Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 so I have done an IMMENSE amount of research online about my end stage situation. I feel like I know TOO much. Its not very good because I have kind of determined what I think Rice is going to say. I find it next to impossible that he will not suggest an ectomy. I mean there is no way that it would make sense to salvage this this giant useless sac that was once a functioning organ. Its >10cm in diameter (SCARY!!!) its tortuous at the distal end which means residual food/liquid can collect. I am not sure if it actually dips below the stomach needing to fight gravity but I bet it will soon be there if its not there yet. Since I have no trouble swallowing and food is certainly getting into my stomach (confirmed by the barium) I would assume that my LES does not have a high pressure. In cases where the LES is low pressure a myotomy has no purpose. But I am jumping to conclusions and I know this. I am completely obsessed and need to CHILL out. I hope my trip to NY can give me some peace. I am already thinking of logistics for when I have to go through the surgery. Where I will stay, where my kids will be. I feel it in my bones that my life is about to change big time. Its intuition..... Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 Cara Never try to " pre-guess " what the doctor is going to tell you. You have been a phenomenal patient with all your research, but it is research about a topic that lacks a doctor's examination of you and his review of the test results. Neither of these items have you been involved with in your research. Now take a break from this and " live your life " and " CHILL out " (as you said). You need to take a break from all this. When you're on LI, I'll take you out to lunch if you'd like. ________________________________ From: spotoca <cspoto@...> achalasia Sent: Wed, June 9, 2010 10:33:09 PM Subject: Some thoughts....  so I have done an IMMENSE amount of research online about my end stage situation. I feel like I know TOO much. Its not very good because I have kind of determined what I think Rice is going to say. I find it next to impossible that he will not suggest an ectomy. I mean there is no way that it would make sense to salvage this this giant useless sac that was once a functioning organ. Its >10cm in diameter (SCARY!!!) its tortuous at the distal end which means residual food/liquid can collect. I am not sure if it actually dips below the stomach needing to fight gravity but I bet it will soon be there if its not there yet. Since I have no trouble swallowing and food is certainly getting into my stomach (confirmed by the barium) I would assume that my LES does not have a high pressure. In cases where the LES is low pressure a myotomy has no purpose. But I am jumping to conclusions and I know this. I am completely obsessed and need to CHILL out. I hope my trip to NY can give me some peace. I am already thinking of logistics for when I have to go through the surgery. Where I will stay, where my kids will be. I feel it in my bones that my life is about to change big time. Its intuition..... Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 Cara wrote: > so I have done an IMMENSE amount of research online about my end stage situation. ... Have you had a look at these? There are other papers that have different conclusions. I just wanted to give you some of the hopeful ones. The outcome of laparoscopic Heller myotomy for achalasia is not influenced by the degree of esophageal dilatation. Sweet MP, Nipomnick I, Gasper WJ, Bagatelos K, Ostroff JW, Fisichella PM, Way LW, Patti MG. http://www.ncbi.nlm.nih.gov/pubmed/17710504 Laparoscopic Heller myotomy relieves dysphagia in achalasia when the esophagus is dilated. Patti MG, Feo CV, Diener U, Tamburini A, Arcerito M, Safadi B, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/10449836 Laparoscopic Heller myotomy relieves dysphagia in patients with achalasia and low LES pressure following pneumatic dilatation. Diener U, Patti MG, Molena D, Tamburini A, Fisichella PM, Whang K, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/11591969 Preoperative lower esophageal sphincter pressure has little influence on the outcome of laparoscopic Heller myotomy for achalasia. Gorodner MV, Galvani C, Fisichella PM, Patti MG. http://www.ncbi.nlm.nih.gov/pubmed/15054655 Laparoscopic Heller myotomy relieves dysphagia in patients with achalasia and low LES pressure following pneumatic dilatation. Diener U, Patti MG, Molena D, Tamburini A, Fisichella PM, Whang K, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/11591969 Notice the common author in the above papers. Improving the surgery for sigmoid achalasia: long-term results of a technical detail. Faccani E, Mattioli S, Lugaresi ML, Di Simone MP, Bartalena T, Pilotti V. http://www.ncbi.nlm.nih.gov/pubmed/17931877 Long-term outcome of Heller myotomy in achalasic sigmoid esophagus. Mineo TC, Pompeo E. http://www.ncbi.nlm.nih.gov/pubmed/15354099 The risk of esophageal resection after esophagomyotomy for achalasia. Eldaif SM, Mutrie CJ, Rutledge WC, Lin E, Force SD, JI Jr, Mansour KA, DL. http://www.ncbi.nlm.nih.gov/pubmed/19379905 Minimally invasive surgical treatment of sigmoidal esophagus in achalasia. Schuchert MJ, Luketich JD, Landreneau RJ, Kilic A, Wang Y, Alvelo- M, Christie NA, Gilbert S, Pennathur A. http://www.ncbi.nlm.nih.gov/pubmed/19326178 (Luketich has published some others on esophagectomy too). notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 Notan Can i but in here and ask for some advice from you please. As you and i know many people go ahead and have the oesophagectomy for Achalasia. what i want to know is do you have any information on what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? I am seeing surgeon on July 12th for a chat and review and would appreciate any input that you may have for me. I am stepping into the unknown here as i find it takes me over 60 minutes to swallow even a very small amount of food even if i try a few sips of water with the food. Help! from the UK ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Thu, June 10, 2010 6:11:08 AM Subject: Re: Some thoughts.... Â Cara wrote: > so I have done an IMMENSE amount of research online about my end stage situation. ... Have you had a look at these? There are other papers that have different conclusions. I just wanted to give you some of the hopeful ones. The outcome of laparoscopic Heller myotomy for achalasia is not influenced by the degree of esophageal dilatation. Sweet MP, Nipomnick I, Gasper WJ, Bagatelos K, Ostroff JW, Fisichella PM, Way LW, Patti MG. http://www.ncbi.nlm.nih.gov/pubmed/17710504 Laparoscopic Heller myotomy relieves dysphagia in achalasia when the esophagus is dilated. Patti MG, Feo CV, Diener U, Tamburini A, Arcerito M, Safadi B, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/10449836 Laparoscopic Heller myotomy relieves dysphagia in patients with achalasia and low LES pressure following pneumatic dilatation. Diener U, Patti MG, Molena D, Tamburini A, Fisichella PM, Whang K, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/11591969 Preoperative lower esophageal sphincter pressure has little influence on the outcome of laparoscopic Heller myotomy for achalasia. Gorodner MV, Galvani C, Fisichella PM, Patti MG. http://www.ncbi.nlm.nih.gov/pubmed/15054655 Laparoscopic Heller myotomy relieves dysphagia in patients with achalasia and low LES pressure following pneumatic dilatation. Diener U, Patti MG, Molena D, Tamburini A, Fisichella PM, Whang K, Way LW. http://www.ncbi.nlm.nih.gov/pubmed/11591969 Notice the common author in the above papers. Improving the surgery for sigmoid achalasia: long-term results of a technical detail. Faccani E, Mattioli S, Lugaresi ML, Di Simone MP, Bartalena T, Pilotti V. http://www.ncbi.nlm.nih.gov/pubmed/17931877 Long-term outcome of Heller myotomy in achalasic sigmoid esophagus. Mineo TC, Pompeo E. http://www.ncbi.nlm.nih.gov/pubmed/15354099 The risk of esophageal resection after esophagomyotomy for achalasia. Eldaif SM, Mutrie CJ, Rutledge WC, Lin E, Force SD, JI Jr, Mansour KA, DL. http://www.ncbi.nlm.nih.gov/pubmed/19379905 Minimally invasive surgical treatment of sigmoidal esophagus in achalasia. Schuchert MJ, Luketich JD, Landreneau RJ, Kilic A, Wang Y, Alvelo- M, Christie NA, Gilbert S, Pennathur A. http://www.ncbi.nlm.nih.gov/pubmed/19326178 (Luketich has published some others on esophagectomy too). notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 wrote: > ... what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? ... My understanding is that there are four main types of swallowing problems, slow emptying of the stomach, anastomosis (and other scarring), spasms, and achalasia of the UES (cricopharyngeal achalasia). I think you know about the anastomosis. The spasms would be in the remaining esophageal portion. The slow emptying would be a problem of the sphincter at the bottom of the stomach and treatment on it would not effect the tube much. The UES is above the tube so treatment of it would also not effect the tube. I don't know if they would do anything other than medication to treat the spasms in your case. Also you may not have any peristalsis but that should not be a problem because you also don't have much esophagus or a LES. But, you are very unique so I am just guessing. