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Post Fundoplicaton Problems

My daughter developed GERD & Lactose problems after a virus when she was 13. She had a partial fundo and pyloryplasty 2 yrs ago when she was 15 It worked for 6 mos. Last Sept 04 she had a re-do full fundo and a hiatal hernia repaired. Since, she has lived in constant pain and nausea. She couldn't eat at 1st due to the nausea and pain, so she was on TPN. Then after the line became infected it was pulled and she developed pancreatitis. Her amylase and lipase levels remained elevated to slightly elevated from this point until late Jan.
In Nov. they did an ERCP, basically it normal. In Dec. they place a dbl lumen G & J tube. Eating still was an issue, but she would have a tsp of mashed potatoes or some mashed carrots.
In Jan she was readmitted for an infection. Her amylase and lipast levels at this point were still elevated.
She had a HIDA Scan, which they said was normal. An ultra sound which showed sludge in the gallbladder, xrays, upper & lower GI's. The pain was so bad that they went in thinking she might have a blockage but nothing showed. They told us that it was possible but going under anthesia relaxed everything. They replaced the dbl lumen w a separate G & J tube. She is fed Peptamin through the J tube and we vent the G tube if the nausea is to bad.
She spent 30 days in the hospital. She has had several short 24 hours stays when the pain has been so bad that I brougtht her to the dr or ER room.
They repeated ultra-sounds where sludge was visible during one visit. Then next she had a CAT scan, which showed edema around the pancreas.
She had her esphogus stretched in May.
Still the pain and nausea continue to plague her.
She had another ERCP a few weeks ago where they also cut her sphincter of oddi muscle. She developed a pancreatitis w slightly elevated amylase and lipase levels. They removed the stint, and again she seemed to have the more intense pain associated w a pancreatic attack. She refused to stay in the hospital.
Since this last procedure she has tried to eat very small pieces of food. After she has dry heaves and increased pain.
I am at a loss as to what to do for my daughter.
She is still trying to finish her Jr year this summer, prepare for AP courses and wondering what to do about her college plans.
The dr suggest it is some kind of chronic pain. But when he was speaking to us the other day it dawned on me he has not been listening. He said they do not understand why the pain keeps her from eating. She has repeatedly tried to eat just to have increased pain & nausea. The dry heaves of late we had not seen in almost a year. Also the dry heaves never happened because she had eaten, they just started out of the blue.
I asked if it was poss. that her vagus nerve was damaged. GI said no.
What do you suggest?
She is 17 and just wants her life back.
She takes neruontin, nexium, donnetal, elavil, tramadol & zofran. Ativan for heaves and dilautid for severe pn.
None of this existed prior to the re-do.
Thanks
16 Responses
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Avatar universal
my little boy is three and a half he had a fundoplication done two years ago he is 100% G tube fed. He retches really bad to the point he is flat on his back. the surgen that did the fundo said it just something we have to live with. And it wasnt pain. you can see from just watching that it is. He also cant poo with out it causing him so much distress and the retching makes it even harder for him. we have our first appointment with the GI doctor today.
Can you belive it he has never even seen one and he had the fundoplication done two years ago.
I dont know any body that has had this done so i dont know what else i can do to help him other than vent his tube.

lucy
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Avatar universal
I just came across this as my son 17, is on his way to ER w/Dad.

Many similarities- but not the fundoplication.  He had a virus when he was 11, and many GI complications including gastroparesis but particularly chronic pancreatitis since.  He takes enzymes and hasn't had to be hospitalized for 3yrs for pancreatitis.  He sees a metabolic specialist for mito, not neurologist.

I'd like to compare notes...but don't know if you will see this and don't have the time right now.  Can I give you an email addy?

How is yr daughter doing, I can so empathize with wanting it to be normal!

