Welcome to Connect, @jls77, aka Tabatha, and thanks for raising a very important and vexing question for discussion now! Do I have paraganglioma? Maybe (on this basis):
Paragangliomas are a class of tumors that occur in different places in the body. If one occurs in the adrenal gland on the kidney, it is known as a pheochromocytoma. I have a tumor in one of my adrenal glands, and the first suspicion of my nephrologist was a pheochromocytoma, so she engaged an endocrinologist to help with laboratory tests needed for a diagnosis. After thorough testing, they found no evidence 1) that the tumor is malignant or 2) that the tumor was producing excess adrenalin (epinephrine) or other catecholamines that would account for my high blood pressure. So for now, my medical team is content to simply keep the tumor and my blood tests under regular observation. But my hypertension remains!
Mayo Clinic is (for my money) the best place in the world to take your concern. In fact, one of our best known Connect members is Dawn Gacabiazi, @dawn_giacabazi, who will be at the Mayo Clinic in Rochester in the very near future for treatment of what she thinks might be a pheochromocytoma. When Dawn is able to join us in this discussion, I know we can learn a lot from her.
Tabatha, I noticed that your question was prompted by a diagnosis of your husband’s condition. You also appear to be hoping that Mayo Clinic might give a second opinion and, if necessary, new treatments for him. Would you feel comfortable telling us more about his symptoms and his prior experience with the medical team that has diagnosed paraganglioma and treated him? For example, where is the tumor located and how long has it been under observation and treatment? What kind of “chemo/poison treatments” has he received, and why do you think they should be halted?
Also let us know what we can do that would be most helpful to you and your husband. We’ll be awaiting any message you wish to send us.