PAGER used to do very long, print newsletters. This one focused on surgery. It was written in 1999 and is still pretty relevant. It does not include the new intraluminal techniques which are alternatives that are not yet available for children.
Q - What are the names of the various types of fundoplications you and your surgical staff perform at CHLA?
Nissen and Toupet fundoplication.
Q -Do you prefer of perform a specific type of fundoplication? Why?
The gold standard for any type of fundoplication is the Nissen wrap. This is because there has been the greatest experience in this procedure. It is a relatively simple procedure, its complications are known, and there has been a long medical follow up. Any other type of procedure must be measured against the Nissen wrap. I perform a modification of the Nissen called Toupet fundoplication when I can but I do not have a long term experience with this and again, the gold standard is Nissen.
Q - Who should decide which type of fundoplication if performed?
The surgeon is the one to decide which type of fundoplication is performed which is based on his/her expertise, experience and preference.
Q - Many parents ask, "Will this be the only surgery my child will need, and will the problem be fixed after surgery?" Could you please comment on this?
As with all surgical procedures, there are no guarantees of outcome. The child may be completely relieved of signs and symptoms, which is our goal, or have any of the complications listed above at any given time. The children may do very well for an extended period of time and then present with a "slip" or disruption of the wrap. The potential complications of surgery must be weighed against complications which will occur if a fundoplication is not done.
Q - Laparoscopic Fundoplications seem to be a hot topic, what are your comments?
Laparoscopic fundoplication is increasingly being performed in both children and adults. Again it is a new procedure and the long term results are completely unknown. It must be measured against the known standard of the open Nissen fundoplication.
Q - In your opinion, what should a parent/family look for or require of their pediatric surgeon?
Pediatric surgeons should be experienced in surgery for the gastroesophageal reflux and should have an interest in this condition. Since this is such a common operation, most periodic surgeons have considerable experience with it during their training and beyond. Pediatric Surgery is a defined specialty which requires two years of training beyond completed training in general surgery. There is a certificate of special competence in Pediatric Surgery which is an examination by the American Board of Surgery and eligibility for this follows completion of the American Board of Surgery Certificate in General Surgery. These are the formal requirements for a pediatric surgeon and you should make sure that you surgeon has these qualifications.
Q - Do you feel it is important for the parents to ask their surgeon for his/her success and failure percentages in whatever type of fundoplication surgery they consistently perform?
This is a difficult question to answer because there are a lot of rare procedures in Pediatric Surgery (GER surgery is not one of them). In these cases the training and the qualification to take care of children and the technical ability of the surgeon is far more important than the actual number of a particular type of procedure that has been performed. You can only measure success and failure percentages when the surgeon has done hundreds and hundreds of these cases. Most good surgeons have essentially the same success and failure rate so an individual question about surgeons success and failure rate is not really very relevant.
Q - How do parents go about getting an reliable referral for a pediatric surgeon?
Pediatricians usually know who the good pediatric surgeons are and in general , you should follow the advice of you pediatrician. However you need a certain comfort level with the person who is going to operate on your child and for any reason at all you are not comfortable with that individual, then you should seek another consultation. You are required to put a great deal of trust into someone who is operating on you child and it is difficult to do so if you do not trust them instinctively, if you don't like them, or if they do not spend the time explaining the procedure to you in language which you understand or if they do not answer you questions. This is over and above the answer to the qualifications above.
Dr. Benny Kerzner, Chief of Gastroenterology and Nutrition, Children's Hospital National Medical Center, Washington, DC (CHNMC)
Q - As a pediatric gastroenterologist, what indications or criteria must a child meet before you would suggest a fundoplication for a child with GERD?
The indication for surgical management of gastroesophageal reflux disease (GERD) is a failure of medical treatment. The treatment failure might be obvious but frequently it is a judgement call. One balances many factors:
Q - What can parents do to assure that surgery is appropriate?
The parents' role in this decision is critical - not only in assuring that the child receives all of his or her medical therapy but also in helping the medical team gain the true perspective of the gravity of their child's symptoms.
Q - In your opinion, are there any tests or procedures that should be required before proceeding with a fundoplication surgery?
