NET - Insulinoma

My experience has only been at the Rochester, MN Mayo Clinic. The Endocrinologist I have there is well versed in insulinomas and has done much research in the field. I wish I could help with the question about Phoenix Mayo Clinic. I can support the fact that insulinomas are rare. Also, if surgery is required, having a surgeon that is familiar or that specializes in endocrine/insulinomas is very helpful as it is not a simple surgery. I wish you the best in your journey and wish I had more helpful information. Take care.

I would like to know if anyone has had success in treating insulinoma at the Phoenix Mayo clinic where I will be going for my appointment? The endocrinology department said their doctors treat all areas however insulinoma is so rare I worried I’ll just be wasting my time and have to Continue the search for someone who can treat it

This is a stellar post @ahtaylor! That’s information one just can’t get anywhere else.

Hi Steph, Do you know about the free Concierge Services at Mayo Clinic?

You can get your travel and accommodation questions answered by someone at the free Concierge Services at Mayo Clinic. The staff at the concierge desk can help with hotel/lodging recommendations, according to your wishes of proximity, price and space requirements. Here is how you can contact them:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

Let me connect you with @lmindela

My family stayed at Kahler directly connected. Not too bad. Hilton has completed HGI. Nice. Can find on web with search.

I go to Mayo for NETS and had a double transplant there. Dr. Halfdanarson is recognized as world class and a NET specialist as is Dr. Hobday. Mayo saved my life. I would highly recommend Mayo. Best in the world. Since you are in CO, if you cant get there, Dr Liu is at Rocky Mountain Cancer Center in Denver. He is also highly regarded and considered world class. 🙏🏻🙏🏻

I think there are several that connect. I have found the Marriott to be one that is very convenient to most of the clinic visits and testing I have had and we have stayed there several visits. We have also stayed at the Residence Inn and found that one to be convenient as well. Those are the only 2 I have stayed at that were connected. I don't know but I would think there is a list of hotels that are connected by skywalk or subway. Depending on where most of your appointments are will also make a difference. Thanks.

ahtaylor.........could you tell me what hotels you find are the easiest for getting to the clinic via subway or skywalk?
Thanks
Steph

Here are some things I have found helpful in my visits:
1. If you have not already - Download the Mayo Clinic app - it is very useful for your appointment schedule as well as test results later. There is a patient guide for your appointments that will tell you everything you need to know for preparation (i.e. whether to fast, when/what you can eat/drink, restrictions, etc)
2. If you are coming to the Rochester, MN clinic there are several hotels that connect directly to the clinic - if you are seeking convenience and ease of getting around these are good places to stay
3. Don't be afraid to ask for directions/help - I have found everyone to be very helpful and accommodating 🙂

Here are some things I have found helpful in managing hypoglycemia:
1. Of course, always carrying glucose tablets and glucagon with me
2. I also wear a CGM, which over time has becoming very beneficial in knowing my patterns and what is likely to lead to hypoglycemia. My husband and my children (17 and 20) get alerts on their phones if I have an episode so they can check on me. My husband also has my blood sugar readings on his phone.
3. Low carb diet works the best for me for diet control of hypoglycemia

I hope you will have a great experience and get the answers you need. If you have specific questions about the visit or managing hypoglycemia, please don't hesitate to reach out. Always happy to help!! Best wishes!!

@kapple what type of information would you find most helpful about Mayo Clinic ahead of your July 6th appointment so members can help point you in the right direction on Connect for resources and/or share their experience?