Epicardial implant

They have discovered that I have a severe block in my superior vena cava from my pacer leads right at the entry to my heart. The Doctors feel we need to extract the leads and place a stent. They are thinking it might be best to then implant the pacemaker using the epicardial approach to avoid any more damage to my venous system. I am fully dependent on my pacer.

Curious if anyone else has had a similar block and also curious what other peoples experiences are with an epicardial implant? How much more invasive is the procedure compared to putting it in the veins? Any input is greatly appreciated as I have some big decisions to start making :(

4 Comments

SVC repair

by BrynaR - 2013-04-04 01:04:04

Hi! I am so sorry you are having to deal with this! I had open heart surgery to repair my SVC, which was occluded with scar tissue from several ablation procedures. At the same time they put in my pacemaker with epicardial leads; I did not have one before the surgery, the two problems started around the same time.

At the time I lived in Raleigh, NC but I traveled to the Cleveland Clinic for my care. The doctors I was dealing with in Raleigh had never seen a case like mine and it made me extremely nervous. Once I was up in Cleveland I knew I made the right choice and was in the right hands. The Doctor in Raleigh suggested a stent, but the Docs up in Cleveland said that was not a good idea because there is a chance it would need to be replaced or scar tissue might come back. Or, even worse, it could dislodge and damage the atrium! So they thought, for my case, it was best to do open heart surgery to repair the vena cava.

As far as the epicardial leads go... they are just like any other pacer leads, as far as I can tell. The recovery is supposedly the same, although I was recovering from open heart surgery at the same time.

I encourage you to talk to as many different docs as you can to see what approach they suggest. There are 2 other gals on here (not sure how often they check the page) who had similar experiences... we all three ended up having open heart surgery. I know that sounds absolutely terrifying, but here I sit, 2 years later, 100% healthy! PLEASE, feel free to email me with any questions whatsoever. I would be happy to share names of doctors etc. and talk to you in more detail about my experience. email is bryna.richter@gmail.com

Hang in there!

VCS blockage

by golden_snitch - 2013-04-04 03:04:52

Hi!

I had vena cava superior reconstruction via open-heart for the same reasons as Bryna. And my doctors also said, no stent or removal of my old pacemaker lead as this could do even more damage to the vein. They said it'd be better to go for the big surgery which has the better longterm outcome. Also, depending on how long your leads have been it, it might be very difficult to remove them. A friend of mine was supposed to have two removed, but they just couldn't get one of them out.

In 2008 I had epicardial pacemaker leads put in because my old transvenous lead finally failed. The epicardial leads procedure is much more invasive than a routine pacemaker surgery. You'll be under general anaesthesia, they will open up the pacemaker pocket and make an additional incision between your ribs below the right or left breast. Recovery took me around 6-8 weeks, while after a normal pacemaker surgery I'd be back at work after 2 weeks.

I'd suggest that you get a second opinion, before you make a decision. You need a good longterm perspective, and in my opinion a stent in the VCS isn't.

Good luck!
Inga

epicardial

by Lady Kate - 2013-04-04 11:04:37

My first pacemaker leads created a blockage in the SVC and innominate vein causing SVC syndrome which wasn't pleasant...
In short the pacemaker and leads were taken out and relocated on the right and stents put in the SVC and innominate vein. 3 months later I had a blockage in the right subclavian vein which after many attempts and new procedures they were unable to stent. The pacemaker and leads were taken out and an epicardial pm inserted.It is a sub xyphoid incision and the pm pocket is just to the left under my bottom rib. That was 8 years ago. The replacement I had in November was a simple uneventful procedure.
I still have right subclavian vein stenosis for which I take coumadin everyday and the stents in my SVC and innominate vein are still intact.If I had opted for an epicardial after my first episode I wouldn't be taking coumadin now!

epicardial

by Shirley - 2013-04-05 12:04:54

I was aware I had SVC syndrome prior to my total heart block and the need for a PM. Thankfully my GP called into the hospital and then came over to let them know of my lung condition and the SVC. The Drs. were concerned as to how they would proceed. Apparently they had never preformed an epicardial at this hospital. At first a temporary Pm was attached to the outside of my leg with the wires going up through the groin I believe. Then a permanent PM was implanted in my lower left abdomen, just above the leg joint. I believe they used part of an existing incision from a hysterectomy years earlier. I remained in the hospital for 8 days. I am coming up on my 5th year and have about 1.5 to 2 years left on this battery life according to my last check up. I pace 100% A and 2% V.
Hope this helps.
shirley

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