Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Second opinion, second opinion, second opinion. If you do end up researching the west coast, try checking out UCLA....Wonderful!!! Good luck. You are so young, you want to make sure your long term effects are brought into consideration. Best of luck and in my thoughts.Tamara <tmrwasden@...> wrote: Hello all, I went to meet my surgeon today. I thought I was going in to find out about a 2nd myotomy, turns out I may not be a canditate for one. We are waiting for some more test to get to him aswell as the reports from my first myotomy he knows that surgeon and said he would get them although I was not able to. Anyway looks like I just joined the ectomy group. He said I am developing a mega "E" said that I will eventually need one but that it was of course in the end up to me not anybody else. He studied under Dr. Patti and Dr. Pelgrini (spelling). I talked to him about his expeirence and I was assured he IS THE BEST in the rocky mountain region. Other wise I would have to go to the west coast to find better. He said it depends on my first myotomy on what we will be able to do. For some reason I am pretty calm I suppose I have dealt with it long enough I am 28 and had my first symptoms at 7 or 8. So I have dealt with it long enough I had my myotomy when I was 16. He said I could go for years like this but sooner or later my "E" have enough and just collapse Basically. I have a vestabule(spelling) and that it is turning into the j shape "E". On my end I feel that I would rather get it done now then wait until I am older. I feel the longer I wait the longer it will take to heal. But like you all have said that 2% mortality rate is still there. He has done alot of these mostly like the other surgeons is for people with Cancer not "A". So how do we know if that mortality rate is for us aswell? Anyway I thank you all for being here for me. Lot's of love from Tamara in utah Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Hi Y’all. A second opinion is your right. Regarding UCLA, as I am a patient in the UCLA medical group, my GI doc referred me to Maish, the only thoracic surgeon at UCLA whose specialty is primarily esophagus. She is the one who told me I need esophagectomy. My first impression of her was good and I really liked her. She seems to know her stuff and I think I would be confident in her skills as a surgeon. However, we all have a right to a second opinion and, by law, your insurance carrier must allow you this opportunity. For me, having done some extensive research, I am planning on seeing a thoracic surgeon by the name of Tom DeMeester at USC. He apparently is tops in this field and from what I heard, has pioneered certain surgical procedure(s) for the esophagus. He is highly regarded and recommended by various folks in the medical community. If you go on the USC and UCLA websites you can learn more about both Dr. Maish and Dr. DeMeester. Good Luck! Z. From: achalasia [mailto:achalasia ] On Behalf Of McGaff Sent: Tuesday, August 29, 2006 9:21 PM achalasia Subject: Re: Esophgectomy Second opinion, second opinion, second opinion. If you do end up researching the west coast, try checking out UCLA....Wonderful!!! Good luck. You are so young, you want to make sure your long term effects are brought into consideration. Best of luck and in my thoughts. Tamara <tmrwasden > wrote: Hello all, I went to meet my surgeon today. I thought I was going in to find out about a 2nd myotomy, turns out I may not be a canditate for one. We are waiting for some more test to get to him aswell as the reports from my first myotomy he knows that surgeon and said he would get them although I was not able to. Anyway looks like I just joined the ectomy group. He said I am developing a mega " E " said that I will eventually need one but that it was of course in the end up to me not anybody else. He studied under Dr. Patti and Dr. Pelgrini (spelling). I talked to him about his expeirence and I was assured he IS THE BEST in the rocky mountain region. Other wise I would have to go to the west coast to find better. He said it depends on my first myotomy on what we will be able to do. For some reason I am pretty calm I suppose I have dealt with it long enough I am 28 and had my first symptoms at 7 or 8. So I have dealt with it long enough I had my myotomy when I was 16. He said I could go for years like this but sooner or later my " E " have enough and just collapse Basically. I have a vestabule(spelling) and that it is turning into the j shape " E " . On my end I feel that I would rather get it done now then wait until I am older. I feel the longer I wait the longer it will take to heal. But like you all have said that 2% mortality rate is still there. He has done alot of these mostly like the other surgeons is for people with Cancer not " A " . So how do we know if that mortality rate is for us aswell? Anyway I thank you all for being here for me. Lot's of love from Tamara in utah Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 , Thank you so much for this post. Only by sharing information this way can we all benefit from each other's experience. I like to hear that their are surgeons who are exploring new ways of doing these surgeries. I'll follow your advice and check out those web sites, thanks. In