20 years of pain--what do I do next?

I have been suffering with severe pain on and off in the upper right quadrant of my abdomen for about 20 years.  I've been to several dr.s and when I tell them my symptoms, they say, "ahhh, gall bladder."  But, when they run tests, my gall bladder tests fine.  This has been going on for about 20 years.  Now, I have pain that's constant in the upper quadrant, it runs around to my back and up into my right shoulder blade.  I've had mid-back pain for about 5 years and many tests have found no explanations for this. I also have a spot mid-back that constantly itches, especially when I first take off my shirt at night. (I think it's gall bladder pain.)  Recently, the dr. that I've had for many years and like very much, sent me in for another ultrasound and HIDA scan.  The ultrasound tech said it looked to her as tho my gall bladder was thickening but the radiologist had the final say.  He said, all was fine.  I almost cried.  Next step was the HIDA scan.  I had that done yesterday and got the results today.  All is fine.  I was too upset with the results to ask numbers so I'm going to call back tomorrow, apologize to the nurse for "shooting the messenger" and ask for numbers.  I still believe it's my gall bladder.  There are so many foods that bring on the severe pain--onions, garlic, fried and greasy foods, pizza.  Sometimes, ANYTHING I eat causes an attack of pain.  I do get nausea for no reason, like immediately upon rising in the morning.  If I don't eat right way, the nausea starts.  (No, I"m NOT pregnant--no plumbing)  Sometimes, I just get waves of nausea and always have peppermint gum to help control it.  I'm at the end of my rope with this constant pain.  Does anyone have ANY suggestions as to what I can do now?  Do I just go to a surgeon with all my tests results and hope he will take it out and hope my insurance will pay part of it?  In the past, I've been told that even with the tests being inconclusive, I could still have my gall bladder out but, since the tests were inconclusive, my insurance may not pay for any of the surgery.  Help?

Sergant Bob posted on another thread about something he saw on television called the Spinchter of Oddi. It is part of the gall bladder/pancreatic duct system and when it's not working right, you have the same symptoms of a gall bladder attack (because it messes up your bile flow). I work with a lady who was in the hospital she got so sick and they thought it was her GB, but then, no, that's working fine, then they thought she had pancrea*** because she showed signs of an infection, but no, they decided that wasn't it either. They're still not sure why she was in so much pain, nor what was infected. I passed that Spinchter of Oddi information on to her too and she was going to ask about it when she goes to the doctor.

Also, has anyone checked you for pancreatitis? It too can look just like gall bladder attacks. My parent's dog actually has that and she will get diarrhea and vomit bile when it's acting up. They have some sort of medicine they can give her to calm it back down, though.

I can sympathize with you, though; I had the same problems as you for 5 years, but my gall bladder did eventually get so bad it showed up on a HIDA scan. But I was in that same boat of wondering how much it would cost if I paid out of pocket to get it taken out without a conclusive test result. ($12,000 5 years ago).

If your spinchter and pancreas aren't messed up, then ask your doctor this: IF your gall bladder was chronically inflamed (the problem I had with mine--hard to spot on tests), would an anti-inflammatory help it? If so, can you try taking it to see if it helps? Unfortunately, you can't know that a gall bladder is inflamed until you take it out and "autopsy" it. It will show up as not working when it gets bad enough, but you can't tell what's causing it to not work until you take it out. I wonder now if we had known that mine was inflamed, if an anti-inflamatory would have corrected the problem? Don't know; don't know if anti-inflammatories work that way. But if you've got nothing else, it's worth a shot, I'd think.

