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!

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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!

I had my first Pheo when I was 18. I felt fine I had high blood pressure so my GP who happened to be a specialist in Pheos tested me. Turns out i had a large on attached to my left kidney and wrapped around my aorta atery. I had sugery to remove the Pheo and my kidney. It was very painful as they opened me right up and my muscles took along time to heal. Now, at the age of 25, i have found out I have another one on my left hand side again but alot smaller. I am awaiting sugery, very scared =(

I was diagnosed with high blood pressure when I was 19 but unfortunately only diagnosed with a pheo last year at age 29. Luckily i live near Cleveland, OH where one of the leading specialists in the area resides. I had surgery last October and began to feel really great. I was beginning to deteriorate mentally and was diagnosed with bi-polar disorder. I reported to my family doctor my heart palpitations, and asked him for help with my suspicions of bipolar disorder however he kind of treated me like I was being melodramatic. Luckily I asked my cardiologist for more information on my high blood pressure and he ordered a CAT scan that found a Pheo. He was incredibly embarrassed he didn't find it earlier but he found my doctor and made sure I was taken care of. My surgery happened last year unfortunately my doc told me my cells were active and there was a 40% chance the tumor will grow back. I am a little scared because i have begun to have heart palpitations again and my blood pressure is a little elevated. Can it really begin to grow again a year later?

My general practitioner did not diagnose me. I diagnosed myself. He kept telling me that I was having panic attacks, and he prescribed drugs to treat the panic attacks. I knew that was wrong because I'm not a panicky person. I kept having symptoms, and thank God for Google because it saved my life. I told my doctor that I thought I might have a pheo. He laughed and told me that I should quit using the internet to diagnose myself. He prescribed a different anti-anxiety medication. On the next visit I took him my home blood-pressure tester which showed a blood pressure of 222/110. I asked him to test me for a pheo, but he said it was unnecessary and he put me on blood pressure medicine. A few weeks later I was back at the doctors office with my BP monitor which showed a BP of 236/122. I insisted that he test me for the pheo, which he reluctantly agreed to do. Two days later I dropped off the 24 hour urine sample. Five days later he called me and sheepishly told me that I appeared to have a pheo (My fractionated metanephrines were 5 times higher than the upper range of normal).

He immediately referred me to an endocrinologist. That same day my new endocrinologist called in two prescriptions for me before ever even seeing me (an alpha blocker and a beta blocker). The endo squeezed me in a day or two later, by which time the two drugs he had prescribed were working remarkably well. They had completely eliminated the episodes. Before starting the drugs I was having episodes a couple of times per day, and at least once each night, usually right when I laid down to go to bed (laying on my side put pressure on the tumor and squeezed out the adrenalin).

A couple of days later I had an MRI, which identified the tumor on my right adrenal gland. The surgery itself was about 3 weeks after I started the drug therapy. They kept moving me up on the schedule as other surgeries got cancelled. The surgeon did the surgery laproscopically. He made three small incisions, one just below my breast bone in the middle of my abdomen, another about three inches to the right and a little lower, and a third, larger one on my right side about halfway between my ribcage and the waistband of my pants.

I woke up a few hours later. They removed the tumor without any problems. The surgeon said it was necrotic, which to him indicated that it wasn't malignant, and that was later confirmed by another doctor. I was in the hospital for three more days. I was in a lot of pain. When they sent me home I was still in pain, but I could handle that. The worst thing was the bloated feeling. Actually, it wasn't just a feeling, my belly was swollen up like a balloon. I couldn't button my pants. I looked pregnant. After a day or two I called the doctor and he said it was normal. I was incredibly uncomfortable from the bloating. I tried Gas-X but it did no good. I actually wondered if sticking a long hypodermic needle into my belly would allow gas to escape and relieve the bloating. I never tried it, but the thought crossed my mind.

Anyway, after a week or so the bloating went away. The pain gradually faded. Three weeks later I was pretty much back to normal. Now, a little over a year later, my three scars are barely visible. I still take medicine for high BP. but I'm starting to think that it's unnecessary now because my BP on the medicine has been hovering around 105/65.

My 8 yr old daughter was diagnosed w a pheo, after having a seizure due to high blood pressure. After numerous tests, blood, urine collection, & ct, they found a 5cm tumor in her left adrenal gland. She was treated w alpha & beta blockers to prepare her for surgery. (The incision is about 5-6 in long on her abdomen, right below her rib cage).