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Yes , I would love to meet up with you when I am in NY. We can wax philosophical on our conditions. I have had some recent revelations. I will get in touch when I am all settled. We can meet halfway or I can come up by you, or whatever. I know my way around th island so no worries! I look forward to meeting you. Your calm attitude will hopefully rub off on me!! Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hello Notan, My name is Steve and I am new to the group. I have been reading the posts/archives for several weeks and appreciate all the knowledge and support everyone offers. A brief history is as follows: I was diagnosed at age 27 and had a dilation at age 28 (1988). I basically has 13 pretty good years. By age 40 I had to start sleeping elevated (in a zero gravity chair). After trying every alternative treatment I could find, I finally relented and had a Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do a fundoplication due to my esophagus been so tortuous. The next year was significantly better for me, but things gradually got worse and the great difficulty swallowing has returned. I have never had any weight loss due to achalasia. I have had only a few vomiting episodes and must really force the food down with fluid. My esophagram done last month shows a 9cm diameter. A recent curveball has been the onset of lone atrial fibrillation. I have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was successfully cardioverted each time. My stress echo is normal. I am in excellent physical condition (I always have been). I have been using Banu's curcumin remedy the last few weeks - nothing to report yet. I am sitting in my hotel room in Cleveland with my wonderfully supportive wife and will see Dr. Rice tomorrow. Any words of advice are most appreciated. Thank you. Steve > > ... what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? ... > > My understanding is that there are four main types of swallowing > problems, slow emptying of the stomach, anastomosis (and other > scarring), spasms, and achalasia of the UES (cricopharyngeal achalasia). > I think you know about the anastomosis. The spasms would be in the > remaining esophageal portion. The slow emptying would be a problem of > the sphincter at the bottom of the stomach and treatment on it would not > effect the tube much. The UES is above the tube so treatment of it would > also not effect the tube. I don't know if they would do anything other > than medication to treat the spasms in your case. Also you may not have > any peristalsis but that should not be a problem because you also don't > have much esophagus or a LES. But, you are very unique so I am just > guessing. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hi Steve: While I do not have any advice I found the post worth taking careful interest in as I had surgery with Dr. P at U of W also with no wrap. So my question is how did you know to get an esophagram and where did you have it done. The decsion to not return to U of W but to seek out Dr. Rice also interests me. These things come on so fast and I too am concerned. Joanne achalasia From: samsteve1@... Date: Fri, 11 Jun 2010 02:10:18 +0000 Subject: Re: Some thoughts.... Hello Notan, My name is Steve and I am new to the group. I have been reading the posts/archives for several weeks and appreciate all the knowledge and support everyone offers. A brief history is as follows: I was diagnosed at age 27 and had a dilation at age 28 (1988). I basically has 13 pretty good years. By age 40 I had to start sleeping elevated (in a zero gravity chair). After trying every alternative treatment I could find, I finally relented and had a Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do a fundoplication due to my esophagus been so tortuous. The next year was significantly better for me, but things gradually got worse and the great difficulty swallowing has returned. I have never had any weight loss due to achalasia. I have had only a few vomiting episodes and must really force the food down with fluid. My esophagram done last month shows a 9cm diameter. A recent curveball has been the onset of lone atrial fibrillation. I have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was successfully cardioverted each time. My stress echo is normal. I am in excellent physical condition (I always have been). I have been using Banu's curcumin remedy the last few weeks - nothing to report yet. I am sitting in my hotel room in Cleveland with my wonderfully supportive wife and will see Dr. Rice tomorrow. Any words of advice are most appreciated. Thank you. Steve > > ... what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? ... > > My understanding is that there are four main types of swallowing > problems, slow emptying of the stomach, anastomosis (and other > scarring), spasms, and achalasia of the UES (cricopharyngeal achalasia). > I think you know about the anastomosis. The spasms would be in the > remaining esophageal portion. The slow emptying would be a problem of > the sphincter at the bottom of the stomach and treatment on it would not > effect the tube much. The UES is above the tube so treatment of it would > also not effect the tube. I don't know if they would do anything other > than medication to treat the spasms in your case. Also you may not have > any peristalsis but that should not be a problem because you also don't > have much esophagus or a LES. But, you are very unique so I am just > guessing. > > notan > _________________________________________________________________ Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hello, Dr. Steve. Dr. Steve wrote: > A recent curveball has been the onset of lone atrial fibrillation. Is that the vagal-AF type? You have my interest here. There have been others that have discussed AF in this support group before. There has never been enough of them here to place any statistical significance on it and I don't think anyone has said their's was vagal. I am reading into what you have said that you don't have any underlying HD or you would have said so. That raises the possibility of vagal-AF. With your esophagus being so large I can imagine that it could be pressing the vagus causing it to be over simulated. There have also been reports in the literature of megaesophagus cases where the esophagus pressed against the heart causing arrhythmias. As far as I know these cases seem to be rare. > ... will see Dr. Rice tomorrow. > > Any words of advice are most appreciated. > I don't have much to say about that other than you seem to be in good hands. Let us know what he says. We may have more to say then. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hi Notan Thank you for your information. It gives me food for thought. Here is what my GP says ahead of my appointment in Liverpool on July 12th. He says that i either have a problem with the slow speed of the stomach emptying so has prescribed Domperidone to see if it helps ahead of the appointment. He also thinks that there is a problem with Achalasia of the UES. This i know already but i need it to be mentioned by my GP without prompting first again before the appointment in Liverpool. Both the problem of slow speed of stomach emptying and taking Domperidone as well as possible Achalasia of UES will be mentioned in a letter to be faxed to the surgeon so that it will be in my medical notes ahead of the appointment. As you can see i am a fighter and will not rest on my laurels so to speak without having all the facts to hand before coming to any decision about what is my medical future. Any more information about what i have mentioned will be usefull. from the UK ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Thu, June 10, 2010 3:48:01 PM Subject: Re: Re: Some thoughts.... Â wrote: > ... what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? ... My understanding is that there are four main types of swallowing problems, slow emptying of the stomach, anastomosis (and other scarring), spasms, and achalasia of the UES (cricopharyngeal achalasia). I think you know about the anastomosis. The spasms would be in the remaining esophageal portion. The slow emptying would be a problem of the sphincter at the bottom of the stomach and treatment on it would not effect the tube much. The UES is above the tube so treatment of it would also not effect the tube. I don't know if they would do anything other than medication to treat the spasms in your case. Also you may not have any peristalsis but that should not be a problem because you also don't have much esophagus or a LES. But, you are very unique so I am just guessing. