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biliary dyskinesia and/or sphinctor oddi dysfunction

I have been suffering with so called 'IBS' since I was a child(43 now) Recently, I have become really poorly with right upper quadrant pain and been rushed to hospital and been off work for 6 months. I have had every test possible to finally find out from a HIDA scan I have biliary dyskinesia and possibly Sphinctor Oddi Dysfunction. I have had two specialist with conflicting opinions; one has said not to remove the gallbladder as if i have SOD it wont improve things and i'll end up with the operation anyway, which can be high risk(the reason for this is I had an MRCP - pancreas pressure test come back normal so their not sure for definate) I really require a ERCP but the one doctor feels i should take the gallbladder first rather than risk the other test, which can cause pancreatitis.
I was admitted again two nights ago, virtually unconcious and given Buscopan(anti-inflammatry) to stop the pain.
This disease gives the most bizzare sypmtoms(i.e.breathless, fatigue,itchy bite-like spots on the face and neck, right groin pain, effected vision, severe bloating, weight gain and poor weight loss, headaches, swollen lymph nodes behind the ears  - the list goes on)
My question is: has anyone going through similiar problems and also in deciding what best? they seem to be leaving the decision to me, is anyone having repeated urine infection with blood and protein presant? Are others finding their off work.
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Avatar universal
JUST GOT HOME FROM THE CLEVELAND CLINIC AFTER HAVING TRANSDUODENAL SPHINCTEROPLASTY ON OCT.11,2012. I LIVE IN INDIANAPOLIS AND IT TOOK A WONDERFUL DOCTOR IN CLEVELAND TO HELP ME. IM NOT GOING TO SUGAR COAT ANYTHING, THE SURGERY IS VERY PAINFUL FOR THE FIRST COUPLE OF DAYS BUT I HAVE BEEN DEALING WITH SOD FOR 23 YRS. IVE HAD A FEEDING TUBE FOR THE LAST YEAR AND I FINALLY GET TO HAVE THE TUBE REMOVED NOV. 20,2012. IVE NOT HAD ANY PAIN (SOD) SINCE THE SURGERY. I WOULD HAVE THE SUGERY IF ANY OF YOUR DOCTORS RECOMMEND IT.
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Avatar universal
Hi There,

As you know, I have sphincter of oddi dysfunction.

I have urq pain every day, which wraps around to under my shoulder blades and up under the V of the ribcage....everything gets very tender to the touch and is accompanied by nausea.

Please do not hesitate to contact me if you need any information....if you're on facebook, there is a group called sphincter of oddi dysfunction and you can join and learn lots from people's experience......

I hope you can get some answers and relief soon

Kind Regards
Sarsi
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Avatar universal
Thanks a lot for your kind words
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Avatar universal
MEDICAL PROFESSIONAL
Hello and hope you are doing well.

As I gather you have groin pain with a swollen abdomen. This swelling is accompanied by an aching pain just below the ribs more likely to be in the area where the kidneys are located. The swelling and the pain indicate most probably a disease of the kidneys, more so as the urine analysis is positive for protein and blood. Now when you meet your doctor the following tests may need to be done. Assess the kidney function; this is done by a blood urea and creatinine and sometimes a GFR (glomerular filteration rate). Assess the kidney structure, with an ultrasonogram, an IVP (intravenous pyelogram), here a dye is injected to study the kidneys. Sometimes a CT or MRI may throw more results. Please consult your primary care physician for further evaluation.

Hope this helped and do keep us posted.
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1972289 tn?1325877810
I'm sorry you're dealing with this!  It sounds like a tremendous amount of pain!  I haven't dealt with this, but I have been in other situations where the doctors have left decisions up to me... it's a hard position to be in!  Let us know how you decide to go forward!  Good luck!
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