Pheochromocytoma Support Group
A pheochromocytoma is a tumor of the medulla of the adrenal glands originating in the chromaffin cells, which secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine. Extra-adrenal paragangliomas are closely related, though less common, tumors that originate in the ganglia of the sympathetic nervous system and are named based upon the primary...
I had open surgery in May of 2012; recovery from the surgery itself was brutal - one week in the hospital followed by 2 months out of work.
One year later, I am symptom-free (I have been cleared of known genetic traits). My biggest problem has been the weight gain. I was so careful about my diet in the beginning because of my lack of activity (and appetite) and as my appetite returned, I found myself walking a lot to help with pain management (major lower back pain).
When I had to return to my stressful job, the weight-gain started almost immediately. I am admittedly a stress-eater, so that only made it worse. I eventually got out of that toxic job, but the damage was done - I had put on 30 pounds. I am now in a much better place career-wise, but I am in a constant struggle with my weight.
I understand from my nephrologist that this is completely normal - pheos increase your metabolism, and it drops significantly after surgery. My advice to those facing surgery is to find a way to avoid weight gain post-surgery because giving in to that extra calorie intake (or just not being mindful of it) is just not worth the struggle you will face later on.
The first one was on my left adrenal gland, they removed it, 6 months later, I had them in my uterus and on both ovaries, I had a complete hysterectomy. Then there was a reoccurance of the original pheo, that regrew on the left adrenal bed, two wrapped in and around my spleen, one on my pancreas, two on my liver and one attached to the fatty tissue in my abdomen. They removed all 8 of these at one time and my scar looks like the balloon from a hot air balloon. Shortly after that major surgery, they located two aneurysms brought on by the BP spikes, so I had brain surgery to clip the one on the right intracranial carotid artery. The left one is still there and has grown a tumor on the aneurysm that has attached itself to my pituitary gland, so I am now facing another brain surgery. However, another pheo has shown up on my right adrenal gland as well as two returning to my liver and one on the inferior vena cava. This is not a disease for the weak! That I promise you!