Why bother with HIDA scan if GI thinks it doesn't matter?

[gardenmaniac]

My 19 year old daughter had a HIDA scan last week, after all other tests came back negative. The results were "delayed filling of the gallbladder after 60 minutes, indicating chronic cholecystitis. Morphine given to get gallbladder to visualize. Ejection fraction of 32 percent over an hour, after given 8 oz of Ensure orally. "

We were at the hospital over 4 hours. The technician doing the test wasn't even sure the radiologist would want the emptying part of the test. He thought they might have enough without it.

I called the GI's office to get the results.The nurse read the report to me. We went to the GI's office yesterday. He came in the room, then told her he couldn't find anything organically wrong with her. I asked about the HIDA scan (I wasn't supposed to know) & he said he hadn't read it yet. he quick scanned it & said, "well..your gallbladder is a little abnormal..but nothing to do anything about. Come back in 4 months."

She has been searching to find out what is wrong for 18 months. Her symptoms were vague at first..then became more classic of gallbladder. RUQ pain, nausea, occasional vomiting, pain after eating, pain that has woken her up at night. We did the GI to prescribe Tylenol 3, but he didn't want to. Yesterday, he said that if she needed that, she would have to go somewhere else.

Nothing showed up on an ultrasound 16 months ago, even though that was where pain was. (and having test done was VERY painful)

We have an appointment with a surgeon next week. Are we out of line to pursue this? Has anyone had surgery based on HIDA scan alone?

[roxnsox]

Tylenol is bad for the liver.  She is apparently having some liver "symptoms" so I would definately NOT take any tylenol.  Why do you want to remove a part of the body?  It seems so unnatural to me.

[wolffs5]

I understand how you feel!  I have been having the same exact problem for a year in a half now.  Had all the tests done.  This week I had a HIDA done & last night the nurse called me & said it was normal.  No other info, no doctor to talk to.  Just it's normal & make an appointment if I'm still feeling bad!  Which I find strange, because the tec doing the test said my gallbladder was emptying slow.  And when I drank that drink it started to hurt within about 5 minutes.  All the tecs said, good maybe we found your problem today.  I have 3 kids under the age of 9 & I also have Multiple Sclerosis.  I need this pain to go away!  Does your daughter ever get the pain on a empty stomache?  I hate doctors!  I would go talk to the surgeon!  I may do the same.  About 2 months ago when I could no longer take the pain, I went to the ER for the 1st time.  The found nothing on the ultrasound, but the ER doc felt it was still my gallbladder and refered me to a surgeon.  The surgeon wanted me to go to a GI specialist to make sure it wasn't a ulcer or something else.  (Which nothing elses was found after a endoscopy).  He told me at that time if nothing come up from those test to come back to him & he'd take out the gallbladder.  I don't know if he said that to humor me or if he meant it.  So I am now debating calling him for his opinion.  I also called the hospital this morning & I am getting copies of my HIDA scan.  I want to read it for myself!  Sorry for this being so long.  We are in the same boat!  FRUSTRATED!!!  (If you do talk to a surgeon, post & let us know what he said).

Lori

[MAVA]

I have a coment you might need to know ,I had my gallbladder remove 4 months ago and I still having the same symptoms, so be sure is your gallblader before they make the surgery ...... I know how frustrated is. but keep pushing the doctors until they have a clear problem.

[Lor]

Most gastro Drs recommend removing the gallbladder if the Hida scan comes back functioning below 40%. Your daughter is very close to that. I'm not sure about how they did her Hida scan. Sounds a little unusual to me. Mine took about 45 minutes, and wasn't given ensure to drink. They want you to have an empty stomach. A Hida scan is use to see how well your gallbladder is contracting or pushing out the bile. It can also be used to chack for blockage in the bile ducts.

[nadia]

Chronic cholecystitis (chronic gallbladder disease) is not reversible.  Why would you even hesitate to have it removed?  I lived with the agony of attack after attack until it finally became chronic and every doctor I had seen blamed it on IBS. Finally my Gyno. told me to get that thing out.  No one even suggested a Hida scan.  I had that after the fact.  My attacks have since stopped but since I had no stones I now am investigating the pain I continue to have.

[5fan]

First let me warn this is going to be a long post and I DO NOT WANT TO SCARE ANY ONE!!!!!!!

The reason why you have a gallbladder out (if it is remotely the problem) is that believe it or not it can cause other problems.  Take it from me.  I ignored the attacks I was having for over four months.  That's four months of full blown, I think I'm going to die, no, I know I'm going to die, attacks.