Before a fundoplication, a barium contrast study to evaluate anatomy is needed. Additional tests ordered depend on the circumstances of the patient and are not mandatory. To appraise the anatomy and pathological changes in the esophagus, the best test is an endoscopic examination. To evaluate gastric emptying, a scintiscan (milk scan) is done. When reflux is not the obvious explanation for symptoms or we wish to evaluate the success of medical treatment, pH metering of the esophagus is used. In principle, however, we aim to do the least amount possible to confidently arrive at a conclusion regarding the need for the anti-reflux procedure. This may be a Nissen fundoplication with or without further surgery to drain the stomach or place a gastrostomy tube.
Q - Do you feel that it would be valuable for the family to get a second GI or Surgical opinion before proceeding with the fundoplication surgery?
Electing to do surgery is always a challenging decision, but the need for a second opinion is by no means universal. I suggest a second opinion when the choices are difficult and when the parents and/or doctors are not confident in the decision reached. On many occasions, failed medical treatment is obvious to all and a second opinion does not seem necessary.
Q - Could you suggest a few basic questions that would be important for parents to ask their gastroenterologist regarding fundoplication surgery?
Parents must ask questions which help them clearly understand that medical options are exhausted. For example, has the optimum dose of the medications been used? Are there alternatives? They should know the success and complication rate of the surgery. They should not only inquire about the depth of experience of the surgical team, including the anesthesiologist, but also about the nursing support available for device (tube) management when applicable.
Q - Laparoscopic fundoplication seems to be a hot topic. What are your comments?
I favor laparoscopic fundoplication, and I believe it is here to stay because the short term post-operative course is so markedly improved. However, laparoscopic techniques differ and portions of the traditional Nissen fundoplication may or may not be done, i.e. mobilizing the stomach and fixing the diaphragm. Patients need to understand these differences and discuss them with their surgeons.
Q - How do parents go about getting a reliable referral to a pediatric gastroenterologist?
The management of GER is fundamental to pediatric GI, and all board certified pediatric GI doctors will have received extensive training in this area. Parents should work with a pediatric GI specialist who relates well to their primary care physician and with whom they can have a frank, two-way conversation. I believe parents should primarily be guided by their primary medical doctors.
Q - What post-operative complications from a fundoplication do you see most commonly in your practice?
The most common post-op complication is gagging, but food rejection and swallowing difficulties are also seen. If these symptoms persist or if they begin weeks or months after surgery, particularly if accompanied by vomiting, disruption of the surgery has probably taken place. Occasionally, diarrhea due to very rapid emptying of the stomach, known as "dumping syndrome," is seen.
Members Write About Surgery
We invited our members to share their experiences with surgery. Human nature being what it is, almost all submissions were about problems with surgery. Members who had good experiences were not motivated to write. Our group also has a disproportionate number of members who have had a really tough time with GER. (Since we don't advertise, these are the parents who are motivated enough to find us.)
These parents and patients didn't write just so they could whine or alarm you. They wrote because they want others to be able to learn from their experiences. Keep this in mind as you read their stories. Try to concentrate less on the details of what went wrong and focus more on the appalling difficulty of deciding what is the least harmful option for your child, at this moment. It is totally irrelevant whether any of us would have made the same decision. Only a patient and their family can decide what is best for them.
Nine Months Later.. Still Waiting for Answers....
Adam was a 26 Week preemie and spent four months in the Neonatal Intensive Care Unit (NICU). He had a lot of different issues including a brain hemorrhage, apnea, bradycardia, infections and the works. When they started feeding him they thought they saw some signs of reflux but fairly minor and by the time he left the NICU they had taken him off all his medicines. He came home and was home for less than a week when they decided to put him back on his Zantac and Cisapride. They tended not to work for him.
Adam had been home for a little over a month and he developed hydrocephalus. They put a shunt in and at the same time the throwing up got worse and he stopped gaining. He came home after the shunt surgery and was home for about three or four days and was throwing up so badly that he became dehydrated. They admitted him to Fairfax Hospital and was there for a week. He went home with an ng-tube (naso-gastric) to supplement his feedings during the day and to allow night time feeding. He stayed out of the hospital for about a week and ended up back in because, again, he was dehydrated. This time they put in a nd-tube (naso-duodenal?) which goes through the nose into the intestines. That was a lot of fun because he would pull it out regularly - like several times a week and we would have to go back to Fairfax and they would have to put it back in with the x-rays and the whole business.
