Discussions By Condition: I cannot get a diagnosis.

I am at a crossroads: looking for advice.

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: alveolar21
  • November 12, 2011
  • 11:56 PM

I posted before—that during a colonoscopy I had jumped during the procedure; after I awoke I had “stabbing” LUQ pain in the spring of 2010. The gastroenterologist recommended I see a surgeon; the surgeon ordered a HIDA+CCK scan in the summer of 2010. This scan showed a 22% ejection fraction rate; however, the technician injected the full amount of the solution in < 30 seconds. After the scan I had extreme burning and pain in the RUQ (assuming the gallbladder) for 3-4 weeks.

The burning subsided but now I have pain if I bend over to tie my shoes or I “move” the wrong way; even lying on my right side in bed at a certain angle causes pain, forcing me to switch positions. Follow-up included a second HIDA+CCK scan with a different lab technician who noted the injection process should occur over a 2 minute period, which is what the technician did. The second scan showed 56% ejection fraction rate and no pain at all. I’ve also had X-RAY, MRCP, CT, VQ/LUNG, Ultrasound scans and lots of blood work done, all unremarkable.

Ready to give up, I requested a diagnostic laparoscopy; the surgeon found an adhesion in the LUQ between the splenic flexure and the lateral abdominal wall and this is what was causing the “stabbing” LUQ pain.

During the laparoscopy, the RUQ was unremarkable. I still have lingering LUQ pain but its only 10-20% of what it used to be before the adhesion was removed. The RUQ pain continues to be painful every day. Any type of movement in which the abdomen is involved such as tying my shoes or walking, I can feel the pain start to get worse. If I sit the wrong way in a chair (leaning to the right), the pain increases.

Given that the diagnostic laparoscopy of the RUQ was unremarkable and the second HIDA+CCK scan was 56% (normal) the only other safe thing to check for was the biliary tree by endoscopic ultrasound (EUS) that too was unremarkable. The only thing left is an ERCP with manometry to check the pressure of the sphincter of oddi (SOD) and I’ve heard it has a high complication rate and every gastroenterologist I have seen would not even offer it as an option.

I have tried many different medications, I’ve tried changing my diet, I’ve tried different exercises and nothing seems to fix the problem. It is almost if during the first HIDA+CCK injection caused the gallbladder to become inflamed and since then it has never resolved itself.

I’ve submitted my case to Mayo Clinic in 2010 but they rejected my case. Later, my primary doctor suggested I try again in 2011, I submitted again following his advice and again, my case was rejected.

So now I really only see two options:
1. Do nothing and live with constant RUQ pain every day for the rest of my life.
a. Having constant pain really changes how one lives his/her life and also impacts the overall quality of life.
2. Get the gallbladder removed and see if that “fixes” the problem.
a. Risks:
i. As people have posted on the forums, sometimes things go wrong and they are worse off than they were before they had the gallbladder removed.

If you were in my position, what would you do?

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1 Replies:

  • My heart goes out to you..I have a daughter who just turned 19...she has had RUQ "pressure"for the past 4 years, ever since she had her gallbladder removed. She started with pain and we went through many tests..ultrasounds,scope down the throat,MRI,finally the HIDA scan revealed gallbladder working 1%. We had just started taking her to a psychologist because they suggested it was all in her head. Long story short gallbladder was removed and the previous pain was replaced by a debilitating "pressure". 4 years later she has dropped out of school and sees hardly any friends, barely leaves the house or gets out of bed. The more she moved or exercised the worse it was. Many doctors later ( including gastroenterologists,chiropractors,internests,OB-GYNs,hormone specialists,etc.) we found an MD who leans to a more wholistic approach...even though we were thinking more and more it could be adhesions (and no dr. wanted to go back in and check) This brings me to the reason I'm responding to your thread.My daughter has begun receiving FSM treatments (Frequency Specific Microcurrent). You may wish to google this.She felt immediately much better after just one treatment...she said the pressure went from an 8 to a 2...It lasted for 4 days and then we went to a function and walked ALOT and she was hurting again. We have been for 2 more treatments and she is like a different girl! She feels so much better and after 4 years its like a miracle. I must say I was very skeptical of this treatment, I thought it sounded hokey BUT I can't argue with the results.Possibly it could work for you. Good luck!
    mom22girls 1 Replies
    • November 20, 2011
    • 03:51 AM
    • 0
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