nissen surgery

[palinsyaya]

my grandsons dr told us he needs the nissen surgery and a gtube said his reflux is bad enough for surgery. my grandson weight is 22 pounds @14 months old , he doesnt throw up his food or spitup i was wondering if cfers grow out of reflux or gets worse with age? if anyone has had the surgery some feedback would help

 

[palinsyaya]

my grandsons dr told us he needs the nissen surgery and a gtube said his reflux is bad enough for surgery. my grandson weight is 22 pounds @14 months old , he doesnt throw up his food or spitup i was wondering if cfers grow out of reflux or gets worse with age? if anyone has had the surgery some feedback would help

 

[palinsyaya]

my grandsons dr told us he needs the nissen surgery and a gtube said his reflux is bad enough for surgery. my grandson weight is 22 pounds @14 months old , he doesnt throw up his food or spitup i was wondering if cfers grow out of reflux or gets worse with age? if anyone has had the surgery some feedback would help

 

[Mommafirst]

I know there are several people on here who have had the surgery. It can be a huge help, but it is a pretty big deal surgery that permanently changes the child's anatomy.

I don't think CF reflux issues tend to clear up with age, as it has to do with the way the pancreas and digestive system function.

Good luck with making your decision. This is a difficult decision, I hope that whatever you decide it helps your grandson.

 

[Mommafirst]

I know there are several people on here who have had the surgery. It can be a huge help, but it is a pretty big deal surgery that permanently changes the child's anatomy.

I don't think CF reflux issues tend to clear up with age, as it has to do with the way the pancreas and digestive system function.

Good luck with making your decision. This is a difficult decision, I hope that whatever you decide it helps your grandson.

 

[Mommafirst]

I know there are several people on here who have had the surgery. It can be a huge help, but it is a pretty big deal surgery that permanently changes the child's anatomy.
<br />
<br />I don't think CF reflux issues tend to clear up with age, as it has to do with the way the pancreas and digestive system function.
<br />
<br />Good luck with making your decision. This is a difficult decision, I hope that whatever you decide it helps your grandson.

 

[sdelorenzo]

My daughter had the surgery when she was five. She was scheduled for the g-tube when her gi dr asked me if she had any reflux symptoms. I said no. Turns out through testing that she had one of the most severe cases of reflux her Gi dr had seen. I was very worried about the surgery. I read way too much on the Internet. My daughter has had zero problems since she got it. Two days after her g-tube and Nissan surgery she was dismissed from the hospital. She asked that day if she could jump on the trampoline. My daughter also has had a cat scan of her lungs. It showed lots of damage. We think that aspirating at night might have played a big role during those years we didn't know about her reflux.
Sharon, mom of Sophia, 9, and Jack, age 6 both with cf, Grant 18 months no cf

 

[sdelorenzo]

My daughter had the surgery when she was five. She was scheduled for the g-tube when her gi dr asked me if she had any reflux symptoms. I said no. Turns out through testing that she had one of the most severe cases of reflux her Gi dr had seen. I was very worried about the surgery. I read way too much on the Internet. My daughter has had zero problems since she got it. Two days after her g-tube and Nissan surgery she was dismissed from the hospital. She asked that day if she could jump on the trampoline. My daughter also has had a cat scan of her lungs. It showed lots of damage. We think that aspirating at night might have played a big role during those years we didn't know about her reflux.
Sharon, mom of Sophia, 9, and Jack, age 6 both with cf, Grant 18 months no cf

 

[sdelorenzo]

My daughter had the surgery when she was five. She was scheduled for the g-tube when her gi dr asked me if she had any reflux symptoms. I said no. Turns out through testing that she had one of the most severe cases of reflux her Gi dr had seen. I was very worried about the surgery. I read way too much on the Internet. My daughter has had zero problems since she got it. Two days after her g-tube and Nissan surgery she was dismissed from the hospital. She asked that day if she could jump on the trampoline. My daughter also has had a cat scan of her lungs. It showed lots of damage. We think that aspirating at night might have played a big role during those years we didn't know about her reflux.
<br />Sharon, mom of Sophia, 9, and Jack, age 6 both with cf, Grant 18 months no cf

 

[crickit715]

my daughter had both the nissen and gtube surgeries and they made an astounding difference in her quality of life...of course she was throwing up at every meal and i couldnt even lay her flat to change her diaper or she would start aspirating! the only thing about the nissen i dont like is that she cannot throw up if she is sick now and that has to be a horrible feeling for her. but it was worth it because of her severe reflux. the nissen can loosen over time also. i dont know if i would have been willing to have the nissen procedure if my daughter wasnt having such bad reflux. the gtube has been a life saver!!! i struggled with that decision but ultimatley i am so glad i did it! some children can definatley grow out of reflux and he doesnt seem to have "that bad" of a case of it....wondering what makes them think the nissen is necessary???

