Concerned, venting, and confused

So I had a dual lead St Jude PM2210 implanted on 4 Dec 2012. You would think by now, somebody could figure out why I still ALWAYS feel like my heart is beating out of my chest, throwing beats here and there and just generally out of sync. On 31 Jul 2015, I was at my Electrophysiologist office and they turned off my ventricular pacing to see if that would help. I was pacing less than 1%. I asked, "but what about that 1%". It helped for about 10 minutes. As I was walking out of the doctors office on my way to my truck, I hit the ground with no warning. The lady that saw me said she thought I looked concerned and was trying to sit down. Well, they rushed me back to the interrogation room and turned it back on, then off to the ER again. Spent the next week recovering from neck and back pain. 24 hour/30 day monitors and all I get is another "adjustment". I just turned 48 and I know folks much older that have no problems with their pacers. It's been over two and a half years and I have not had one day where I didn't feel like my heart was about to either stop, explode or start beating so fast that it would come right out of my chest. I'm reaching the end of my "stay positive", "look on the bright side", "get another opinion", "give it time"....does anyone know of any amazing doctors in the central Florida area that can possibly have a trick up their sleeve? I had open heart surgery to repair a large aortic aneurysm. In the process of repairing that, they destroyed my AV node and also put me into BBB, and severed my Phrenic nerve...and I'm still smiling for now :) C'mon now, I need a great doc so I can get on living!

3 Comments

Just a guess

by Pookie - 2015-09-21 03:09:09

Hi. I had my pacemaker back in November of 2004 and had unbelievable issues for 5 and a half years before one of the Pacemaker Techs (who interrogates my pacemaker) said she thought she finally figured it out = low and behold she did. There is a setting called Optimization and for 99% of pacemaker patients it works absolutely fine when it is set to ON, but when she turned mine OFF I finally got my life back. I guess all you can do is ask for it to be turned OFF and see how you do, as it only takes about a minute of their time...as you may be just like me and be in the "rare" category.

Take care,
Pookie

I Understand

by Good Dog - 2015-09-21 11:09:23

I certainly understand your concern and frustration. I admire your ability to stay positive through this. If you were in Ohio, I'd suggest the Cleveland Clinic. Actually, it should not be out of the question if you don't get any relief soon. It may be worth the trip. They are a leader in the field!
In any case, I believe that you are correct to find a new doctor. I'm thinking that you should have found a new doc long before this. And yes, the best thing to do is get a reference from someone that has a great doc.
Wish I could be more helpful! I wish you the best...........and hope you are able to stay positive. You'll eventually get relief if you don't give-up!

Dave

Cleveland Clinic

by Tracey_E - 2015-09-21 12:09:40

There are probably some great practices in Orlando, hopefully someone will chime in with a name. There are several Cleveland Clinics in FL now. The biggest is in Weston, so not too bad of a drive. It's a challenge when they don't have any other cases like us so sometimes it's worth a drive to a facility that's part of a larger network that sees nothing but the challenging cases.

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.