Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Hi Judy - welcome to the group. I'm sorry for your husband's situation, this is not a fun disease to deal with. I'm guessing from your use of the word "stone" that you're British? As I recall, there are some British specialists listed in the database of doctors. I urge you to find someone who is TRULY EXPERIENCED with achalasia -- it can mean the difference between night and day in the quality of the treatment your husband receives. There hasn't been any reliable benefit from alternative medicine that I've seen so far among members of this group. We've had members try a variety of herbal and nutritional supplements, plus meditation, acupuncture, and chiropractic medicine. Also, I would like to encourage you to do your own research into the surgery (it's called a Heller Myotomy) and other treatments. There's a tremendous amount of information available in the Links section of the group: achalasia/links . And the polls are very enlightening too: achalasia/polls This poll in particular is interesting: achalasia/surveys?id=1016261 (if you can't see the poll w/o voting, just vote "I HAVE NOT needed further treatments" and then you'll be able to see the poll results. According to this poll, acid reflux is a 50/50 thing (31 vs 29 in this poll). I too was told that surgery meant "guaranteed heartburn for life" by my first achalasia specialist back in 1996. You know what? He was lying to me for his own selfish reasons (he wanted me to be a subject in his experimental treatment!) There is a procedure called partial fundoplication that can be done to reduce acid reflux, and there are drugs (PPI, or proton pump inhibitors) that reduce acid production, so even if heartburn is a problem, there are ways to manage it. In that same poll you'll see that 92% of the respondents say they are glad they had the surgery and would do it again, knowing what they know now. Only 8% of the people say they are sorry they had the surgery and would NOT do it again, based on what they know now. These numbers correspond with success rates of 90%-95% that are found in studies of the efficacy of the Heller Myotomy. The main factor I've seen in my time in this group is that the level of the doctor's experience in treating achalasia seems to be the best predictor of successful outcome. There is still the occasional person who does not have a "successful" outcome even after going to the best of the best doctors, and there are also people who have a good outcome even though they went to a less experienced physician. But for the most part, the more experienced the doctor, the more successful the treatment outcome. Hope this helps!Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Debbie, Thank you for taking the time to answer my message and for the most helpfull information it contained. We are actually Australian but as I am " old " ie prior metric I still refer to stone instead of kilo's. It would appear from what I have now read and your advices that the longer you leave it to have the surgery the more risk you take of stretching and malnourishment. In retrospect the chest pains date back ten years or so. I recall taking him to the emergency section of the hospital back in about 94 with chest pains and them eventually putting him on a heart monitor. The lead up to these pains was severe indigestion (which we now know was not the case at all}. We have been messed around by experts ie loss of gall bladder etc. but have now found a very knowledgable Dr. who does nothing but treat these type of conditions. He has been the most helpful but as we are so lacking in knowledge we have not been game to make any decision. Now in reading all the other sufferers stories it at least gives us something upon which to base a decision. The only thing I would ask is, approximately how long does the recovery take ie until he would be able to eat normally. After the first inflation he was really good within a couple of days. The next one made little improvement and the chest pains are more severe than ever. I have put a lot of this down to stress as we were overseas for 10 weeks and came home and had to have the second as well as play catch up with work and had big problems with some of our staff not doing what they should etc. To have some indication of time would be good to try and plan this surgery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi Jo ! Welcome ! Do tell us more about yourself - what are your symptoms that make it impossible for you to work and are you going to have surgery - where do you live ? Please feel free to ask questions - someone will chip in with some advice or suggestion/ Joan Johannesburg South Africa Re: Achalasia Hi to everyoneI was diagoned with Achalasia when I was 20 i'm now 27 and had first balloon dilation when I was 20 Ive had 3 altogether. I am unable to work due due to my condition and have only recently joined this group so pls any emails or chatting will be appriciated.RegardsJo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Jo - there is another Jo here who is from Florida & she had to make changes in her line of work as well. I'm right with Joan ....let us know some more info & we will be glad to chip in with help anyway we can. In the meantime, peruse the site and the internet for all the info you can. That was a great help to me. Hang in there ! Cindi in PA -- Re: Achalasia Hi to everyoneI was diagoned with Achalasia when I was 20 i'm now 27 and had first balloon dilation when I was 20 Ive had 3 altogether. I am unable to work due due to my condition and have only recently joined this group so pls any emails or chatting will be appriciated.RegardsJo ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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