MRI MRCP - Cyst (IPMN) - Newbie

Yes, I will post further as I obtain more information, My health insurance company is sending a NP out to visit me on 9/7/2022, and that will give me a great opportunity to ask some questions that I would not ordinarily ask of my male doctors.
Thank you again for you kindness.

I did receive this to a question I posed to my doctor, and it took me a while to understand the response. We discussed the procedure in the past, which has a 50% success rate, and he discouraged me from undergoing the procedure as I could wind up with chronic pancreatitis. I am also wondering if there is a genetic component to my problem, as I have a sister with pancreatic disease. Her pancreas has stopped producing insulin so she gives herself 4 injections each day. We are estranged from each other so I am unable to ask any questions about her health.

FROM MY DOCTOR
The radiologist is saying that the bile duct is dilated and that this may be due to sphincter of OD dysfunction which I had described to you before. Sphincter of OD is the little door/valve between the bile duct and the small bowel or entrance into the bile duct when we do the ERCP procedure. We discussed in the past that if the sphincter of OD is not functioning well and has high pressure, it can result in abdominal pain and dilated common bile duct. This was the reason I mentioned ERCP and cutting the sphincter to see if it resolves your abdominal pain.. However, I also mentioned to you that there might be only a 50/50 chance that your symptoms will resolve.
Thank you,

In yesterday's mail I received the referral to a liver specialist in San Francisco. While I had anticipated the referral to arrive, I had an overwhelming response and sense of dread about the document as it caused me to think that my condition is "real", for lack of a better word. I will contact my Medicare Advantage Plan on Monday as they do offer transportation assistance and will also make the appointment for me. I do not have a car.
I am still frustrated with the way my "friends" and neighbors and even my family are reacting to my physical change. I spoke briefly with my sister yesterday afternoon and told her I was planning to get a haircut. I do wear my hair short and am always complimented on the way that I look and it is very stylish. She commented that I should let my hair grow as with short hair along with my weight loss I would clearly look like someone undergoing chemotherapy, and it is no wonder people look away when they see me now. I emailed her earlier in the week asking if she could stop by for an hour to talk to me about my feelings about my condition, knowing full well that we were raised in a very toxic environment, and no one was allowed to talk about their feelings and things of that nature. She never responded so I later sent another email apologizing for asking her for support as she does have a lot going on in her life. I have no family support and her comment about my hair threw me off. I still plan to get my regular hair cut, and if people think I am undergoing chemotherapy, I cannot do anything about it. I have been fortunate to build my own "family" and will find comfort among them. My neighbor and good friend told me last night that looking at me is shocking at times, my offer to help others scares her because I give so much of myself even when I look as sick as I do and sometimes feel. I help others because it is therapeutic for me, and it is helpful to others. She said these things because she is a friend, and I did not take offense, as she was offering me insight into what may be going on in the minds of others who see me now, and perhaps it reminds them of their own immortality or worse, they think if I am sick I may ask for help, which I have no plans to do. I just cannot get over the lack of humanity among many people, especially those I have known for many years. In any event, I am grateful for those who can look past the "different" me and accept that I am ailing. I have asked one of my friends to go with me to see the specialist as she is well versed in medicine, including organ diseases. I am hearing impaired and thought it would be of value to have someone to attend the appointment(s) with me as I am anxious about my condition and will probably forget to ask important questions of this doctor.
I have begun to experience more pain in my upper abdomen which is accompanied with some gastrointestinal issues. My doctor has suggested a food diary as I may need to go on an elimination diet. Honestly, this is becoming so overwhelming; it is no wonder I have not gone "mad" so to speak. Sometimes it is all too much, but I still wake up each day, look at my dog's picture and say, "Ducky, we got another day." She died in March 2022 and I still miss her presence in my life. Strangely enough, she would often stick her nose where my liver/pancreas is located and sniff for periods of time. She followed me everywhere and surely knew I was sick. Hopefully I will be paired soon with a foster dog that needs a break from the shelter, as I feel so alone at times and another dog would be of great comfort to me. I still walk every morning and would love to have a dog along with me.

Is 6mm cysts in the pancreatic tail.....dangerousHaving a cyst in the pancreatic body measuring 12mm in size.........dangerous?

So is the MRI the best to detect PC?

