Pheochromocytoma

[Flo2pen]

Hello All... In 2011 i was diagnosed with pheochromocytoma which led to congestive heart failure, DVT and Arrythmias Afib/flutter. As I've posted b4 i just had EP Study n tachychardia ablation last thurs and currently in recovery mode. My EP told Cardiologist yesterday at followup visit that something is driving the irregular heartbeats. Bloodtest now reveals high levels of epinepherines and catecholamines and there is a chance d pheo is back.. Do any of you guys know anything about or anyone dealing with pheo?? You guys have been extremely helpful with knowledge n guidance on dealing with d Afib/flutterings n ablations. Would like some help n guidance on this issue.. thank you All...

[wilsond]

Haven't seen any posts,but perhaps put it into the search box here? Best wishes

[Glenn50]

From NZ. I have had both adrenals removed and my daughter has 1 removed and one that was operated on with adrenal sparing meaning a small portion is retained so that hopefully she may not be steroid dependent like her father. We have a MAX gene mutation that can be traced back 4 generations. Causes pheochromocytoma and paragangliomas. Had first pheo/adrenal removed 1981 then my 2nd 2004. I am waiting on the results for a plasma metanephrine blood test. Seems to take forever. Daughter had a yearly MRI (all clear) the other day and son who appears not to have the condition also has had a blood test.

Also have had A Fib until fixed (hopefully) by cardioversion 18 months ago.

There aren't many of us pheo people around and I'm quite amazed to come across you in my in box. Sorry you are going thru so much, it's bloody hard. If I can help let me know.

Glenn [e-mail]

[Hidden]

There is a series of videos about pheochromocytoma by a woman who experienced it in YouTube. Her YouTube channel name is Katrinaosity. Good luck.

[Sasical in reply to Hidden]

Thank you!! This was so useful