 

[crickit715]

my daughter had both the nissen and gtube surgeries and they made an astounding difference in her quality of life...of course she was throwing up at every meal and i couldnt even lay her flat to change her diaper or she would start aspirating! the only thing about the nissen i dont like is that she cannot throw up if she is sick now and that has to be a horrible feeling for her. but it was worth it because of her severe reflux. the nissen can loosen over time also. i dont know if i would have been willing to have the nissen procedure if my daughter wasnt having such bad reflux. the gtube has been a life saver!!! i struggled with that decision but ultimatley i am so glad i did it! some children can definatley grow out of reflux and he doesnt seem to have "that bad" of a case of it....wondering what makes them think the nissen is necessary???

 

[crickit715]

my daughter had both the nissen and gtube surgeries and they made an astounding difference in her quality of life...of course she was throwing up at every meal and i couldnt even lay her flat to change her diaper or she would start aspirating! the only thing about the nissen i dont like is that she cannot throw up if she is sick now and that has to be a horrible feeling for her. but it was worth it because of her severe reflux. the nissen can loosen over time also. i dont know if i would have been willing to have the nissen procedure if my daughter wasnt having such bad reflux. the gtube has been a life saver!!! i struggled with that decision but ultimatley i am so glad i did it! some children can definatley grow out of reflux and he doesnt seem to have "that bad" of a case of it....wondering what makes them think the nissen is necessary???

 

[palinsyaya]

the test they did showed his reflux had alter his vocal cords, he also gags himself the dr said acid is on the back of his throat.

 

[palinsyaya]

the test they did showed his reflux had alter his vocal cords, he also gags himself the dr said acid is on the back of his throat.

 

[palinsyaya]

the test they did showed his reflux had alter his vocal cords, he also gags himself the dr said acid is on the back of his throat.

 

[MaryamsMommy]

Wow.. I dont want to scare you here. And trust me for most the Nissen/Fundoplication actually is wonderful and they have great results... But there are risks and complications and it is not 100% a certin % of the surgeries fail and can fail/slip over and over. My daughter now 10 had her first nissen when she was 3 g-tube was also placed then. She weighed only 23 pounds and thats at 3 years old. Well things went good for about 1 1/2 years when she just stoped eating by mouth and would reflux so bad she would choke on it. went again through all the testing showed severe reflux again and doctors recommended another nissen. first time was laperscopic a few tiny 1/2 inch cuts. Second because of scar tissue had to be open so she was cut right down the middle from chest to belly button. All went ok. Only for 6 months later her to wake up out of her sleep vomitting her night feeds.. Yep you got it it slipped again now she was on her 3rd nissen doctors said her reflux at that point was so bad she had refluxed more then 200 times in an 24 hours longest episode lasting 56 min.. Keep in mind she had a hiatial hernia with the first 2. The first 2 nissens we had one surgeon do it and the 3rd and the 3rd ones we asked for new hands.. She re did her 3rd nissen put titanium mesh in to close the herniated area. Things went well for about another 6 months where anytime you put anything in her stomach she would screem in pain. It hurt her so bad they decided to put a J tube in and bypass the stomach all together which created a whole set of other issues including bile reflux into the stomach which caused even more pain. At that time she went into the hospital it was Mid october. They did all the gi work up which again showed a slipped nissen severe reflux. It had gotten to the point that going in again would be to risky and we spent forever in the hospital without her using her stomach on TPN and Lipids for nutrition trying to get a sergeon to fix her. They said to send her home and keep her on IV nutrition forever or maybe gastric bypass would help. Well finally the last doctor who did her 3rd decided to give it one more try. Went in re did it but another mesh and said she needs time to heal.. That ment 9 months at home not using her stomach only IV nutrition so that it could form a good scar and maybe hold up this time. After 9 months my daughter was able to eat again.. She was 7 years old. She only ate a little but was able to tollerate all her gtube feeds which was the goal. When she had her 3rd nissen done she also had a pyloraplasty they opened the pyloras more to help the stomach move things into the small intestine. She also had severe delayed gastric emptying. Well last year my daughter started choking again. It started comming up is what she calls it. Well she has had all the testing done and guess what Endoscopy showed her fundo slipped and PH shows reflux.. NO ONE WILL OR COULD TOUCH HER! We are left with few options. Gastric emptying is still severe and there has been talk of a gastric pacemaker. Her stomach is damaged. She eats very little by mouth and goes through times we cant even feed her by tube. Yes Nissens work for most.. But not all. They say its probably the pressure from all her couching that pops them open. She has CF she coughs alot we cant change that. I would make sure all the testing is done before you decide on the nissen or not. gastric emptying upper GI PH probe and endoscopy. Can reflux go away..YES.. But getting a gtube placed even with a typical non CF kid can increase reflux. Also have you tried all the medications and had your childs reflux checked while on meds? My daughter only has her tests done on meds now because they want to see how its helping and everything is still always severe. I wish you luck in deciding this.. I just thought you should know there are cons... Not every one has a happy nissen ending..