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Steve, Welcome to the group! I agree with Notan that you're definitely in good hands with Dr. Rice. I take it you've traveled to Cleveland for this appointment. Did you mention that when you scheduled it? From our experience, 4 years ago, they were pretty accomodating in trying to schedule any needed test close together, while you're in town. Dr. Rice can seem direct, but he knows his stuff! Good luck today and please keep us posted on how it goes. in Michigan > > > ... what happens to the stomach tube after the oesophagectomy when the patient continues to have swallowing problems with pain that is associated with Achalasia? ... > > > > My understanding is that there are four main types of swallowing > > problems, slow emptying of the stomach, anastomosis (and other > > scarring), spasms, and achalasia of the UES (cricopharyngeal achalasia). > > I think you know about the anastomosis. The spasms would be in the > > remaining esophageal portion. The slow emptying would be a problem of > > the sphincter at the bottom of the stomach and treatment on it would not > > effect the tube much. The UES is above the tube so treatment of it would > > also not effect the tube. I don't know if they would do anything other > > than medication to treat the spasms in your case. Also you may not have > > any peristalsis but that should not be a problem because you also don't > > have much esophagus or a LES. But, you are very unique so I am just > > guessing. > > > > notan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Thanks and Notan. I have no prior history of heart disease- my stress echo in Sept '09 was normal. I did mention this when sceduling Dr Rice and emphasized the importance of understanding if there is any connection. I have consulted with Dr Lam (drlam.com) who has been very interested in my case. He first thought the afib was purely vagal but know he is not sure. I am also going to see Dr Patti in 2 weeks and by email he thought that the pressure of the E could be responsible. My colonoscopy last month showed gastroparesis so now I'm back to thinking Vagal. I will let you know how things go today. Thanks Steve Sent from my iPhone On Jun 11, 2010, at 6:43 AM, " " <bbcoyle@...> wrote: > Steve, > Welcome to the group! I agree with Notan that you're definitely in > good hands with Dr. Rice. I take it you've traveled to Cleveland for > this appointment. Did you mention that when you scheduled it? From > our experience, 4 years ago, they were pretty accomodating in trying > to schedule any needed test close together, while you're in town. > Dr. Rice can seem direct, but he knows his stuff! Good luck today > and please keep us posted on how it goes. > > in Michigan > > > > > > ... what happens to the stomach tube after the oesophagectomy > when the patient continues to have swallowing problems with pain > that is associated with Achalasia? ... > > > > > > My understanding is that there are four main types of swallowing > > > problems, slow emptying of the stomach, anastomosis (and other > > > scarring), spasms, and achalasia of the UES (cricopharyngeal > achalasia). > > > I think you know about the anastomosis. The spasms would be in the > > > remaining esophageal portion. The slow emptying would be a > problem of > > > the sphincter at the bottom of the stomach and treatment on it > would not > > > effect the tube much. The UES is above the tube so treatment of > it would > > > also not effect the tube. I don't know if they would do anything > other > > > than medication to treat the spasms in your case. Also you may > not have > > > any peristalsis but that should not be a problem because you > also don't > > > have much esophagus or a LES. But, you are very unique so I am > just > > > guessing. > > > > > > notan > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hello Joanne, I had a chest xray when I had my last afib attack in April. It showed a large shadow... my 9cm esophagus. That is what led me to do the esophagram (done locally in land). I then started searching for doctors and found Dr Rice. He has a video on Cleveland Cilinic's site and reviews his post-op follow-up care which includes annual visits including an esophagram. My heller myotomy was done in Nov 2006 by Dr Oelschlager, Dr P's younger partner. My experience was not a good one. I found U of W after an exhaustive pubmed search and chose them for their supposed expertise and because my brother lives there so I could recover at his home. I was told I would be a patient for life. I was called once about 6 months post op and asked only about reflux. That has been the extent of the followup. During the surgery I aspirated because I was laid flat, not a bit upright as I spcificallt told them I needed to be. My wife was kept in the dark for 5 hours while I was in the recovery room recovering from the fever brought on by the aspiration. I thankfully recovered very quickly from the fever and surgery. I do believe Dr O did the right thing by not doing the wrap as my difficulty swallowing has returned. However, I am concerned that he may have nicked my Vagus nerve which could be the reason for my afib When we asked about the aspiration we never got a real answer I will find out more after seeing Dr Rice today. I am sitting here waiting for my procedures- endoscopy, manometry, esophagram. I will let you know. Steve Sent from my iPhone On Jun 10, 2010, at 10:34 PM, Joanne Leinow <joanneleinow@...> wrote: > > Hi Steve: > > While I do not have any advice I found the post worth taking careful > interest in as I had surgery with Dr. P at U of W also with no wrap. > So my question is how did you know to get an esophagram and where > did you have it done. > > The decsion to not return to U of W but to seek out Dr. Rice also > interests me. > > These things come on so fast and I too am concerned. > > Joanne > > > > > achalasia > From: samsteve1@... > Date: Fri, 11 Jun 2010 02:10:18 +0000 > Subject: Re: Some thoughts.... > > > > > > Hello Notan, > > My name is Steve and I am new to the group. I have been reading the > posts/archives for several weeks and appreciate all the knowledge > and support everyone offers. A brief history is as follows: > > I was diagnosed at age 27 and had a dilation at age 28 (1988). I > basically has 13 pretty good years. By age 40 I had to start > sleeping elevated (in a zero gravity chair). After trying every > alternative treatment I could find, I finally relented and had a > Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do > a fundoplication due to my esophagus been so tortuous. The next year > was significantly better for me, but things gradually got worse and > the great difficulty swallowing has returned. I have never had any > weight loss due to achalasia. I have had only a few vomiting > episodes and must really force the food down with fluid. My > esophagram done last month shows a 9cm diameter. > > A recent curveball has been the onset of lone atrial fibrillation. I > have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was > successfully cardioverted each time. My stress echo is normal. I am > in excellent physical condition (I always have been). > > I have been using Banu's curcumin remedy the last few weeks - > nothing to report yet. I am sitting in my hotel room in Cleveland > with my wonderfully supportive wife and will see Dr. Rice tomorrow. > > Any words of advice are most appreciated. > > Thank you. > > Steve > > >>> ... what happens to the stomach tube after the oesophagectomy when >>> the patient continues to have swallowing problems with pain that >>> is associated with Achalasia? ... >> >> My understanding is that there are four main types of swallowing >> problems, slow emptying of the stomach, anastomosis (and other >> scarring), spasms, and achalasia of the UES (cricopharyngeal >> achalasia). >> I think you know about the anastomosis. The spasms would be in the >> remaining esophageal portion. The slow emptying would be a problem of >> the sphincter at the bottom of the stomach and treatment on it >> would not >> effect the tube much. The UES is above the tube so treatment of it >> would >> also not effect the tube. I don't know if they would do anything >> other >> than medication to treat the spasms in your case. Also you may not >> have >> any peristalsis but that should not be a problem because you also >> don't >> have much esophagus or a LES. But, you are very unique so I am just >> guessing. >> >> notan >> > > > > > > _________________________________________________________________ > Hotmail has tools for the New Busy. Search, chat and e-mail from > your inbox. > http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Wow! We