Janet's Website Page

My name is Susan. I have a Pheochromocytoma in the Lumbar 2 area of my spine. I had a Pheochromocytoma removed from the bottom area of my Aorta 14 years ago. I have since then developed this new one that was diagnosed some years ago. I underwent radiation therapy for it 7 weeks right after they found it. I do not have symptoms until I have a spell. Then I have waves of nausea, anxiety, sweats, shaking and various other symptoms.

I went to Mayo Clinic in Rochester MN. Dr. Carpenter and/or Dr. Young are the two Pheo people there. However, if you do not present all symptoms just right they will likely send you home, and say you probably have one but they can't find it. At least that is what I was told on my first appointment there when I had my first very big spell which lead to a heart attack. They said that they would not do any testing other than a 24 hour urine test for catecholamines. My 24 hour unine still comes out negative, but I do have a Pheochromocytoma in my back, and it has been there for 8 to 12 years. Don't let me scare you, go and have all the testing that they will give you. There are good doctors, it is just that not all people fall within the guidelines when it comes to diagnosis.

Pheochromocytoma and MENS Support Board


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