NET - Insulinoma

Hello @kapple

I'm not familiar with John Hopkin's work with insulinoma, however, I do hear good reports about Mayo Clinic's doctors.

If you are interested in an appointment at Mayo Clinic in Minnesota or another location, here is the website that will give you appointment information.
https://www.mayoclinic.org/appointments

They also have a concierge service that will help out-of-town patients with travel/lodging information.

Will you keep in touch and let me know how you are doing?

I am also not familiar with the insulinoma work at Johns Hopkins. I can only speak to my experience at Mayo and in NC. I am fortunate that my symptoms are only associated with the hypoglycemia episodes. I am sorry to hear you have issues that are broader and associated with the insulinoma. My experience on flights, especially to Rochester, is they have means to take good care of passengers that have difficulty. I travel about 4 hours by plane to Rochester about every 6 months. For me, it is worth the travel for the care I receive at Mayo. I hope you are able to find a solution that works best for you. Please let me know if there is other information I can provide. Best wishes to you and in your journey.

Kappie, I wanted to clarify that Mayo Clinic has 3 locations: Rochester, Minnesota where @ahtaylor sought treatment as well as in Phoenix, Arizona and Jacksonville, Florida. Perhaps the MN or AZ locations would be more convenient for you. You can always call the appointment office to find out more about our specialists and expertise in treating insulinoma. Here's the contact information for all 3 campuses: http://mayocl.in/1mtmR63

There is a group called best doctors that when given your symptoms they can help you locate specialist in the area that’s needed I believe you can find their number online and is usually available through insurance companies

gaylejean:I’m interested in any information about the mayo clinic as I have an appointment with an endocrinologist July 6 for insulinoma -ridgerunner also interested in how to handle hypoglycemia

@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?

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!!

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

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.

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. 🙏🏻🙏🏻