keep hearing stories like yours. Why isn't there some kind of checklist that surgeons follow? I hope you get help and answers today. Good luck. Dan -- Sent from my Phone On Jun 11, 2010 8:41 AM, SamSteve & lt;samsteve1@... & gt; wrote: & nbsp; Hello Joanne, I had a chest xray when I had my last afib attack in April. It showed a large shadow... my 9cm esophagus. That is what led me to do the esophagram (done locally in land). I then started searching for doctors and found Dr Rice. He has a video on Cleveland Cilinic's site and reviews his post-op follow-up care which includes annual visits including an esophagram. My heller myotomy was done in Nov 2006 by Dr Oelschlager, Dr P's younger partner. My experience was not a good one. I found U of W after an exhaustive pubmed search and chose them for their supposed expertise and because my brother lives there so I could recover at his home. I was told I would be a patient for life. I was called once about 6 months post op and asked only about reflux. That has been the extent of the followup. During the surgery I aspirated because I was laid flat, not a bit upright as I spcificallt told them I needed to be. My wife was kept in the dark for 5 hours while I was in the recovery room recovering from the fever brought on by the aspiration. I thankfully recovered very quickly from the fever and surgery. I do believe Dr O did the right thing by not doing the wrap as my difficulty swallowing has returned. However, I am concerned that he may have nicked my Vagus nerve which could be the reason for my afib When we asked about the aspiration we never got a real answer I will find out more after seeing Dr Rice today. I am sitting here waiting for my procedures- endoscopy, manometry, esophagram. I will let you know. Steve Sent from my iPhone On Jun 10, 2010, at 10:34 PM, Joanne Leinow & lt;joanneleinow@... & gt; wrote: & gt; & gt; Hi Steve: & gt; & gt; While I do not have any advice I found the post worth taking careful & gt; interest in as I had surgery with Dr. P at U of W also with no wrap. & gt; So my question is how did you know to get an esophagram and where & gt; did you have it done. & gt; & gt; The decsion to not return to U of W but to seek out Dr. Rice also & gt; interests me. & gt; & gt; These things come on so fast and I too am concerned. & gt; & gt; Joanne & gt; & gt; & gt; & gt; & gt; achalasia & gt; From: samsteve1@... & gt; Date: Fri, 11 Jun 2010 02:10:18 +0000 & gt; Subject: Re: Some thoughts.... & gt; & gt; & gt; & gt; & gt; & gt; Hello Notan, & gt; & gt; My name is Steve and I am new to the group. I have been reading the & gt; posts/archives for several weeks and appreciate all the knowledge & gt; and support everyone offers. A brief history is as follows: & gt; & gt; I was diagnosed at age 27 and had a dilation at age 28 (1988). I & gt; basically has 13 pretty good years. By age 40 I had to start & gt; sleeping elevated (in a zero gravity chair). After trying every & gt; alternative treatment I could find, I finally relented and had a & gt; Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do & gt; a fundoplication due to my esophagus been so tortuous. The next year & gt; was significantly better for me, but things gradually got worse and & gt; the great difficulty swallowing has returned. I have never had any & gt; weight loss due to achalasia. I have had only a few vomiting & gt; episodes and must really force the food down with fluid. My & gt; esophagram done last month shows a 9cm diameter. & gt; & gt; A recent curveball has been the onset of lone atrial fibrillation. I & gt; have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was & gt; successfully cardioverted each time. My stress echo is normal. I am & gt; in excellent physical condition (I always have been). & gt; & gt; I have been using Banu's curcumin remedy the last few weeks - & gt; nothing to report yet. I am sitting in my hotel room in Cleveland & gt; with my wonderfully supportive wife and will see Dr. Rice tomorrow. & gt; & gt; Any words of advice are most appreciated. & gt; & gt; Thank you. & gt; & gt; Steve & gt; & gt; & gt; & gt; & gt; ... what happens to the stomach tube after the oesophagectomy when & gt; & gt; & gt; the patient continues to have swallowing problems with pain that & gt; & gt; & gt; is associated with Achalasia? ... & gt; & gt; & gt; & gt; My understanding is that there are four main types of swallowing & gt; & gt; problems, slow emptying of the stomach, anastomosis (and other & gt; & gt; scarring), spasms, and achalasia of the UES (cricopharyngeal & gt; & gt; achalasia). & gt; & gt; I think you know about the anastomosis. The spasms would be in the & gt; & gt; remaining esophageal portion. The slow emptying would be a problem of & gt; & gt; the sphincter at the bottom of the stomach and treatment on it & gt; & gt; would not & gt; & gt; effect the tube much. The UES is above the tube so treatment of it & gt; & gt; would & gt; & gt; also not effect the tube. I don't know if they would do anything & gt; & gt; other & gt; & gt; than medication to treat the spasms in your case. Also you may not & gt; & gt; have & gt; & gt; any peristalsis but that should not be a problem because you also & gt; & gt; don't & gt; & gt; have much esophagus or a LES. But, you are very unique so I am just & gt; & gt; guessing. & gt; & gt; & gt; & gt; notan & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; __________________________________________________________ & gt; Hotmail has tools for the New Busy. Search, chat and e-mail from & gt; your inbox. & gt; http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Yes, a checklist would be great. Thanks for your well wishes. I will hopefully have a plan after today. Steve On Fri, Jun 11, 2010 at 9:18 AM, Hoffman <rp518dan@...> wrote: > > > Wow! > > We keep hearing stories like yours. Why isn't there some kind of checklist > that surgeons follow? > > I hope you get help and answers today. Good luck. > > Dan > > -- Sent from my Phone > On Jun 11, 2010 8:41 AM, SamSteve & lt;samsteve1@...<samsteve1%40gmail.com> & gt; > wrote: > > & nbsp; > > > Hello Joanne, > > I had a chest xray when I had my last afib attack in April. It showed > > a large shadow... my 9cm esophagus. That is what led me to do the > > esophagram (done locally in land). I then started searching for > > doctors and found Dr Rice. He has a video on Cleveland Cilinic's site > > and reviews his post-op follow-up care which includes annual visits > > including an esophagram. > > My heller myotomy was done in Nov 2006 by Dr Oelschlager, Dr P's > > younger partner. My experience was not a good one. I found U of W > > after an exhaustive pubmed search and chose them for their supposed > > expertise and because my brother lives there so I could recover at his > > home. I was told I would be a patient for life. I was called once > > about 6 months post op and asked only about reflux. That has been the > > extent of the followup. During the surgery I aspirated because I was > > laid flat, not a bit upright as I spcificallt told them I needed to > > be. My wife was kept in the dark for 5 hours while I was in the > > recovery room recovering from the fever brought on by the aspiration. > > I thankfully recovered very quickly from the fever and surgery. I do > > believe Dr O did the right thing by not doing the wrap as my > > difficulty swallowing has returned. However, I am concerned that he > > may have nicked my Vagus nerve which could be the reason for my afib > > When we asked about the aspiration we never got a real answer > > I will find out more after seeing Dr Rice today. I am sitting here > > waiting for my procedures- endoscopy, manometry, esophagram. > > I will let you know. > > Steve > > Sent from my iPhone > > On Jun 10, 2010, at 10:34 PM, Joanne Leinow & lt;joanneleinow@...