Karen

 

[MaryamsMommy]

Wow.. I dont want to scare you here. And trust me for most the Nissen/Fundoplication actually is wonderful and they have great results... But there are risks and complications and it is not 100% a certin % of the surgeries fail and can fail/slip over and over. My daughter now 10 had her first nissen when she was 3 g-tube was also placed then. She weighed only 23 pounds and thats at 3 years old. Well things went good for about 1 1/2 years when she just stoped eating by mouth and would reflux so bad she would choke on it. went again through all the testing showed severe reflux again and doctors recommended another nissen. first time was laperscopic a few tiny 1/2 inch cuts. Second because of scar tissue had to be open so she was cut right down the middle from chest to belly button. All went ok. Only for 6 months later her to wake up out of her sleep vomitting her night feeds.. Yep you got it it slipped again now she was on her 3rd nissen doctors said her reflux at that point was so bad she had refluxed more then 200 times in an 24 hours longest episode lasting 56 min.. Keep in mind she had a hiatial hernia with the first 2. The first 2 nissens we had one surgeon do it and the 3rd and the 3rd ones we asked for new hands.. She re did her 3rd nissen put titanium mesh in to close the herniated area. Things went well for about another 6 months where anytime you put anything in her stomach she would screem in pain. It hurt her so bad they decided to put a J tube in and bypass the stomach all together which created a whole set of other issues including bile reflux into the stomach which caused even more pain. At that time she went into the hospital it was Mid october. They did all the gi work up which again showed a slipped nissen severe reflux. It had gotten to the point that going in again would be to risky and we spent forever in the hospital without her using her stomach on TPN and Lipids for nutrition trying to get a sergeon to fix her. They said to send her home and keep her on IV nutrition forever or maybe gastric bypass would help. Well finally the last doctor who did her 3rd decided to give it one more try. Went in re did it but another mesh and said she needs time to heal.. That ment 9 months at home not using her stomach only IV nutrition so that it could form a good scar and maybe hold up this time. After 9 months my daughter was able to eat again.. She was 7 years old. She only ate a little but was able to tollerate all her gtube feeds which was the goal. When she had her 3rd nissen done she also had a pyloraplasty they opened the pyloras more to help the stomach move things into the small intestine. She also had severe delayed gastric emptying. Well last year my daughter started choking again. It started comming up is what she calls it. Well she has had all the testing done and guess what Endoscopy showed her fundo slipped and PH shows reflux.. NO ONE WILL OR COULD TOUCH HER! We are left with few options. Gastric emptying is still severe and there has been talk of a gastric pacemaker. Her stomach is damaged. She eats very little by mouth and goes through times we cant even feed her by tube. Yes Nissens work for most.. But not all. They say its probably the pressure from all her couching that pops them open. She has CF she coughs alot we cant change that. I would make sure all the testing is done before you decide on the nissen or not. gastric emptying upper GI PH probe and endoscopy. Can reflux go away..YES.. But getting a gtube placed even with a typical non CF kid can increase reflux. Also have you tried all the medications and had your childs reflux checked while on meds? My daughter only has her tests done on meds now because they want to see how its helping and everything is still always severe. I wish you luck in deciding this.. I just thought you should know there are cons... Not every one has a happy nissen ending..

