Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Ive already done a Heller Myotomy (about 3 years ago), and didnt get any positive results! So now im in search of a better solutioin! Help! Â Phil From Miami From: puddleriver13 <puddleriver13@...> Subject: Re: Phil From Miami achalasia Date: Sunday, January 22, 2012, 3:54 PM Â Hi, Phil ~~ Castell looks to be very good. Rosemurgy seems a bit closer, and with a pretty good team. Castell is a GI guy/Rosemurgy is a surgeon. Here are some posts from this board about Rosemurgy: achalasia/message/64089 Some about Castell: achalasia/msearch?query=Castell & pos=0 & cnt=1\ 0 This about Castell: " As for tx of achalasia, most experts (though not the preeminent gastroenterologist in the field, Don Castell) recommend Heller myotomy over pneumatic dil. That being said, the practice is changing back towards more dils. " http://forums.studentdoctor.net/archive/index.php/t-652764.html So it looks like Castell would/will be recommending a balloon dilation, and Rosemurgy, the most modern Heller Myotomy. Just looked up your posting history, and see that you've already had a Heller which isn't holding. Who did your first Heller? What does he(she?) say? Good luck with this! in WV > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > Phil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Dr. Unger down here in Miami florida did my Heller Myotomy! Im pretty scared of getting another surgery done but if i have to i will! I havent shown any progress! I need to get better! Theres got to be a way! n, 1/22/12, puddleriver13 <puddleriver13@...> wrote: From: puddleriver13 <puddleriver13@...> Subject: Re: Phil From Miami achalasia Date: Sunday, January 22, 2012, 3:54 PM Â Hi, Phil ~~ Castell looks to be very good. Rosemurgy seems a bit closer, and with a pretty good team. Castell is a GI guy/Rosemurgy is a surgeon. Here are some posts from this board about Rosemurgy: achalasia/message/64089 Some about Castell: achalasia/msearch?query=Castell & pos=0 & cnt=1\ 0 This about Castell: " As for tx of achalasia, most experts (though not the preeminent gastroenterologist in the field, Don Castell) recommend Heller myotomy over pneumatic dil. That being said, the practice is changing back towards more dils. " http://forums.studentdoctor.net/archive/index.php/t-652764.html So it looks like Castell would/will be recommending a balloon dilation, and Rosemurgy, the most modern Heller Myotomy. Just looked up your posting history, and see that you've already had a Heller which isn't holding. Who did your first Heller? What does he(she?) say? Good luck with this! in WV > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > Phil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Ive had atleast 3 dilations. not with big balloons though. From: lindsaykite <lindsaykite@...> Subject: Re: Phil From Miami achalasia Date: Sunday, January 22, 2012, 9:01 PM Â Hi Phil, have you had a dilation done yet? I had a HM 10 weeks ago and it didn't help me. In fact I think it has made things worse! My surgeon has told me that a dilation might help. Crossing all my fingers and toes that this helps. (Australia) > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > Phil > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 Where is Dr. rosemurgy stationed at? Ive had 3 dilations. A couple balloons and probably one botox. Im pretty up to date as to what im dealing with but i just need to get the right help. I cant sit too long and eat. I have to forcefully guzzle down fluid to push down the food stuck in my throat. Just this morning, I woke up puking my brains out and then had a MASSIVE " spasm " . (I think thats what its called) Well anyway, it felt like i was having a heart attack. My Dr. perscribed me " Nitrostat " to take the pain away (low dosage). I use that as i need it, not on an annual basis. Well i took that and it didnt do too much. I find myself spitting alot after having a spasm. Not being able to swallow my own spit! So i keep a spit bucket next to my bed. Havent eaten all day because im afraid of food coming up again. But i will try to eat Chef Boyardee later.  I have complications swallowing alot of foods but the ones that are the worst are : Rice, Salad, Steak, Vegetables, Popcorn, & Cereal.  Need Answers From: puddleriver13 <puddleriver13@...> Subject: Re: Phil From Miami achalasia Date: Sunday, January 22, 2012, 9:01 PM  Phil, there are two sides to getting better: the medical side, and the YOU side. The YOU side may be the most important. Finding out what this disease does, what others do when they have the same problems, and discovering the *best* care. Dr. Unger looks like a nice enough man. May even be an excellent surgeon. But this particular disease seems to require LOTS of experience for good outcomes, and sometimes, not all that good even then. Lots would be defined as a *minimum* of 50 Hellers performed, and better, over a hundred. Rice has over 300 last I read. Read around, even just this last month or two's messages, and you'll see the whole gamut. The Dr. recommended to you is one of the very best in the field. And Dr. Rosemurgy is one of the very best surgeons. While most here have had pretty good outcomes with one Heller, some haven't, and have to have a re-do, or a dilation. I think you could trust the two mentioned, either way. Treating us seems to be more of an art than a science, alas. But unless you pin the wings on your own shoulders, there is no Achalasia fairy. . . .. And the sad truth of it is that younger males seem to have the most difficulty. Be pro-active! Best wishes for a good outcome. Hang around, keep us posted! > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > Phil > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Hi Leigh, hows your daughters condition now? Does she still have complications swallowing? Can she eat what she wants/when she wants? Any spasms? Wow, I mean removing of the esophagus sounds crucial! But i do want to get better and will do anything to get better. What are her side effects post surgery and how long did it take for her to recover? I would love for you to call me 3055286113 From: headshrinker <stovall.h@...