Need Advice in Making Pacing Decision

Hello all and thank you for reading! All of these scenarios sound eerily similar to my life. Nearly 20 years ago, I failed a tilt table miserably. Diagnosed with inappropriate atrial tach,SVT and cardioneurogenic syncope. Was ablated very aggressively. The EP obliterated my SA node and I was now left with a diagnosis of SSS and chronotropic incompetence. AAIR pacemaker implanted. Very shortly after implant we discovered that the EP who aggressively ablated my SA node, also destroyed the junction of my superior vena cava (SVC) at the right atrium. It was 100% occluded with retrograde blood flow. Had full SVC reconstruction and endocardial lead removed and changed to an epicardial system. Long story short (it really is a long story), epicardial lead fractured while I was completing an extensive protocol to revamp the adrenals. Had no idea lead was fractured for nearly 4 weeks...had no symptoms at all. Pacemaker was permanently explanted in 2007 due to discovered vast improvement after adrenal revamp. I have been perfectly fine and stable and without the need of a cardiologist/EP for nearly 8 years with tons of energy. I am now a doctor and was given a vaccine to be around patients in the clinic in April of 2014. I developed vaccine induced myocarditis which progressed to the beginnings of dilated cardiomyopathy. With that diagnosis came the breaking down of my re-established nearly 8 year running stable rhythms. I now have marked and often debilitating fatigue, heart rates in the low 30's at night and 40's-50's during the day. Chronotropic ability is still intact to a large degree. I have tried everything in my power to reverse this damage and re-establish the stability and energy that I spent so much of my life creating. I had a Medtronic Reveal LINQ installed 3 weeks ago and it is constantly downloading data to confirm my greatest fear....pacing. My cardiologist wants to implant an endocardial lead into my reconstructed SVC. I just do not think I can do it as I almost did not survive the first SVC reconstruction at the age of 24. If the SVC is once again damaged, I do not think I will make it through another repair. My options other than that would be thoracotomy, sternotomy and the like. I have two very young children and I cannot fathom going through this again not knowing if the changes in fatigue level and the overall feeling of increased health will 100% be the return for agreeing to the pacer as agreeing will eventually result in a logistical nightmare for lead placement due to prior surgery. The problem is that I cannot remember what I felt like with pacing....it has just been too long without it. My question....has anyone noticed MARKED, life altering changes in fatigue and overall feeling of health with (atrial pacing only) for heart rates in the 40's-50's during the day and 30's at night? This is a decision that I just cannot make without serious research and advice due to the placement of the lead and knowing I cannot undergo another full SVC reconstruction.
Thank you for any advice....

5 Comments

Thank You

by DocK - 2015-09-14 04:09:08

Thank you to you both....very much appreciated! I wonder how many of us there are out there now who went in for a simple ablation to correct an arrhythmia and left with a full SVC reconstruction? I know current research states serious precaution for SVC syndrome when ablating at the SA node.

Do you know what type of reconstructive tissue was used for your SVC? I had a pericardial patch and the reason I ask is that they now typically utilize the saphenous and the like so I wonder if the tissue used determines the success rate of introducing an endocardial lead into the vein? You would think some tissues are just better suited, but since reconstruction is so rare....again, there is likely no data to suggest what to do.

I have been lucky in that my repair is still patent to some degree (to what degree I am currently unsure, but definitely functioning). I feel like it is akin to waking a sleeping giant by introducing a lead into a perfectly reconstructed, fully operating vein. I just hate to walk down that road again as I feel there is a reason that my cardiothoracic surgeon permanently removed the endocardial lead that was placed in the SVC prior to reconstruction and purposely placed the new lead in an epicardial position. Unfortunately the cardiothoracic surgeon is now retired and I trust his thoughts on the introduction of an endocardial lead into the vein more than any venography or CT/angiogram.

I am so glad to hear that you are now doing well. It just becomes rather complicated when you have to start thinking about alternative routes to the heart (as you know well).

I am still holding in the 30's at night and have not yet dropped into the 20's on any occasion that I currently know of. Did you feel that your fatigue level changed instantly with pacing? My EF has dropped dramatically since the myocarditis/DCM began and I feel that pacing will likely not change that factor to a large degree, so I am basing my decision on whether I feel the fatigue level will change.

