Urgent Need Of Advice Before Apt Thurs.: Pet Scan Or Angiogram?

[Canadiangirl73]

Hello all,

I am in need of advice before my appointment with my not-so-nice cardiologist this Thursday. Last week, I tried to undergo for the third time a CT angiogram to no avail. This time though, my HR and my BP were co-operative. My BP was well above 100/70 and my HR was in the 50s. They could have easily done the test but given their poor understanding of dysautonomia, they said my HR would go up when I was to transfer on the CT table and was given the iodine contrast, and they were afraid it would stay elevated for the test in spite of my insisting it would go back down very quickly. Bottom line, they wouldn't listen, so I went back home, frustrated.

So now, my cardiologist will have had wind of this failed attempt and bring up the two other options he presented to me at my last appointment: an angiogram or a PET scan. Well, back in March, when another EP suggested a persantine test he was clearly set against it, telling me my BP would bottom out and I would have a fatal arrhythmia (I have a history of documented SVT, ventricular bigeminy, NSVT, as well as a prolonged QT interval). He offered me the test back in July, to my great confusion and this time told me there would be paddles in the room should I have an irregular heart rhythm. This did not reassure me. The fact he changed his mind without giving me any explanation doesn't build my trust in him and the PET scan. During a PET scan, they inject you with persantine and then aminophylline. I read the side effects of both medications and there are a lot of nasty ones in normal people, never mind those who have dysautonomia and a predisposition to have arrhythmias like I do. Another doctor last year told me she would NEVER do a persantine stress test on me for those two reasons.

The other option he brought forward was an angiogram. Not sure this would be the test for me given my heart is easily irritable. I know it is not the same location or organ, but I had an irritable uterus throughout both pregnancies (meaning it would contract almost constantly), probably in hindsight part of my nervous system issues. My GP decided against an IUD for that reason since she thought my uterus would see the IUD as a foreign object and try to reject it. Well, having a catheter in my heart might send it for a spin if my ticker copies my uterus' behavior, exposing me to risks of punctures in my heart, vessels, and strokes, etc.

My cardiologist backs me up against a wall, leaving me little time to make decisions about tests. I know I will have to choose between those two on Thursday and am actually considering not doing any. Then again, I am not sure if not ruling out once and for all whether I have a blockage or not is a good idea. UGH!!!! As you can tell, I don't know what to do!

Has anyone undergone one or both tests? How did it go? Did you have complications?

I should add I am 40, normal weight (was underweight before dysautonomia struck. Dang betas!), but had elevated cholesterol for close to 14 years whilst on the birth control pill, but cholesterol levels have been normal since I stopped the BCP 6 years ago. My dysautonomia onset coincided with a very transient heart failure over two years ago, but the heart failure actually resolved within two weeks time, so my EF has been good since July 2011.

What should I do? PET scan? Angiogram? Nothing??? My head is spinning I'm so undecided. Help!

[sue1234]

I don't have any answers for you, but curious why you are having a PET or angiogram?

[Canadiangirl73]

My cardio wants me to undergo a test to rule out blockages. I had a stress echo back in June but it was inconclusive given my quick HR increase. I posted about it a while back: http://forums.dinet.org/index.php?/topic/23821-stress-echo-showed-reduced-stroke-volume-after-exercise-what-do-you-think/?hl=%2Breduced+%2Bstroke

[andybonse]

CT Angiogram is the most effective non-invasive way to check for blockages, after that is the gold standard angiogram.

I'd opt for CT, get your cardiologist to explain to them and they may listen next time.

[SarahA33]

Hi Canadian Girl,

I've had virtually the same cardiac work-up and it's not easy. I'm really sorry you have to go through all this. I tried a CT angio twice but we seem to have had opposite problems, they couldn't get my heart rate to come down. So, next time I took two clonidine and an Ativan.

"The radiopharmaceutical injected into you for your PET scan is called FDG, which stands for “fluoro-deoxy-glucose”. This is a very low concentration solution of glucose in water. The glucose, or sugar molecules, have a radioactive isotope of fluorine attached to them which allows the scanner to “see” where the sugar is being used (metabolized) in your body" ( adronline.org ) Anyway.. I had absolutely no reaction from this, which is rare for me. The biggest pain was having to sit there for an hour after injection.. And use to the ladies room first, because if you have to pee you reset the whole thing.

If your body wont cooperate with the CT Angio then I'd go with the PET Scan, the normal angiogram isn't awful but its invasive . Maybe you can squeeze another quick echo in there just to be sure?

[SarahA33]

And I forgot to add that the fact that your cardiologist is "backing you up against a wall" is really just wrong. And having poor trust in him from the first incident is also a reason to maybe find another cardiologist who doesn't sound like a bully?

[cupcakemomma5]

Hey Hun,

Why don't you ask your gp for a referral to Dr.Higginson (heart Institute). If your doctor is backing you in a corner than he really isn't helping you. I am really sorry you are going through all this right now.

Keep me posted. Txt me and let me know how the apt. went.

[Gemma]

Hi everyone. I am trying to find here if anyone ever had reaction to contract dye that they use in ct scan. I had a pulmonary ct scan with dye done this may and after it i started having issues with my bo and hr. The following day after the ct scan was done i had to go to ER because my HR was going up to 130 upon standing, felt palpitations, and drop in BP. I had symptoms of dysautonomia before that, but it got really severe after doing ct scan. Still 3 month later i have this issues. Now due to my constant every day chest pains, my cardiologist suggested doing cardiac ct scan angiogram with a dye. So now i am scared that i might start feeling even worse after that test. Another cardiologist advised to do catherization because its a gold standard test, but i am scared and its too invasive and complicated. Cardiologist that suggested ct scan says that catherization is too much for me. All my tests showed up negative. I had many ekgs, 3 holter monitors, 2 echos, stress test, and echo stress test. All negative. But i feel chest pains every day and its really disturbing. Cardiologists say that they think there is really nothing going on with my heart and that pain is most likely not from heart, so they will do these tests for my peace of mind, to calm me down. Well i know they say nothing wrong with my heart, but when I feel the pain, i start panicking and think maybe they are missing on something. I just started small dose of beta blocker and it seems to releave some pain, so now i am really concrned because if it releaves the pain maybe there is really something bad going on with my heart. Also, i am 31, 115 lb, overall healthy, but my chokesterol is 188 and bad one (ldl) is 108, which is a little elevated. Any advise on this issue. Thanks everyone.