Paraganglioma / Carotid Body Tumor Question

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!!

Just got the call. I head to Mayo Clinic on Wednesday the 13th!

I was lucky in the fact that my primary doctor realized something was wrong, did scans and determined it was a para, referred me to a vascular surgeon, who referred me on to Mayo, all within a few days. But the surgeon did order a 24 hour urine test, which the endo at Mayo had me redo. So my gut says to just have them do the referral and then let the Mayo doctor(s) have you do the tests they want. I also didn’t have any blood pressure spikes or anything so going on meds wasn’t really an issue. If you are having trouble with that then I would keep the endo appointment. If possible I am going to try to send you a private message with my phone number if you want to talk/text. I remember how overwhelming it was when I was first diagnosed and everything I read on the internet either confused me or terrified me. But I had a great outcome and am doing well! Para eviction December 2016 😃

@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.