Finally, in October, Adam completely stopped taking a bottle and we were feeding him with the ng-tube again (the nd-tube didn't seem to make and difference and we could put the ng-tube back in ourselves.) We went around and around about whether or not to do the Nissen. We finally saw Dr. Lake up at Hopkins who convinced us that even though we were getting nutrition into Adam, he was still in pain, he wasn't eating, and he would not learn to eat until he stopped having pain. Right after Christmas we had the Nissen done and a g-tube (gastrostomy port in the abdominal wall) placed.
Adam started off great when he came home after the fundo. They felt he would probably never take a bottle, but we were at least getting some solids into him. He was up to taking almost six ounces of solid food and then he started with dry heaves and retching like he was trying to throw up and couldn't . This was pretty consist at all of his feedings. He took five or six ounces of formula in his tube every four hours during the day plus night time continuous feeds.
Again, we went around and around. Everybody kept telling us that the retching was something we were going to have to live with. We finally went to Children's and saw Dr. Kerzner. He said, "No the retching is not something you just need to live with." They drastically reduced the amount of fluids Adam was getting during the day and he stopped retching. I just want to tell other parents not to listen when they are told that retching and dry heaves is something you will just have to live with. I think that there are ways to get around it.
I strongly recommend getting in touch with a nutritionist now if you are talking about fundoplication or a g-tube in the future. We are working with a nutritionist at Children's in DC.
Unfortunately, Adam has continued to go downhill. He is losing weight. He is not eating any solids at all. He might take a sip of water here and there. He tends to retch in the morning when he wakes up after being on a continuous feed. We are considering taking him up to Hopkins to the feeding and swallowing clinic. I'll let you know.
Adam is sixteen months old now, and I think that we are dealing with a couple of issues. He wants to feed himself, but he has been abnormally fed for so long that he has no idea how to chew and swallow. He might take a bite of cracker, but then chokes and gags and turns all kinds of wonderful colors. Food just sits in his mouth. I'm sure that comes from the fact that he stopped sucking in October. Too eat and chew and swallow obviously you have to start with sucking, so it makes sense. We are also dealing with the issue that he doesn't understand that eating will get rid of hunger. I think we have go him to the point that he is hungry - he takes three ounces of high calorie formula around lunch time and nothing until dinner in the hopes that he will be hungry. I think it works but he doesn't have a clue what to do about it and I can't get enough solids in him for him to learn that it will get rid of the sensations.
That is where we are now. We feel like we really have a long way to go still because he is not really taking anything orally. We are looking for some help and some ideas. Dr. Lake says he only sees about a half dozen kids a year that will not eat at all and Dr. Duffy concurs. I'm hoping that there are some people in our group who have gone through an extreme situation like this. Most people just say, "Well, they'll eat before they go to college." But that doesn't help me a whole lot right now.
Adam cannot and does not throw up so the Nissen is working, but it has left other problems. Please have parents call me if they have been through this.
Name withheld on the web site.
The Question Mark Kid
Over the teeth and through the gums. Look out stomach, here it comes!! Hello, my name is Lauren and I am 9 3/4 years old. I'm going to write about my feelings on fundoplication surgery and my doctors.
I've had two fundoplication surgeries. When my parents and doctors explained to me why and how I had to have surgery, I was a little scared a frustrated. Then, like always my parents and I talked, and we realized that this was the best thing for my health.
Before the second surgery, when I went into the operating room and laid on the table, my mind was full of thoughts. "How was I going to feel after the surgery and what was going to happen to me? I saw Dr. Anderson smiling at me and all the other doctors and nurses were smiling, too. I began to feel more comfortable and relaxed. When I woke up after surgery, I was in very groggy and in a lot of pain. In a soft voice I told the nurse I was in pain and she comforted me with kind works and gave me some medicine.
Recovery wasn't as easy as I thought, and it was difficult to eat. It was almost four months before I could eat solid foods. I love to eat (but I'm not a pig!), and I missed eating a lot.
A year after my second surgery, I still have some problems related to [from?] the surgery, but my reflux and lungs are in better shape that before.
To conclude my short story, I would like to share my feelings about my doctors with you. My doctors have a very special place in my heart. They've always told me what's going to happen and what tests I need. I never left the hospital with all the questions answered, but they tried their very best to answer what they could. Once I told my Mom and Dad that my reflux and I were they question mark at the end of the sentence. I want to thank them for being such wonderful friends and especially, wonderful doctors. I respect and admire their confidence and warm hearts for me.
