Posted By Posting
Oct 28, 2008
steamboatrocks
born with GERD and trying to get rid of it!
post fundo...need advice
Hey everyone. Im 21 years old and had a fundoplication about 3 months ago and feel exactly the same as I did before the surgery. no meds work, and apparently neither has the surgery! went to see the GI today and I don't think he really knows whats going on! Has anyone else had a similar experience with the fundo not working?
Oct 28, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Did they scope you to see how tight the wrap is???

If the wrap is not tight enough you can reflux paat the wrap. And it is it too tight of course you can't swallow and that's when dilations are needed to loosen the wrap. Also were you aspirating from above whiel swallowing???

A swallow study can tell if this was occuring. It is best to have had t his prior to having the Nissen when the wrap wasn't in the way. Nissens can't stop aspirtaions that are coming from above. So if you were having difficulty swallowing prior to the Fundo you will STILL have them post Fundo.

Did they place a G tube during the procedure???

That will allow you to vent (burp) via the tube and relieve the pressure tha tis building up in teh stomach if the wrap was done too tight. Withotu if the stomach can just bulid up all that gas and if it gets bad enough they will need to place a NG tube down your nose to relieve the gas build up.

Also, did you have any Motility studies done prior to the Nissen getting done or any gagging and retching issues???

Peolpe who have issues with their stomach emptying properly do poorly post Fundo. Those who have the gagging and retching pre-fundo often have their Nissens fail. Post fundo it will normally increase and cause ALOT of discomfort. Sorry for all the questions but it will help me to answer better.

Sorry that the Nissen hasn't gone the best for you. Sometimes DR (surgeons) make the Nissen sound awesome when in fact it may not be the best option. On the flip sode a Nissen has saved many children's lives that I know. So, it is a two edged sword. You don't knwo how t hings will go post Surgery, so the unknown can cause issues afterwards.

That's why most people I know who get one have had quite extensive testing before getting one done.

Oh, and Welcome!!!!! You will find lots of suport here. My Jedd has not had the Nissen and will nto get it. He has started to outgrow and we have gotten his GERD compltely under control now. About 18 months ago (Jedd is 2) they wanted to tie Jedd off and we said NO. He was having NO life threatening issues. I told them to let us make it to the age of 2. Here we are and we made it. Was it fun in the proocess NO. But he had DGE and a Nissen would have probably failed in his due to excessive gagging and retching.

Let us know if you have any other questions. Really sorry to here you suffer from GERD.

Oct 28, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Hi! I just had my nissen fundo in August -- and recovery has been very slow. :( Did they rule out other possible causes of GERD-like symptoms (like EE, Celiac disease, etc.)?? Have you had any more testing to see if you are, in fact, refluxing post fundo? Sorry for more questions. This hasn't been a fun procedure for me either. ((hugs))
Oct 28, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Those are also very good more questions as well. There are lots of issues that can "look" like reflux but NOT be reflux. There are tests they can do for each of those things to see if those are your issues as well.
Oct 28, 2008
steamboatrocks
born with GERD and trying to get rid of it!
thanks so much for your help!! my reflux was pretty bad as a kid but apparently i grew out of it for a while, but dont think totally. was rediagnosed at the end of 2002 and it hasnt been under control since being rediagnosed. i became really anaemic at the beginning of 2006 and my GI has no idea why i became anaemic, so, many many tests were done. ive done every GI tract test there is and most more than once. as far as he knows nothing else is going on. im lactose intolerant but not celiac. prior to the fundo i didnt have any swallowing issues or gagging or retching, just lots of pain and vomiting. i did manometry studies and they came back fine and my LES pressure was just normal. but my pH study camp back as severe reflux, my pH got down to 0.1 at night and i spent 80% of the 24hr study below pH 4. I didnt get a G tube placed, that was never really discussed. but i could burp from day 1 which made me kinda worried cos my surgeon told me i prob wouldnt be able to for ages. but i also got really bloated at the same time. things just dont add up! im so confused!
Oct 28, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Have you done Lower GI testing. The bloating makes me wonder...hhhmmmmm I'll think of more...LOL
Oct 29, 2008
steamboatrocks
born with GERD and trying to get rid of it!
whats included in lower GI testing?
Oct 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
They can do colonic manametry testing to see if things are moving correctly on that end. Also they can test for Hirshprung's (sp. is wrong on that one I'm sure) Also they can see if there is any Malrotation of the intestines that coudl cause the GI tract to move slower. Just ryin gto hlep you pinpoint what may be going on.

Where did you get your GI testing done at??? I know you are 21 but sometimes they will still do your testing a a Peds hospital. Jedd will be seen by his Ped Cardiologist until he is 21 or 22 years of age I have already been told this. So sometimes the GIs will want to hang on to you for that long as well.

There are some really really GREAT Child. hosp. out there. I don't know too much about the Adult hosptials. So I can't hlep out there.

The top children's hosp for GI testign and issues are Nationwide Children's in Columbus Ohio and Boston Children's (BCH) in Boston Mass. They are both VERY excellant. Jedd's Motility studies were done at Nationwide with Dr DiLorenzo. He also saw Dr Moussa while we were there for his Impendance probe. Dr DLi. oversaw Jedd's A and D man test.

Oct 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
You can find alot of GI info here. The lady who publishes that e-magazing relly knows her stuff.

http://www.complexchild.com/

Oct 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Check out this part of the Complex Child e-magazine. It's about medical "zebras" or children that have issues that mimic reflux. Quite interesting......

http://www.editions.complexchild.com/april2008.html

Oct 30, 2008
steamboatrocks
born with GERD and trying to get rid of it!
thanks so much for your help! i see an adult GI and all my testing is done at my local hospital, I live in Australia and some of the testing ive had has been at a hospital in the city. am having another scope in a couple of weeks so hopefully some answers come from that!
Oct 30, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I hope the scope will give you some of those much needed answers. HUGS
Check with your
doctor first!