Frustrated by docs lack of info...

Hi everyone,

I'm in quite an annoying place at the moment. I've had all the tests (angiogram, stress test, tilt test and EP test) and I'm now wearing a holter monitor for 24 hours.

My cardiologist has seen me almost faint after the stress test, I fainted during the tilt test, he acknowledges that there are electrical anomalies in my heart but he hasn't spoken about what he is going to do for me... Or what is causing the anomalies. I've guessed at heart block or symptomatic bradycardia leading to syncope.

This morning I went to the hospital to collect my holter monitor and needed to jog to the toilet upstairs as I needed it desperately. Whilst standing there relieving myself, I felt my heart rate plummet and my heart paused for a second or two and obviously I almost fainted... This was before I had the monitor fitted.

I just hope that there is something in the results that show what happened.

I'm pretty sure that I need a pacemaker but I'm frustrated by my cardiologist's lack of communication. He hasn't given a definite diagnosis yet nor said anything about treatment... Is there anybody else who experienced something similar prior to getting a PM? Why do docs withhold information?

Regards,
Drew

11 Comments

Enough Is Enough

by J.B. - 2013-09-17 03:09:33

From what you tell us here you certainly could use a pacemaker. If this doctor doesn't do more your next visit I say look for a new doctor.

Watch out,

by Terry - 2013-09-17 06:09:05

if you do need a pacemaker for heart block, seek to get the ventricles activated normally. Google PacemakerPatientAdvocacy.com

My take

by Grateful Heart - 2013-09-17 09:09:16

Communication works both ways. He is probably waiting for the holter results but why don't you just ask him if he thinks you may need a PM? Let him know you want to know what is going on and you want to be involved in your healthcare decisions. If he does not listen to you then.....seek a 2nd opinion.

I had a Doctor who did not listen to me when I was in the hospital and in pain while trying to breath. He overlooked fluid around my heart because he chose not to listen to me. In hindsight, I think he thought I was just nervous and anxious having a new device implanted a few weeks earlier. He was wrong and.....no longer my Doctor.

I hope you get some answers soon.

Grateful Heart

Because "You can't handle the truth..."

by donr - 2013-09-17 09:09:40

...At least that's what your cardio thinks of you.

Sounds to like one of two things;

1) He doesn't really know what the basic problem is at this point & wants to get a test the shows him unequivocally...or,

2) He does not think you are either intelligent enough or have the capacity to accept & tolerate the truth.

In case 1), he may have a plan, but isn't sure himself of what to do. His progression of tests tells me he is looking for something concrete to be recorded before he will commit to a diagnosis. Actually, a Holter worn for 24 hrs will confirm nothing unless it records one of the events you experienced in front of the urinal. He should have you wearing it till you experience & record one episode. Then he will know something. Perhaps he should have started w/ that test, since you obviously reported those symptoms to him during your first meeting (I hope!).

In case 2), he is not enlisting your cooperative capabilities in arriving at a diagnosis.

BTW: In most cases he will NEVER be able to state what caused your electrical malfunction. It's exactly like a TV set that croaks - it just happens w/o EVER giving a reason.

Don

A little bit of both...

by Gijima89 - 2013-09-17 09:09:59

Hi Don,

I think that he is withholding info for a little bit of both reasons. Possibly has an idea as to what the problem is but is waiting for 100% certainty before he tells me. He probably thinks that I will panic or something if he is straight with me or that I'm too stupid to understand the medical problem I have. He is wrong on both counts...

I guess I just have to be patient... And if he isn't soon I will start demanding answers...

Thanks for your thoughts.

Drew

age

by Tracey_E - 2013-09-17 10:09:01

You already know my opinion on the holter ;) You've had two positive tests indicating pm now. The additional information isn't going to change the outcome, just delay you feeling better.

Could it be your age? Some drs are very hesitant to put a pm in someone young and otherwise healthy. I ran into that myself, put it off for two years. The dr thought I was "too young" so we waited. In hindsight I really resent that being too young was a reason to let me feel bad for so long. I could have been feeling good for those years. This is a big pet peeve of mine. If the pm will fix our problem, why mess around?

Can you have a conversation with him sooner rather than later? Because if you are passing out, you shouldn't be on stairs, driving, be anywhere you can get hurt if you fall. Waiting can be dangerous. Ask him what, exactly, he is hoping to find from the holter that you haven't already learned. The holter will tell if you are pausing or dipping too low. That's nice to know, but you already know what's making you pass out so it doesn't really matter at this point if you have problem A and B, or A, B and C. The fix for all of them is the same.

Make a list of questions in advance and write them down. It gets too easy to be sidetracked otherwise when we talk to them.

Please be careful!

Liability !!

by donb - 2013-09-17 10:09:12

Having been down the road of care-receiving with Cardiac surgeries since age 60 along with my wife working with a group of cardiac surgeons for 25 years it has been a learning experience. Fortunately in your line of work my title of comment is not as much a risk of "Liability". Just recently after going through trauma for my treatment of pacemaker removal, infection treatment & major changes with relocating my pacemaker site by a top EP surgeon. I did not even get my regular Cardiologists involved as I went to our top University.
After being home I needed a prescription refilled & had to go back to my regular Cardiac Surgeon only to find a completely different person. He opened up with info with me as never before the past 21 years. I could read between his words as he was & still is sharing with my condition as he was relieved of the Liability. It is very sad that our Medical profession is so stressed having to have concrete diagnosis & treatment.
Hopefully you will get positive test results and good treatment just as we "speak", or as I type. Good Luck & God Bless !!
DonB (The other Don)

You need the monitor results

by mkaz03 - 2013-09-17 10:09:14

Without the monitor results the doctor cannot tell definitively what the problem is. But I think you need to be wearing a 21 day monitor to identify anything. The first 4 times I almost fainted (always on the golf course in the winter), my doctor said my Under Armour compression shirt was too tight causing a vaso vagal reflex. When it started happening again 4 months later in warmer weather she finally ordered the 21 day monitor. I not only had bradycardia but atrial fibrillation. When I finally saw a cardiologist with these results he explained that during the exercise (golf) my heart rate would go up and then come plunging down. I got a pacemaker 1 month ago and am on meds to control the afib...I suggest you make sure you take a run to the rest room like you did recently to get something on that monitor. mk

I felt faint several times

by Jax - 2013-09-18 12:09:55

I would go to the dr and he would give me a monitor but nothing ever showed up. He wanted me to see a neurologist an allergist an eye dr but never considered it was my heart. Wrong!! It was only because I insisted on another halter monitor and when I brought it back my dr wasn't there but one if the other drs read the results and told me I would need a pacemaker. I was stunned but relieved at the same time. Doctors-- yuck!!!

Hi TraceyE

by Gijima89 - 2013-09-19 03:09:32

I'm 36 so I'm not sure if my cardiologist thinks I'm too young for a PM??

Hi everyone...

by Gijima89 - 2013-09-19 03:09:51

Thank you for all the messages. You have given me lots to think about, but I'm playing the patience game at this stage. I should be hearing from my Cardiologist today, after which I hope to have some definitive answers. If not, I'm going to be asking lots of questions...

I will post an update later on or tomorrow...

You know you're wired when...

You are always wired and full of energy.

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