a message dated 9/1/2006 9:52:11 A.M. Eastern Daylight Time, smichele2@... writes: Hi Y’all. A second opinion is your right. Regarding UCLA, as I am a patient in the UCLA medical group, my GI doc referred me to Maish, the only thoracic surgeon at UCLA whose specialty is primarily esophagus. She is the one who told me I need esophagectomy. My first impression of her was good and I really liked her. She seems to know her stuff and I think I would be confident in her skills as a surgeon. However, we all have a right to a second opinion and, by law, your insurance carrier must allow you this opportunity. For me, having done some extensive research, I am planning on seeing a thoracic surgeon by the name of Tom DeMeester at USC. He apparently is tops in this field and from what I heard, has pioneered certain surgical procedure(s) for the esophagus. He is highly regarded and recommended by various folks in the medical community. If you go on the USC and UCLA websites you can learn more about both Dr. Maish and Dr. DeMeester. Good Luck! Z. From: achalasia [mailto:achalasia ] On Behalf Of McGaffSent: Tuesday, August 29, 2006 9:21 PMachalasia Subject: Re: Esophgectomy Second opinion, second opinion, second opinion. If you do end up researching the west coast, try checking out UCLA....Wonderful!!! Good luck. You are so young, you want to make sure your long term effects are brought into consideration. Best of luck and in my thoughts.Tamara <tmrwasden > wrote: Hello all, I went to meet my surgeon today. I thought I was going in to find out about a 2nd myotomy, turns out I may not be a canditate for one. We are waiting for some more test to get to him aswell as the reports from my first myotomy he knows that surgeon and said he would get them although I was not able to. Anyway looks like I just joined the ectomy group. He said I am developing a mega "E" said that I will eventually need one but that it was of course in the end up to me not anybody else. He studied under Dr. Patti and Dr. Pelgrini (spelling). I talked to him about his expeirence and I was assured he IS THE BEST in the rocky mountain region. Other wise I would have to go to the west coast to find better. He said it depends on my first myotomy on what we will be able to do. For some reason I am pretty calm I suppose I have dealt with it long enough I am 28 and had my first symptoms at 7 or 8. So I have dealt with it long enough I had my myotomy when I was 16. He said I could go for years like this but sooner or later my "E" have enough and just collapse Basically. I have a vestabule(spelling) and that it is turning into the j shape "E". On my end I feel that I would rather get it done now then wait until I am older. I feel the longer I wait the longer it will take to heal. But like you all have said that 2% mortality rate is still there. He has done alot of these mostly like the other surgeons is for people with Cancer not "A". So how do we know if that mortality rate is for us aswell? Anyway I thank you all for being here for me. Lot's of love from Tamara in utah Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Hi and Ectomy Gang, My insurance company contacted me today and has authorized a 2nd opinion. Although I can go out of network, in order to get authorized for this I have to go to a provider who is contracted with my insurance carrier. Unfortunately, USC Medical Center and DeMeester are not. However, my second choice physician is contracted with my insurance carrier (Dr. Fuller) and I have an appointment to see him on 9/29/06. This gives me time to gather up all pertinent medical records and films. Z. From: achalasia [mailto:achalasia ] On Behalf Of cynmark24@... Sent: Friday, September 01, 2006 10:05 AM achalasia Subject: Re: Esophgectomy , Thank you so much for this post. Only by sharing information this way can we all benefit from each other's experience. I like to hear that their are surgeons who are exploring new ways of doing these surgeries. I'll follow your advice and check out those web sites, thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Dr. Fuller is a terrific esophagist -- you are in good hands with your second opinion! Peggy from Lompoc, CA, who had myotomy 8/8/06 and swallowing great! > > Hi and Ectomy Gang, > > > > My insurance company contacted me today and has authorized a 2nd opinion. > Although I can go out of network, in order to get authorized for this I have > to go to a provider who is contracted with my insurance carrier. > Unfortunately, USC Medical Center and DeMeester are not. However, my second > choice physician is contracted with my insurance carrier (Dr. Fuller) > and I have an appointment to see him on 9/29/06. This gives me time to > gather up all pertinent medical records and films. > > > > Z. > > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf > Of cynmark24@... > Sent: Friday, September 01, 2006 10:05 AM > achalasia > Subject: Re: Esophgectomy > > > > , > > > > Thank you so much for this post. Only by sharing information this > way can we all benefit from each other's experience. I like to hear that > their are surgeons who are exploring new ways of doing these surgeries. > I'll follow your advice and check out those web sites, thanks. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 Tamara, If it is any comfort to you my surgeon told me my risks were vertually zero for the oesophagectomy. No procedure is risk free, as you know just having an anaesthetic for simple procedures carries a risk. This is based on the fact that my hospital undertakes approximately 3 oesophagectmoies per year for Achalasia and more for Barretts oesophagus and in 20 years they have never lost any one of those patients. 2% is not really captured in such low volume but it is reassuring none the less. The main factors that push the risks up are based on the cancer. We don't have cancer...and just think, we will never have cancer of the oesophagus! My hospital undertakes approximately 3 oesophagectomy procedures per week, this is they key to keeping the risks low. You need a surgeon that is very very experienced and practically does this all the time and also he needs to work in a centre where the other staff also do this all the time. It is extremely rare that an oesophagectomy patient is lost during the actual procedure but the hospital needs good intensive care type support for the first 24-36 hours. I hope this reassures you. Incidentally, has anyone noticed how many of us seem to be facing this right now? I only joined this board this year so I do not have a feel for how the oesophagectomy debate has gone over the years, but it feels like this is now being offered up as a sloution more than previous years. STEVE Esophgectomy Hello all, I went to meet my surgeon today. I thought I was going in to find out about a 2nd myotomy, turns out I may not be a canditate for one. We are waiting for some more test to get to him aswell as the reports from my first myotomy he knows that surgeon and said he would get them although I was not able to. Anyway looks like I just joined the ectomy group. He said I am developing a mega "E" said that I will eventually need one but that it was of course in the end up to me not anybody else. He studied under Dr. Patti and Dr. Pelgrini (spelling). I talked to him about his expeirence and I was assured he IS THE BEST in the rocky mountain region. Other wise I would have to go to the west coast to find better. He said it depends on my first myotomy on what we will be able to do. For some reason I am pretty calm I suppose I have dealt with it long enough I am 28 and had my first symptoms at 7 or 8. So I have dealt with it long enough I had my myotomy when I was 16. He said I could go for years like this but sooner or later my "E" have enough and just collapse Basically. I have a vestabule(spelling) and that it is turning into the j shape "E". On my end I feel that I would rather get it done now then wait until I am older. I feel the longer I wait the longer it will take to heal. But like you all have said that 2% mortality rate is still there. He has done alot of these mostly like the other surgeons is for people with Cancer not "A". So how do we know if that mortality rate is for us aswell? Anyway I thank you all for being here for me. Lot's of love from Tamara in utah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 I would really like to reassure everyone facing esophagectomy or other surgeries. There are always risks but very few people die from surgery. Even the small percentage who develop mild to horrific postoperative complications usually make it. The majority of patients who develop complications are usually ones whose health is already compromised for other medical reasons. It sounds like the majority of us are relatively healthy except for our achalasia. However, having been through two major surgeries in my life; bariatric for weight loss in 1999 and abdominoplasty at the end of 2003, I can’t recommend enough that someone facing major surgery get themselves in better physical shape before their procedure, if there is time to do so. For most of us even though esophagectomy is inevitable, it is still an elective procedure so most of us have some time to get into better physical shape before surgery. I do water aerobics almost every night and incorporate swimming, which I have been doing for a few years, but not quite to this extent. Whatever works that you can fit into your schedules is great. I hope this helps. Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 Dear , Dr. Fuller was my surgeon also. I'm doing wonderfully over two years after the myotomy. Of course you are facing a different operation, but he is very knowledgeable about esophageal diseases. If you can, you might try to get another 2nd opinion from a gi, Dr. Ippoliti, also now at Cedars, but previously at UCLA. That is if your insurance will allow a gi 2nd opinion. Good luck. Sandy in So Cal>> Hi and Ectomy Gang,> > > > My insurance company contacted me today and has authorized a 2nd opinion.> Although I can go out of network, in order to get authorized for this I have> to go to a provider who is contracted with my insurance carrier.> Unfortunately, USC Medical Center and DeMeester are not. However, my second> choice physician is contracted with my insurance carrier (Dr. Fuller)> and I have an appointment to see him on 9/29/06. This gives me time to> gather up all pertinent medical records and films. > > > > Z.> > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf> Of cynmark24@...