Thank you both again for your response and well wishes. My best to you both as well and thank you.

SVC Syndrome

by golden_snitch - 2015-09-14 04:09:24

I got a pericard patch that measured 3 cm x 6 cm to reconstruct the SVC. Did you have a full sternotomy? My surgeon was able to do the whole reconstruction via mini-thoracotomy below my right breast.

Two years after the surgery I started developing stenosis in my left innominate and subclavian vein. Have been on a blood thinning medication ever since. There's still that old endocardial atrial lead in the SVC. Surgeon said, it cannot be removed because he expects the tissue, where the tip of the lead is attached, to be inflammed, so that it would rupture easily. I had my latest CT with contrast dye in 2013, so ten years after reconstruction, and the SVC was still wide open. Not sure though, if this is also because I'm on a blood thinner.

I know two more patients in the U.S. who had the same thing happening. One of them had the reconstruction and got epicardial leads, the other got a bypass with a vein taken from her leg and also epicardial leads. I think, the bypass is no longer patent (two pacemaker leads in there, the epicardial leads caused problems), and they have now stented her SVC. She's having SVCS symptoms.

Yes, my fatigue level immediatly improved when I was paced. Before, when I got up in the morning, I felt like I hadn't slept and was exhausted. And at daytime I had problems concentrating and so on. As soon as the pacemaker was in, set to 60 bpm and with the rate response switched on, I was feeling much better.

Best wishes!

Pacemaker leads & SVC

by golden_snitch - 2015-09-14 06:09:45

Hi!

I have a reconstructed SVC, too, due to scar tissue from sinus node ablations causing severe SVC syndrome back in 2003 (when I was 22). At the time of surgery, I already had a single-chamber pacemaker with an endocardial lead in the right atrium in. Surgeon left it in as he believed that the stenosis was caused by the SA node ablations, not by the lead. And what he saw during surgery confirmed that.

But when I needed an upgrade to a dual-chamber pacemaker in 2008, he said that he would not put a second pacemaker lead into the reconstructed SVC because of the risk of re-stenosis; I had already developed stenosis of the left innominate and subclavian vein at that time. So, I got epicardial leads for the left atrium and left ventricle via mini-thoracotomy. The incision was made between the ribs below my left breast.

That was in 2008, and nowadays there are some surgeons who can place epicardial leads via keyhole surgery (laparoscopy). That might be an option for you, if you do not want an endocardial lead. Also, when I had my upgrade, there was one cardio who told me that I could get a new and very thin endocardial lead (by Medtronic) instead of epicardial leads. But I agreed with my cardiothoracic surgeon that a second lead in my SVC might not be a good idea. But just that you know that there are very thin endocardial leads available now.

Before I got my first pacemaker I was in the situation you are in now, but I also had pauses at night and rates as low as 18 bpm at night. I felt much better after the pacemaker had been put in.

Best wishes!

Thank you

by DocK - 2015-09-14 11:09:25

I had a full sternotomy under hypothermic circulatory arrest in 1997. They cooled me down to 17C and stopped bypass and for 17 minutes I was without circulation or brain activity and obviously heart/lungs. The surgeon set a stopwatch for 20 minutes (after that time you have to worry about irreversible brain damage) and he completed the entire SVC reconstruction and switched the lead out to epicardial by the time the timer hit 17 minutes. He is amazing and I miss his advice.

I nearly died in the ICU and was transfused with 6 pints of whole blood and 1 pint of platelets before they could get the heparin reversed (it can be tricky to reverse at such high levels with no cardiopulmonary bypass and such cold temperatures). I was on Coumadin for almost a year but they took me off of it after that time and I have not been on a blood thinner since. I count myself extremely lucky, both to have survived but to also still have a functioning SVC that has not caused me any problems to date.

It can get so tricky....I feel for the patient you speak of who has SVCS symptoms once again.....I remember that pressure in my head and neck all too well....that is unfortunate.

Thank you kindly for all of your thoughts and for sharing your personal experiences with me.

My best to you!

Doc

by Grateful Heart - 2015-09-14 12:09:56


I can't offer you any advice in your decision but I just wanted to wish you well.

Prayers for you.

Grateful Heart

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