Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 Hi Shamira, thanks for asking but would like to let you know they did the esophagectomy Davinci assisted with fun-d yesterday but later today she had some problems after they did the barium swallow, what ever the liquid they gave to her did go smoothly (went slow), they are keeping an eye on and will redo it again. they said it can happen but so far so good she is doing good. Hope Tania is doing good. Take care. ________________________________ From: Shamira Molina <shareedanieal@...> " achalasia " <achalasia > Sent: Tue, March 1, 2011 2:13:27 PM Subject: Fe bussa? How is your daughter doing? Sent from my iPhone On Feb 24, 2011, at 6:28 PM, fe busse <bil45ohb@...> wrote: To Samira, I agree with Carolyn your daughter is so young to go to ectomy. Please go a real specialist who really nows more about ACHALASIA. Let me know which part of Oklahoma do you reside and I will ask some GI docs here at Univ of Mich if they can recommend some docs... I've her from some people sometimes if the 1st myotomy surg wasn't successful, they have to redo the surg again... PLEASE ask for 2nd or 3rd opinion. Ask your insurance if they will pay for 2nd opinion.. Good luck ! I know it is hard for a mom to see their child suffering, i am feeling the same. My daughter will have her myetomy surg this monday and I am so nervous. All I do is pray to make me strong bcoz my daughter needs me.. ________________________________ From: Carolyn <wooleeacre@...> achalasia Sent: Thu, February 24, 2011 1:39:02 PM Subject: Taniea/ Shimira-MOM's, Notan.. weigh in! Hi Shamira, I will apologize to start for my harshness... But.... ABSOLUTELY NOT! NO ECTOMY!!! ok it is out.. I would rather it said I am out of line, than to suggest again.. get to the best.. I know she is in pain, and having problems swallowing.. but.... Like I have mentioned to you before, first you need to get her to a top notch specialist.. she needs to be assessed first, by a super qualified Experienced Achalasia Specialist. Scoped- looked at what is happening at the juncture. What ever has been done... is done.. Moving forward... Ectomies are not done frivolously. They are last result. ( of no offense to anyone here who has had or considering one) She is but a young child, not yet to puberty, and no matter what- she needs the best care that can be given. I hope you have had the opportunity to contact the specialists I sent you. Dr Patti recommended Pellegrini to you too.. I am sure he will talk to you.. , Tia's mom also will give you good insight here. Your doctor intimated that he may have made too small of an incision, therefore, you need to actively be researching " the cut " and talking and looking for a good, scratch that... a GREAT peds specialist. IF YOU ARE NOT GIFTED TO BE A BULL DOG .. Find a friend or family member who is.. and fight.. for everything.. Do you need travel money? It is ever so presumptuous of me to ask... but can this group help? Everything we do for Achalasia is forever, there is no going back .. so with great trepidation, every one takes baby steps... with good reason. ... Please only consider or entertain an " ectomy " if the best of the best say it is neccessary for her " quality of life " ... She is but a child, with a long road to go. Carolyn mom of Cameron.. myo'd and fundo'd '05 I wrote " who knew the delicate nature and the importance of " the CUT " .. it is everything... It is everything... Perhaps no one says that too much on the group site, but the length and position of the myotomy (the cutting of the sphincter) is everything. How many children has this guy done? Her peristaltic motion of the esophagus is gone, it was gone before the myotomy and it was really gone after, so what is the point of the torture of the manometry? She needs to have an endoscopy right away to see if she has an ulcers forming, scar tissue growing, and constrictures going on, and maybe a biopsy!!!! that is the starting point. then a barium swallow. Ask the group, talk to Notan but I just think she is a little girl and not to subject her to any more needless tests by ninnies who don't have all the answers. It is 800 miles from you to Chicago.. 16 hours driving.. or .... Here are the Dr. at Baylor in Houston... BRUNO CHUMPITAZI, M.D., M.P.H. chumpita@... Assistant Professor Department of Pediatrics-Gastroenterology, Hepatology and Nutrition Baylor College of Medicine Director of Neurogastroenterology and Motility Center Texas Children's Hospital Kansas City - Children's Mercy Hosp Holcomb, MD Administrative Assistant: Jeannette Whitney, (jwhitney@...), 816-234-7002 http://childrensmercy.org/content/view.aspx?id=9482 ***BE Sure to read the authors of this article and the article. You will see Dr. Patti co Authored this with some of the folks from Kansas. and Dr. Way. The article is very good. " http://www.childrensmercy.org/Content/UploadedFiles/lap.pdf If you need some other close contacts let me know.. I will find them... http://www.childrensmercy.org/Content/UploadedFiles/lap.pdfwww.childrensmercy.or\ g> 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 March 1, 2011 Report Share Posted March 1, 2011 esophagectomy? Â I don't remember much about your daughters situation, but wasn't she just diagnosed and just going in for a myotomy?? kim in canada To Samira, I agree with Carolyn your daughter is so young to go to ectomy. Please go a real specialist who really nows more about ACHALASIA. Let me know which part of Oklahoma do you reside and I will ask some GI docs here at Univ of Mich if they can recommend some docs... I've her from some people sometimes if the 1st myotomy surg wasn't successful, they have to redo the surg again... PLEASE ask for 2nd or 3rd opinion. Ask your insurance if they will pay for 2nd opinion.. Good luck ! I know it is hard for a mom to see their child suffering, i am feeling the same. My daughter will have her myetomy surg this monday and I am so nervous. All I do is pray to make me strong bcoz my daughter needs me.. ________________________________ From: Carolyn <wooleeacre@...