I had a scan (mri) of the abdomen back on 4/26, and I have to have another one of the pelvis, which takes 30 minutes. Since I didn’t hear anything as far as findings are concerned with regard to the first scan, I have to presume that this tumor is not on either of my adrenals, or anywhere else in my abdomen, or that, possibly , the gadolinium contrast just failed to demonstrate, and that would mean I might have to have a more sensitive test, like an MIBG scan. My BP is great, but these “Pheo” spells occur randomly, and they cause these “feelings of doom”, where I can wake up suddenly and experience a sense of doom. These bother me worse than the BP issues, so I have to get to the bottom of this, because it is seriously affecting my quality of life. Thank you for reaching out to me, I appreciate it.

Hi, I don’t know if I will ever have surgery at this point in time. I’m seriously considering finding a competent endocrinologist, because the cardiologist whose care I was under was an abysmal failure; he gave me a script a while back for an MRI of the abdomen, but I wanted imaging of the pelvis, because I was led to believe after the Endocrinologist doctors came to my hospital room back in October 2021 that they were pretty sure I had a Pheochromocytoma (paraganglioma) in the pelvic region, but also said it could be on the adrenal gland. So the cardiologist gave me a script for the pelvis also. Despite high hopes, neither of those MRI scans demonstrated any sign of a “pheo”. I saw my cardiologist on 7/11, and he said, “you had the tests and it didn’t show anything, so you don’t have a pheo”. I told him that I believed I still have one, and because I had the triad of symptoms, that is a strong predictor that there is one, than not. The dearth of my medical history, and the fact that a doctor at my local hospital back in February told me that my father’s sudden death back in 1988 was probably due to a pheochromocytoma induced stroke or heart attack is enough proof for me to believe that I have one, and that it’s genetically linked. I know for a fact that MRIs and even CAT scans have failed to demonstrate these tumors, and if they do, then clinicians oftentimes end up sending their patients for a nuclear scan like an MIBG 123, and it’s usually successful. I don’t believe I will stay with my new cardiologist, because he is more interested in getting me on Eliquis, because I had to be taken to the hospital on 7/3 due to a sudden unprovoked a-fib episode, and because I develop RVR when I go into a-fib, they alway recommend transport; EMT put an IV in, and then administered a bolus of Cardizem in an effort to bring that ventricular (167) rate down. I was in the ER for 3 hours before I cardioverted on my own, which I usually do. If I didn’t I would just get the “paddles”, not a big deal. These pheos can cause all kinds of rythym abnormalities. In fact, back in 2019 (October), I was transported by ambulance, and the paramedics (they have more training than EMTs) did a 12 lead EKG, and they said my rythym was going from SVT to a-fib, then a-flutter, than ventricular tach. They said they had never seen anything like it, and that’s because pheos are not on anybody’s radar, because they’re rare. I hope they find this thing before it kills me.