Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 oh my lord no... Now, that's my personal opinion, but she's a child and to remove her esophagus??!! Â No way would I consider that an option for my child unless every doctor I consulted said there was no other option. Â I am having my fair share of achalasia issues this year, and up for my 2nd myotomy shortly after the birth of my son this summer, but an 'ectomy isn't even in my long term vision at this point... I'm holding onto all my bits for as long as I can, or at least until my options aren't looking like they're going to give me long-ish term relief. kim in canada From: shareedanieal <shareedanieal@...> Subject: Taniea achalasia Date: Wednesday, February 23, 2011, 6:22 PM Â I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 Thank you for answering so quickly. I appreciate your input. I know it is a radical treatment which is why I thought I woulld ask the groups opinion on it Sent from my iPhone On Feb 23, 2011, at 4:28 PM, Kim <kimmydawn42@...> wrote: oh my lord no... Now, that's my personal opinion, but she's a child and to remove her esophagus??!! No way would I consider that an option for my child unless every doctor I consulted said there was no other option. I am having my fair share of achalasia issues this year, and up for my 2nd myotomy shortly after the birth of my son this summer, but an 'ectomy isn't even in my long term vision at this point... I'm holding onto all my bits for as long as I can, or at least until my options aren't looking like they're going to give me long-ish term relief. kim in canada From: shareedanieal <shareedanieal@...> Subject: Taniea achalasia Date: Wednesday, February 23, 2011, 6:22 PM I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 please get a 2nd or third opinion. do you have university hospital near you. she is too you. try myotomy first to see if it will work for her.. . I will pray for her. ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 5:22:01 PM Subject: Taniea  I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 Thank you, she has had one myotomy already and she has gotten some relief. We do have a some universities close but they are not well versed with Achalasia. We have OU here. Thank you for your prayers especially we could use all we can get ________________________________ From: fe busse <bil45ohb@...> achalasia Sent: Wed, February 23, 2011 6:02:50 PM Subject: Re: Taniea please get a 2nd or third opinion. do you have university hospital near you. she is too you. try myotomy first to see if it will work for her.. . I will pray for her. ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 5:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 I have written about my story before, I have had A for 30 yrs since the age of 14, I'm now 46. I have had 8 dilations in the beginning, two Myotomy and after many, many years of reflux, pain and lack of sleep and any kind of life, it was time for me to have a ectomy, which I did in early Dec. It has been 3 months and I have NEVER FELT better. I'm sleeping through the night with no pain, I have no dumping, I know when I'm full so I don't stuff myself. It took me a long time to wrap my mind around it but in the end I should have done it long ago. I can only say that I'm enjoying foods that I could have never enjoyed before. I take no meds for reflux. The only con that I have is a little sticking, which I have had a dilation and seems better. With her age I would start off with the myotomy, and hopefully it will last her a good long time. My first one lasted 15years. Medicine is getting better and better, I have seen that with having this for a long time.with this condition. Some day they might be able to replace the E with a working one. My Doc, in LA is working on that in her lab. It is so hard to know what to do for someone so young. I would start off with the myotomy and see.The ectomy for me has only been positive as a long term solution. I'll be thinking of her, I know how she feels from LA ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 2:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Well Sharee - I've had the ectomy and for anyone over the age of say 25 or 30 - I'd say 'do it!!' I feel better than I've felt in years. At Taniea's age - I'd look at other options. Have you considered either the Cleveland Clinic, Chicago (Dr. Patti) or Pittsburgh? I know they are a distance from you but going to the best of the best gives Taniea the most life out of her myotomy. Someday in the future if she does need the ectomy - you can cross that road and it's not at all the end of the world. In the meantime, hopefully someone can give her a good 15 years or so with her myo and then - who knows what the future will be? BTW - the ectomy is not the hugely major surgery it was even just 10 years ago but it's still MUCH more major than a