> achalasia Sent: Thu, February 24, 2011 1:39:02 PM Subject: Taniea/ Shimira-MOM's, Notan.. weigh in! Hi Shamira, I will apologize to start for my harshness... But.... ABSOLUTELY NOT! NO ECTOMY!!! ok it is out.. I would rather it said I am out of line, than to suggest again.. get to the best.. I know she is in pain, and having problems swallowing.. but.... Like I have mentioned to you before, first you need to get her to a top notch specialist.. she needs to be assessed first, by a super qualified Experienced Achalasia Specialist. Scoped- looked at what is happening at the juncture. What ever has been done... is done.. Moving forward... Ectomies are not done frivolously. They are last result. ( of no offense to anyone here who has had or considering one) She is but a young child, not yet to puberty, and no matter what- she needs the best care that can be given. I hope you have had the opportunity to contact the specialists I sent you. Dr Patti recommended Pellegrini to you too.. I am sure he will talk to you.. , Tia's mom also will give you good insight here. Your doctor intimated that he may have made too small of an incision, therefore, you need to actively be researching " the cut " and talking and looking for a good, scratch that... a GREAT peds specialist. IF YOU ARE NOT GIFTED TO BE A BULL DOG .. Find a friend or family member who is.. and fight.. for everything.. Do you need travel money? It is ever so presumptuous of me to ask... but can this group help? Everything we do for Achalasia is forever, there is no going back .. so with great trepidation, every one takes baby steps... with good reason. ... Please only consider or entertain an " ectomy " if the best of the best say it is neccessary for her " quality of life " ... She is but a child, with a long road to go. Carolyn mom of Cameron.. myo'd and fundo'd '05 I wrote " who knew the delicate nature and the importance of " the CUT " .. it is everything... It is everything... Perhaps no one says that too much on the group site, but the length and position of the myotomy (the cutting of the sphincter) is everything. How many children has this guy done? Her peristaltic motion of the esophagus is gone, it was gone before the myotomy and it was really gone after, so what is the point of the torture of the manometry? She needs to have an endoscopy right away to see if she has an ulcers forming, scar tissue growing, and constrictures going on, and maybe a biopsy!!!! that is the starting point. then a barium swallow. Ask the group, talk to Notan but I just think she is a little girl and not to subject her to any more needless tests by ninnies who don't have all the answers. It is 800 miles from you to Chicago.. 16 hours driving.. or .... Here are the Dr. at Baylor in Houston... BRUNO CHUMPITAZI, M.D., M.P.H. chumpita@... Assistant Professor Department of Pediatrics-Gastroenterology, Hepatology and Nutrition Baylor College of Medicine Director of Neurogastroenterology and Motility Center Texas Children's Hospital Kansas City - Children's Mercy Hosp Holcomb, MD Administrative Assistant: Jeannette Whitney, (jwhitney@...), 816-234-7002 http://childrensmercy.org/content/view.aspx?id=9482 ***BE Sure to read the authors of this article and the article. You will see Dr. Patti co Authored this with some of the folks from Kansas. and Dr. Way. The article is very good. " http://www.childrensmercy.org/Content/UploadedFiles/lap.pdf If you need some other close contacts let me know.. I will find them... http://www.childrensmercy.org/Content/UploadedFiles/lap.pdfwww.childrensmercy.or\ g> 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 March 1, 2011 Report Share Posted March 1, 2011 On 3/1/2011 2:46 PM, fe busse wrote: > Hi Shamira, thanks for asking but would like to let you know they did the > esophagectomy Davinci assisted with fun-d yesterday I am sure you meant myotomy with fun-d not esophagectomy. > but later today she had some problems Sometimes it takes a while for swelling to go down and the body has a chance to adjust. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 Ooops sorry it wa MYOTOMY ... ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Tue, March 1, 2011 5:01:47 PM Subject: Re: Fe bussa? Â On 3/1/2011 2:46 PM, fe busse wrote: > Hi Shamira, thanks for asking but would like to let you know they did the > esophagectomy Davinci assisted with fun-d yesterday I am sure you meant myotomy with fun-d not esophagectomy. > but later today she had some problems Sometimes it takes a while for swelling to go down and the body has a chance to adjust. