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.
I’m so sorry to hear you have had no resolution of this very serious problem.
I don’t know if you remember my situation, but some of our symptoms are similar. I have not found any answers either.
I did have another CT scan of my adrenal gland where an adenoma had been found nine years ago.
It is now smaller than it was years ago, so doctors still don’t believe it is causing my anxiety, and sleep disruptions. I don’t know.
I have more cortisol testing coming up. My doctors seem to think getting cortisol levels down will alleviate some symptoms.
Good luck to you.