Lastly, if it weren't for my family's love and our faith in the Lord, I can't think of any way I could have gone through this. I've had a wonderful summer going to the beach and playing with my friends. When I feel sick, I take a rest, and then I'm ready for fun again!
Reflux Surgery- One Man's Story
When my doctor told me I should consider surgery to correct my reflux, I was almost relieved. I was only 38 years old, and didn't want to consider the possibility of taking medicines for the rest of my life. Although I never had surgery before, after twenty years in the military, I was certainly not averse to pain. My GI specialist said the procedure, called Nissen fundoplication, could be performed laparoscopically, minimizing recovery time. In short, I saw no down side to this option. The surgeon asked me why I thought surgery was a good idea for me. "What is this, a test?" I wondered. "Aren't you supposed to know why this is a good idea?" I told him that Reglan made me feel psychotic and that, in my opinion, it was the most dangerous drug in the world- perhaps the subject of another article- and that the other reflux controlling drugs had not been tested for their long term effects. This left me with surgery as my only option. He agreed that surgery seemed to be indicated in my case, told me that the laparoscopic procedure was relatively painless, and that I would probably be home the day after surgery. I agreed to go for it, and signed the papers.
As the surgeon promised, the surgery itself was relatively painless. The laparoscopic technique worked well, and although I was told I might need a morphine drip to control the post-operative pain, this proved not to be the case. What residual pain I had from this procedure was easily controlled by the Percocet and Demerol. In fact, I was overjoyed at how easy the procedure was.
This joy lasted for about a day, until the first time I was asked to swallow. It turned out that when I swallowed liquids, I experienced a sharp, penetrating pain below my sternum that lasted for a few seconds. It was intense, but bearable. But when I was asked to try to swallow food, things changed for the worse. My first food, Jell-O, caused pain of such intensity that the nurses and residents attending me grew concerned. I knew something was wrong when they brought in the crash cart and started administering Nitro. This was, for me, a harbinger of things to come. They thought I was having a heart attack, but as it turned out my diaphragm had gone into spasm, causing an intense hiccup fit. As far as pain goes, this was about the worst thing I could imagine. Although the spasm was clearly less serious than a heart attack, I couldn't imagine that it was any less painful in my current condition. I had now experienced how my newly formed gastro-esophageal sphincter muscle would react to the stress of having food sent through it. This reactive pain was far more serious and severe than that caused by the surgery itself. And worse of all, there was nothing anyone could do about it- unless I was willing to have them reverse the surgery.
It was decided that I would be better off if I didn't eat for a while. So I was kept in the hospital on an IV. After about a week with nothing by mouth, the hospital staff decided that I couldn't stay like this forever, that I would just have to gut it out, so they sent me home. But my dismissal was not long-lived. That same night, I had another incident where the spasms were so intense that my wife had to take me back to the ER. Again, I went through the same routine- crash cart, Nitro, and so on. Of course, I knew it wasn't a heart attack, but the pain was just as real. This time, I had a piece of food stuck in my esophagus (the first thing I ate after I went home). This resulted in an emergency endoscopy at midnight to remove the errant food, and several more days in the hospital.
I have always been a motivated, can-do guy, but now I was wondering if life like this was worth living. The spasms and hiccups repeated themselves for the next several months almost every time I ate- it was agonizing, grueling pain. I went into a deep depression- something I had never before experienced in my life.
Eventually, I learned that it was easier to cope with the condition if I simply cut back severely on my eating. I decided I would rather not eat than go through this pain. I consumed about 800 calories a day (about two cans of SlimFast.) I quickly lost 25 pounds, dropping from 165 to 140. I would have dropped even further, were it not for my relative inactivity and the steady stream of Percocet I relied on for months after the surgery to control the pain of eating. With time, the pain did subside. But all this lasted for more than six months. It's been over a year now, and although for the most part the pain is gone, I still suffer from dysphagia (difficulty swallowing).
The thing that really bothered me about this incident is nobody ever told me how painful it would be to eat as a result of the surgery. Pre-operatively, I was told all the usual stuff about possible reactions to the anesthetic, possible infections, accidental incisions causing bleeding- you know, the usual stuff they always tell you before surgery. But apart from an obscure reference to "a possible temporary condition where you might have difficulty swallowing," nothing was presented to me about this possibility.
