My 14 year old son had a bout with the stomach flu 10 months ago--diarrhea, low grade fever for 4 days. Since that time he has continued to have periumbilical abdominal pain, nausea, and significant weight loss. He was hospitalized twice this summer for dehydration, and lost 26# over a 3 month period. He was on TPN for 40 days at home until the central line became infected and was removed. His appendix was removed in September and periumbilical adhesions were lysed. A nuclear medicine biliary scan was repeated last week ( August result was 36% for gallbladder ejection fraction) with the result being 7%. An ultrasound of the gallbladder was normal. He has had every GI test available including a gastric emptying study. He continues to have nausea without vomiting, periumbilical pain, chest pressure, and sometimes icky tasting fluid in his throat within 20 minutes of most meals. He is on Prevacid, and Remeron for visceral pain. He just eats small amounts of bland food throughout the day. His weight is again decreasing. A Peds. Gastroenterologist has suggested he be seen by a surgeon for removal of his gallbladder, but the MD also cautions that gallbladder may not be the problem either. He has told us that a virus can damage the gallbladder resulting in biliary dyskinesia. We are desperately trying to find out what is wrong with our previously healthy, hearty eating son. We are concerned about another surgery which may or may not help. Is surgery the answer?
There is no clear answer (as you are experiencing). Surgeon comments that removal of gall bladder based on the HIDA study alone would not be recommended. There are some studies that suggest that those with low gall bladder ejection fractions do benefit in some cases - but this is not guaranteed. With conflicting views, I would suggest obtaining more opinions.
The difficulty here is that there is no definitive treatment for the condition. Surgery may or may not help the situation, but if there is no further course of action, it may be considered.
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.
It's hard enough to make such a decision when actually seeing and knowing the patient; so any comment from afar is of questionable value. However, as a surgeon who's done well over a thousand gallbladder operations, including many in which the only abnormality was seen on HIDA scan, I'd be reluctant to recommend surgery in the situation you described. The ejection fraction can be affected by many things including, in my opinion, just being "sick." It's not typical that gallbladder pain is periumbilical, nor is it expected to have such weight loss due to gallbladder disease without having more explicit abnormality of the gallbladder. In my experience, when there are no stones, successful relief of symptoms from surgery can only be expected when the HIDA scan shows both a significantly low ejection fraction AND the injection of the drug that makes the gallbladder contract causes reproduction of the pain symptoms. Even then, it's not a sure thing, but the odds are pretty good. Was the appendix abnormal? If not, what was felt to be the explanation for the adhesions?
In response to the surgeon's questions: During the biliary scan, my son's symptoms were reproduced, ie. chest pressure, nausea, and periumbilical pain, the ejection fraction result was 7%. The appendix itself was normal, but we were told there were adhesions around it like it had possibly been inflamed in the past. There also were adhesions in the jejunal region that we were told were congenital. The only other "finding" was an escalation of pain when barium reached the jejunum during an upper GI. The MD had considered doing a capsule camera study, but the insurance co. said it is investigational only for abdominal pain.
Have they done and scope and took biopsies to see what is going on pathologically? Sometimes this shows nothing other times it can pin point the exact problem. Before surgery you may want to ask for this to be done first. It is invasive, but easily tolerated and could possibly save your son from an unnessesary surgery. My daughter had her gallbladder out, with similar results from her hidascan. In March of 2002 it showed 35% ejection, then in Jan of 03 it was 5%. Dr said it had to go, so it went and her pain is better. She went several months after without much complaint, but now has GI issues again. She has an underlying disease though which contributes to all of this.
Also to the surgeon, if you see this, is it your experience that it takes a surgical biopsy of the deeper tissues to show eosinophils is eosinophilic gastroentritis? My daughter is on steroids every time biopsies are taken therefore supressing them. GI dr says that many times they show in the deeper tissues, but none of us really want anymore surgeries as she has had 8 in 2 yrs. What is your experience with this disease, I know it is rare?
thank you for your follow up comments. We have been to a large teaching hospital in Madison, and received no further help, or even apparent interest in our son's problems. Thank you for your ideas. We will continue our search, sooner rather than later.
