Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Hi Rich, I understand the fear factor involved with deciding to do surgery, however had I have known, with the right surgeon how wonderful the results could be..I would have done it sooner. My surgeon at UCLA told me that with achalasia the esophagus is basiclly " dead " . With that in mind, dilation is usually short term (for most,not all). Plus, once you begin dilations after dilation, you will form scar tissue which could make surgery less effective down the road. These are important things to remember because achalasia is for a lifetime. I had it for 22yrs, had nothing done ever, suffered and became malnourished for years. The surgery was " no biggie " . The perspective of recovering for 2 weeks is NOTHING compared to the years of suffering with extreme dysphagia!!! The surgery done with lapro is in my opinion less painful then having the flu...lol If you are healthy and can have the surgery I would tell anyone to do it...with the best surgeon...whose done many and is an expert ( no hackers). Sadly, we are rare and can go years without getting the proper treatment. I hope this will change. I have no regrets, I am eating well now and feel like a million bucks. Those that are new to diagnosis, need to research and decide based on the facts...myotomy is 90% successful, that is very good news. Julee, So Calif. ________________________________ From: richinchicagousa <jazz77@...> achalasia Sent: Sun, January 2, 2011 9:53:56 AM Subject: Re: Rich  , I have never had a myotomy, so this will be the first! I've had 2 dilatations, though. The first to 30mm, the second to 35 mm. I was never completely satisfied with the results, though. By the time I opted for the first dilatation, my esophagus had already become tortuous. If I were to do this over, [HINT: MY RECOMMENDATION TO THE NEWLY DIAGNOSED] I would have requested dilatation immediately after my initial diagnosis and not waited (years). I was too scared to deal with surgery and recent new dad as well. To make matters worse, I felt I was being given the " hard sell " for surgery by the hospital and ran the other way! Dilatation was not presented as a strong option for me ... but I think it would have been a perfect initial, conservative intervention and much better than doing nothing! And in skilled hands, a very smooth and straightforward procedure. --Rich [Chicago] > > Have you had a myotomy before? I think this will be a HUGE part of your >decision as 2nd myo's seem to be far less effective and for a shorter period of >time. Maybe I'm wrong but I can't think of anyone who's had a 2nd and done well >for many years. > > ~ in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Rich, I do understand what you meant, just wanted others who read here to know that the surgery if done correctly can work wonders. I think I speak for many of us, finding a great surgeon, one that is most likely at the top level of their field such as a thoracic surgeon with further training in achalasia is hard to find....who to trust??? This group has been a great help to many suffers because they have all been there and share information. Really it was piece by piece to figure this all out for myself, the doctors that treated me in the past had NO CLUE what to do for me. I think you can relate. I really don't understand why the esophagus is not treated more seriously, it's a major thing! I did hear that botox is the big no,no. Only should be used for those who cannot profit from dilation or surgery (that is what I have researched). But, I read that many get it as a first course treatment, what a shame. Doctors should really get their acts together and realize the misery they can cause by the wrong information. Rich, all I can say is that I do understand how you must feel right now, it's a tough spot, I know you will get through this and with the help and support from this group, at least you have some brains here that you can bounce things off. I wish you all the best in 2011!!!! Julee, So Calif. ________________________________ From: richinchicagousa <jazz77@...> achalasia Sent: Sun, January 2, 2011 8:03:40 PM Subject: Re: RichChicago!  Julee, I am glad to hear how well things worked out for you. (It actually made me feel better to read what you wrote.) I agree with what you have written. I didn't mean to suggest that achalasia sufferers opt for dilation over surgery but rather that they take steps sooner than later to improve swallowing (possibly lessening esophageal stretching) instead of waiting and doing nothing (which is what I did). My previous GI doc believed that dilating was the " way to go " . According to him, success rates 5-10 years post-dilatation were on par with myotomies. He was a skilled clinician as well as a " paper writer " and may well have had data to support such a claim. However, I am not so sure I agree with him. (He is not a surgeon.) As it turned out, he was not willing to give me " dilation after dilation " as it would have offered me no additional improvement. Of course, Botox is the big no-no. If I heard right, my surgeon implied that that would have been a deal-breaker (no myotomy possible due to too much scar tissue). --Rich [Chicago] > > > > Have you had a myotomy before? I think this will be a HUGE part of your > >decision as 2nd myo's seem to be far less effective and for a shorter period >of > > >time. Maybe I'm wrong but I can't think of anyone who's had a 2nd and done >well > > >for many years. > > > > ~ in NC > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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