> Subject: Re: Phil From Miami achalasia Date: Monday, January 23, 2012, 12:37 AM Â Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Dr. in Atlanta at the Emory hospital did my surgery. The hospital and his staff are very good. He might be another option for you to look into. Martim Sent from my iPhone On Jan 23, 2012, at 11:00, Philip <blaze_philip@...> wrote: > Hi Leigh, hows your daughters condition now? Does she still have complications swallowing? Can she eat what she wants/when she wants? Any spasms? Wow, I mean removing of the esophagus sounds crucial! But i do want to get better and will do anything to get better. What are her side effects post surgery and how long did it take for her to recover? > I would love for you to call me 3055286113 > > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 How effective is this " Esophagectomy " towards Achalasia? Has anyone had it done? I heard that they remove your Esophagus and pull your stomach up or something like that!. I might consider doing it but it sounds REALLY scary! Â Â Someone help please! > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Yes that is basically what I had done and Dr. did the surgery. It was the best thing I have done for controlling this disease. If you want to talk more about it I am happy to give you my view. We can talk on the phone if you like also. Sent from my iPhone On Jan 23, 2012, at 13:22, Philip <blaze_philip@...> wrote: > How effective is this " Esophagectomy " towards Achalasia? Has anyone had it done? I heard that they remove your Esophagus and pull your stomach up or something like that!. I might consider doing it but it sounds REALLY scary! > > Someone help please! > > > > > > From: headshrinker <stovall.h@...> > > Subject: Re: Phil From Miami > > achalasia > > Date: Monday, January 23, 2012, 12:37 AM > > > > > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I think ive spoken to you before but givve me a call anyways .. 305-528-6113 > > > > From: headshrinker <stovall.h@...> > > Subject: Re: Phil From Miami > > achalasia > > Date: Monday, January 23, 2012, 12:37 AM > > > > > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Dr. Unger performed the HM on me at Mt. Sinai. Thats where i went for my HM. The suregery went well but i should be in a wayyyyy better condition than what i am in now! Am i over thinking it or what? Or can i actually get better? From: leo111s <leo111s@...> Subject: Re: Phil From Miami achalasia Date: Tuesday, January 24, 2012, 10:10 AM Â Hi Phil, I had my HM 2 years ago (almost exactly) in Miami. (In fact I have my yearly follow up on Thursday!) My advice would be to first, make sure you have a good GI doc. I went through about 4 before I found one that had a clue about Achalasia. Dr. Barkin at Mt Sinai. In fact, he'd written papers about Achalasia since at least the early 90's when the main method of treatment was balloon dilations. He told me surgery was the best option and if he was going to send me to get surgery, he was going to send me to the best. He referred me to Dr. Livingstone. He was the chief of surgical oncology at UM/Sylvester, and has experience with HM. I'll tell you, he commanded respect at the hospital! Whatever he asked for, he got... I got a private room, on the specific floor he wanted. The nurses at weren't the best, but I was only there 2 nights, then I was home. I still have to eat slow, chew well, drink lots of water to help the food get down, I don't eat anything past 9pm, etc..., but I am soooo much better. I had gone from weighing 205 to 150 in about 6 months, the the worst part was no one could figure out what I had until I finally found Dr. Barkin. Now I'm at about 175 and I've been there for a while. This is a great group with great resources! Wish you all the best! Leo > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > Phil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 It is a scary operation and is on par with recovering from a miltycar pileup so my surgeon warned me! Notan can come up with some figures and percentages but in effect most people who suffer, yes suffer from Achalasia go on to lead healthy normal lives after having the Esophgectomy which this group calls " ectomy " for short. I had it done back in October 2004 and unfortunaley i fell into the group that don't have good results after the operation. Yes they done a gastric pullup but they make the stomach into a new esophagus during the operation. My advice to you is to reaserch the operation thoroughly before deciding on the operation and make sure that you end up with a surgeon who has plenty of experience in performing this intricate operation. from the UK ________________________________ From: Philip <blaze_philip@...