Dec 18, 2011

I spoke with Dr Cunningham (my GI in Tucson) on Friday night. I had a few questions for him - mainly if it was worth having him cut my ducts if I was going to end up doing something surgical anyway. I had heard that the sphincterotomies (cutting the duct open) cause more damage to the pancreas and therefore there would be fewer islet cells to harvest if I did end up doing the pancreatectomy. He said that there was a very low risk of damage because he used a very soft stent and cut it short so it doesn't go deep into the duct.  The payoff of getting some relief is well worth the risk. So, he will go in and look for damage next Thursday (using the scope and ultrasound) and cut the ducts if he feels that he can safely do so. We also talked about my MRI results. He said that my pancreatic duct was mildly dilated (a sign of chronic pancreatitis, CP) and there was some "mild pancreatitis." He was not too convinced that there was only mild damage - usually, they use something called secretin during the MRIs that stimulates the pancreas to get better views. However, the radiology center here no longer uses secretin so  Dr C was not happy or convinced of the results. He said that he will get a much better picture with the endoscopic ultrasound.  He also said that my liver was mildly inflamed.  I think that happens when the digestive enzymes get backed up into the common bile duct and starts irritating the liver as well.  This could be a sign of a more advanced disease and could help make our decision easier about whether to remove the pancreas.  He also said that he is going to get me in to see Dr. Rilo who is the transplant surgeon here in Tucson (said he would push him to get the earliest date possible).

I'm also excited because I get to meet up with 2 ladies who are coming to Tucson this week for their final testing before they undergo pancreatectomy.  I met them via a Facebook group.  They are further along this process than I am, so I think I will learn a lot about all of this from them.  One lives in Phx and the other in Colorado.  Apparently, this Pancreatic Center in Tucson is very, very good.  I am still going to meet with the team up in MN and will certainly make my decision based on who will do the best job, but it sure would make lots of the logistics easier if I can be treated close to home.  But we won't be making any of those decisions until AFTER my ERCP on Thurs! I'm starting to get a much more optimistic outlook on all of this, at least.

I'm also meeting with an endocrinologist tomorrow (Monday) to pick his brain.  A friend of ours has a brother who was hospitalized for months with pancreatitis.  They ended up finding a benign tumor on his thyroid.  Once they removed it, all signs of pancreatitis went away and have not come back.  It could be just a fluke, but I'm willing to have someone look at it.  Besides, people need an endocrinologist with any pancreatic surgery because they are the specialists in insulin, so it's likely I'll need to establish a relationship with this guy anyway.  I'll update once I hear what he has to say...