I just registered so I could reply here, so let me know if you see this.
Thanks
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10947 tn?1281404252
test
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Avatar universal
My daughter had a molitily study done 3 weeks ago. She ate for the the first time since having an ERCP and spincterothomy done this past summer. Since then she has been plagued with constant dry heaves and increased pain (between an 8 and 10+ on the pain scale.) According to the dr's she has a molitily problem and should never have had the full fundoplication done in the first place. When having her evalulated for the increased pain and dry heaves, they ran some special blood test. They told me she the test came back with an abnormal results for mitochondrial disease.
She was admitted to the hospital last week for 5 days. They treated her as if she was having a pancreatitis, as she has been plagued with chronic pancreatitis since last Oct. '04. Her blood levels were normal. but this is not unusual as of late.
My daughter's quality of life is totally effected by this. She is now a senior in high school, having finished her jr. year the day before she started her sr. year. She cannot eat or drink since the sphincterotomy last summer, when she has tried drinking something becuase she has felt thirsty, she gets dry heaves. Although, the dry heaves she is having now just seem to come from no where, as she has not had anything to drink in over two weeks. She was even having dry heaves in the hospital when she was just on iv fluids and iv meds.
It is not unusual for her to go to school with increased pain and nausea, as school gives her something to focus on other than her illness. She cannot participate in sports, although when she is at her base pain, she does do volunteer work. She wants to be as "normal" as any other kid.

They say our next step for her is to see a neurologist who specializes in mitochondrial disease, which we can't get into see until Feb. That's even if they have finally going in the right direction.
In the meantime, we are trying to get the dry heaves and pain under control. The dr's prescribed Ativan and Diluatid, for the dry heaves and pain. She does not like taking them, as they make her tired and unable to do her school work. But, still the dry heaves persist.
I am constantly searching for info.
I actually asked the GI dr about motility problems last winter. I had to push to have the testing done.
It is frustrating and stressful to see a loved one suffer like this, especially when they are so young.

My heart goes out to all of you who have post-fundo problems. I know how it has effected my daughter and our family.
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Avatar universal
I found this article on CNN.com today about nerve transplants happening at Johns Hopkins in Baltimore. My wife suffers Gastroparesis (paralyzed stomach resulting in vommitting, pain, and feeding tube) as a result of nerve damage that occurred during a Nisen Fundoplication. i find it very encouraging. Does anyone have any info on such nerve transplants for Gastroparesis patients?  

http://www.cnn.com/2005/HEALTH/11/17/nerve.transplant/index.html
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Avatar universal
Our story is similar to many on this page. My wife had a Nissen wrap 3 years ago and a redo 1 year later as the first came undone. She now suffers from gastroparesis from vagal nerve damage as diagnosed by 3 major instituions with no cure in sight. She suffers from daily pain, naseau, vommitting, has a feeding tube, and her quality of life is miserable. We'd like to talk to others who have suffered similar results. Please e-mail us at ***@****.
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Avatar universal
Mittzy, My gosh your story about your daughter rings so many familar bells in my head. I have had so many tests for my pancreas pain. I lie in bed feeling like if someone does not figure something out soon I will just die.

I have the attacks quite often, I have been suffering with the pancreatitis for about seven years now. I even had my whole large intestine (colon) removed last year. I really thought it would cure the pancreatitis. No Such LUCK .  

I do not drink , and the doctors can not find the cause for my pancreatitis so all they can do is treat the pain. I want you to know , I have stayed home through my last two attacks and treated myself.

I find that valium works better than pain medication, especially dilaudid, that pain medication is what was found to be the cause for my vomiting , nausea and many other symptoms. Get her off of that stuff as soon as possible. It will cause withdrawl which will make her even sicker , but once off of pain drugs she will begin to be able to hold food down . This process took me about one month.

Now at least I can eat. Pain meds also cause constipation which can cause slow emptying of other organs causing more iritation and attacks with pain straight through to your back.

You have to take control of your own destiny, I am a disabled firefighter/medic, I teach emergency medicine for a living. I am trying my damnest to learn as much as I can about all of this.When I became disabled pain meds and spinal trauma caused severe constipation and that is where all my pancreas problems started. I am a 47 year old mother of 4 grandmother of 5. And I am fighting to watch them grow up. Good luck and let me know how your daughter is doing.
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Avatar universal
lpc
I have been reading these comments about post operative complications of Fundoplicaton, because I am trying to make up my mind whether to have the surgery or not on a elective basis.  I have a paraesophageal hiatal hernia (PEH), but have had no major issues other than 1)  chronic mild anemia due to bleeding stomach and 2) erosion of my stomach lining seen upon endoscopic examination, and 3) two medical emergency episodes  of volvulus. (Doc referred to it as stomach 'flipping' or rotating to the point of causing severe crushing chest pain, vomiting quite a bit of 'coffee grounds blood' and food being trapped up in my 'flipped' stomach which has to be removed with a therapeutic endoscope extension under general anesthesia.  Last time removed 850 cc's.) I should commend though that these medical emergencies occurred five (5) years apart - the past time was one month ago.

