this term to drive you to the edge. You ask " what to expect. " I would simply advise you to go out there and get several different opinions from the best doctors you can get to see. You may be surprised to see how they may differ. I do not know which operation your surgeons are talking about (ectomy or myotomy: big difference), but I can tell you that, rather than allowing the term " end stage " to frighten, just take it as an additional " wake up call " to proceed with the course of action that makes the most sense to you after having heard several different opinions. ________________________________ From: phil.brown55 <phil.brown55@...> achalasia Sent: Wednesday, December 3, 2008 4:45:43 AM Subject: end stage achalasia Hi my son (aged 32) is very near to reaching end stage achalasia. He is scared to death and at present is in denial and whilst surgeons in NZ want to operate in February 09 he is finding every reason not to have it. Have trawled the net to find out more about the meaning and treatment for end stage but the language is far to technical. Can anyone give me in plain english what to expect? Thank you for your time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 yeah, I can tell you what to expect. But what are your son's symptoms? What do you mean by " he is in denial " ? He may be a realist. " End-stage " may mean he requires an esophagectomy, a gastric pull-up, a colonic interposition, or possibly other things. Or is it just a myotomy with a fundoplication? That's no big deal. But, like everything, there are risks. And I wouldn't dismiss your son's hesitation about undergoing surgery that could possibly make things worse. ly, as a person who had therapeutic failure from all other typical previous achalasia procedures, my laprascopic myotomy/fundoplication surgery DID make things worse. LES pain became more persistent. The head GI thought my " end-stage " achalasia would require more aggressive surgery, which I wisely rejected until all other alternatives were tried. My other answer is this: If your son doesn't want to have surgery, then he shouldn't. It's HIS decision. He has to live with the condition and experience the symptoms. At 32, he can do all the research he wants to do. That's what HE should do. The problem I see is doctors who will not treat conditions that are bothersome, not the patients who are reluctant to undergo surgery. Doctors will always want to perform surgery, and be less likely to explore alternative, less-invasive treatments. When his situation gets bad enough, he will seek appropriate care. > > Hi my son (aged 32) is very near to reaching end stage achalasia. He > is scared to death and at present is in denial and whilst surgeons in > NZ want to operate in February 09 he is finding every reason not to > have it. Have trawled the net to find out more about the meaning and > treatment for end stage but the language is far to technical. Can > anyone give me in plain english what to expect? Thank you for your > time. > Quote Link to comment Share on other sites More sharing options...
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