Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 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 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 22, 2012 Report Share Posted January 22, 2012 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 Rosemurgy is in Tampa. He and/or his team has evidently done 600 plus Hellers. Hard to say why the original failed -- didn't go far enough up, didn't go far enough down onto the stomach, didn't go deep enough, OR you've formed scar tissue. Dilations after Hellers are not that uncommon, but boy I feel for you. I had spasms for decades before the swallowing difficulties started. And nothing much helped much. Never tried the drinking cold water which works for many here. Just sat very still till they passed. Your food difficulty list is about -- almost exactly -- what a LOT of us had/have problems with before and after treatment (of all varieties). I'm four weeks post Heller, and still have difficulty with all of those unless blenderized. But: I am NO LONGER regurging at night. And not that much during the day. Do I wish I weren't AT ALL? You bet your bottom dollar. Don't know what is in my future. Haven't even had my post-op followup yet. Mashed potatoes with lotsa butter are your friend. (Washed down with lotsa liquid. . . . ) Again, good luck! > > > > > > 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 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 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 February 3, 2012 Report Share Posted February 3, 2012 >And i got a feeling that this test [manometry] is going to be a horrible experience. My SO's primary care doc said the same and strongly advised against it. Her diagnosis seemed very clear from the barium swallow and the recommended treatments would not change based on a manometry result. Since then, we've seen one surgeon and one gastroenterologist at major Boston teaching hospitals. Both agreed that manometry would not affect diagnosis or treatment. We will see if the other specialists we consult say the same. She will not do that test in any event, so that may help decide whom to work with. Other people's situations may be different, of course. But to me this sounds like a much overused test that may not benefit the patient. By the way, the GI doc, Dr. Rosenberg at Beth Israel, strongly advised a Heller myotomy over dilatation. He offered to do a dilatation if requested, but said after decades of performing them he has stopped advising them for achalasia. He said the perforation risk, though only 2-5%, is too high, and with it the possibility of an emergency surgery that would have to be done with a big, old fashioned incision rather than a laparoscopic minimally invasive procedure. He said that before the minimally invasive surgery existed, it was a closer call, but not now. He saw no advantage to dilatation unless the patient was a poor risk for surgery. He has written a major textbook on esophageal pathology and seems to be quite expert about achalasia. I know other docs may have different views. It was refreshing to hear a big shot specialist advise *against* the procedures he does and gets compensated for. That gave his advice a ring of truth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2012 Report Share Posted February 3, 2012 I didn't find the manometry that bad. It was a little uncomfortable but that was all. That being said, I am dreading my next one which is a video manometry with a barium swallow at the same time. Anyone had one of these? With a sore throat that feels like I have swallowed razer blades, I am not looking forward to it at all! > > >And i got a feeling that this test [manometry] is going to be a horrible experience. > > My SO's primary care doc said the same and strongly advised against it. Her diagnosis seemed very clear from the barium swallow and the recommended treatments would not change based on a manometry result. > > Since then, we've seen one surgeon and one gastroenterologist at major Boston teaching hospitals. Both agreed that manometry would not affect diagnosis or treatment. We will see if the other specialists we consult say the same. She will not do that test in any event, so that may help decide whom to work with. > > Other people's situations may be different, of course. But to me this sounds like a much overused test that may not benefit the patient. > > By the way, the GI doc, Dr. Rosenberg at Beth Israel, strongly advised a Heller myotomy over dilatation. He offered to do a dilatation if requested, but said after decades of performing them he has stopped advising them for achalasia. He said the perforation risk, though only 2-5%, is too high, and with it the possibility of an emergency surgery that would have to be done with a big, old fashioned incision rather than a laparoscopic minimally invasive procedure. > > He said that before the minimally invasive surgery existed, it was a closer call, but not now. He saw no advantage to dilatation unless the patient was a poor risk for surgery. > > He has written a major textbook on esophageal pathology and seems to be quite expert about achalasia. I know other docs may have different views. It was refreshing to hear a big shot specialist advise *against* the procedures he does and gets compensated for. That gave his advice a ring of truth. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2012 Report Share Posted February 3, 2012 From what I can tell the manometry test tells your doctor what is going with your esophagus-its ability to contract and how it contracts. It tells him how advanced your achalasia is in your esophagus. It is also paired with a 24 hour acid test that gives useful information about acidity in the esophagus. The other tests like the barium swallow tell your doctor how advanced the achalasia is in your LES. After surgery (the Heller myotomy) you still have achalasia in your esophagus but not in your LES (which is destroyed). So the manometry/24 acid test is not just about the diagnosis of achalasia for surgery. It tells the doctor treating your achalasia (not necessarily your surgeon) how well your esophagus is working. Will results change treatment? No, but at least you know how bad things are at diagnosis and what is causing your pain. I've had two and it was no big deal to me. The one I had post surgery at the University of Washington was much more thorough than the one I had done more locally before surgery and it gave much different results so I suppose that first test was useless! After surgery (going on 4 years) most of my swallowing problems disappeared. I was not even offered a dilation by my surgeon but then I was getting near end stage according to him and had to something done soon. > > >And i got a feeling that this test [manometry] is going to be a horrible experience. > > My SO's primary care doc said the same and strongly advised against it. Her diagnosis seemed very clear from the barium swallow and the recommended treatments would not change based on a manometry result. > > Since then, we've seen one surgeon and one gastroenterologist at major Boston teaching hospitals. Both agreed that manometry would not affect diagnosis or treatment. We will see if the other specialists we consult say the same. She will not do that test in any event, so that may help decide whom to work with. > > Other people's situations may be different, of course. But to me this sounds like a much overused test that may not benefit the patient. > > By the way, the GI doc, Dr. Rosenberg at Beth Israel, strongly advised a Heller myotomy over dilatation. He offered to do a dilatation if requested, but said after decades of performing them he has stopped advising them for achalasia. He said the perforation risk, though only 2-5%, is too high, and with it the possibility of an emergency surgery that would have to be done with a big, old fashioned incision rather than a laparoscopic minimally invasive procedure. > > He said that before the minimally invasive surgery existed, it was a closer call, but not now. He saw no advantage to dilatation unless the patient was a poor risk for surgery. > > He has written a major textbook on esophageal pathology and seems to be quite expert about achalasia. I know other docs may have different views. It was refreshing to hear a big shot specialist advise *against* the procedures he does and gets compensated for. That gave his advice a ring of truth. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.