UpToDate? Information my cardiologists didn’t have.

Different POV

by AgentX86 - 2019-10-18 19:02:16

I wouldn't expect a cardiologist to be up on all the latest research in electrophysiology, particularly long-term patient studies. I would expect that a cardiologist would refer such a patient to a good EP, though, at least for baseline testing and consultation.

In general,  the physicians I've dealt with are very good, perhaps because I've been referred to them by very good doctors. The last PCP I went to was pretty bad,  though. He doodled all the way through the first appointment. I haven't been back and have to find another good one.

Not as rare as you might think

by crustyg - 2019-10-18 19:40:06

There are contributors here who have congenital AV block.  It's not that different to the self-help groups that develop around specialist children's hospitals - ToF, facial dismorphyia, TGV, Fallot's etc.

No physician can be expected to be an expert, or even completely up to date, in *every* particular field - the wise physician is keenly aware of his/her limitations and approaches medicine with an open mind.

Best lecture I ever attended at Med School started with '50% of everything in your expensive textbooks is wrong, and sadly probably 50% of everything we're about to teach you will turn out to be wrong'.  And how true that was!  First week, too.

And the smart patients understand this and take care to select their medical advisors wisely.  And advocate for themselves.

Not surprised

by PacedNRunning - 2019-10-19 03:20:52

I'm a nurse and I have access to the website up to date too. When I got diagnosed with exercise induced heart block 2:1, I looked at UpToDate.  I found information on this site about an ablation for heart block and asked my EP if he could do that. He kind of chuckled when I asked that. He still hasn't figured me out and doesn't seem to make time to. It's just how our medical system works. 

Comment Responses

by gettingpaced - 2019-10-19 11:17:41

Thank you for your comments!

@ar_vin: During medical school I think I trusted my cardiologist (a specialty of internal medicine) would transfer me to an EP if they thought it was necessary. I went to an EP after showing my cardiologist the study I had found via UpToDate at the beginning of residency. In the meantime, I have connected with a number of EPs and learned that the medical guidelines actually don’t provide much guidance for individuals in my situation (because I am asymptomatic and without so called complex ventricular ectopy).

It may sound strange, but there are countless contexts in which medical guidelines are not black and white. In cardiology, for example, it has been estimated that only about 10 percent of the cardiology treatment guidelines are based on the results of randomized controlled trials and meta-analyses (https://jamanetwork.com/journals/jama/article-abstract/2728486). This causes the advice patients receive to often be colored by personal experience, tradition, and sometimes even the fact that medical institutions are paid for providing services.

@crustyg: I am well aware that there are people with congenital AV-Block on this platform :-). As I mentioned in my post, complete AV-block, is estimated to effect between 1 in 15,000 to 22,000 live-born infants. None of the cardiologists I have gotten to know as a patient or colleague have seen more than a few if any patients with my disorder.

I don't expect physicians to be an "expert, or even completely up to date". I do expect them to know when they either need to inform themselves about treatment guidelines and refer a patient to colleague. 

CCHB

by dwelch - 2019-10-20 01:22:41

I have CCHB.  Was found pre teen first pacer at 19, I am on pacer number five, 32 years with pacemakers. (I probably have leads older than you)  I guess I was lucky on one respect that the cardiologist my parents found was doing pacemakers, which at the time was just going over the edge of becoming mainstream. 

At that time they did not know what caused CCHB, many years later they did.  My mom did not have an auto-immune disease that we know of so not sure how I got it either.

My pacemaker life pre-dates the internet, once things like wikipedia and medical sites started happening I did look it up.  I have tried the internet archive, I really wish I could find the stats I saw way way back when.  The life expectancy for CCHB was not good, at that time based on the stats I saw I was lucky to have made it to 19.  