My insurance company has called the hepatologist to schedule me an appointment, but they first have to triage me prior to setting up an appointment, I will follow up with their office soon if I do not hear back from them. In the meantime, my doctor tells me that I have a sphincter of odi dysfunction between the bile duct and small bowel. It is not functioning as it should, is inflamed, under high pressure and this is the cause of my pain and dilated common bile duct. Furthermore, he tells me my liver is fine, yet I have all these symptoms that lead me to believe that I have cholangitis. Chronic nausea, ongoing diarrhea and little to no appetite. I have now lost 30 pounds since March. I now weigh 92 pounds and my friend tells me my appearance is shocking, hence the reactions I am getting from many I know in the community where I live. My doctor said he could cut the SOD (valve) to see if that helps, but the risks of the procedure carry many risks. I am anemic and feel weak, yet continue to maintain a level of activity that I normally do because I don't want to fall into that trap of sitting around doing nothing. I will get updated labs this week to find out if I need another blood transfusion for the anemia. While my blood counts are low, I guess they are not low enough to warrant an iron supplement, which is problematic because the slow release iron I take causes severe diarrhea.
I feel confused and lost trying to navigate this alone. I chose one liver specialist who is located in San Francisco, but also maintains an office in Sacramento where I live. The doctor tells me that this doctor may not be the right one for me, but cannot lead me to any other doctors who would be more of a benefit to me. I chose this particular doctor because she is involved in many studies associated with PBC and other autoimmune diseases of the liver. I am a complete loss as to how much the medical system has changed, especially at Sutter Hospital who I have been with for 30 years. If the doctor I chose is the wrong one, I have been advised that if there is a better doctor at UC Davis, my insurance might cover my treatment there, but that might be a difficult task with all the issues related to HMO's and things of that nature, I get more support from the Mayo Clinic than I do from those doctors I have known for years. I thank all of you for your understanding and kindness towards me. I just wish I had a more positive outlook about my condition, because my body is telling me something is quite wrong.

I contacted my healthcare provider last week after suffering a severe blow to my head when I fell down, In fact, I fell again last night. Without giving too much information, I was weak because I had to clean my toilet more than 15 times because after every meal, I have diarrhea, despite using lomotil before eating. However, while I was at the ER and telling the doctor about my experience and what I had found on the California Medical Board about my gastroenterologist who has been treating me for dilated liver and pancreatic ducts, she agreed with me that I should never see this doctor again. I am sure she knows more about him than what consumers can see on the "board's" website. Her reaction was very telling at best and her sage advice did not go without careful consideration about what I had been planning to do about my lack of care, lack of respect and an overall feeling of being dismissed by my doctor.
After that discussion I arranged a followup visit with my PCP and advised him that I am filing a grievance against my healthcare system because of the mistreatment I have been receiving from my stomach doctor as well as against a neurologist who misdiagnosed me 10 years ago with dementia without doing any form of testing(that resulted in losing not just my license but also my sense dignity and independence because I had to give up my new car. The diagnosis was later corrected by another neurologist who was stricken by the diagnosis and sent the appropriate information to DMV, but since I had already given up my car and could no longer afford to but a new one, I never renewed my license but will do so now), and that I wanted to be seen at University California Davis by a liver specialist. While I could have chosen Stanford, which has one of the best liver disease care centers in California, Davis made more sense because their hospital is located in the city where I live. I have Mayo Clinic Connect to thank for providing me with information about getting to a university hospital, and also for helping me develop enough confidence to get to the point where I felt comfortable asking for what I need.
After that video visit, I received a call from the Home Health department of my healthcare system and was advised that the following would be sent to my home beginning next week: RN, PT, OT, Dietitian, Nutritionist and social worker, I will also be getting a pressure relief mattress because the interstim device implanted in my back is protruding more than it was before because I have now lost almost 30 pounds since March. I cannot sleep on my back without waking up with pain that requires an ice pack each morning. My normal weight is 120, and I now weigh 92 pounds. No healthcare provider has ever discussed with me this weight loss, other than the stomach doctor telling me to eat all the ice cream I can, which I now cannot because I have become lactose intolerant and non dairy ice cream is too expensive right now.

I am grateful for the support I have received from the Mayo Clinic Connect for many reasons, including, but not limited, to the emotional support, the medical information and the encouragement to seek better care elsewhere. The sense of humanity provided by the Mayo Clinic staff has been tremendous and my experience participating in the Mayo Clinic Connect has been life changing. I have nothing but an enormous sense of gratitude for all those who have emboldened me to begin speaking up and becoming an advocate for myself, something that until now has always been difficult to do. Old habits die hard.

I thank all of you for taking an interest in my health and wish in some way I could better thank you by simply posting this message. You have changed my life and now I know I will get through this horrible affliction and begin a new path back to my healthy lifestyle. You hung in with me when my own medical providers would not.

Since we're not doctors we are limited in what we say. I have read that cysts over 3 cm and having dilation of the main duct could be considered abnormal. The next test can involve blood, another MRI, or even using ultrasound to take a biopsy. Another option they might offer is to sit and wait while keeping a close eye on things. When do you see your doctor?

@frances007 I've been following this discussion and especially your detailed posts. While I did not personally provide any advice or support I do appreciate that you took the time to thank those of us on Mayo Clinic Connect. Yes, this is what we do best. We listen, we support, we connect with each other and we give advice when it seems warranted. I also find it hard sometimes to advocate for myself but if I don't do that then who will? Not easy at all but just look at the what you've achieved by doing just that.

Please come back and let me know how you progress with your new health care team.

I will do so. I plan to contact one of my doctors who retired several years ago, but gave me her address and phone number. I need some help trying to locate just the right liver specialist to properly diagnose and treat my condition. My post about the Mayo Clinic and their help was done with great sincerity, and without the ongoing support I never would have even given thought to ask for treatment elsewhere.