myo. > > I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 I have talked to Dr. Patti but he has referred us to Dr. Pellegrini in Washington. Taniea has had one myotomy already, which is why I was thinking of looking into the ectomy. I think it is safe to say that the majority of the group agrees with you, so I will definitely consider what you have said. I definitely don't want to jump the gun and make any rash decisions. Thank you Shamira ________________________________ From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Thu, February 24, 2011 8:20:14 AM Subject: Re: Taniea Well Sharee - I've had the ectomy and for anyone over the age of say 25 or 30 - I'd say 'do it!!' I feel better than I've felt in years. At Taniea's age - I'd look at other options. Have you considered either the Cleveland Clinic, Chicago (Dr. Patti) or Pittsburgh? I know they are a distance from you but going to the best of the best gives Taniea the most life out of her myotomy. Someday in the future if she does need the ectomy - you can cross that road and it's not at all the end of the world. In the meantime, hopefully someone can give her a good 15 years or so with her myo and then - who knows what the future will be? BTW - the ectomy is not the hugely major surgery it was even just 10 years ago but it's still MUCH more major than a myo. > > I am wondering what the groups thoughts are on Taniea having an ectomy. I have >been reading and some seem to act to like it an ectomy gave them better results >then the myotomy. With surgery being a possible treatment plan I was thinking >it may be easier to just get an ectomy? I don't know if its even an option. I >also wondering what the pro's and con's are of having an ectomy. What is >dumping, ect? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Thank you , it is great to hear that you are doing well after such a bout with Achalasia. It is really great to know that there is at least some doctors looking for better options of treatment. Taniea has one myotomy already and three total dilations and her doctors at the moment are saying that they would really like to not do more dilations. She also had her birthmark removed which turned into a keloid(?) and so the scarring is probably the issue with that. Thank you Shamira ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Wed, February 23, 2011 8:14:05 PM Subject: Re: Taniea I have written about my story before, I have had A for 30 yrs since the age of 14, I'm now 46. I have had 8 dilations in the beginning, two Myotomy and after many, many years of reflux, pain and lack of sleep and any kind of life, it was time for me to have a ectomy, which I did in early Dec. It has been 3 months and I have NEVER FELT better. I'm sleeping through the night with no pain, I have no dumping, I know when I'm full so I don't stuff myself. It took me a long time to wrap my mind around it but in the end I should have done it long ago. I can only say that I'm enjoying foods that I could have never enjoyed before. I take no meds for reflux. The only con that I have is a little sticking, which I have had a dilation and seems better. With her age I would start off with the myotomy, and hopefully it will last her a good long time. My first one lasted 15years. Medicine is getting better and better, I have seen that with having this for a long time.with this condition. Some day they might be able to replace the E with a working one. My Doc, in LA is working on that in her lab. It is so hard to know what to do for someone so young. I would start off with the myotomy and see.The ectomy for me has only been positive as a long term solution. I'll be thinking of her, I know how she feels from LA ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 2:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 How old is your daughter? Does she take meds for reflux on a daily bases? All the dilations that they did on me just resulted in more scare tissue, and never really helped. My size of my E was so large it was on my heart so it was time to let my E go. I do feel great however and wouldn't rule it out. ________________________________ From: Shamira <shareedanieal@...> achalasia Sent: Thu, February 24, 2011 7:44:38 AM Subject: Re: Taniea Thank you , it is great to hear that you are doing well after such a bout with Achalasia. It is really great to know that there is at least some doctors looking for better options of treatment. Taniea has one myotomy already and three total dilations and her doctors at the moment are saying that they would really like to not do more dilations. She also had her birthmark removed which turned into a keloid(?) and so the scarring is probably the issue with that. Thank you Shamira ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Wed, February 23, 2011 8:14:05 PM Subject: Re: Taniea I have written about my story before, I have had A for 30 yrs since the age of 