<joanneleinow%40hotmail.com> & gt; > > > wrote: > > & gt; > > & gt; Hi Steve: > > & gt; > > & gt; While I do not have any advice I found the post worth taking careful > > & gt; interest in as I had surgery with Dr. P at U of W also with no wrap. > > & gt; So my question is how did you know to get an esophagram and where > > & gt; did you have it done. > > & gt; > > & gt; The decsion to not return to U of W but to seek out Dr. Rice also > > & gt; interests me. > > & gt; > > & gt; These things come on so fast and I too am concerned. > > & gt; > > & gt; Joanne > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; achalasia <achalasia%40> > > & gt; From: samsteve1@... <samsteve1%40gmail.com> > > & gt; Date: Fri, 11 Jun 2010 02:10:18 +0000 > > & gt; Subject: Re: Some thoughts.... > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; Hello Notan, > > & gt; > > & gt; My name is Steve and I am new to the group. I have been reading the > > & gt; posts/archives for several weeks and appreciate all the knowledge > > & gt; and support everyone offers. A brief history is as follows: > > & gt; > > & gt; I was diagnosed at age 27 and had a dilation at age 28 (1988). I > > & gt; basically has 13 pretty good years. By age 40 I had to start > > & gt; sleeping elevated (in a zero gravity chair). After trying every > > & gt; alternative treatment I could find, I finally relented and had a > > & gt; Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do > > & gt; a fundoplication due to my esophagus been so tortuous. The next year > > & gt; was significantly better for me, but things gradually got worse and > > & gt; the great difficulty swallowing has returned. I have never had any > > & gt; weight loss due to achalasia. I have had only a few vomiting > > & gt; episodes and must really force the food down with fluid. My > > & gt; esophagram done last month shows a 9cm diameter. > > & gt; > > & gt; A recent curveball has been the onset of lone atrial fibrillation. I > > & gt; have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was > > & gt; successfully cardioverted each time. My stress echo is normal. I am > > & gt; in excellent physical condition (I always have been). > > & gt; > > & gt; I have been using Banu's curcumin remedy the last few weeks - > > & gt; nothing to report yet. I am sitting in my hotel room in Cleveland > > & gt; with my wonderfully supportive wife and will see Dr. Rice tomorrow. > > & gt; > > & gt; Any words of advice are most appreciated. > > & gt; > > & gt; Thank you. > > & gt; > > & gt; Steve > > & gt; > > & gt; > > & gt; & gt; & gt; ... what happens to the stomach tube after the oesophagectomy > when > > & gt; & gt; & gt; the patient continues to have swallowing problems with pain > that > > & gt; & gt; & gt; is associated with Achalasia? ... > > & gt; & gt; > > & gt; & gt; My understanding is that there are four main types of swallowing > > & gt; & gt; problems, slow emptying of the stomach, anastomosis (and other > > & gt; & gt; scarring), spasms, and achalasia of the UES (cricopharyngeal > > & gt; & gt; achalasia). > > & gt; & gt; I think you know about the anastomosis. The spasms would be in the > > & gt; & gt; remaining esophageal portion. The slow emptying would be a problem > of > > & gt; & gt; the sphincter at the bottom of the stomach and treatment on it > > & gt; & gt; would not > > & gt; & gt; effect the tube much. The UES is above the tube so treatment of it > > > & gt; & gt; would > > & gt; & gt; also not effect the tube. I don't know if they would do anything > > & gt; & gt; other > > & gt; & gt; than medication to treat the spasms in your case. Also you may not > > > & gt; & gt; have > > & gt; & gt; any peristalsis but that should not be a problem because you also > > & gt; & gt; don't > > & gt; & gt; have much esophagus or a LES. But, you are very unique so I am > just > > & gt; & gt; guessing. > > & gt; & gt; > > & gt; & gt; notan > > & gt; & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; __________________________________________________________ > > & gt; Hotmail has tools for the New Busy. Search, chat and e-mail from > > & gt; your inbox. > > & gt; > http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 > > & gt; > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Thanks for such a complete response. You hit all my concerns, I have no follow up plan with them. And i also had something show up from a CT scan last month. I also choose them above all else, also had bad recovery room experience. Hope you will keep posting. They also said no wrap in case ever have to go back in. Wow. Joanne > achalasia > From: samsteve1@... > Date: Fri, 11 Jun 2010 09:43:43 -0400 > Subject: Re: Re: Some thoughts.... > > Yes, a checklist would be great. Thanks for your well wishes. I will > hopefully have a plan after today. > > Steve > > On Fri, Jun 11, 2010 at 9:18 AM, Hoffman <rp518dan@...> wrote: > > > > > > > Wow! > > > > We keep hearing stories like yours. Why isn't there some kind of checklist > > that surgeons follow? > > > > I hope you get help and answers today. Good luck. > > > > Dan > > > > -- Sent from my Phone > > On Jun 11, 2010 8:41 AM, SamSteve & lt;samsteve1@...<samsteve1%40gmail.com> & gt; > > wrote: > > > > & nbsp; > > > > > > Hello Joanne, > > > > I had a chest xray when I had my last afib attack in April. It showed > > > > a large shadow... my 9cm esophagus. That is what led me to do the > > > > esophagram (done locally in land). I then started searching for > > > > doctors and found Dr Rice. He has a video on Cleveland Cilinic's site > > > > and reviews his post-op follow-up care which includes annual visits > > > > including an esophagram. > > > > My heller myotomy was done in Nov 2006 by Dr Oelschlager, Dr P's > > > > younger partner. My experience was not a good one. I found U of W > > > > after an exhaustive pubmed search and chose them for their supposed > > > > expertise and because my brother lives there so I could recover at his > > > > home. I was told I would be a patient for life. I was called once > > > > about 6 months post op and asked only about reflux. That has been the > > > > extent of the followup. During the surgery I aspirated because I was > > > > laid flat, not a bit upright as I spcificallt told them I needed to > > > > be. My wife was kept in the dark for 5 hours while I was in the > > > > recovery room recovering from the fever brought on by the aspiration. > > > > I thankfully recovered very quickly from the fever and surgery. I do > > > > believe Dr O did the right thing by not doing the wrap as my > > > > difficulty swallowing has returned. However, I am concerned that he > > > > may have nicked my Vagus nerve which could be the reason for my afib > > > > When we asked about the aspiration we never got a real answer > > > > I will find out more after seeing Dr Rice today. I am sitting here > > > > waiting for my procedures- endoscopy, manometry, esophagram. > > > > I will let you know. > > > > Steve > > > > Sent from my iPhone > > > > On Jun 10, 2010, at 10:34 PM, Joanne Leinow & lt;joanneleinow@...<joanneleinow%40hotmail.com> & gt; > > > > > > wrote: > > > > & gt; > > > > & gt; Hi Steve: > > > > & gt; > > > > & gt; While I do not have any advice I found the post worth taking careful > > > > & gt; interest in as I had surgery with Dr. P at U of W also with no wrap. > > > > & gt; So my question is how did you know to get an esophagram and where > > > > & gt; did you have it done. > > > > & gt; > > > > & gt; The decsion to not return to U of W but to seek out Dr. Rice also > > > > & gt; interests me. > > > > & gt; > > > > & gt; These things come on so fast and I too am concerned. > > > > & gt; > > > > & gt; Joanne > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; achalasia <achalasia%40> > > > > & gt; From: samsteve1@... <samsteve1%40gmail.com> > > > > & gt; Date: Fri, 11 Jun 2010 02:10:18 +0000 > > > > & gt; Subject: Re: Some thoughts.... > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; Hello Notan, > > > > & gt; > > > > & gt; My name is Steve and I am new to the group. I have been reading the > > > > & gt; posts/archives for several weeks and appreciate all the knowledge > > > > & gt; and support everyone offers. A brief history is as follows: > > > > & gt; > > > > & gt; I was diagnosed at age 27 and had a dilation at age 28 (1988). I > > > > & gt; basically has 13 pretty good years. By age 40 I had to start > > > > & gt; sleeping elevated (in a zero gravity chair). After trying every > > > > & gt; alternative treatment I could find, I finally relented and had a > > > > & gt; Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do > > > > & gt; a fundoplication due to my esophagus been so tortuous. The next year > > > > & gt; was significantly better for me, but things gradually got worse and > > > > & gt; the great difficulty swallowing has returned. I have never had any > > > > & gt; weight loss due to achalasia. I have had only a few vomiting > > > > & gt; episodes and must really force the food down with fluid. My > > > > & gt; esophagram done last month shows a 9cm diameter. > > > > & gt; > > > > & gt; A recent curveball has been the onset of lone atrial fibrillation. I > > > > & gt; have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was > > > > & gt; successfully cardioverted each time. My stress echo is normal. I am > > > > & gt; in excellent physical condition (I always have been). > > > > & gt; > > > > & gt; I have been using Banu's curcumin remedy the last few weeks - > > > > & gt; nothing to report yet. I am sitting in my hotel room in Cleveland > > > > & gt; with my wonderfully supportive wife and will see Dr. Rice tomorrow. > > > > & gt; > > > > & gt; Any words of advice are most appreciated. > > > > & gt; > > > > & gt; Thank you. > > > > & gt; > > > > & gt; Steve > > > > & gt; > > > > & gt; > > > > & gt; & gt; & gt; ... what happens to the stomach tube after the oesophagectomy > > when > > > > & gt; & gt; & gt; the patient continues to have