I see in this blog that the docs have oftentimes made it sound easy and unlikely to come with severe complications.  And your experiences have proved otherwise.  That is why I am writing.  I need to hear more about this -- how often do we in fact see these types of complications?  IS IT OFTEN ENOUGH THAT THE THINKING INDIVIDUAL SHOULD AVOID ELECTIVE FUNDOPLICATION??? This is a crucial question for me.

I have seen two well respected laparoscopic surgeons.  One said he would not touch this one, because he says he does not have enough experience with PEH and its complications, and my stomach is fully intrathorasic (is that the word for fully in your chest?)  He AND the local medical school referred me to the surgeon who is supposed to be the 'Top Gun' in the Dallas area in doing this type of surgery.  And he made it seem like an easy operation with no major complications likely to occur. But what I am reading does NOT sound like that is the case. Am I playing with fire to undergo this type of surgery when I have had only one real medical emergency related to volvulus?

NOTE:  I HAVE ONLY RECENTLY (SINCE THE RECENT MEDICAL EMERGENCY WITH THIS, STARTED TO FOLLOW A LOW-RESIDUE DIET AND LIFESTYLE CHANGES SUCH AS NOT EATING AT 10:30 AT NIGHT. AND I FEEL FINE.  SHOULD I GIVE THAT A TRY BEFORE JUMPING INTO FUNDOPLICATION?

All comments including that of the doc here, are welcome and encouraged!  Thanks sincerely - LPC
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Avatar universal
lpc
I have been reading these comments about post operative complications of Fundoplicaton, because I am trying to make up my mind whether to have the surgery or not on a elective basis.  I have a paraesophageal hiatal hernia (PEH), but have had no major issues other than 1)  chronic mild anemia due to bleeding stomach and 2) erosion of my stomach lining seen upon endoscopic examination, and 3) two medical emergency episodes  of volvulus. (Doc referred to it as stomach 'flipping' or rotating to the point of causing severe crushing chest pain, vomiting quite a bit of 'coffee grounds blood' and food being trapped up in my 'flipped' stomach which has to be removed with a therapeutic endoscope extension under general anesthesia.  Last time removed 850 cc's.) I should commend though that these medical emergencies occurred five (5) years apart - the past time was one month ago.

I see in this blog that the docs have oftentimes made it sound easy and unlikely to come with severe complications.  And your experiences have proved otherwise.  That is why I am writing.  I need to hear more about this -- how often do we in fact see these types of complications?  IS IT OFTEN ENOUGH THAT THE THINKING INDIVIDUAL SHOULD AVOID ELECTIVE FUNDOPLICATION??? This is a crucial question for me.

I have seen two well respected laparoscopic surgeons.  One said he would not touch this one, because he says he does not have enough experience with PEH and its complications, and my stomach is fully intrathorasic (is that the word for fully in your chest?)  He AND the local medical school referred me to the surgeon who is supposed to be the 'Top Gun' in the Dallas area in doing this type of surgery.  And he made it seem like an easy operation with no major complications likely to occur. But what I am reading does NOT sound like that is the case. Am I playing with fire to undergo this type of surgery when I have had only one real medical emergency related to volvulus?

NOTE:  I HAVE ONLY RECENTLY (SINCE THE RECENT MEDICAL EMERGENCY WITH THIS, STARTED TO FOLLOW A LOW-RESIDUE DIET AND LIFESTYLE CHANGES SUCH AS NOT EATING AT 10:30 AT NIGHT. AND I FEEL FINE.  SHOULD I GIVE THAT A TRY BEFORE JUMPING INTO FUNDOPLICATION?

