Patient Comments: Pheochromocytoma - Symptoms and Signs

Question:What symptoms and signs did you experience with your pheochromocytoma?

Comment from: Pammie, 55-64 Female (Patient) Published: October 08

I had a pheochromocytoma 12 years ago. I cannot remember how I felt before major symptoms appeared but I would suddenly get palpitations followed massive pain in my head worse than any migraine.

Comment from: JigokuSenshi, 19-24 Male (Patient) Published: March 30

I had severe headaches and blood pressure problems for years. It started when I was very young and was not that bad for a long time, but we found out the cause at age 14. I went in to get checked up and had pneumonia, but my blood pressure was unusually high. No scans (MRI, CT scan, chemical, etc) other than a simple ultrasound found a golf sized tumor inside of my bladder. I had surgery and they were able to take out the main tumor, but they found out it was malignant. I'm 22 and again still suffering from horrible headaches. I got really sick recently and had to go to the hospital. My blood pressure was around 200 over 150 or something like that. It took them several days to get it under control. They wanted to do a ton of tests again, but I told them I only wanted to get another ultrasound. They again found another mass around my bladder area. They are not sure if it's a tumor yet, but it very well could be. Not sure if I will have to get surgery again. We are trying to figure stuff out. No doctors really now how to treat me or other patients with pheochromocytoma since it's so rare and doctors have no experience with it. Hope this helps some other people.

Comment from: rosie, 45-54 Female (Patient) Published: March 20

I am 54 years old had left adrenal gland removed 2005. I am now starting with high blood pressures and the same feelings as I did before. I did have a pheo. I take large doses of beta blocker, lasix, spirolactone norvasc, veramil, and clonidine path. Today bp is 197/104 I feel shaky and terrible. Well I think I have another pheo. Will call md. Wish me luck.

Comment from: pixie, Female (Caregiver) Published: November 16

My 23 year old daughter has just been diagnosed with a pheo after 3 years of feeling ill and telling her gp of her symptoms. After a routine kidney scan they decided to look higher up her body and found it near her main artery it isn't decided yet whether she can even have an op because of where it is. Bless her she is so ill and it's cancerous so we really don't know what's going to happen. I just wish it had been found sooner then maybe she wouldn't have to be in this horrid situation.

Comment from: glbillin, 45-54 Male (Caregiver) Published: October 11

My Husband has been having severe headaches with high blood pressure which spikes for no reason he has been told its anxiety, tension headaches and whatever else they can think of his quality of life has went from 100% - 0% in 3 1/2 years and he has had mri, mra, ct and a battery of other tests and not one doctor or specialist he has seen can tell us what is wrong with him they treat you like you don't know your own body when clearly there is something wrong is there any doctor out there that anyone knows of that can help! We live in Iowa and I am desperate to get him the help he needs now!

Comment from: james, 19-24 Male (Patient) Published: August 31

Hello I am a 19 year old male and I've been undergoing treatment for pheochromocytoma for 5 years. I have been on phenoxybenzamine and atenolol (to control blood pressure) and thalidomide and temozolomide (to stop the growth of the tumors), but also suppress the side effects of the pheo, such as high blood pressure and palpitations. I am determined to find a set procedure for going about treating a pheo for everyone. It is my assumption that it may be possible to use a cyberknife, which is an alternative surgery that uses pinpoint high dose radiation to rid the body of tumors. I am going to be scheduled for another pet scan soon and upon the results of that I will hopefully be referred to a cyber knife treatment center to test my theory. I will be posting the conclusion on this site and others. I hope this post will help somebody.

Comment from: Cass - the survivor!, 45-54 Female (Patient) Published: July 06

I was diagnosed with pheochromocytoma by accident in August 2010, following admission to hospital for an acute kidney infection. Prior to that I suffered with high blood pressure, sweating profusely, and diabetic, palpitations and panic attacks, constantly tired. I was sent for an ultra sound on admission for my kidney infection, and the mass was detected on my left kidney, I also went for 24 hour urine tests, MRI scan, and various blood test to confirm the diagnosis - left pheochromocytoma. I had the operation in November 2010, the operation lasted 6 hours and I stayed in hospital for 3 weeks. The mass was quite large 10cm, so I could not have key hole surgery and had attached itself to my spleen so I had to have my spleen removed as well via a large incision just below my rib cage. Due to the nature of the operation one has to be sensible and not do any heavy lifting and listen to their body, eat very well, and take gentle exercise. Unfortunately my blood pressure is still a little high so I have not got rid of all the medication yet, but I am still being monitored by the hospital. I am due to go back to the hospital to see if I still need to take diabetic medication or not, so the body is still adjusting to the removal of the adrenal gland. I am hoping that this condition will not recur, but glad that it was diagnosed when it was and that it has been removed. I am feeling alot more relaxed, but I have not returned to work yet and hoping to do so soon. At first following the operation I was feeling very vulnerable and a bit frightened of returning to work but now I feel that I am nearly ready, once my energy levels improve. This condition has made me realize how important your health is and that we should not make our lives too stressful, as having high blood pressure (220/130) as I did, is a very serious health condition, and not worth a heart attack, stroke or death!

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Pheochromocytoma - Experience Question: Please describe your experience with pheochromocytoma.

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