swallowing problems with pain > > that > > > > & gt; & gt; & gt; is associated with Achalasia? ... > > > > & gt; & gt; > > > > & gt; & gt; My understanding is that there are four main types of swallowing > > > > & gt; & gt; problems, slow emptying of the stomach, anastomosis (and other > > > > & gt; & gt; scarring), spasms, and achalasia of the UES (cricopharyngeal > > > > & gt; & gt; achalasia). > > > > & gt; & gt; I think you know about the anastomosis. The spasms would be in the > > > > & gt; & gt; remaining esophageal portion. The slow emptying would be a problem > > of > > > > & gt; & gt; the sphincter at the bottom of the stomach and treatment on it > > > > & gt; & gt; would not > > > > & gt; & gt; effect the tube much. The UES is above the tube so treatment of it > > > > > > & gt; & gt; would > > > > & gt; & gt; also not effect the tube. I don't know if they would do anything > > > > & gt; & gt; other > > > > & gt; & gt; than medication to treat the spasms in your case. Also you may not > > > > > > & gt; & gt; have > > > > & gt; & gt; any peristalsis but that should not be a problem because you also > > > > & gt; & gt; don't > > > > & gt; & gt; have much esophagus or a LES. But, you are very unique so I am > > just > > > > & gt; & gt; guessing. > > > > & gt; & gt; > > > > & gt; & gt; notan > > > > & gt; & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; > > > > & gt; __________________________________________________________ > > > > & gt; Hotmail has tools for the New Busy. Search, chat and e-mail from > > > > & gt; your inbox. > > > > & gt; > > http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 > > > > & gt; > > > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Steve wrote: > ... I am concerned that he > may have nicked my Vagus nerve which could be the reason for my afib ... From what I have read it seems to me that vagal-AF is caused by over stimulation of the vagus nerve. I can see a number of ways that achalasia could lead to vagus stimulation and AF. Even vomiting, nausea, vagal maneuvers or Valsalva maneuver have been know to trigger vagal-AF. I don't know if damage to the vagus nerve would do that, but I can see where an adhesion from the surgery could irritate and stimulate it. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 wrote: > Thank you for your information. You are welcome. I want to make sure I actually answered the question you were asking. When you said stomach tube you were referring to the tube made from the stomach? If ever there was a problem with the tube it could probably be replaced with some colon. I don't see why you would ever need that though. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2010 Report Share Posted June 12, 2010 Again Thank You Notan for your continuing thoughts. Much appreciated. It would be nice if there was a doctor or two who could give this sort of advice for free to Achalasia patients then they could decide if they need to see a GI or Surgeon. What do you think? from the UK ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Fri, June 11, 2010 7:30:20 PM Subject: Re: Re: Some thoughts.... Â wrote: > Thank you for your information. You are welcome. I want to make sure I actually answered the question you were asking. When you said stomach tube you were referring to the tube made from the stomach? If ever there was a problem with the tube it could probably be replaced with some colon. I don't see why you would ever need that though. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2010 Report Share Posted June 12, 2010 wrote: > ... It would be nice if there was a doctor or two who could give this sort of advice for free to Achalasia patients then they could decide if they need to see a GI or Surgeon. What do you think? > I don't think there is a good simple answer to that. I don't think the internet is where one should " practice medicine " . I think it is a place where one can get educated about medical conditions. When do we " need " to see a doctor about achalasia? Maybe, when symptoms change, or for a periodic check up. To tell someone they don't need to see a doctor, or to misinform them about their condition so they don't see one, risks trouble for them. Still, for what it's worth, and with that understanding, yes, it would be nice to have doctors to bounce such ideas off of. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Thank you Notan. Food for thought. from the UK ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Sat, June 12, 2010 5:10:41 PM Subject: Re: Re: Some thoughts.... Â wrote: > ... It would be nice if there was a doctor or two who could give this sort of advice for free to Achalasia patients then they could decide if they need to see a GI or Surgeon. What do you think? > I don't think there is a good simple answer to that. I don't think the internet is where one should " practice medicine " . I think it is a place where one can get educated about medical conditions. When do we " need " to see a doctor about achalasia? Maybe, when symptoms change, or for a periodic check up. To tell someone they don't need to see a doctor, or to misinform them about their condition so they don't see one, risks trouble for them. Still, for what it's worth, and with that understanding, yes, it would be nice to have doctors to bounce such ideas off of. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Hello Notan and achalasia group, Here is the summary of my visit with Dr. Rice on Friday, June 11. My appointments were as follows: 8am Endoscopy 10am Manometry 3:20pm Timed barium swallow 3:30pm Consult with Dr. Rice When I walked at 7:45am there were about 15 other people waiting for Dr. Rice. What I discovered was that Dr. Rice schedules everyone for first thing in the morning and then takes people one at a time. *He does all the endoscopies himself.* He had to suction my esophagus as the instructions I received were no solids for 6 hours and no fluids for 2 hours prior. I had no solids or fluids for 15 hours. When I walked in to have the endoscopy he asked if I had been on liquids for 2 days. He was not happy I said no, and I told him that I did not receive those instructions. Thus, the suction was necessary. He uses demerol and versed which are sedatives that do not put you completely out. My prior endoscopies done in land were always done with propofol which puts you out completely. Needless to say, the suction was unpleasant. Getting clear instructions prior to an endoscopy and knowing if you have any problems with the sedation medications are musts. Dr. Rice left the manometry tube in my E after the endoscopy and I went immediately to the manometry which was performed by one of his techs. She was wonderful. The manometry took about 15-20 minutes. I needed to swallow 10 times and the pressure in my E was measured. It was about 1:30pm by the time I was done with the manometry and I went directly to radiology for the barium swallow. They got me in by 2:15pm which was great. The timed barium swallow is simply swallowing about 8oz of barium (you have 45 sec. to swallow as much of it as you can - I was able to swallow all of it) and then pictures are taken at 1min/3min/5min to see how much barium passes into the stomach. None of the barium passed through for me. After the barium swallow I had time to go to the cafeteria a get a smoothie as this was my first food or drink since 7pm the prior night. Having all 3 tests in one day is tiring, but it is the only way to go. Getting all the data and finding out the results in the same day was great! Dr. Rice took me before 4pm so my day ended up pretty much on time. Very impressive for any doctor's office, especially since all these tests had to be coordinated. When I walked into the room Dr. Rice was there and immediately said, " You've got to have it out. " No beating around the bush - I need an ectomy. He then went on to describe why, showed us all my results, and showed us a great powerpoint about achalasia. My E is dilated 9cm, tortuous, and has formed a pouch just below the LES which makes it difficult for food to get through as it now has to fight gravity. I still feel like I can swallow OK, I just need lots of water to force it down. He said there is no rush to do the surgery, I can wait up to several years to have the ectomy. We found Dr. Rice to be to the point and a great educator. He was not brusque at all. Not only that, he really seems to want to get the best result possible for each patients and was very clear about the annual follow-up. We have tremendous confidence in Dr. Rice. All of his existing patients we spoke thought the same. See this video on Cleveland Clinic's site: http://www.clevelandclinic.org/heartcenter/podcast/media/rice.mp4 I am not happy at all with the fact I need an ectomy. I am very physically active (competitive powerlifter) and my job is demanding as well (sports medicine doc). Any information that anyone can provide about their physical activity level after having an ectomy would be greatly appreciated. I know that I would need 12 - 18 months to fully heal, but with a 3 year old who loves to be lifted thrown around (I guess daddy loves it as much as he does), I am pretty devastated right now. My wife and I will be off to see Dr. Patti next week. We'll see what he says. Thanks to everyone on the forum for a wonderful exchange of information and support. Steve On Fri, Jun 11, 2010 at 11:16 AM, notan ostrich <notan_ostrich@...