14, I'm now 46. I have had 8 dilations in the beginning, two Myotomy and after many, many years of reflux, pain and lack of sleep and any kind of life, it was time for me to have a ectomy, which I did in early Dec. It has been 3 months and I have NEVER FELT better. I'm sleeping through the night with no pain, I have no dumping, I know when I'm full so I don't stuff myself. It took me a long time to wrap my mind around it but in the end I should have done it long ago. I can only say that I'm enjoying foods that I could have never enjoyed before. I take no meds for reflux. The only con that I have is a little sticking, which I have had a dilation and seems better. With her age I would start off with the myotomy, and hopefully it will last her a good long time. My first one lasted 15years. Medicine is getting better and better, I have seen that with having this for a long time.with this condition. Some day they might be able to replace the E with a working one. My Doc, in LA is working on that in her lab. It is so hard to know what to do for someone so young. I would start off with the myotomy and see.The ectomy for me has only been positive as a long term solution. I'll be thinking of her, I know how she feels from LA ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 2:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Taniea is 12, ans yes she takes Prilosec two times a day. Currently she is taking it in capsules but she has to take it out and sprinkle it in food. Which she loves because she gets sherbet, icing, or yogurt twice a day. ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Thu, February 24, 2011 11:31:05 AM Subject: Re: Taniea How old is your daughter? Does she take meds for reflux on a daily bases? All the dilations that they did on me just resulted in more scare tissue, and never really helped. My size of my E was so large it was on my heart so it was time to let my E go. I do feel great however and wouldn't rule it out. ________________________________ From: Shamira <shareedanieal@...> achalasia Sent: Thu, February 24, 2011 7:44:38 AM Subject: Re: Taniea Thank you , it is great to hear that you are doing well after such a bout with Achalasia. It is really great to know that there is at least some doctors looking for better options of treatment. Taniea has one myotomy already and three total dilations and her doctors at the moment are saying that they would really like to not do more dilations. She also had her birthmark removed which turned into a keloid(?) and so the scarring is probably the issue with that. Thank you Shamira ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Wed, February 23, 2011 8:14:05 PM Subject: Re: Taniea I have written about my story before, I have had A for 30 yrs since the age of 14, I'm now 46. I have had 8 dilations in the beginning, two Myotomy and after many, many years of reflux, pain and lack of sleep and any kind of life, it was time for me to have a ectomy, which I did in early Dec. It has been 3 months and I have NEVER FELT better. I'm sleeping through the night with no pain, I have no dumping, I know when I'm full so I don't stuff myself. It took me a long time to wrap my mind around it but in the end I should have done it long ago. I can only say that I'm enjoying foods that I could have never enjoyed before. I take no meds for reflux. The only con that I have is a little sticking, which I have had a dilation and seems better. With her age I would start off with the myotomy, and hopefully it will last her a good long time. My first one lasted 15years. Medicine is getting better and better, I have seen that with having this for a long time.with this condition. Some day they might be able to replace the E with a working one. My Doc, in LA is working on that in her lab. It is so hard to know what to do for someone so young. I would start off with the myotomy and see.The ectomy for me has only been positive as a long term solution. I'll be thinking of her, I know how she feels from LA ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 2:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 She is very young, like I was. I hope all is well with her and maybe consult with another doc. ________________________________ From: Shamira <shareedanieal@...> achalasia Sent: Thu, February 24, 2011 9:40:37 AM Subject: Re: Taniea Taniea is 12, ans yes she takes Prilosec two times a day. Currently she is taking it in capsules but she has to take it out and sprinkle it in food. Which she loves because she gets sherbet, icing, or yogurt twice a day. ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Thu, February 24, 2011 11:31:05 AM Subject: Re: Taniea How old is your daughter? Does she take meds for reflux on a daily bases? All the dilations that they did on me just resulted in more scare tissue, and never really helped. My size of my E was so large it was on my heart so it was time to let my E go. I do feel great however and wouldn't rule it out. ________________________________ From: Shamira <shareedanieal@...