Wired for nothing

second opinion

by Penguin - 2023-09-24 05:23:44

It sounds as if a second opinion is essential to me.  I'd want to see a very good surgeon / cardiologist for this, preferably with some experience in the issues you describe above and with knowledge of implanting leadless devices - although I hear that you've said no to one and I can see why.  

Which condition was your original PM implanted for and how are you feeling (physically) with low % usage?  Does this doctor think that you could manage without a PM and if so what's the plan for managing the heart condition that was originally diagnosed without one? 

You need to know what the alternatives to pacing may be. If there is no alternative to pacing, perhaps a leadless device is something to discuss in your second opinion - but very, very thoroughly!!

I'm so sorry that you've had this experience. It sounds awful. 

You would be best served by the best

by Good Dog - 2023-09-24 09:43:13

Clearly you have had a very difficult and troublesome history. Your situation is a little more complex than the average patient with a simple problem. It seems likely that whatever you do, it is probable that the old leads will need to be removed. I don't know if you have had the best available care or not, but it seems pretty clear that you seem to have lost confidence in the docs that have cared for you. Confidence and trust in those that are caring for you is so critically important. The quality of our lives is at stake! I think that you are very wise to get that 2nd opinion. Just be sure that whoever you see for it is not affiliated with your currrent Doc or hospital system. As I am sure you know, docs do not always like to contradict other docs.

I have another suggestion that you can take or leave. It seems to me that you may be best served by an experienced team at one of the better cardiac hospitals. I understand that it may be more difficult logistically and more costly, but it may help to be able to restore your trust in the opinions that are offered. I am just not sure you will get that by some small town and/or poory equipped medical facility that does not regularly specialize in difficult cases. I am not suggesting that is the issue here, because I really do not know. However, just know that the more specialized facilities that deal with a high volume of difficult cases have teams that work together to offer the best or even multiple choices of solutions that may be available to best serve you. If you have an interest in doing so, I've included a short list of some of the best. I understand that none of these are close to you and this may be more than you wish to pursue at this point in time. There certainly are more and perhaps one closer to where you live. It is just a suggestion to consider.

I wish you the very best and I am confident that together with your Doc, you will eventually be able to make the best choice for you.

Here is a list that I mentioned of the best and most widely known facilities specializing in cardiac care:

 Cleveland Clinic.

Cedars-Sinai Medical Center (Los Angeles)

Mayo Clinic (Rochester, Minn.)

Mount Sinai Hospital (New York City)

NYU Langone Hospitals (New York City)

NewYork-Presbyterian Hospital-Columbia and Cornell (New York City)

Sincerely,

Dave

1%

by Tracey_E - 2023-09-24 14:56:25

Why did you get it in the first place? 1% doesn't necessarily mean it's not serving a purpose. If you were having pauses which caused passing out, it would only kick in a few beats at a time. Statistically that's nothing, but practically it's keeping you from passing out. 

I second Dave's recommendation to get a second opinion at one of the large heart hospitals. 

Thanks everyone

by iRonMan - 2023-10-03 21:51:44

Reading all of your comments are helpful. I will be getting a second opinion at a different hospital so as to get an honest review.  

My first visit to ER which decided I needed a PM was pretty traumatic where my rate dropped to almost nothing for nearly a minute and it was not a quick rebound. I was in and out that day for about an hour.  Since then, as I said, my usage went from 10 percent to 1 percent in 8 years. I had several months of it not working because of the leads and I had body shakes going on, dizziness and low energy.  Right now I feel pretty normal and work out some, ride bike, camping, play guitar with a band, etc.  Dunno, pretty confused about it all until I get the second looksie this month.  I'll keep you posted.