I assume the scope also had no signs of reflux, which could be causing all these symptoms. Since your son is on proton pump inhibitors he could have normal scope and biopsies and have nothing but continued symptoms to show reflux. Does he complain of burning or chest pain? My daughter complained of both and also the complaints your son has. The drs finally did a surgery to tie off her stomach to keep the acid down. She never has reflux pain anymore.
It is very hard to find out the things that are not the obvious. Has he had extensive labs done to check for an underlying disease? What about an autoimmune workup, like an ANA, sed rate, CRP? Many diseases present with constitutional problems. My daughter has an autoimmune disease and they are famously hard to diagnose. They can have normal results and still have a problem. Such as with biopsies, it is very difficult sometimes to get the exact spot being affected, one dr told us it can be like you chances of winning the lottery to get just the right spot on biopsy. Also if things continue you may want to consider an expert opinion, from a well known teaching hospital. His weight loss is significant, and just knowing what a big deal drs make of our daughter losing 5 lbs, I would not drag my feet to figure this out. We have gone out of state to get opinions at the request of her drs. It was a good decision because even though we live in a big city most drs will never see her disease, and therefore do not know what to look for. If his weight loss continues, act sooner rather than later. Cincinatti Children's is one of the top rated GI centers in the US. I know of people that went for years without diagnosis, and they went there and had a diagnosis in a week. These hospitals specialize in the rare, and little known things. If I can help you in any way, let me know, as I have been there and done that.
We requested a copy of the biliary scan-ejection fraction results. Findings and impression per the radiologist are as follows:
There is rapid hepatic uptake and rapid hepatic excretion of the radiotracer. The gallbladder is seen by 10 minutes postinjection and the small bowel by 30 minutes post injection. The best ejection fraction is 7%. normal by this technique is 35%. Impression: 1. Patent cystic and common bile ducts unchanged from 8/5/03 study. 2. Gallbladder dyskinesia reproduced with symptoms.
Just a follow-up comment on our initial question. Our son did have gallbladder surgery 2 weeks ago. Pathology on the gallbladder showed an enlarged lymph node on the cystic duct which drains the gallbladder. Also, the surgeon commented on the unusual length of the bile duct, stating that it was long and U shaped--almost looped--which he felt could have caused periodic kinking of the duct. It was felt that either of these problems could have caused the gallbladder to not eject bile effectively, resulting in pain and nausea. We are happy to report that Nathan is doing very well now----no pain, and is starting to again eat normally!
I recently started having pain in my GB bladder area after a fatty meal along with positive Murphy's sign, slight elevation in lipase and wrapping pain to my back and scapula. My ultrasound was unremarkable except for two small 3mm X 2mm polyps, nowhere near the duct. My PA has said she has seen a case of GB pain with polyps resolve with no recurrence. My pain comes and goes. It seems less frequent now but more serious WHEN it does come on. I am scheduled to see a colo-rectal surgeon tomorrow and anticipate he will do a HIDA test with me. I am wondering, if I having GB dyskenesia, is this condition ever self-limiting or is surgery typically necessary? I was intrigued that it was posted that GB ejection can be effected simply by being being "sick" because I have chronic diffuse auto-immune disease and have been particularly sedentary the last month. I am not in any of the 4 "F"s of increased risk. I am a 39 year old man with otherwise good digestion. My father's family has had quite a lot of GB disease. I am also by profession a clinical nutritionist with advanced academic credential! But I have never treated anyone with cholecystitis or post surgery etc.. Any thoughts would be gladly appreciated especially regarding need for surgery in GB dyskenisa or can it be a "watch and wait" thing?
Another name for biliary dyskinesia is biliary colic. When we were looking for answers for our son, we found many web resources. It seems that biliary dyskinesia is a new entity, and there are still many unknowns in terms of dx. and surgery. We were told by several surgeons we consulted that people with ejection fractions of less than 14 typically do well after surgery. Our son's was 7%. We were also asked by the surgeon following his surgery if there was a family hx. of GB disease. He told us that our son's bile duct was unusually long, and U shaped to the point where they thought it could kink off from time to time causing symptoms such as he experienced. Good luck with your problems. I hope you find an answer
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