Finally, when my abdomen went rigid and I could hardly fill my lungs with oxygen to breath I went to the ER.  I was one of those people who suspected it could be my gallbladder, but I'd have it out when I got ready.  STUPID ME!!!!!  I did not realize the damage your gallbladder and potentially do.

I presented at the ER with a temperature of 99.4 (technically not considered elevated by the ER physician assistant).  I only vomited to make myself feel better.  I just plain and simple had pain like I had never experienced before and was having problems breathing.  After four hours in the ER waiting room I was taken back to the ER curtain area.  They could not get an IV started on me because I was so dehydrated because I had not eaten or had any thing to drink in more than 24 hours due to nausea.  Finally on the fourth stick the IV was in.  I was sent for abdominal x-rays and sonogram.  

I was admitted with an "enlarged" gallbladder with a "thickened wall" that according to the PA would have to "come out sometime".  My major problem was I had pancreatitis.  My liver enzymes were elevated and my pancreatic enzymes were "off the chart".  I was told by my regular MD the next day that if I were 50-60 years old I would have only had a 50/50% chance of survival.  Luckily, I'm only 31.

I spent six days in the hospital going through numerous tests to find gallstones that did not exist.  I was not allowed anything to eat or drink for four days (not even ice chips - only allowed to brush my teeth once a day) so they could get the pancreas under control.

Finally when I did have my surgery they removed the gallbladder and still no stones found.

I FOR ONE HAD NO IDEA THAT YOUR GALLBLADDER COULD CAUSE PROBLEMS WITH YOUR PANCREAS OR THAT IT CAN ACTUALLY RUPTURE IF IT GETS BAD ENOUGH AND IS LEFT UNTREATED.

My advice is to find another GI for a second opinion or go to the surgeon.  Take whatever test results you can get with you for them to review and see what they have to say.

It sound as thought a number of us on this site have the same problem.  Gallbladder removed, but still having problems.  I still have what I would classify as gallbladder attacks and asked the surgeon if he was sure he took it out!  My GI now says that whatever my problem is (unable to diagnose it at this point) it was most likely what caused my gallbladder to "go bad".  I know he is now looking at SOD (sphincter of Oddi dysfunction), but isn't sure about that yet either.

I wish you all well.  I just wanted to share my story as a reason to have a gallbladder removed.  I'm sure there are pluses out there for not having it done, but I'm alive today because it is gone.

5fan

[gardenmaniac]

Just to clear up a few details..my daughter's HIDA scan is the ONLY test that has shown ANY abnormality. (delayed fill and 32% ejection).. the ultrasound from 16 months ago showed nothing. she has had 2 EGD's..the one 3 weeks ago showed minor gastritis. 2 full sets of blood work ups..almost identical results, everything in the "normal" range..3 weeks apart..Her pain level varies..it has been less this week than it was a few weeks ago..but she is still nauseaus every day & has some degree of pain after eating anything...

A question for those of you who have had it removed & still have pain: Did the doctors find problems with the gallbladder upon examination, after removing it? None of you had it removed & the docs said.."hmm..this is a perfectly healthy gallbladder".?

Thank you everyone for your willingness to share..my co-workers just really don't want to talk about gallbladder "what ifs"..& "whys"

We see a surgeon next week...is there anything specific I should be sure & ask him??? I have been told that the HIDA scan is the "gold standard" for gallbladder problems..& that ejection fractions under 35% are considered nonfuctional enough to do surgery...why did this GI doc not react that way? Just her age? does she need some test result in addition to the HIDA? aren't the symptoms plus the HIDA results enough??? Sorry..but I just don't understand & the GI obviously was done with us..

[nadia]

Having spoken with the surgeon about the cholecystectomy, he told me that the entire surrounding area around the gallbladder was inflamed.  I wanted more information so I called the pathologist who told me that the gallbladder was herniated and cystically dilated.  In other words it was on it's way to rupture, and believe me you Do Not want that to happen. Prior to surgery all my tests were normal.  And I have had numerous tests non stop for almost 2 years.  This experience has taught me that doctors are no different than you or me.  They have their own biases and egos and they tend to intimidate us to the point of submissiveness.  Trust your instincts and do the research, because in the end it is you that will determine the outcome.

[Lor]

It is not unusual to have only the Hida scan come back abnormal. They use the Hida scan after everything else has failed. Most people who have their nonfunctioning gallbladders removed. Go on and never have another problem with it. The people some of the poster have talked about are only 10% of the case. I just happened to be one of the 10%. Talk with the surgeon and make a decision that will be of help to your daughter. 32% still has a way to go - mine was at 15%. The problem with waiting is that you don't know when it finally shuts down - if it does. Gallbladders can turn gangrene as they die off. Which is another story. Becareful and make a choice that is good for her.