Pancreatic Disorders Group: Introduce yourself and connect with others

@ahnni

I am sorry to hear that you weren't able to get an appointment at Mayo. If there is a university medical school, that might also be a good place to seek a second opinion. Any research oriented medical facility is also good.

Do you live near any of these types medical centers?

A good GI Dr should be able to help. I say “good” because my original Dr I had for 20 yrs. for UC who was part of a GI group which him and his associated just came up with excuses for my symptoms, not a sure cause. It took a non- Dr to figure it out. Find a good Dr who knows EPI and its causes and control. GI Groups don’t mean you get better care. They are only as good as the time they take with you to figure things out WITH YOU. Drs today often don’t take the needed time to analyze. I have been misdiagnosed multiple times, given inappropriate meds and more due to the lack of analyzation of the circumstances.

I’m have a cat scan an ultrasound and a mri with contrast ..
found a cyst

My Gi doc wants to do endoscopy to pancreas?
Thoughts

@hopeful33250 Are you able to get a referral from either your PCP or current GI to Mayo? I am not sure why you weren't able to schedule an appointment as self- referrals are often accepted at Mayo. Make sure your insurance doesn't require a referral first, sometimes it has to be from your PCP in order for them to cover the visit. I would also suggest trying to set an appointment with a PCP at Mayo as that is how you will be sure to get an appointment with any of the specialties as long as the PCP is in agreement that that is the right direction for your situation. It is worth trying, also you can try the appointment scheduling and ask why you aren't able to schedule, also ask when their schedules will open to schedule a new patient appointment. These are just suggestions, I cannot be sure of your situation and I am unsure why you were not able to schedule to start.

@lisalucier Introducing myself into this group, my son, 43 has pancreatitis, recently had CT scan in ER, he has a cyst that sounds worrisome. Actually I am sick with worry even though he hasn't followed up with MRI. Frightened that we cannot seem to find a GI specialist who can be trusted. Resident of Illinois. Chicago suburbs. Would like to join this group. thank you.

@darlenemyers

Welcome to Mayo Clinic Connect. When my pancreatic cysts were first discovered (they were found incidentally when I was being scanned for another problem). The first step was an MRI, followed by an endoscopic ultrasound (see a link to information about this procedure on Mayo Clinic's website: https://www.mayoclinic.org/tests-procedures/endoscopic-ultrasound/about/pac-20385171). As you read this article, you will see many of the reasons why this test is being suggested.

This type of endoscopy (also known as EUS) helps identify other areas of the digestive tract, such as pancreatic cysts.

Was just one pancreatic cyst found during the ultrasound and MRI?

@marymekko

I see that you are directing your post to @lisalucier; however, I thought I would jump in and introduce myself. While I've not had pancreatitis, I do have pancreatic cysts. I understand how frightening this can be; however, my cysts were discovered over 15 years ago, with little change and no indication of cancer. While the original diagnosis of these cysts was frightening because of my previous cancer surgeries, the results of follow-up scans have settled my worries, as I know that there have been no changes over the years.

How is your son feeling? Is he able to eat without too many problems or is he losing weight?

@marymekko While not everyone needs to go to The Mayo Clinic for diagnosis and Mayo cannot see everyone, there are other options. You can look for a university medical school and hospital in your state Or. find a comprehensive medical center. Both of these have top-notch doctors who could give your son excellent care and you, some relief. This is what my husband did. I was very sick and the doctors didn’t know what was going on. So, my husband called the university hospital about an hour away. After he explained the situation, the university hospital couldn’t give us an appointment right away, they would talk to the doctors here and explain what to do until we could get an appointment. We were able to get an appointment in 2 weeks. Probably a bit more complicated than that, but that’s all I remember.

@darlenemyers

So does mine