The day after the surgery, her body went into shock, due to the removal of the tumor. the body was reacting / searching for the hormones that no longer were there. Her organs began to shut down, her heart, her liver, her intestines, all took a hit. She was put into a medically induced coma to help her body appropriately respond to the medication and allow her heart rate, blood pressure, and liver enzymes return to normal. After four days, she was taken off the ventilator and slowly began to recover on her own.
Her hospital stay was just under 1 mth. She was on anti-seizure medication and high-blood pressure medicine for two months.
She has recovered well, however, she has been suffering from stomach cramps and diarrhea since the surgery(2-3x a day). She has tried numerous medications to no avail. The gastro dr feels she has developed irritable bowel syndrome, but i disagree. Is anyone else experiencing this problem? it is very frustrating for my child. She has to always be near a bathroom, and worries about leaving the house. This was never a problem, only post suregry.

I was jus diagnosed with a pheo 2 weeks ago when a had a horrible stomach ache. I went to the GI doc. and sent me for and ultrasound.... later that they the sent me to have an MRI since they saw something suspicious onthe ultrasound. I starter the blood test and the 24 hour urine colection. Results came.
Starter medicine Monday morning. surgery May 17.
I've never had acne before until about a year and a half ago. I sometimes get cramps on my toes. I get a lot of headaches. SOMETIMES palpitations and my HB has been always normal.
I don't know if it is because now i am aware that i have something there. but for the las 2 days i have had this feeling that you get when you are pregnant and your baby;s little foot is stock on your ribs..........
I am really scared.

P.S. English is NOT my first language so pardon my spelling!

I had my 6.5 cm pheo (left adrenal gland) removed about three months ago. I had frequent palpitations that were increasing, vomiting, hot and cold spells, depression, crazy sleep patterns, pretty much every symptom associated with a pheo. It was finally recognized as a possibility when I was under general anesthesia for vein surgery and my 100/70 BP suddenly rose to 224/112, fell down to 70/? then rose back up over 200. Surgery was stopped and sent off to figure out if it was a pheo. 24-hour urine test showed 25,000+ adrenal produced (high normal is about 1,200), so off to CT which showed 6.5 cm pheo. My endocrinologist seemed very happy to meet someone with a pheo and all the symptoms that go with it. Lucky me :) Alpha A and B blockers pre surgery pretty much stopped all symptoms having before, but I was extremely tired and had major dizzy brain. Finally had open surgery to remove it. Nice big scar. Lots of pain. Although they call it major surgery, I still did not expect it to take so long to get back to noraml. Most symptoms are gone now. Some pain here and there. Cannot sleep on my left side or stomach. Doc assumed depression was caused by pheo and they took me off all meds, which I had been on long term. At three months out, I don't know if the deep sadness I still feel is because of the affects of my body adjusting to being pheo free, not having all the medications, hormone changes from the change of medications, or real depression. Really do not want to go back on medication, but not sure how long to wait for things to settle down.

I had surgery in 79 at the age of 14 to remove pheo/ paraganglomia from the left renal artery/ renal vein . The pheo was "supposed" to be causing polycithemia. I was preped for a small back insion, but woke up 2 days later being cut completely around my front rib cageside to side, 188 stitches. Have been ill for 2 yrs now, Finally convinced the hemotoligist to check to see if I had another, lo.. there a 2 more on the left side and they are talking of removing left kidney... I guess it will be a fair trade to feel better and hope that I am not bipolor or menopausal:)

I had mine removed, left adrenal gland and tumor. Three years later it was back in the same place and also attached to the spleen and some lining by the intestines. They removed the tumors and the spleen and lining. About three years later it returned with four in the stomach area. I found a clinical trial using Iodine 131, radiation treatment. Had two high doses injected and I think it may be coming back. They will not do anymore surgeries and because of how high the radiation dose was, I can't have more radiation (this treatment has not been allowed by the FDA yet). So I really don't know what to do now. I would rather go under the knife and die than take it to the end, having a heart attack or stroke.

You can read my story here http://www.pheoparatroopers.org/patient_stories/Erin_Carney_Triad_Story.pdf

Since the posting of that story I was told I had two new tumors forming. What looks to be a pulmonary chondroma in my left upper lung, and a new tumor on my right adrenal gland (my catecholamine levels are normal) I'm in the beginning stages of scheduling a surgery for a lobectomy for the lung tumor. We're still discussing on what to do about the adrenal tumor.

I'm very involved in patient advocacy, and would love to invite everyone who reads this into the pheoparatroopers organization. It's free! You can find their website at pheoparatroopers.org (the site that is hosting my story above) I also encourage everyone here to join in on the facebook support groups. You can look me up on fb @ Erin MacBean. There is a closed group for pheo support that provides a private place to post up pheo questions, concerns, and stories without the worry of the public reading your medical history, as well as some public pages designed to help connect and inform pheo para patients.

I look forward to see you there!