I was VERY active, the doc had basically told me I couldnt play soccer any more.  I later moved onto BMX and skating.  Did a half century on a whim (50 mile bike race) doc told me that people in my condition have died from a stunt like that.  So as a teen I simply didnt tell him anything else I was doing (rather than stop taking risks).   You are the doc I am not but I feel I am pretty damn lucky to be here, I was pushing my heart hard every day.  He was measuring the size of my heart and muscle wall thickness and it was a handful or more years before he told me it was time from when I first saw him to device number one.  Had he only know what I was up to I suspect I would have had one sooner.

I can confirm that while some docs have more than one "young" patient, often they do not, so they may not see this very often per doc.  My current EP says I am still her youngest paitent.  From those first pre-teen visits to now I am always the youngest in the waiting room.  It wasnt until I found this site (decades into my journey) to confirm there were others like me/us out there.

I didnt realize there was a problem with docs not knowing about heart block and how to treat it.  This is a very serious concern.  I hope that you can find and keep alive the pre-pacemaker statistics, now if you search for it you find that the statistics show that it has very little risk due to pacemakers.  Before them though I want to remember I saw 80% chance of not making it past the teen years.  Something in that ballpark.  So if docs are not educated on this then their patients are at risk.

I can confirm that they (as you well know) teach the condition and where it comes from.  I went to an orthopedic surgeon and his intern was giddy to see me and my condition as he remembered the answer on the test and got it right.  

I know you cant legally give us medical advice, and that is fine but as a patient I hope you continue to visit this site and comment.  As a doc continue to spread the word, educate the senior docs who may not be as up to date on pacemakers and young patients as they should be.

There are a number of us here that started young, this year someone who has another decade on me, something like 8 or 10 devices.  When I first arrived here a while back now, someone was here that had started at 8 years old and was on their 10th at that time, would be 11th or 12th by now.  not saying I have the most devices or most years, I dont, certainly, but have more than the average pacer patient.  

I know you said you knew there were other CCHB folks here.  As a patient you are not alone.  You will find that despite our lack of actual medical training there is still a lot of good information here.  (some I suspect are in the medical business)

If there is information out there that the general public has access to that would be great, we see the rare young person with a condition, sometimes heart block.  The rare parent concerned for their child as the general public seems to look down on pacemaker patients as having a restricted life rather than reality.  For some folks data is good, helps them through their decision to go along with the doc and get a pacer. 

Honestly though I think you are the first I have seen that is the other way, doc didnt recommend a pacer but you were your own advocate.

Did you end up getting your device yet or still waiting?

What I have learned to expect

by Gotrhythm - 2019-10-20 15:11:46

Gettingpaced said, "I don't expect physicains to be 'expert' or even up to date. I do expect them to know when they need to . . . refer a patient to a colleague."

That seems like a reasonable expectation. Unfortunately it is a naive one, as I found out to my cost.

In my experience doctors without hesitation will refer a patient to an outside specialist. However, when they encounter a patient who does not respond to treatment, or some condition they don't know how to treat, they a) blame the patient, say the patient has not followed the prescribed regimen b) say nothing can be done c) diagnose mental disturbance--particularly likely if the patient is female, If the patient returns, anything the patient says just confirms the psychiatric labeling.

I saw three different cardiologists over a period of about seven years. All the tests were negative. Depending on which symptoms they focused on, tiredness = depression, erratic heartbeat = anxiety,  racing, pounding heart = panic attacks, they suggested an "emotional" cause. Not one referred me to an EP. 

Focusing on my SOB complaints, one did send me to a pulmonolgist. Please note:a specialist who was no a cardiologist. The pulmonolgist listened to all my symptoms and ordered a Holter monitor test--something not one cardiolgist ever had done. 

Listen, physicians are human beings. Most are good, well-meaning people who care, and are doing their best. I don't expect them to be perfect or to know everything.

And I have learned not to expect that they will refer me if my case is beyond their ken. It's not what they do. If I'm not getting effective treatment, it behooves me to take myself to someone else.

You, Gettingpaced, are at the start of your career. I'm sorry you've had a hard time but since you're going to be a docotr, you have had a salutory lesson in what patients go through when their doctor proves all too human.