High Coronary Calcium Score: How do others feel emotionally?

I'll be going to a new cardiologist this coming Friday and hope he is one that connects with patients. I have learned a lot since reading everyone in this forum, reading and listening to friends (some of the friends want to play doctor and keep pushing me to get stents mainly because their husbands had heart bypass surgery, they say I am ahead of the game...). I want to have the nuke, stress and EKG tests to see how my heart is doing but at the end of the day it comes down to "to stent or not to stent". If I do decide to go through an angiogram then there is not much to say. At that moment the doctor will ask me if I want the stents. Stents will reassure that my arteries will allow blood to flow with no problem. So it is a huge decision. I read many had higher calcium scores and pretty much managed to have a normal life without stents. But wouldn't one want to close this chapter of uncertainty -with stents- for a better tomorrow? Maybe my "doctor" friends are right and I live in denial....

I'll be going to a new cardiologist this coming Friday and hope he is one that connects with patients. I have learned a lot since reading everyone in this forum, reading and listening to friends (some of the friends want to play doctor and keep pushing me to get stents mainly because their husbands had heart bypass surgery, they say I am ahead of the game...). I want to have the nuke, stress and EKG tests to see how my heart is doing but at the end of the day it comes down to "to stent or not to stent". If I do decide to go through an angiogram then there is not much to say. At that moment the doctor will ask me if I want the stents. Stents will reassure that my arteries will allow blood to flow with no problem. So it is a huge decision. I read many had higher calcium scores and pretty much managed to have a normal life without stents. But wouldn't one want to close this chapter of uncertainty -with stents- for a better tomorrow? Maybe my "doctor" friends are right and I live in denial....

@alaskat

How do they know you need stents without an angiogram or CTA? A high calcium score does not mean you have blockages or that you have blockages that would require stenting. 2nd opinions never hurt....measure twice and cut once! Good luck to you.

The CT scanner is spinning, a person's heart is beating. It least in 2017, it would seem that some manufacturers of CT scanners (two out of the four tested) were creating errors of up to 50% at only 75 bpm. There was no testing past that point (errors at even higher rates). For me, my heart was readily up at 110-120 BPM, because like you, I hate being in a tube! hee hee hee
There is a body of math (Fourier) that can compensate for some motion blur, but it is not infinite. It sure would be nice of the FDA to make the manufactures certify that their CT scanners are artifact free up to a certain heart rate, and currently that is not the case.
Back in the day, when I designed, built and installed a bi-axial cardiac visualization system to image baboon hearts in motion, it required filming (yes, real film) at 400 frames per SECOND to create motion free filming of the high speed fluoroscopes used in each axis. Even then, the baboon hearts had metal markers attached to the surface of the heart to have exact registration for the motion study of heart walls.
We have much cooler stuff available now to image hearts, but from my experience I have an intuitive thought about how heart rate affects imaging. And thanks to this forum has revealed, there sure appear to be a lot of folks with monster heart scores and more healthier hearts than not. I hope I am one of them!
In any regard, I will have to be checked out by thorough imaging, and likely intra vascular. My guess is that there will be a "project" to attend to, but I am doubtful that it will be to the extent given by my CAC score.
By the way, I am grateful for all the kind responses over the weekend to my story. As this forum opened, it is an emotional journey.

I find this very interesting although I don’t claim to understand the link you sent. What I do know is that my BP was too high initially for the scan so they gave me a beta blocker and then I went into the tube. I have slight claustrophobia but generally tolerate these types of test although not easily. I wonder if that could increase my calcium score. Is that what you think?

I find this very interesting although I don’t claim to understand the link you sent. What I do know is that my BP was too high initially for the scan so they gave me a beta blocker and then I went into the tube. I have slight claustrophobia but generally tolerate these types of test although not easily. I wonder if that could increase my calcium score. Is that what you think?

I dont know if this helps you any, but I designed cardiac imaging systems for NASA back in the day, so when I see all the high CAC scores on this forum I am dubious that they are without error.
The most obvious potential error is heart rate. I know for me, my heart rate was pounding fast, as I am not a great fan of getting stuck in a tube. A lot of these CT Heart Scan imaging systems were designed for a resting heart rate of 60 bpm, with the assumption that the HR would be below 75 bpm.
My rate was like 110 to 120. I imagine others on this forum have had the same experience. Nothing was said by the radiographer at the time about my heart rate.

Here is a nice paper on CT Heart Scans and heart rate. I shared it with the group back in December:

Influence of heart rate on coronary calcium scores: a multi-manufacturer phantom study
https://link.springer.com/article/10.1007/s10554-017-1293-x
The paper was published in 2017, so a lot could have improved by now, but math can only go so far in compensating for motion artifacts. That said, they were seeing up to 50% greater scores on some CT systems due to moderately high heart rates on several brands of CT systems.

All I think it indicates is that there is a potential that there are imaging errors and that it is wise to use other imaging methods to evaluate where a person is at.

My latest experience was with a cardiologist that believed so strongly in the CAC score alone that he felt that no other imaging was necessary.

So for me, with such a high score and the possibility of error, I want imaging that will evaluate my heart condition as if CT Heart Scans didnt even exist. A completely independent view. I was greatly surprise when the cardiologist would not do so (echo with stress, nuclear with stress), and would cath me only if I insisted on it---else he would not order ANY imaging.

There are a lot of different views on diagnostics for heart disease, and then again treatment. The most conservative methods have been the use of statins on the assumption that cholesterol is the culprit, and angioplasty and stents on the mechanical side. It is a tried and true method, and it works for some people and not for others. The cardiologist I saw falls into this camp. That is ok. But his bedside manner and condescending view that all other methodologies are seriously flawed was not welcome (at least to me).

If a cardiologist is going to be poking around in my heart arteries, I am interested in intravascular lithotripsy. This uses shaped ultrasound shock waves to break up the calcium and plaque both in the artery and the wall. It is not exactly a new idea, but the ShockWave execution of the idea is novel and refined, and to me appears to work well.

The cardiologist I saw literally said IVL "its garbage!" He is entitled to his opinion, but I find hope in the technology, and there are a growing number of cardiologists that feel similar. So I will be seeking one out that shares my enthusiasm towards the technology in case I need it.

As for statins, there are a lot of great alternative medications available now that will lower cholesterol. The emerging question is what roll does inflammation have as the primary cause of heart disease, with cholesterol being an interim component of the bigger picture.

I imagine skipping forward to a nuclear perfusion test with stress is the likely first step for me. If that indicates immediate concerns, then I would like someone capable of IVL in the room if they are going to go into my arteries for a look---might as well get on with it if they see a blockage or the need for pipe cleaning.

That is my plan. I was widely taken back at the veracity of the cardiologist I met with last week. It was his way or the highway. That is ok if he feels that way, but to suggest to the patient that they should go home and live out their short life for not following their personal methods was just ridiculous.

Every one has to find something that is comfortable to their own needs. You are betting your life on it. It is a personal decision.