All comments including that of the doc here, are welcome and encouraged!  Thanks sincerely - LPC
Helpful - 0
Avatar universal
AACW, I tried to email you, but it appears as though the email you posted here doesn't work. I'm 30 years old have ben through the ringer with the Nissen operation (worst mistake of my life) and have since had to have the wrap reversed, or close to it anyways. It's a long story but if you want to talk either re-post your email address or feel free to email me at ***@****
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Avatar universal
My wife had a nissen Fundoplicaton 2 years ago and since has lived a life of constant pain and hell.  The doctor denies any problems with the operation and says the vagal nerve might have been damaged.  This is a very dangerous operation.  She has been through every known test and many twice.  Most doctors recommend simply taking strong pain medication.  I've read many others posting about the same result.  This operation should be stopped as the body count is very high.  What are possibilities of either trying to reverse the procedure, repair of some sort of the vagal nerve, or will a feeding tube help.
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Avatar universal
after suffering acid reflux for ten years and trying every drug on the market I GAVE UP: i had the nissen fundoplication[not lapro.]and have had alot of complications.my surgeon made it sound so simple. he went in my shoulder,took out a rib,repaired a hiatel hernia,took 2 inches of my stomach and put it on my esoph. tied off my vagal nerve and who knows what else. i developed SHINGLES,have dry heaves,diarrhea every day,if i eat i feel nauseted but cannot PUKE. he put me on nuerontin. this surgery took place nov. 2004. the pain from my damaged nerve endings still persist.i am unable to perform some of the most task without the pain shooting thru my left chest cavity.i quit taking nuerontin b/c of the side effects [1200 mg. d       aily].  IF ANYONE ELSE NEEDS TO TALK LET ME KNOW ***@****
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Avatar universal
I HAD OPEN NISSEN FUNDOPLICATION NOV 2004. WANT TO KNOW IF ANYONE HAS SERIOUS PROBLEMS WITH SHINGLES. I HAVE BEEN TAKING 1200 MG. OF NEURONTIN DAILY. THE PAIN STILL PERSIST CONSTISTLEY EVERY DAY. WANT TO KNOW IF ANY ONE ELSE HAVE THE SAME PROBLEM? DO YOU KNOW ANYTHING ABOUT SIDE EFFECTS LIVER/AND NEUR.
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Avatar universal
Thank you for your info.
My daughter has now reached a point where she can no longer put anything in her mouth with out having dry heaves. It is very distressing for our entire family, as her only way form of nutrition is through her J tube. This new development has only been since she had the ERCP and sphinterotomy a few weeks ago.
When she was be preped for this procedure, the GI dr who did it, told my husband and I that there should be no complications, except for maybe a pancreatitis flare. Well, she had the pancreatitis, and now this dry heaving problem.

Her GI dr is in the process of weaning her off some of her meds. She is now off Elavil, Zofran, Donnetal, Nexium and is currently on a wean down of Neurontin. *Please note, my daughter and I did research on Neurontin, and found that it is not FDA approved for pain management.

***To TJV, I have requested a copy of her med records. She is now on Reglan, but we have not noticed any improvement. She has had many studies, but I don't think that she has had a gastric emptying study since before the redo-fundo. She has had numerous Upper GI's, CAT scans and HIDA Studies. But none since this new development of dry heaves after anything enters her stomach.

My heart is broken to think that all of this has happened since her redo Fundo. My daughter wonders if she will ever be "normal" again. She is still working towards finishing her Jr year, and hopes to be able to keep up w/ a full school schedule, that will include 4 AP classes this coming Sept. She hopes to enter college in Sept '06 as a pre-med student. The irony of all of this, is that for years she wanted to be a Pedi GI dr.

Thank you.


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Avatar universal
TJV


   Gastroparesis from vagal nerve injury is certainly possible. During a redo , they often have to cut the prosterior vagal nerve intentionally  if the vagal trunks are left outside of the wrap in the first op.  

The anterior vagal nerve may need to be sacrificed if it is immersed in scar tissue at the level of the diaphram .

  Unintentional vagal nerve injury  is of course possile too .  There is no way the GI could say for sure that vagal injury is definately not the case . That is a ridiculous statement.  A gastric emptying study would be an important test . Has she had one? Has she not been tried on a motility drug for her nausea?

I would also  reccomend obtaining  a copy of her fundo redo report from the hospital, it should say if they had any problems concerning the vagal nerves during the op  in that report.  Good luck

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233190 tn?1278549801
MEDICAL PROFESSIONAL
This is clearly a difficult situation for someone so young.  Many procedures have been done to evaluate this - including a sphincterotomy, ERCP, upper and lower GI, imaging studies etc.  

At this time, you can consider further specialized tests that can lead to nausea - such as a gastric emptying scan looking for gastroparesis.  

If an upper endoscopy has not been performed, this can be considered as well - it can provide more detail than an upper GI series.

These options can be considered with you GI specialist.  You can also consider another opinion at a tertiary care facility.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com
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