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NET - Insulinoma
Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.
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Hi @amya
I was noticing that in your post last month you mentioned a Mayo appointment Oct. 18 to the 24th for testing about insulinoma. I hope that appointment went well and you received some answers.
If you are comfortable doing so, will you update me on how you are doing?
Hello @nancymcegg
No, I am not familiar with the NET specialists in Florida, but if you call Mayo's Florida appointment desk and explain that you need a second opinion for a possible insulinoma diagnosis, they will undoubtedly know who you should see. Here is their number for scheduling appointments at their Florida location:
Mayo Clinic in Florida
727-369-6849
8 a.m. to 5 p.m. Eastern time, Monday through Friday
Will you post again and let me know how you are doing with your second opinion?
Do you know of a specific doctor I should make an appointment with at the Mayo in Florida?
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1 ReactionHello @nancymcegg and welcome to Mayo Connect.
I am so sorry to hear of your possible insulinoma diagnosis. I can certainly understand your concern, especially when two different doctors give you different answers. Is it possible for you to get a second opinion at Mayo. They do have a facility in Florida as well as Arizona and Minnesota.
Will you post again and let me know how you are doing?
Hello @amya
Mayo has concierge services at each location. They should be able to help you find affordable accomodations, and answer your questions. Here is a link that will take you to their contact information. Please give them a call or email them. https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Here is a link you should find useful. Most either will take you the building you need to go to or there are busses. https://www.tripadvisor.com/SmartDeals-g43466-Rochester_Minnesota-Hotel-Deals.html
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2 ReactionsI've been scheduled for testing at Mayo from 10/18 to 10/24 for insulinoma. Any suggestions from the group on places to stay that are relatively close that won't break the bank? Thanks!
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1 ReactionUggg. I hope you can find answers. I can feel your frustration.
Hi! My local doctor's feel that I have an insulinoma but the endocrinologist at the Cleveland Clinic in Florida thinks that I might be suffering from dumping syndrome. I had a Nissen fundoplication 5 years ago due to severe gerd but my hypoglycemia didn't start until 3 years later. I have had every scan you can think of and they can't find an insulinoma. I have been put on medication to keep food in my stomach longer but it hasn't helped. I had a gastric emptying study done and it was in the higher range of normal. I am so tired of feeling terrible all the time and I don't know what to do next.
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1 ReactionHello @gaylejean
You can of course have a private conversation by using PM (private message) but it is so helpful if you keep the conversation on the discussion page as we all learn from each other. I'm so glad that you are connecting and sharing with others!