I'm in the same boat as both of you, except for not as long. I started feeling like absolute junk last summer - nausea 24/7, excessive burping, no appetite,and some discomfort in the center of my chest - like something was too tight. I've had a slew of tests that have ruled out any colon problems, pancreatitis, liver problems,gall stones, gastroparesis, bacterial overgrowth and ulcers. ( I also had a HIDA scan which showed 32% ejection.) My 48-hr. Bravo pH test showed that I had quite a bit of reflux, also a small hiatal hernia. So, they said I had GERD. My GI didn't think that the 32% was low enough to cause my problems. Since Christmas, I have tried 3 different PPI's which haven't helped. I have also started having discomfort in my URQ - pressure like a golf ball at times, occasional burning along rib line and and in right back, and once in a great while, shooting pains that come and go quickly. Now, my GI thinks that it might be gall bladder related since the PPI's aren't doing anything. She sent for a second HIDA scan 2 weeks ago. When I got the 2nd injection, after 5-6 minutes, I felt the burning progress from the center along my front ribline to under my arm, then came the golf ball pressure under my right breast. After 22 minutes, they realized that the IV had come unhooked and some of the stuff had run all over my arm. So, they had to start over with another 2nd injection. They assured me that everything would still work OK. I was sure that this would be my definitive test and was so dissappointed when I learned that the ejection fraction was 50%. Much to my surprise, my GI said that I should still consider getting my gall bladder out because I have gall bladder symptoms and nothing else is turning up and PPI's aren't helping. She said that she had a patient last month who felt exactly like I do, with an EF = 50%. She had gall bladder out, feels fine now and said that she wished she'd done it sooner. I have read other posts on forums from people with symptoms, but normal EF's, who have gotten better after surgery. I feel absolutely awful, really nauseaous constantly, worse in the morning, no appetite, lots of indigestion plus the discomfort in the RUQ which comes and goes. We decided that in the next month, I would try 3 more medicines (Protonix, Carafate and Reglan). If they don't help, I'm going to visit a surgeon. (I already went to one back in the fall, before I even had much RUQ discomfort, and he said that he would remove my gall bladder because my symptoms could be that.) I guess I would encourage anyone who has thoroughly been tested for all other upper GI disturbances to pursue the gall bladder thing, if you have the symptoms.

Keriamon - Thanks for your input. I questioned the validity of the test, too. The lady doing it assured me it would be OK. I told my doc and at first, she rolled her eyes. Then said that she had faith in the people doing the test. What you say makes sense, though. The first injection was a shot. Then I laid there for an hour while it went to my gb. Then they put an IV in my arm and began to infuse the stuff to make my GB contract. That was supposed to take a half hour - it was going fine for at least 5-6 minutes because that's when I felt the discomfort. Then for some reason, the tube came apart. When they checked it at 22 min., the stuff was all leaked out on my arm and my blood was coming back up the part of the tube that was still in my arm. Then it took them 15 more min. to get a new batch of the 2nd stuff. They then started to infuse that into my arm for another 30 minutes. So, you're right, I got one and a half batches, but who knows how much the first one had decayed when the second one came around. ????? I might ask for another one when I go back in a month. My Dr. did say that is was strange that the first HIDA was so much lower than this recent one. I actually feel worse and have more symptoms now than back in the fall. My husband says to quit screwing around and just get the darned thing out.

Sciencelady--I, too, felt awful after my HIDA scan. I'm sure it was my gall bladder that ached--read-HURT--all day and, that night, when I went to bed, I couldn't go to sleep because my gall bladder was throbbing something fierce!! I also felt quite a bit of nausea. I think, after having put my g.b. thru its paces that day, it was reacting--violently. I have found that diet Ginger Ale helps with some of the nausea. My dr. did get me in to see a surgeon on Monday. I'm quite ecstatic! Now, if he just has a trick to getting this taken out AND getting the insurance to pay, all will be well.

I saw a surgeon this afternoon and he won't take out my gall bladder.  He said being a surgeon is what he does to earn a living and he likes it but, he couldn't justify taking out a gall bladder that, by all intents and purposes, looks all right.  He said that doesn't mean the symptoms I'm having aren't gall bladder but he didn't really think taking out my g.b. would help the symptoms.  On some level, I have to respect him for his decision not to do the surgery and earn a fast buck.  On another level, I was very frustrated.  I asked about all the years of pain I've experienced and he assured me that it will go away because I'm getting older.  I assured him that I did not want this pain another 20 or 30 years.  I thought about his comment on my way home and  by saying "it will go away--you're getting older" means eventually I"m going to die and THEN my pain will be gone.  So, I live with my pain another day or two or 50 knowing there must not be anything wrong with me that death won't cure.  (and, no, I"m not suicidal, just very, very frustrated.)

