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Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn
Replies to "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..."
Hello @ahtaylor
It is so good to hear from you. As you had not posted after your surgery at Mayo last year, I've wondered how you are doing. I'm glad to hear that your surgery at Mayo was successful and you had such good results and were happy with your medical team.
I appreciate your sharing with @lolorn. I know she will appreciate your personal recommendation.
I look forward to hearing from you again.Once again I'm so pleased that all is going so well for you.
Teresa
Thanks. I am doing well. I will be coming back to Mayo in June for follow up. My issues are not entirely resolved so they are continuing to monitor for recurrence. I am always happy to help someone else going through the process!
Allison
@ahtaylor -- good to hear from you. So glad you liked your surgeon and endocrinologist, and that the 11 tumors are gone. I see that you are returning to Mayo in June so they can keep monitoring your condition and help you with any unresolved issues.
You may notice I removed your email and other contact information from your post. We do this to protect your privacy on a public site so that members don't receive any unwanted emails or SPAM from third-party accounts. We recommend members share their contact info using the private message function.
Your willingness to help other members is wonderful.
Would you have any recommendations for the recovery after surgery like yours? Anything that was particularly helpful?
Thanks!Each surgery and recovery is really dependent on the location of the tumor(s). My first surgery was a modified whipple procedure where intestines were rerouted and recovery was impacted by how quickly my intestines started functioning again (not very quickly). My second surgery removed the distal part of my pancreas and my spleen. The impact of no spleen is lifelong. The surgeon is the best person to assist with expectations and recovery.
Allison
The spleen helps fight infection. Vaccines foe pneumonia and meningitis are very important. Here is the link to Mayo information on splenectomy:https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066
Allison
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
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. 🙏🏻🙏🏻
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Lolorn,Good to hear from you. I have had multiple insulinomas. I have had two surgeries to to to remove a total of 11 tumors. My first surgery was in NC and my second was at Mayo in Rochester. I have a great endocrinologist there that continues to follow me. I had a great surgeon as well. I would be happy to share my experiences with you either by phone or email. I highly recommend Mayo. You have my email and you may private message me on this site. Best wishes. Allison