> Sent: Friday, September 01, 2006 10:05 AM> achalasia > Subject: Re: Esophgectomy> > > > ,> > > > Thank you so much for this post. Only by sharing information this> way can we all benefit from each other's experience. I like to hear that> their are surgeons who are exploring new ways of doing these surgeries.> I'll follow your advice and check out those web sites, thanks.> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 Thanks Steve it is reasuring to know these things. I guess at this point anything is right? I to feel that the 'ectomy is becoming more common I am not sure though if it becomes this way for all I certanily hope not. Before I joined this group I thought for sure that I was going to die, every time I went for a diliation I would cry the night before telling my husband that if I died I wanted him to do such and such. It isn't fair in my opionan but what do we do we live each day to it's fullest and go from there right. I thank you for thinking I have a good outlook on all of this. But trust me I am trying so hard to keep my head up. Alot has happened in my family life recently that changed alot about the way I think and feel. there are alot of people in my family that are not talking to me right now and I have come to realize that I have no one else to look out for my kids or my husband. So I have decided to fight with every thing I have to live and live strong. Isn't that what parents do anyway teach thier kids that no matter what it is worth fighting for if you want it bad enough. There have been times with this disorder that I have wanted to die take the easy way out and leave it all behind . Even though I am only 28 I have lived a full life it would be ok if I went but my kids need me more then my own selfish needs. besides I want to grow old and be a Grandma LOL sittin on the front porch watching my grandkids. I do wonder though after an 'ectomy can we bend over or do hand stands? My 8yr old is in gymnastics she competes at level 4 and she is always talking me in to these things she think it is so funny to watch me try to do what she can do so easily. Lot's of love Tamara in Utah : > > Tamara, > > If it is any comfort to you my surgeon told me my risks were vertually zero for the oesophagectomy. No procedure is risk free, as you know just having an anaesthetic for simple procedures carries a risk. This is based on the fact that my hospital undertakes approximately 3 oesophagectmoies per year for Achalasia and more for Barretts oesophagus and in 20 years they have never lost any one of those patients. 2% is not really captured in such low volume but it is reassuring none the less. The main factors that push the risks up are based on the cancer. We don't have cancer...and just think, we will never have cancer of the oesophagus! > > My hospital undertakes approximately 3 oesophagectomy procedures per week, this is they key to keeping the risks low. You need a surgeon that is very very experienced and practically does this all the time and also he needs to work in a centre where the other staff also do this all the time. It is extremely rare that an oesophagectomy patient is lost during the actual procedure but the hospital needs good intensive care type support for the first 24-36 hours. > > I hope this reassures you. > > Incidentally, has anyone noticed how many of us seem to be facing this right now? I only joined this board this year so I do not have a feel for how the oesophagectomy debate has gone over the years, but it feels like this is now being offered up as a sloution more than previous years. > > STEVE > > > Esophgectomy > > Hello all, I went to meet my surgeon today. I thought I was going in > to find out about a 2nd myotomy, turns out I may not be a canditate > for one. We are waiting for some more test to get to him aswell as > the reports from my first myotomy he knows that surgeon and said he > would get them although I was not able to. Anyway looks like I just > joined the ectomy group. He said I am developing a mega " E " said > that I will eventually need one but that it was of course in the end > up to me not anybody else. He studied under Dr. Patti and Dr. > Pelgrini (spelling). I talked to him about his expeirence and I was > assured he IS THE BEST in the rocky mountain region. Other wise I > would have to go to the west coast to find better. He said it > depends on my first myotomy on what we will be able to do. For some > reason I am pretty calm I suppose I have dealt with it long enough I > am 28 and had my first symptoms at 7 or 8. So I have dealt with it > long enough I had my myotomy when I was 16. He said I could go for > years like this but sooner or later my " E " have enough and just > collapse Basically. I have a vestabule(spelling) and that it is > turning into the j shape " E " . On my end I feel that I would rather > get it done now then wait until I am older. I feel the longer I wait > the longer it will take to heal. But like you all have said that 2% > mortality rate is still there. He has done alot of these mostly like > the other surgeons is for people with Cancer not " A " . So how do we > know if that mortality rate is for us aswell? Anyway I thank you all > for being here for me. Lot's of love from Tamara in utah > Quote Link to comment Share on other sites More sharing options...
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