Karen

 

[MaryamsMommy]

Wow.. I dont want to scare you here. And trust me for most the Nissen/Fundoplication actually is wonderful and they have great results... But there are risks and complications and it is not 100% a certin % of the surgeries fail and can fail/slip over and over. My daughter now 10 had her first nissen when she was 3 g-tube was also placed then. She weighed only 23 pounds and thats at 3 years old. Well things went good for about 1 1/2 years when she just stoped eating by mouth and would reflux so bad she would choke on it. went again through all the testing showed severe reflux again and doctors recommended another nissen. first time was laperscopic a few tiny 1/2 inch cuts. Second because of scar tissue had to be open so she was cut right down the middle from chest to belly button. All went ok. Only for 6 months later her to wake up out of her sleep vomitting her night feeds.. Yep you got it it slipped again now she was on her 3rd nissen doctors said her reflux at that point was so bad she had refluxed more then 200 times in an 24 hours longest episode lasting 56 min.. Keep in mind she had a hiatial hernia with the first 2. The first 2 nissens we had one surgeon do it and the 3rd and the 3rd ones we asked for new hands.. She re did her 3rd nissen put titanium mesh in to close the herniated area. Things went well for about another 6 months where anytime you put anything in her stomach she would screem in pain. It hurt her so bad they decided to put a J tube in and bypass the stomach all together which created a whole set of other issues including bile reflux into the stomach which caused even more pain. At that time she went into the hospital it was Mid october. They did all the gi work up which again showed a slipped nissen severe reflux. It had gotten to the point that going in again would be to risky and we spent forever in the hospital without her using her stomach on TPN and Lipids for nutrition trying to get a sergeon to fix her. They said to send her home and keep her on IV nutrition forever or maybe gastric bypass would help. Well finally the last doctor who did her 3rd decided to give it one more try. Went in re did it but another mesh and said she needs time to heal.. That ment 9 months at home not using her stomach only IV nutrition so that it could form a good scar and maybe hold up this time. After 9 months my daughter was able to eat again.. She was 7 years old. She only ate a little but was able to tollerate all her gtube feeds which was the goal. When she had her 3rd nissen done she also had a pyloraplasty they opened the pyloras more to help the stomach move things into the small intestine. She also had severe delayed gastric emptying. Well last year my daughter started choking again. It started comming up is what she calls it. Well she has had all the testing done and guess what Endoscopy showed her fundo slipped and PH shows reflux.. NO ONE WILL OR COULD TOUCH HER! We are left with few options. Gastric emptying is still severe and there has been talk of a gastric pacemaker. Her stomach is damaged. She eats very little by mouth and goes through times we cant even feed her by tube. Yes Nissens work for most.. But not all. They say its probably the pressure from all her couching that pops them open. She has CF she coughs alot we cant change that. I would make sure all the testing is done before you decide on the nissen or not. gastric emptying upper GI PH probe and endoscopy. Can reflux go away..YES.. But getting a gtube placed even with a typical non CF kid can increase reflux. Also have you tried all the medications and had your childs reflux checked while on meds? My daughter only has her tests done on meds now because they want to see how its helping and everything is still always severe. I wish you luck in deciding this.. I just thought you should know there are cons... Not every one has a happy nissen ending..
<br />
<br />Karen

 

[ashmomo]

I am so happy to see this post! I was going to post this weekend about any advice for a nissen/g-tube for my 15 mos old daughter. She will be having her surgery on Tuesday, next week. it is coming so quick! So I am VERY interested in seeing what other posts will come up <img src="i/expressions/face-icon-small-blush.gif" border="0">)

My daughter spits up/throws up frequently...in spurts. It's disgusting! I am so worried, but also know that she needs this. She is 17 pounds and losing...she was 18 pounds at the hospital in May...prob high 16's by now?

Any info would be nice for both of us <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Thanks!

 

[ashmomo]

I am so happy to see this post! I was going to post this weekend about any advice for a nissen/g-tube for my 15 mos old daughter. She will be having her surgery on Tuesday, next week. it is coming so quick! So I am VERY interested in seeing what other posts will come up <img src="i/expressions/face-icon-small-blush.gif" border="0">)

My daughter spits up/throws up frequently...in spurts. It's disgusting! I am so worried, but also know that she needs this. She is 17 pounds and losing...she was 18 pounds at the hospital in May...prob high 16's by now?

Any info would be nice for both of us <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Thanks!