Paraganglioma / Carotid Body Tumor Question

My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes to thighs. My para was removed December 2016 at Mayo and I am doing great!

Hi @cootiesgirl1 and welcome to Connect.
I would like to introduce you to fellow Connect members @shanda and @sharik as they have experience with parangangliomas and may be able to offer you support.

Back to you @cootiesgirl1 since you have been diagnosed, what have your doctor's told you are your next steps?

Hello everyone. I was incorrectly dx with bladder cancer and after second opinion am one year later learning that is not what I had, but a paraganglioma. Anyone else have this?

So good to hear from you, @shanda. Thanks for remembering 😉
How are you feeling about going back to work on Friday? Will you go back full time right away?

Sorry. Haven't been on here in awhile. So many people to update after surgery that I forgot this site. I am doing well and hoping to go back to work this Friday. Surgery took extra long as did recovery (due to my bowels not wanting to wake up). My care at Mayo Clinic was amazing. The staff is wonderful.

Thanks for providing an update on your surgeries, @shanda. Wishing you well.
Will you send an update (as you feel like it) after the surgery on the 5th?

Surgery on extra adrenal para is scheduled for March 5th. Surgery for carotid body tumor will be 6-8 weeks after that.

Thank you!

@shanda, have you seen the Visiting Mayo Clinic group? There might be some questions you're asking that the community has already answered.
> Groups > Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Mayo also offers Concierge Services. It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours.
Ways to Contact Mayo Concierge Services
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

During your time at Mayo, I'm sure you'll visit the Cancer Education Center. It is an oasis right in the main Gonda building. The library offers great information and so much more. Find out more on the Cancer Education Center page here on Connect: https://connect.mayoclinic.org/page/cancer-education-center

As you get ready to head to Mayo, don't hesitate to ask questions. There are plenty of members who can help you prepare for your first visit.

So glad you have a plan! Wishing you safe travels and I will be thinking of you!!