Pheochromocytoma Support Group

From what I've researched on my own, most cases of Pheochromocytoma can be surgerically removed via a small incision, no more than an inch or so. My surgery was much larger therefore my incision went from the bottom of my rib cage to my groin. The hardest part for me after the surgery were the first weeks just because it would hurt so much. You don't realize how often you use those muscles until you've gone through this type of surgery. The best thing for me to do was walk and keep walking to help get my strength back. Life after surgery and without Pheos has been normal, a normal I never had before. My only concern since is that I've gained a lot of weight very quickly and have been having a hard time getting rid of it. I'm not sure that it is directly related to the surgery however. My advice would be to make sure you start up some kind of excersice routine once you are healed (under doctor's advice of course) to make sure you can maintain your weight.

I did have a pheo on my right adrenal which is where pheos grow. Your adrenals are on the tips of your kidneys. My symptoms were to be expected as pheos run in my family history as well as thyroid cancer and collapsion of lungs. My hereditary familial condition is called MEN2A. Multiple Endocrine Neoplasia type 2A. First comes thyroid cancer, then these pheos and then the lungs. Scans showing pollyps on the lungs are a great indication of the lungs collapsing. I attend the N.I.H in Bethesda Maryland. They fly me to their hospital from Canada, free of charge as my whole family participates in their cancer studies. I've had the MIBG, the PET, the CT, the MRI. You name it. After surgery, I was a wimp and took lots of pain meds causing some constipation but after that subsided, they got me up moving around within a week. Flew homw a week later. With pain medicine. I do have levels checked through bloodwork every 6months.Any ?'s, just ask. My only symptoms were a racing heart. These grew longer and more intense towards actual diagnosos and surgery time. I was given Metyrosine to control blood pressure, very important meds for preparing for surgery.

Unfortunately my dad didn't have a chance to get the surgery done. He complained numerous times to a Cardio doctor about his heart palpatations and severe headaches, for two years. The doctor sent him, finally to get a MRI of his abdomen on the Friday night. He came home, and returned to the ER early Saturday complaining of severe right side pain. The doctor discovered the the pheo, at 6 cm big. After 4 days in the hospital, waiting for surgery the pheo reptured and my dad died. So for those who were able to get the surgery, I am glad to hear it went well. My dad passed due to neglect and cause the doctors had no knowledge on pheo. When he complained of pain, they gave him morphine and told him he had pulled a muscle. The doctors told me the same thing. Now my son misses his Papa and will never see him again cause of neglect!

jacgreen your only symptom to the pheochromocytoma was the racing heart? What test did you have done that found that you had this? The racing heart is what took me in to the doctor and he mentioned pheochromocytoma. I researched and I have almost all the symptoms. I took a 24 hour urine collection that found nothing and he then had me wear a holter monitor. That found my heart racing at 155 bpm at 3:38 in the morning for almost 5 mintues and then again at 5:07 at 147 bpm. He has since put me on a beta blocker just to see if this can help with the racing heart but I still feel after all the research that I do have the pheochromcytoma. Thanks so much for any advice or comments you have for me!