Is everybody's experience with the Nissen procedure like mine? To tell you the truth, I have no idea- I haven't done much research on it. Perhaps I'm an exception. But then again, I don't care. If one in ten cases were like me, I wouldn't take the chance. Would I put a child of mine through this? No way, not unless his life depended on it. There are circumstances where GERD is this serious, but mine wasn't one of them. In any case, my story is something you should consider before you make a decision about what is right for your family.
Name withheld on the web site.
Fundoplication Saved Our Daughter's Life
Our daughter, Emily, was born with a mild case of reflux but a serious heart defect. Inefficient blood circulation meant that she needed lots of calories to pump blood faster and keep her body oxygenated. She had been on oral feedings that were supplemented with a nasa-gastric tube after a few weeks, but she was labeled "failure-to-thrive." The medical team wanted to place a g-tube so that she would get more nourishment and they wanted to do a fundoplication at the same time because it would aggravate the reflux that had not been a problem up to then.
We understood the need for a g-tube but we were not happy about the fundoplication. Doing such a permanent surgery that had a long recovery time and would leave her permanently unable to vomit or burp seemed like overkill for the situation. We worried about what would happen if she got the stomach flu. We had seen children in the hospital who got so used to being fed by g-tubes that they would lift their shirts as they announced that they were hungry. The thought of never having her eat normally made us cringe.
After procrastinating for a long time, we were still not ready to say yes. Finally, the department head sat us down for the "bad cop" routine. He had to be very blunt to convince us that our daughter would never get strong enough for the series of cardiac repairs that she needed if she was to live past her first birthday. We resented being made to face the fact that there was no choice. No parent should ever have to face a decision like this but we finally saw the gravity of the situation. Procrastination was no longer an option.
When Emily was three months old, she had a g-tube placed and a Nissen fundoplication. Another baby with some of the same problems got a g-tube the same day.
I can't say the recovery was swift or easy. For six weeks, poor Em screamed when we gave her even tiny amounts of formula. She gagged and retched and we cried with her. From the beginning we were very careful to give her tiny amounts of formula by mouth so that she would not forget how to eat. An occupational therapist showed us how to stimulate Emily's mouth and we found it helped to dip her pacifier in anything that tasted good - rootbeer was her favorite. As the stomach and incision site healed, she became able to handle the feedings and she no longer relied heavily on the night time drip for most of her calories.
Meanwhile, the other baby threw up most of what went into the g-tube. This subsided after a while but he still had his g-tube and significant reflux a few years later.
In only a few weeks Emily started gaining weight. She was downright plump when she started the heart repairs three months later. We weaned Emily from tube feedings at eight months but the doctors were so surprised at our success that they insisted on keeping the tube in until she was a year old.
The Nissen got her through successful heart repairs and is still holding even though it isn't necessary anymore. Combined they gave us a miracle: a happy, bright ten year old who can keep up with her friends in most activities - except belching contests.
Name withheld on the web site.
Summary from Caroline
In conclusion, it goes without saying that the decision to have surgery for your child is very difficult. However, when GER persists and presents life-threading complications, the benefits of fundoplication may outweigh the risks. there are times when the surgery is necessary and appropriate. It is not a guaranteed cure, nor should it be done just to avoid the hassles of lifestyle changes and medicines. Fundoplication is major surgery.
The information we have compiled seems very negative but one journal article reported quite positive results on a patient satisfaction survey. Of 38 patients (adults) who had traditional (open) fundoplication, 36 reported that they were "satisfied" during a phone survey and 34 "would have the surgery again under similar circumstances." For the 32 laparoscopic patients, 27 were "satisfied" and 29 would do it again. Peters, et al, "Clinical and Physiological Comparison of Laparoscopic and Open Nissen Fundoplication," Journal of the American College of Surgeons, vol 180, pp 385-93, April 1995.
I do have to add a personal view regarding this decision making process. One must have an outstanding rapport and relationship with your pediatrician, G.I., surgeon, and other specialists you may see. These physicians should be advocates for your child and communication and trust is invaluable to your child and family. Thank you Dr. Page, Dr. Self, Dr. Anderson, Dr. Agram, Child Counselor Susan Miller, and all the other wonderful caregivers involved with our family.
I think it is important to close with a positive thought about surgery itself. When all other avenues have been exhausted without a positive response, surgery can be a viable tool to provide a better quality of life and prevent life-threatening symptoms.
I hope we didn't scare you, especially new members. Most parents of children with GER never have to face this decision but is on the minds of many of our members.
Here's hoping you never need this information,
|Check with your
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