> achalasia Sent: Monday, January 23, 2012 6:22 PM Subject: Re: Re: Phil From Miami  How effective is this " Esophagectomy " towards Achalasia? Has anyone had it done? I heard that they remove your Esophagus and pull your stomach up or something like that!. I might consider doing it but it sounds REALLY scary!   Someone help please! > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 I think im going to slow down and not get the " ectomy " done at this moment! I just might be rushing it and i got my whole life to live and i dont want to run out of options later down the road. So yea...But i am planning to go see Dr. Castell in South Carolina! Has anyone heard of him? My current GI Dr. ( Felder) said that they will perform the " Manomatry " test on me. Whats that? I havent had that done to me yet. Does it hurt? And what other test will they perform on me? Â Need Answers > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 That is the test where they measure the pressures in the esophagus. They stick a small tube up your nose and down to the stomach. You have to be awake for this test too. My house is still open if you want to go to Atlanta too. Sent from my iPhone On Jan 25, 2012, at 12:15, Philip <blaze_philip@...> wrote: > I think im going to slow down and not get the " ectomy " done at this moment! I just might be rushing it and i got my whole life to live and i dont want to run out of options later down the road. So yea...But i am planning to go see Dr. Castell in South Carolina! Has anyone heard of him? My current GI Dr. ( Felder) said that they will perform the " Manomatry " test on me. Whats that? I havent had that done to me yet. Does it hurt? And what other test will they perform on me? > > Need Answers > > > > > > From: headshrinker <stovall.h@...> > > Subject: Re: Phil From Miami > > achalasia > > Date: Monday, January 23, 2012, 12:37 AM > > > > > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Thanks > > > > From: headshrinker <stovall.h@...> > > Subject: Re: Phil From Miami > > achalasia > > Date: Monday, January 23, 2012, 12:37 AM > > > > > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Hi Phil Dr O'Castell in South Carolina is the gastroenterologist with huge experience in GI motility disorder and has published widely. He is very nice to talk to and he takes time to answer all your questions. We traveled from UK to South Carolina for my daughter's esophageal dilatation which was in Dec 2011. She is absolutely fine at the moment. In manometery a small tube is passed through your nose and positioned in your esophagus. Some readings are taken and the you are asked to take small sips of thick gel and the motility of the esophagus is tracked by the sensors all along the tube. I hope it is useful Best wishes anil achalasia From: blaze_philip@... Date: Wed, 25 Jan 2012 10:31:54 -0800 Subject: Re: Re: Phil From Miami Thanks > > > > From: headshrinker <stovall.h@...> > > Subject: Re: Phil From Miami > > achalasia > > Date: Monday, January 23, 2012, 12:37 AM > > > > > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Hi Philip, My doc gave me Nitrostat too during my worst days and I almost fell over it made me so dizzy. It didn't help me eat at all and I think there is a 3-27 minute window where you need to eat if it does. I had two dilations last year, thought the first one was going to kill me because it wasn't the type needed for Achalasia and the second one helped but I really struggle with most of the same things you do. Though I can eat finely chopped salad and raw vegetables, if I steam then it's not happening. Rice could definitely get stuck and you should avoid that. I have gotten used to cream of wheat and love butternut squash soup. I can only eat meat if it is finely ground, and I mean finely. I don't have a grinder so it's tough to get that. But try flaky fish and mashed potatoes and anything that isn't real solid that you can get down . It definitely is a lot of trial and error. One day I can eat something and the next I can't! I take Nifedipine for chest pain and am not really sure this helps either. Hang in there and I hope you find some foods that work for you!  Kim A ________________________________ From: Philip <blaze_philip@...> achalasia Sent: Sunday, January 22, 2012 9:00 PM Subject: Re: Re: Phil From Miami  Where is Dr. rosemurgy stationed at? Ive had 3 dilations. A couple balloons and probably one botox. Im pretty up to date as to what im dealing with but i just need to get the right help. I cant sit too long and eat. I have to forcefully guzzle down fluid to push down the food stuck in my throat. Just this morning, I woke up puking my brains out and then had a MASSIVE " spasm " . (I think thats what its called) Well anyway, it felt like i was having a heart attack. My Dr. perscribed me " Nitrostat " to take the pain away (low dosage). I use that as i need it, not on an annual basis. Well i took that and it didnt do too much. I find myself spitting alot after having a spasm. Not being able to swallow my own spit! So i keep a spit bucket next to my bed. Havent eaten all day because im afraid of food coming up again. But i will try to eat Chef Boyardee later.  I have complications swallowing alot of foods but the ones that are the worst are : Rice, Salad, Steak, Vegetables, Popcorn, & Cereal.  Need Answers From: puddleriver13 <puddleriver13@...