>wrote: > > > Steve wrote: > > ... I am concerned that he > > may have nicked my Vagus nerve which could be the reason for my afib ... > > From what I have read it seems to me that vagal-AF is caused by over > stimulation of the vagus nerve. I can see a number of ways that > achalasia could lead to vagus stimulation and AF. Even vomiting, nausea, > vagal maneuvers or Valsalva maneuver have been know to trigger vagal-AF. > I don't know if damage to the vagus nerve would do that, but I can see > where an adhesion from the surgery could irritate and stimulate it. > > notan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Thanks Dan. See my post to Notan for the summary of my visit with Dr. Rice. Steve On Fri, Jun 11, 2010 at 9:18 AM, Hoffman <rp518dan@...> wrote: > > > Wow! > > We keep hearing stories like yours. Why isn't there some kind of checklist > that surgeons follow? > > I hope you get help and answers today. Good luck. > > Dan > > -- Sent from my Phone > On Jun 11, 2010 8:41 AM, SamSteve & lt;samsteve1@...<samsteve1%40gmail.com> & gt; > wrote: > > & nbsp; > > > Hello Joanne, > > I had a chest xray when I had my last afib attack in April. It showed > > a large shadow... my 9cm esophagus. That is what led me to do the > > esophagram (done locally in land). I then started searching for > > doctors and found Dr Rice. He has a video on Cleveland Cilinic's site > > and reviews his post-op follow-up care which includes annual visits > > including an esophagram. > > My heller myotomy was done in Nov 2006 by Dr Oelschlager, Dr P's > > younger partner. My experience was not a good one. I found U of W > > after an exhaustive pubmed search and chose them for their supposed > > expertise and because my brother lives there so I could recover at his > > home. I was told I would be a patient for life. I was called once > > about 6 months post op and asked only about reflux. That has been the > > extent of the followup. During the surgery I aspirated because I was > > laid flat, not a bit upright as I spcificallt told them I needed to > > be. My wife was kept in the dark for 5 hours while I was in the > > recovery room recovering from the fever brought on by the aspiration. > > I thankfully recovered very quickly from the fever and surgery. I do > > believe Dr O did the right thing by not doing the wrap as my > > difficulty swallowing has returned. However, I am concerned that he > > may have nicked my Vagus nerve which could be the reason for my afib > > When we asked about the aspiration we never got a real answer > > I will find out more after seeing Dr Rice today. I am sitting here > > waiting for my procedures- endoscopy, manometry, esophagram. > > I will let you know. > > Steve > > Sent from my iPhone > > On Jun 10, 2010, at 10:34 PM, Joanne Leinow & lt;joanneleinow@...<joanneleinow%40hotmail.com> & gt; > > > wrote: > > & gt; > > & gt; Hi Steve: > > & gt; > > & gt; While I do not have any advice I found the post worth taking careful > > & gt; interest in as I had surgery with Dr. P at U of W also with no wrap. > > & gt; So my question is how did you know to get an esophagram and where > > & gt; did you have it done. > > & gt; > > & gt; The decsion to not return to U of W but to seek out Dr. Rice also > > & gt; interests me. > > & gt; > > & gt; These things come on so fast and I too am concerned. > > & gt; > > & gt; Joanne > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; achalasia <achalasia%40> > > & gt; From: samsteve1@... <samsteve1%40gmail.com> > > & gt; Date: Fri, 11 Jun 2010 02:10:18 +0000 > > & gt; Subject: Re: Some thoughts.... > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; Hello Notan, > > & gt; > > & gt; My name is Steve and I am new to the group. I have been reading the > > & gt; posts/archives for several weeks and appreciate all the knowledge > > & gt; and support everyone offers. A brief history is as follows: > > & gt; > > & gt; I was diagnosed at age 27 and had a dilation at age 28 (1988). I > > & gt; basically has 13 pretty good years. By age 40 I had to start > > & gt; sleeping elevated (in a zero gravity chair). After trying every > > & gt; alternative treatment I could find, I finally relented and had a > > & gt; Heller myotomy done in 2006 by Oelschlager in Seattle. He did not do > > & gt; a fundoplication due to my esophagus been so tortuous. The next year > > & gt; was significantly better for me, but things gradually got worse and > > & gt; the great difficulty swallowing has returned. I have never had any > > & gt; weight loss due to achalasia. I have had only a few vomiting > > & gt; episodes and must really force the food down with fluid. My > > & gt; esophagram done last month shows a 9cm diameter. > > & gt; > > & gt; A recent curveball has been the onset of lone atrial fibrillation. I > > & gt; have had 4 attacks (Aug 2009, Oct 2009, Feb 2010, April 2010). I was > > & gt; successfully cardioverted each time. My stress echo is normal. I am > > & gt; in excellent physical condition (I always have been). > > & gt; > > & gt; I have been using Banu's curcumin remedy the last few weeks - > > & gt; nothing to report yet. I am sitting in my hotel room in Cleveland > > & gt; with my wonderfully supportive wife and will see Dr. Rice tomorrow. > > & gt; > > & gt; Any words of advice are most appreciated. > > & gt; > > & gt; Thank you. > > & gt; > > & gt; Steve > > & gt; > > & gt; > > & gt; & gt; & gt; ... what happens to the stomach tube after the oesophagectomy > when > > & gt; & gt; & gt; the patient continues to have swallowing problems with pain > that > > & gt; & gt; & gt; is associated with Achalasia? ... > > & gt; & gt; > > & gt; & gt; My understanding is that there are four main types of swallowing > > & gt; & gt; problems, slow emptying of the stomach, anastomosis (and other > > & gt; & gt; scarring), spasms, and achalasia of the UES (cricopharyngeal > > & gt; & gt; achalasia). > > & gt; & gt; I think you know about the anastomosis. The spasms would be in the > > & gt; & gt; remaining esophageal portion. The slow emptying would be a problem > of > > & gt; & gt; the sphincter at the bottom of the stomach and treatment on it > > & gt; & gt; would not > > & gt; & gt; effect the tube much. The UES is above the tube so treatment of it > > > & gt; & gt; would > > & gt; & gt; also not effect the tube. I don't know if they would do anything > > & gt; & gt; other > > & gt; & gt; than medication to treat the spasms in your case. Also you may not > > > & gt; & gt; have > > & gt; & gt; any peristalsis but that should not be a problem because you also > > & gt; & gt; don't > > & gt; & gt; have much esophagus or a LES. But, you are very unique so I am > just > > & gt; & gt; guessing. > > & gt; & gt; > > & gt; & gt; notan > > & gt; & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; > > & gt; __________________________________________________________ > > & gt; Hotmail has tools for the New Busy. Search, chat and e-mail from > > & gt; your inbox. > > & gt; > http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en\ -US:WM_HMP:042010_1 > > & gt; > > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Hi Steve, Thank you for giving a most " visual " description of your day at TCC. I did not look at the video yet. I can't recall anyone else having shared with the group in such detail exactly what went on. I am also very interested in reading about your upcoming appointment with Dr. Patti. While I have not yet seen either of these top ranked surgeons yet, it might just be a matter of time since my physical symptoms closely resemble yours, and one of Dr. Rice's close former associates gave me the same report you received. Good luck with everything going forward and please ask every question you can think of. ________________________________ From: Sam and Steve <samsteve1@...> achalasia Sent: Mon, June 14, 2010 12:49:23 PM Subject: Re: Re: Some thoughts.... Hello Notan and achalasia group, Here is the summary of my visit with Dr. Rice on Friday, June 11. My appointments were as follows: 8am Endoscopy 10am Manometry 3:20pm Timed barium swallow 3:30pm Consult with Dr. Rice When I walked at 7:45am there were about 15 other people waiting for Dr. Rice. What I discovered was that Dr. Rice schedules everyone for first thing in the morning and then takes people one at a time. *He does all the endoscopies himself.