Saw consultant on Monday. He wants H to have the Nissen Fundoplication. I think he needs it but its sooo scary. H hasn’t put any weight on for three weeks now. How have others made their decisions?

Hello, my son Isas (7 months old, but 2 months premature) had the Nissen Fundoplication back in January of this year.  He had severe reflux, so we didn’t really have any choice. His reflux was so bad that he spent the first nearly 5 months of his life in hospital - as it wasn’t safe for him to be at home.  I wasn’t at all keen on him having the Nissens, but we didn’t really have any other option. I remember researching alternative procedures to try and avoid having the Nissens - only a few other alternatives exist and none of those were yet suitable for small babies.

I must say now though that i’m so glad he had it. He is finally home and a transformed character.  A much happier young man, who is a lot more comfortable.

Jane x

Hi,

We hope to post MP3 audio files of the 2005 and 2007 conference presentations on the website in a few weeks time.  At last year’s conference Sean Marven of Sheffield Children’s Hospital gave a presentation on reflux and touched on Nissens and its variants.  I’ve just listened to it again - its a bit blunt in places and may raise as many questions as it answers, but he does make it clear that the Nisses Fundoplication is currently the gold standard of anti-reflux surgery.

I don’t know what your time scale is but if you can’t wait two or three weeks send me an e-mail and I’ll reply with the MP3 file attached.

All the best

Mike Brown

If you check out the Thread poor feeding we have kinda been discussing Nissens!  Hope this helps. Teresax

hello our son jack had the nissen done two years ago an hour before the op i cryed my eyes out not wanting him to have it i was so scared
the doctor assured me that all would be ok
i have to say his recovery was excellent we were home in 6 days and have never looked back
jack started eating bread for the first time and his choice of food has grown
jack has not needed anymore stretches since the nissen op
he has other problems and some side effects from the op like ‘dumping’ after eating and weight loss but the improvement has been amazing
i hope this helps
lisa

Its gonna be the firt week in August, after our family holiday. I’m scared witless, or another rhyming word….
Though he has put on 11 oz in 2 weeks, ironically…

Its such a worrying time isnt it.  Lucy has seen her consultant and he has decided a couple of moths ago that she didnt need Nissens as her reflux wasnt terribly bad!  Said to try taking her off her reflux meds to see what happens, within 24 hours it was horrible, she was uncomfortable, gurgling, whinging, wouldnt eat.

She too didnt put weight on then had a jump but at the momemnt she is back to choking alot, had a stretch a few weeks ago as she choked on a bit of sausage and had to go to theatre to get it out.  Already she is choking loads and think maybe another stricture.  I believe they may do another study and see if things have changed and decide to do the Nissens afterall!!

We were soooooo pleased when he said he didnt think she needed it but now I feel gutted that she is choking all the time again and deep down know she needs reviewing!

Lucy weighs 24lb 8oz and is 2 years 3 months.

I have spoken to a few people regarding the Nissens though and not one had a bad word about it, they said that there child quickly recovered and they havent looked back since!!

Hi

I haven’t really had the chance to decide I was told that if Devin went into hospital 6 or more times then he had to have the nissen, yes next time is the 6th.  But we are having heaps of chocking episodes at the moment and they think that they will need to do the nissen regardless.  Now I just have to wait for the doctors to stop striking and maybe we will get some action.

Jo

Hi,

Bless ya, its horrible isnt it.  Lucy is suffering at the momemnt too.  Loads of choking episodes on just about everything lately!  I rang the hospital and have moved her appointment to end of this month instead of July and see what they say, thats if we arnt in there by then for a food obstruction!!

Keep us up to date with your progress.  Teresaxx

Hi
I have been given a website by my pediatrican today about nissens.  It has the experiances the parents went through good and bad.  I have found it to very helpful for putting things into prospective for desiding that Devin should have the nissen done, hope that it is some help for you as well.  Website is http://www.cryingoverspiltmilk.co.nz then select stories for others experiances and treatment, anti-reflux surgery for what is involved in the procedure with pros and cons.
I hope that this is of some help.
Jo

Hi

Thanks for that I will take a look.  We have Consultant appointment tomorrow and end of month so will be good to read before we go.

So you have decided to let Devin have the Nissens then??  Do you have a date yet?? Teresaxx

Hi Teresa
We see the surgeons on the 4th June, the day can not come fast enough for me.  After reading the website and talking to the lady that runs the website I will let Devin have the nissen as it is the only option available in NZ other than medication which Devin is on the strongest and best one already.  I would just love to have a full nites sleep its been so long.  you can email me at .(JavaScript must be enabled to view this email address) if you want talk more.  I’m going to be talking to a mum of a kid thats had the nissen done by key hole and being fully cut open.  Hop all goes well for Lucy.
Jo

Hi

Thanks for reply.  We have just seen Lucy’s Respiratory consultant today and he is still insisting that she needs the Nissens.  So we go back may 27th for a meeting with him and her other consultant who said he didnt think she needed it or just yet!  So I guess we’ll decide from there.  Yes a full nights sleep would be nice,  Lucy gets up anywhere from 330 am!  she does settle back in but broken sleep is the worst!

I will email and chat.  My emeail is .(JavaScript must be enabled to view this email address), if you or anyone posting wants to chat more! Thanks Jo

Barnaby is due to have his nissen on weds and I am really scared.  I think that we have made the right decision but now the day is getting closer I am feeling very nervous.  Both consultants he has seen say that he needs it due to his severe reflux but I feel awful about putting him up for such major surgery.  Hope someone can reassure me we have made the right decision but I guess no one can until we see the results.

Hi Debbie

Jack (2) had his Nissen’s in January and has astounded us with his progress. He is eating everything that he ate before and new things too. We still need to be careful because he does get stucks but he can eat sandwiches, mince meat - and therefore lots of meals, and more fruit. Jack’s surgeon did it with an open incision because he wanted to be able to get the wrap right to help with his eating. He recovered well and was home on day 4, playing with his toys. He didn’t need pain relief for long, but I made sure that it was regular for a week. After that it was just panadol if he needed it and that wasn’t for long.

I’m sure you have made the right decision. It’s hard though isn’t it. Just remember, the time will pass quickly and Barnaby won’t remember it. Hope all goes well, don’t forget to let us know.
Cheers
Jody

dear jody, thanks for the reply spent another sleepless night of worry about the procedure but hearing positive news like yours really helps. Read that nz web site about gagging post op etc and thought i was replacing one set of problems with another.  In my heart of hearts I know this is the right thing to do but am still really worried.  Barnaby is only really eating puree and meringues which he loves, some of the stuff that he was eating seems to make him choke so who knows, things may get better after the op.  He is having a key hole procedure. Just don’t want to loose my lovely cheerful boy for too long as he recovers. will keep you posted.
love Debbie and Barnaby