- CASE FILE
I have a complex medical case but badly need help with the causes of my severe, constant abdominal pain that started post-cholecystectomy.
ABOUT THIS CASE FILE
I am so desperate for help, and every second of every day is consumed with a horrible, unbearable “gnawing“ pain that is just above my belly button and very localized. When I eat the pain gets bad enough that I literally have lost consciousness unless I chase food with pain medication or get fed through my Mediport with TPN. This started the minute I woke up from a laparoscopic cholecystectomy (gallbladder removal surgery) in early 2006, and has never gone away for a minute. I have tried so many medications and therapies and blocks and procedures (I keep trying local lidocaine blocks and even experimental PRP, and while the local tenderness has been helped somewhat by these, the overall and constant pain and the flares when eating have not resolved at all). None of the dozens of doctors locally, at Johns Hopkins or at Mayo Clinic have any idea what else to offer. Initially I got acute pancreatitis after the gallbladder surgery, but that appears mostly controlled and not the cause of this particular pain. I have an extremely complex medical case overall with way more diagnoses than I am able to list here, which has made it even more difficult for anyone to help me with this particular issue and life-altering pain. I feel like many doctors have given up before they even try. If I could only change one thing in my whole life, medically or otherwise, this would be it. It would allow me to be off of the opiate pain medications I chase food with (the only way I am able to get nutrition without being hospitalized), and would allow me to regain so much of my life that I have missed for so long. Please note that many of my overall symptoms seem to progress throughout the day and into the night/overnight hours, including pain progression in general, as well as fatigue and weakness, even choking on food into the later hours. Myasthenia gravis was suspected but is currently being ruled out (hopefully). Nothing seems to explain this very localized but horrendous abdominal pain that consumes my life. I would be so incredibly grateful for any help or even an ounce of hope. Thank you in advance, from the bottom of my heart.
Other main diagnoses include, but are not limited to the following (I always fear giving TMI, but don’t want to leave out anything that may give a clue to someone trying to help, although I’m sure much of this is unrelated to the problem I am asking for help with here) : Secondary adrenal insufficiency, mixed connective tissue disease, dysautonomia/POTS, history of several severe head injuries ( including TBI, coma, post-concussive syndromes), cervical spine injury resulting in an ACDF (2010 fusion); also hardware in lower back, recurrent pleurisy (better on Plaquenil and steroids), recurrent pernicious and iron deficiency anemia (also better on Plaquenil and steroids), numerous medications and allergies limiting treatment options, reactive hypoglycemia, hypoaldosteronism, Ehlers-Danilos is classical type, hiatal hernia, severe gastroparesis, nasopharyngeal reflux and GERD, neurogenic bowel and bladder from spinal injury (some residual spasticity and clonus), fatty replacement and decrease in size of pancreas, vocal cord dysfunction, history of hepatitis A (viral with mono in 1987), easy bruising, several incidents of severe sepsis, dermatographic urticaria, recent additional thoracic spinal herniations and rupture and lumbar spine (current loss of sensation in left side of face from C-spine), history of angioedema, recurrent pseudogout, severe osteo and inflammatory arthritis through most large and small joints, history of stage III chronic kidney failure (currently WNL), history of kidney cysts and stones.