* He had to suction my esophagus as the instructions I received were no solids for 6 hours and no fluids for 2 hours prior. I had no solids or fluids for 15 hours. When I walked in to have the endoscopy he asked if I had been on liquids for 2 days. He was not happy I said no, and I told him that I did not receive those instructions. Thus, the suction was necessary. He uses demerol and versed which are sedatives that do not put you completely out. My prior endoscopies done in land were always done with propofol which puts you out completely. Needless to say, the suction was unpleasant. Getting clear instructions prior to an endoscopy and knowing if you have any problems with the sedation medications are musts. Dr. Rice left the manometry tube in my E after the endoscopy and I went immediately to the manometry which was performed by one of his techs. She was wonderful. The manometry took about 15-20 minutes. I needed to swallow 10 times and the pressure in my E was measured. It was about 1:30pm by the time I was done with the manometry and I went directly to radiology for the barium swallow. They got me in by 2:15pm which was great. The timed barium swallow is simply swallowing about 8oz of barium (you have 45 sec. to swallow as much of it as you can - I was able to swallow all of it) and then pictures are taken at 1min/3min/5min to see how much barium passes into the stomach. None of the barium passed through for me. After the barium swallow I had time to go to the cafeteria a get a smoothie as this was my first food or drink since 7pm the prior night. Having all 3 tests in one day is tiring, but it is the only way to go. Getting all the data and finding out the results in the same day was great! Dr. Rice took me before 4pm so my day ended up pretty much on time. Very impressive for any doctor's office, especially since all these tests had to be coordinated. When I walked into the room Dr. Rice was there and immediately said, " You've got to have it out. " No beating around the bush - I need an ectomy. He then went on to describe why, showed us all my results, and showed us a great powerpoint about achalasia. My E is dilated 9cm, tortuous, and has formed a pouch just below the LES which makes it difficult for food to get through as it now has to fight gravity. I still feel like I can swallow OK, I just need lots of water to force it down. He said there is no rush to do the surgery, I can wait up to several years to have the ectomy. We found Dr. Rice to be to the point and a great educator. He was not brusque at all. Not only that, he really seems to want to get the best result possible for each patients and was very clear about the annual follow-up. We have tremendous confidence in Dr. Rice. All of his existing patients we spoke thought the same. See this video on Cleveland Clinic's site: http://www.clevelandclinic.org/heartcenter/podcast/media/rice.mp4 I am not happy at all with the fact I need an ectomy. I am very physically active (competitive powerlifter) and my job is demanding as well (sports medicine doc). Any information that anyone can provide about their physical activity level after having an ectomy would be greatly appreciated. I know that I would need 12 - 18 months to fully heal, but with a 3 year old who loves to be lifted thrown around (I guess daddy loves it as much as he does), I am pretty devastated right now. My wife and I will be off to see Dr. Patti next week. We'll see what he says. Thanks to everyone on the forum for a wonderful exchange of information and support. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 , Thanks for your comments. I will ask many questions. The thought of an ectomy is not sitting well with me. Steve Sent from my iPhone On Jun 14, 2010, at 1:53 PM, RICHARD FRIEDMAN <cynmark24@...> wrote: > Hi Steve, > > Thank you for giving a most " visual " description of your day at TCC. > I did not look at the video yet. I can't recall anyone else having > shared with the group in such detail exactly what went on. I am > also very interested in reading about your upcoming appointment with > Dr. Patti. > > While I have not yet seen either of these top ranked surgeons yet, > it might just be a matter of time since my physical symptoms closely > resemble yours, and one of Dr. Rice's close former associates gave > me the same report you received. > > Good luck with everything going forward and please ask every > question you can think of. > > > > ________________________________ > From: Sam and Steve <samsteve1@...> > achalasia > Sent: Mon, June 14, 2010 12:49:23 PM > Subject: Re: Re: Some thoughts.... > > Hello Notan and achalasia group, > > Here is the summary of my visit with Dr. Rice on Friday, June 11. My > appointments were as follows: > 8am Endoscopy > 10am Manometry > 3:20pm Timed barium swallow > 3:30pm Consult with Dr. Rice > > When I walked at 7:45am there were about 15 other people waiting for > Dr. > Rice. What I discovered was that Dr. Rice schedules everyone for > first thing > in the morning and then takes people one at a time. *He does all the > endoscopies himself.* He had to suction my esophagus as the > instructions I > received were no solids for 6 hours and no fluids for 2 hours prior. > I had > no solids or fluids for 15 hours. When I walked in to have the > endoscopy he > asked if I had been on liquids for 2 days. He was not happy I said > no, and I > told him that I did not receive those instructions. Thus, the > suction was > necessary. He uses demerol and versed which are sedatives that do > not put > you completely out. My prior endoscopies done in land were > always done > with propofol which puts you out completely. Needless to say, the > suction > was unpleasant. Getting clear instructions prior to an endoscopy and > knowing > if you have any problems with the sedation medications are musts. > > Dr. Rice left the manometry tube in my E after the endoscopy and I > went > immediately to the manometry which was performed by one of his > techs. She > was wonderful. The manometry took about 15-20 minutes. I needed to > swallow > 10 times and the pressure in my E was measured. It was about 1:30pm > by the > time I was done with the manometry and I went directly to radiology > for the > barium swallow. They got me in by 2:15pm which was great. The timed > barium > swallow is simply swallowing about 8oz of barium (you have 45 sec. to > swallow as much of it as you can - I was able to swallow all of it) > and then > pictures are taken at 1min/3min/5min to see how much barium passes > into the > stomach. None of the barium passed through for me. > > After the barium swallow I had time to go to the cafeteria a get a > smoothie > as this was my first food or drink since 7pm the prior night. Having > all 3 > tests in one day is tiring, but it is the only way to go. Getting > all the > data and finding out the results in the same day was great! > > Dr. Rice took me before 4pm so my day ended up pretty much on time. > Very > impressive for any doctor's office, especially since all these tests > had to > be coordinated. When I walked into the room Dr. Rice was there and > immediately said, " You've got to have it out. " No beating around the > bush - > I need an ectomy. He then went on to describe why, showed us all my > results, > and showed us a great powerpoint about achalasia. My E is dilated 9cm, > tortuous, and has formed a pouch just below the LES which makes it > difficult > for food to get through as it now has to fight gravity. I still feel > like I > can swallow OK, I just need lots of water to force it down. > > He said there is no rush to do the surgery, I can wait up to several > years > to have the ectomy. We found Dr. Rice to be to the point and a great > educator. He was not brusque at all. Not only that, he really seems > to want > to get the best result possible for each patients and was very clear > about > the annual follow-up. We have tremendous confidence in Dr. Rice. All > of his > existing patients we spoke thought the same. > > See this video on Cleveland Clinic's site: > http://www.clevelandclinic.org/heartcenter/podcast/media/rice.mp4 > > I am not happy at all with the fact I need an ectomy. I am very > physically > active (competitive powerlifter) and my job is demanding as well > (sports > medicine doc). > Any information that anyone can provide about their physical > activity level > after having an ectomy would be greatly appreciated. I know that I > would > need 12 - 18 months to fully heal, but with a 3 year old who loves > to be > lifted thrown around (I guess daddy loves it as much as he does), I am > pretty devastated right now. > > My wife and I will be off to see Dr. Patti next week. We'll see what > he > says. > > Thanks to everyone on the forum for a wonderful exchange of > information and > support. > > Steve > > Quote Link to comment Share on other sites More sharing options...
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