- Pheochromocytoma
- Interviews
Cynthia's interview
How did all start?
Chest pains with High BP, incidental found on brain MRI
Do you already have a diagnosis? How long did it take you to get it?
Yes, MRI, Paraganglioma Jugular, 2.7 x 1.2 x 1.5 CM dx February 2018.
May 2018 MRIs & FDG & FDOPA PET Scans also dx nodular thickening thought to also be beginning of Pheo & plasma Normetanephrine high in May 2018. Wait & wait for now. Repeat scans every few months. Para Jugular inoperable
For what medical specialties have you been treated? What has been the most useful specialty for your?
Consult at NIH wit Dr Karel Pacak
What has been the most useful thing for you so far?
Consult with Dr Karel Pacak, prescribed calcium channel blockers for BP
What have been your biggest difficulties?
Chest pain, & trying to get appts with doctors locally who have no knowledge of Pheo or Para & trying to get follow Scans & labs ordered by local doctors that Dr Pacak recommended.
How has your social and family environment reacted? Have your social or family relationships changed?
I feel people don’t understand or misunderstood my condition. Facebook Para Pheo group my best source of support
What things have you stopped doing?
Limiting foods, drinks & medications that trigger my episodes
What do you think about the future?
I still have a goal to live to 100
So far, which years have been the best years in your life? What have you done during them?
Lasted 30, enjoyed life!
What would you like to do if you didn’t have your condition?
At this time I don’t feel I have any limitations,
If you had to describe your life in a sentence, what would it be?
Goid
Finally, what advice would you give to a person in a similar situation?
Find the best experienced doctors who treat Para & Pheo that you can get a consult with. And don’t dwell or let your condition consume your thoughts. Continue living & enjoying your life