> achalasia Sent: Thu, February 24, 2011 7:44:38 AM Subject: Re: Taniea Thank you , it is great to hear that you are doing well after such a bout with Achalasia. It is really great to know that there is at least some doctors looking for better options of treatment. Taniea has one myotomy already and three total dilations and her doctors at the moment are saying that they would really like to not do more dilations. She also had her birthmark removed which turned into a keloid(?) and so the scarring is probably the issue with that. Thank you Shamira ________________________________ From: Cullinan <andreacullinan1@...> achalasia Sent: Wed, February 23, 2011 8:14:05 PM Subject: Re: Taniea I have written about my story before, I have had A for 30 yrs since the age of 14, I'm now 46. I have had 8 dilations in the beginning, two Myotomy and after many, many years of reflux, pain and lack of sleep and any kind of life, it was time for me to have a ectomy, which I did in early Dec. It has been 3 months and I have NEVER FELT better. I'm sleeping through the night with no pain, I have no dumping, I know when I'm full so I don't stuff myself. It took me a long time to wrap my mind around it but in the end I should have done it long ago. I can only say that I'm enjoying foods that I could have never enjoyed before. I take no meds for reflux. The only con that I have is a little sticking, which I have had a dilation and seems better. With her age I would start off with the myotomy, and hopefully it will last her a good long time. My first one lasted 15years. Medicine is getting better and better, I have seen that with having this for a long time.with this condition. Some day they might be able to replace the E with a working one. My Doc, in LA is working on that in her lab. It is so hard to know what to do for someone so young. I would start off with the myotomy and see.The ectomy for me has only been positive as a long term solution. I'll be thinking of her, I know how she feels from LA ________________________________ From: shareedanieal <shareedanieal@...> achalasia Sent: Wed, February 23, 2011 2:22:01 PM Subject: Taniea I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Hi, my name's Becca. I am seventeen years old now and I was diagnosed when I was 8 years old. I had a laproscopic Hellers Myotomy with a partial fundo when I was 8, as well. Honestly I believe this was the best method of treatment I could have gotten for my age. I live a pretty much normal lifestyle. Now there are two draw backs, but honestly I think they are worth the hassle if it means keeping my intestines away from my throat and mouth. One of the two major side effects of the Myotomy are esophogeal spasms, which pretty much feel like a heart attack and can be debilitating. Though they do happen infrequently, there is no sure trigger or cause for these awful things. The other side effect is dumping syndrome. I have found that this has become a lot less severe as I have grown older. Dumping syndrome is pretty much when you eat too much food or eat food too fast it all falls through your esophagus too quickly, hits the bottom of your stomach, and rushes through the intestines causing diarrhea. Lactose is a big trigger for this so I try to avoid dairy products now, although I admit I do cheat. Back to the Ectonomy. I highly doubt this will even be an option for you. When my parents were trying to find someone to do a Myotomy on me, there was not one doctor in the entire state who would come within 10 miles of me with a scalpel, and that was a minor surgery when compared to an Ectonomy. We were lucky to find one in LA who was willing to do the procedure. I suggest you do the Myotomy first, and if needed she can get an Ectonomy when she is older. Especially when she is so frail and ill. Her body will have to adapt to what is essentially a new organ. I have talked to Taniea on facebook. She seems like a sweet girl. Please keep me posted with how everything is going. I will try to offer her all the support that I can. I know what growing up with Achalasia is like so if you have any question, I will try to answer them to the best of my ability. You can email me at: greeneyedgirl247@... Please keep me posted. > > I am wondering what the groups thoughts are on Taniea having an ectomy. I have been reading and some seem to act to like it an ectomy gave them better results then the myotomy. With surgery being a possible treatment plan I was thinking it may be easier to just get an ectomy? I don't know if its even an option. I also wondering what the pro's and con's are of having an ectomy. What is dumping, ect? > Quote Link to comment Share on other sites More sharing options...
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