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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 Everyone! @ahtaylor, @hopeful33250, @marilyn2525, @amya
My surgery went well yesterday! Pre-op preparations started at 6:30am and surgery was done by 10:30am. I was in recovery room for 2 hours before they moved me back to my room. They found the tumor where expected on surface of the head of the pancreas and were able to successfully enucleate! Pain meds are helping me to deal with the pain. Today I felt much better and walked 3-4 times with podium. Had nice hot veg broth all liquid for dinner! Hopefully tomorrow I won’t be gassy as much and will be able to eat something.
All nurses here are excellent and go above and beyond to provide the necessary care. Will post more updates in coming days.
I can’t thank you all enough for the support and encouragement. I was in dual minds about rescheduling this appointment due to Covid but the advises given here really helped me to make a decision and move forward.
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2 ReactionsHoping your surgery went well! Speedy recovery!
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1 ReactionHello @preeti
I've been thinking about you and hoping that your surgery went well. I know it will be a few days before you feel up to posting, but I'm looking forward to hearing from you when you are able.
That is amazing...I’m so happy you didn’t need to go through the long 72hrs. I was done at noon. Now to get that tumor out.
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1 ReactionThank you all!
@hopeful33250 yes, I will be admitted tomorrow evening.
@marilyn2525 I was given magic number as 49. I dropped to 48 by 9:00am after overnight fast and then they concluded the 72 hour fast test.
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1 ReactionI had the 72 hr fast at Mayo, Rochester. I dropped to 53 then the fast was over. I believe the stop number is 54...it was in 2018.
@preeti
How wonderful that you have such confidence in your medical team. You will be in my thoughts (and prayers) on Friday. Rest well until then. So, you will be admitted to the hospital tomorrow evening?
Best wishes with your surgery and recovery!
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1 ReactionBest of luck with your surgery. You are in good hands,
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1 ReactionHello everyone! Thank you so much for all your replies and suggestions. I’m scheduled for surgery on Friday. I’ll be admitted the night before. Both the doctors answered all my questions which helped me to opt for surgery so quickly. I appreciate all the support from all of you! Mayo is the best! So organized and everyone here is so empathetic! Will post an update after my surgery. Again, thank you all!
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