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 Sorry Kim, it is myotomy and yes she was just diagnosed last Jan 7th. And actually in 2009 I toold her to her pcp bcoz she was having chest pain when eating and doc told her she is just having something like charlie horse around her heart muscle and that chest x-ray is normal...Then just last November 2010, I overheard her telling her cousin that she is throwing up after eating and still have chest pain. I called my insurance to changed pcp and from there the new pcp told her that she needs endoscopy then in Jan 7 they did the barium swallow and that is the start of acahlasia.. I is A from hell. HORRIBLE... I hope this surgery help her/ ________________________________ From: Kim <kimmydawn42@...> achalasia Sent: Tue, March 1, 2011 5:00:23 PM Subject: Re: Fe bussa? Â esophagectomy? Â I don't remember much about your daughters situation, but wasn't she just diagnosed and just going in for a myotomy?? kim in canada To Samira, I agree with Carolyn your daughter is so young to go to ectomy. Please go a real specialist who really nows more about ACHALASIA. Let me know which part of Oklahoma do you reside and I will ask some GI docs here at Univ of Mich if they can recommend some docs... I've her from some people sometimes if the 1st myotomy surg wasn't successful, they have to redo the surg again... PLEASE ask for 2nd or 3rd opinion. Ask your insurance if they will pay for 2nd opinion.. Good luck ! I know it is hard for a mom to see their child suffering, i am feeling the same. My daughter will have her myetomy surg this monday and I am so nervous. All I do is pray to make me strong bcoz my daughter needs me.. ________________________________ From: Carolyn <wooleeacre@...> achalasia Sent: Thu, February 24, 2011 1:39:02 PM Subject: Taniea/ Shimira-MOM's, Notan.. weigh in! Hi Shamira, I will apologize to start for my harshness... But.... ABSOLUTELY NOT! NO ECTOMY!!! ok it is out.. I would rather it said I am out of line, than to suggest again.. get to the best.. I know she is in pain, and having problems swallowing.. but.... Like I have mentioned to you before, first you need to get her to a top notch specialist.. she needs to be assessed first, by a super qualified Experienced Achalasia Specialist. Scoped- looked at what is happening at the juncture. What ever has been done... is done.. Moving forward... Ectomies are not done frivolously. They are last result. ( of no offense to anyone here who has had or considering one) She is but a young child, not yet to puberty, and no matter what- she needs the best care that can be given. I hope you have had the opportunity to contact the specialists I sent you. Dr Patti recommended Pellegrini to you too.. I am sure he will talk to you.. , Tia's mom also will give you good insight here. Your doctor intimated that he may have made too small of an incision, therefore, you need to actively be researching " the cut " and talking and looking for a good, scratch that... a GREAT peds specialist. IF YOU ARE NOT GIFTED TO BE A BULL DOG .. Find a friend or family member who is.. and fight.. for everything.. Do you need travel money? It is ever so presumptuous of me to ask... but can this group help? Everything we do for Achalasia is forever, there is no going back .. so with great trepidation, every one takes baby steps... with good reason. ... Please only consider or entertain an " ectomy " if the best of the best say it is neccessary for her " quality of life " ... She is but a child, with a long road to go. Carolyn mom of Cameron.. myo'd and fundo'd '05 I wrote " who knew the delicate nature and the importance of " the CUT " .. it is everything... It is everything... Perhaps no one says that too much on the group site, but the length and position of the myotomy (the cutting of the sphincter) is everything. How many children has this guy done? Her peristaltic motion of the esophagus is gone, it was gone before the myotomy and it was really gone after, so what is the point of the torture of the manometry? She needs to have an endoscopy right away to see if she has an ulcers forming, scar tissue growing, and constrictures going on, and maybe a biopsy!!!! that is the starting point. then a barium swallow. Ask the group, talk to Notan but I just think she is a little girl and not to subject her to any more needless tests by ninnies who don't have all the answers. It is 800 miles from you to Chicago.. 16 hours driving.. or .... Here are the Dr. at Baylor in Houston... BRUNO CHUMPITAZI, M.D., M.P.H. chumpita@... Assistant Professor Department of Pediatrics-Gastroenterology, Hepatology and Nutrition Baylor College of Medicine Director of Neurogastroenterology and Motility Center Texas Children's Hospital Kansas City - Children's Mercy Hosp Holcomb, MD Administrative Assistant: Jeannette Whitney, (jwhitney@...), 816-234-7002 http://childrensmercy.org/content/view.aspx?id=9482 ***BE Sure to read the authors of this article and the article. You will see Dr. Patti co Authored this with some of the folks from Kansas. and Dr. Way. The article is very good. " http://www.childrensmercy.org/Content/UploadedFiles/lap.pdf If you need some other close contacts let me know.. I will find them... http://www.childrensmercy.org/Content/UploadedFiles/lap.pdfwww.childrensmercy.or\ g> 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...
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