The surgeon said I would be hard-pressed to find a surgeon who would take it out. He said, even though I have all the symptoms, the tests say it's fine and because of how the g.b. lies, there are major risks in having the surgery, even with a diseased one. Plus, he said since the g.b. tests fine, taking it out would probably not get rid of my pain. I don't quite understand his reasoning there unless he thinks there's something else causing the pain. I don't know what that could be as I've had colonoscopies and MRI's and other tests by the dozens. Plus, I've been "skipping" around to dr's for several years now having this tested and that tested and, after a while you think, why bother? They aren't going to find anything wrong with me. So, I have just learned to live with the pain and will continue to do so.

I am very sorry to hear about your pain, and even more sorry to hear about how long you have had it. I have been trying to figure out whats wrong with me for about 4 years, and i guess i am stuck on IBS, but 20 years of pain has got to suck a lot more.
What types of pain are you having, like just pain or going to the washroom upset stomache type of thing, and have you ruled everything out?

Sciencelady.
I have a very similar problem going on. no crazy pain like most gall bladder problems but im positive its my gall bladder. nausea eminating from the gall bladder area. Ive had green stool for months although not for a long time. The nausea comes and goes. sometimes it stays for days, Recently i had somthing similar to a gall bladder attack where my problem got very bad in the course of about an hour. and now ever since every thing is worse. I had drank alot of water and found it helps to thin the bile and ease the symptoms however i must of passed some sludge or something cause things really flaired up.

Thanks, I have had a hida but it was ok. At the time i wasnt having problems. It actually made me beleive it wasnt my gall bladder. Untill these symptoms arose so quickly i wasnt sure.

No i havent. And actaully I have asked for one and my doctor said "colon cant cause nausea". At the time i took his word for it.

I am convinced that if you are not in the middle of a GB flare up, it will not show up on a HIDA scan. I was not having a lot of problems with mine duinrg my first two tests, which were inconclusive and negative, but it was rather bad when the third one FINALLY positively identified it.

Isn't 14% an automatic diagnosis of a bad gall bladder?

BTW, mine was chronically inflamed. I'd have good spells and bad spells depending on whether or not it was inflamed. They didn't know that until they took it out and dissected it, though.

I am very happy to say, I first posted on here about 4 years ago looking for answers to help get rid of the constant pain I had in the upper right quadrant of my abdomen. I'd had test after test, seen doctor after doctor, even talked to a surgeon who refused to take out my gall bladder. In March of 2009, I went to the doctor with symptoms they thought might be heart. They put me in the hospital immediately, hooked me up to monitors, ran tests, gave me nitro, kept me for observation all to no avail. I even went back in a week later for a stress test. The doctor who ran the test told me whatever brought me to the hospital, it was NOT my heart. I headed back to my regular doctor.
She put a call into the surgeon I had seen a year or so before who told me he would not take out my gall bladder. She had actually worked with him in her residency and was, in essence, calling in a favor. The surgeon scheduled me for surgery. Was it wrong to be ecstatic about surgery?
After surgery, the surgeon said to me, the gall bladder had been very badly infected at some time in the past and the ometum, a layer of fatty-like substance that hangs like a curtain over the organs in the abdomen to protect them, had wrapped up my gall bladder to keep the infection from spreading to the rest of my body. He said he expected great things from my surgery. (This from the doctor who had refused to do this surgery a couple of years earlier.)
It took about a year before the digestive system was back to normal and, even now, when I eat a meal with grease, I have pain. My chiropractor said the bile can still become inflamed even though the gall bladder, which is just a storage "tank," is gone. But the intense, constant pain and nausea are gone and I am feeling so much better.
The upshot is to persevere. I know I can say that now but it took 20 years to get someone to finally take out my gall bladder. It almost makes me angry to hear of people who have one attack and have their gall bladders taken out. I know there is a danger with any surgery and that was why they didn't want to just "rip out" my gall bladder. That, and I assume, the risk of being sued for malpractice. I had to sign a form that said, if this surgery didn't stop my pain, I would not sue the doctor. It was worth it.