Re: Nissen fundoplication?

[Guest guest]

I know of a infant girl who had the Nissan procedure done about a year ago and did wonderful. She hasn't any complications and actually no longer needs her G-tube. She isn't a mito baby but she was a preemie and did very well.

[Guest guest]

Lori—

My

daughter has had a Nissen fundo, along with the installation of a g-tube, and a

repair of the Nissen about 9 months after. The stop of reflux has made a huge difference in ’s

life. And, she can no longer vomit

and then aspirate, which has been a blessing, and has reduced her respiratory

illnesses by quite a large amount.

Our first

Nissen was laproscopic, and though it failed, there were only about a week of

healing time. The second Nissen

was open, and completed in conjunction with repair of an inguinal hernia which

had occurred along the site. The

open surgery took a week of being flat on her back, with an epidural, to get

through. I have to say that no

longer having reflux, or having to worry about whether a bolus of food is going

to make her miserable has been a blessing.

has an undiagnosed condition along with a chromosomal deletion, and even with

her low tone has done beautifully.

It seems

such a big operation to take away what some adults just treat with Tums, doesn’t

it? But until you resolve the

reflux issue, you’ll be surprised how much better life seems when the food

doesn’t interfere with things like sleeping and breathing.

Good Luck,

Mom to

Ann, del 2q37.3-qter, hypotonia, g-tube, trache, global delays,

dysautonomia, seizures, sensory integration problems, non-verbal, and TWO!

-----Original

Message-----

From: Lori Cutillo

Sent: Thursday, January 29, 2004

3:22 PM

To: Mito

Subject: Nissen

fundoplication?

Hi all,

I'm wondering about your experiences with the nissen fundoplication surgery for

reflux.

just had the 24 hr. ph study and upper endoscopy. It showed he's

refluxing 14% of the time. The doctor said it is severe; however, she has

seen worse. She said if were her son, she would do the

surgery. Just not sure what to do. He's actually going through a

period of throwing up less; but, as the study showed, he's still refluxing, it's

just not coming all the way up. A couple months ago, he went through a

period of actually vomiting up to 10 times a day.

Do you

have any opinions about whether the procedure is worth it?

Thanks!

Lori and , age 4 1/2, complex I and IV

Please contact

mito-owner with any problems or questions.

[Guest guest]

Lori,

My son had a Nissen done at 7 months of age. The surgery itself was pretty easy, no complications, but it has never worked for him. He started vomiting and refluxing 3 days after surgery and it has only gotten worse. He has had to go back on all his reflux meds, and continues to vomit daily. Our main reason for doing the surgery was that Will was choking on what was coming up, and we had a number of close calls with him stopping breathing.

I know for a lot of people the surgery is successfull, but not for us. He had his surgery done laproscopically, and some say that it has more problems this way. The best thing to do is ask lots of questions of the surgeon, make sure they have lots of experience with kids.

There is a group on yahoo for families that either have Fundos or are considering them. The parents there have a ton of information, and have lots of experience with the good and bad of them. FundoMoms or FundoFamilies . Both groups have a lot of the same members, one archives messages the other doesn't.

I hope that is helpfull,

[Guest guest]

Kass,

I would agree with the Gastric emptying scan before having a fundo done. had one done just as a precaution before getting her g-tube,her doc didn't want any surprises.That test was fine,but an upper GI showed reflux which we did not know she had.Long story short,she had the nissen at the time as the g-tube.It's been over a year now and no problems.

,Mom to

Re: Nissen fundoplication?

Hi Lori :-) Was just wondering, have they tried meds to control the reflux yet?? Have they done a Gastric Emptying Scan to be sure its not an issue with delayed gastric emptying?? Abby refluxes a ton (including the throwing up when she's not on meds) and we were having a hard time controlling it with high doses of reflux meds. When we saw the GI at Mayo he ordered an emptying scan and we discovered that hers was delayed. As he explained it, this is likely why we've had a hard time controlling the reflux.....if the stomach is not emptying, the pressure builds, and all the reflux meds in the world are not going to stop it from coming back up. We seem to be seeing some small improvements with control the weeks she's on the motility meds over the weeks she's not, so hope this is going to make the difference. From what I have heard, like so many other procedures, there are some the fundo helps a ton and others that have more problems because of it. Most common issues I have heard about are that its wrapped too tight and causes problems, or its too loose or comes un-done, causing problems. FWIW, I'd definatly recommends the gastric emptying scan be done before the Fundo, just to be sure. If he's not emptying well, the fundo could cause more problems, not to mention make him miserable as the pressure builds. Hope this helps!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Lori Cutillo wrote:

Hi all, I'm wondering about your experiences with the nissen fundoplication surgery for reflux. just had the 24 hr. ph study and upper endoscopy. It showed he's refluxing 14% of the time. The doctor said it is severe; however, she has seen worse. She said if were her son, she would do the surgery. Just not sure what to do. He's actually going through a period of throwing up less; but, as the study showed, he's still refluxing, it's just not coming all the way up. A couple months ago, he went through a period of actually vomiting up to 10 times a day. Do you have any opinions about whether the procedure is worth it? Thanks! Lori and , age 4 1/2, complex I and IV Please contact mito-owner with any problems or questions.