Pain (possible sources of)
My adult son still struggles with periods of pain following gall bladder surgery. Recently, he was diagnosed with Levator Ani Syndrome, which is intermittent rectal pain caused by spasm of the levator ani muscle (situated on the side of the pelvis). Some treatments have helped but only temporarily. Are there other sources of pain we should be exploring?
The obvious challenge here, of course, is that your son can't tell anyone where his pain is. From the details provided, I'm assuming that the pain is primarily in the abdominal area. Even pain around the sacrum (tail bone) and rectal area could still be related to abdominal discomfort.With that assumption in place, then the logical workup is to look for and/or treat problems with abdominal organs, or structures that sit behind the abdomen. So, thinking anatomically and with what we know about CdLS: Stomach and intestines: * Gastritis/reflux? Could consider upper GI series with small bowel follow through, if he hasn't already had this, and upper endoscopies. Empiric medication trials could include strong antacids, or other medications specific for reflux. * Delayed gastric emptying? Symptoms could include getting full and stopping eating after only a few bites, and symptoms often are worse after eating a meal. Consider a gastric emptying scan for diagnostic testing. Medications often used include Reglan or Erythromycin (but I don't think I would try one of those unless a test suggested this diagnosis). We do know that bowel motility us decreased in CdLS. Liver, pancreas and associated ducts: * Sphincter of Oddi dysfunction? Even though the gallbladder is gone, there can still be delayed emptying of bile through the biliary ducts (which connect the liver to the intestines). Sometimes a HIDA scan is used to assess this. A specialized upper endoscopy (ERCP) or specialized MRI (MRCP) is sometimes helpful diagnostically. * Pancreatitis or pancreatic insufficiency? Symptoms are usually worse after eating, but not necessarily. Lab tests would include pancreatic enzymes (lipase and amylase) looking for pancreatitis, or some stool tests looking for pancreatic insufficiency. Empiric trial of supplementing pancreatic digestive enzymes might be informative. We have seen pancreatic dysfunction occasionally in CdLS. Spleen: * Pain would typically be in the upper left part of the abdomen or back. There might be anemia. The spleen might be enlarged on physical examination (or more easily seen with a CT). This strikes me as an unlikely diagnosis, especially in CdLS. Kidneys, bladder and prostate: * Kidney stones? Pain with urination is a common symptom. Urinalysis might show blood and/or crystals. CT or ultrasound would be the diagnostic tests. * Bladder problem (infection, tumor, inflammation)? Again, pain with urination and/or blood in the urine would be suggestive. Cystoscopy might be the diagnostic test. * Prostatitis? Could be an explanation for pain around the rectal area. Check PSA test (look for elevated level). Rectal exam might reveal an enlarged or tender prostate. CT might show changes in the prostate, although sometimes insignificant and unrelated things are seen in the prostate, so it can be misleading. Spine, back bones and muscles of the back: * Sounds like that has already been pretty thoroughly investigated, but MRI or CT might show additional problems that weren't seen on x-ray. Other, not organ-specific. * Growth or mass somewhere in the abdomen? Consider a CT of the abdomen. * Celiac disease? DO NOT RESTRICT GLUTEN UNLESS THIS DIAGNOSIS IS CONFIRMED!! It is impossible to confirm or rule out a diagnosis of celiac disease or gluten sensitivity if gluten has already been removed from the diet. Lab tests are Gliadin IgA, Gliadin IgG, Endomysial IgA and Tissue Transglutaminase IgA, plus a measure of total IgA levels (because some people naturally have very low or undetectable levels of IgA, making the above tests useless). The gold standard test is upper endoscopy with biopsy of the small intestine. This has been shown not to have an increased incidence in CdLS, but can still occur. While that's a long list, I'm sure I've left out many other possible causes of pain in this part of the body. Hopefully there are at least a few things that can be pursued without too much difficulty (I realize that many of the tests I've listed aren't very easy to do). The approach should be thoughtful and proceed as if he does not have CdLS. HL - TK 3/25/11
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