> Subject: Re: Phil From Miami achalasia Date: Sunday, January 22, 2012, 9:01 PM  Phil, there are two sides to getting better: the medical side, and the YOU side. The YOU side may be the most important. Finding out what this disease does, what others do when they have the same problems, and discovering the *best* care. Dr. Unger looks like a nice enough man. May even be an excellent surgeon. But this particular disease seems to require LOTS of experience for good outcomes, and sometimes, not all that good even then. Lots would be defined as a *minimum* of 50 Hellers performed, and better, over a hundred. Rice has over 300 last I read. Read around, even just this last month or two's messages, and you'll see the whole gamut. The Dr. recommended to you is one of the very best in the field. And Dr. Rosemurgy is one of the very best surgeons. While most here have had pretty good outcomes with one Heller, some haven't, and have to have a re-do, or a dilation. I think you could trust the two mentioned, either way. Treating us seems to be more of an art than a science, alas. But unless you pin the wings on your own shoulders, there is no Achalasia fairy. . . .. And the sad truth of it is that younger males seem to have the most difficulty. Be pro-active! Best wishes for a good outcome. Hang around, keep us posted! > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > Phil > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Philip,  I am glad you are going to wait. Mannometry is a test where they feed a tube down your nose while you are suposed to quickly drink water so it goes down easier. If you are having trouble swallowing and your pressure is high in your LES it will probably be the most uncomfortable hour of your life. I threw up on myself 3 times before she was able to get it down and I was crying the first time. They have you lie down and swallow small sips of water and swallow, once only or it doesn't count and you have to do it over. The second time I had done the balloon dilation at 30mm and it wasn't as bad but still uncomfortable. This test is very important for Achalasia as I believe the main purpose is to test the pressure in the LES - I may not be completely accurate on this but you will probably be doing this often enough for years to come. And then Esophagram/Barium Swallow to check your emptying of the E capabilities.  Since I am always behind on emails I am sure many other would have told you the same thing.  Good luck  Kim A ________________________________ From: Philip <blaze_philip@...> achalasia Sent: Wednesday, January 25, 2012 11:15 AM Subject: Re: Re: Phil From Miami  I think im going to slow down and not get the " ectomy " done at this moment! I just might be rushing it and i got my whole life to live and i dont want to run out of options later down the road. So yea...But i am planning to go see Dr. Castell in South Carolina! Has anyone heard of him? My current GI Dr. ( Felder) said that they will perform the " Manomatry " test on me. Whats that? I havent had that done to me yet. Does it hurt? And what other test will they perform on me?  Need Answers > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Kim, I dont know if they are going to be able to lay me down while i drink water SLOWLY! NO WAY JOSE! Thats not happening at all. And i got a feeling that this test is going to be a horrible experiece. > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Sorry - I have had this horrible virus for awhile now and starting to feel better now. Yes, if you have a lot of pressure in your E, it will not be comfortable. I was in so much distress my first time, I was crying - and that was just trying to get the tube in my nose. It is a necessary test for A and you will probably do it again. Once you know what to expect, it is more tolerable.  Kim A ________________________________ From: Philip <blaze_philip@...> achalasia Sent: Friday, February 3, 2012 12:35 AM Subject: Re: Re: Phil From Miami  Kim, I dont know if they are going to be able to lay me down while i drink water SLOWLY! NO WAY JOSE! Thats not happening at all. And i got a feeling that this test is going to be a horrible experiece. > > From: headshrinker <stovall.h@...> > Subject: Re: Phil From Miami > achalasia > Date: Monday, January 23, 2012, 12:37 AM > > > > Dr rosemurgy removed our daughter's esophagus in September. She was 17 at the time. She had achalasia for 8 years, one heller myotony at 12 with a fundoplication, and multiple dial actions. She was in constant pain with spasms and all the swallow center at university of south Florida could offer was more of the same ineffectual drugs we had before. Dr rosemurgy did an extinct with a thoracic reconstruction. It was a hard recovery but, 4 months later she is in college, and living her life. Call dr rosemurgy at Tampa general, tell him Leigh's mom sent you. He can help. We went to Tampa from California because of him. > > > > > > > > > > > > Has anyone heard of Dr. Castell? He's at the University of South Carolina Hospital. I was going to scedule an appointment with him instead of Dr. Rice, who's all the way in Cleveland Ohio. I live in Miami, Florida and i have Achalasia. Dr. Castell is 76 years old. Or is there anyone better thats closer? Just wanted to get some input! Please leave your comments! > > > > > > > > > > Phil > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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