SSS/ vasovagal syncope without atrial lead attached

Hi,

This may be a bit long so please bear with me. Does any one have expertise with Sick Sinus Syndrome, sinus pause and vasovagal syncope without the atrial lead hooked up?

i got my third pacemaker implanted 3 weeks ago, I'm 34 years old. The plan was to get the new PM along with remove the old leads. The old leads had been in 15 years and we knew at least the atrial lead was very damaged. When the surgeons got in there it turned out it was much more complicated than they expected and they couldn't get the leads out. I was in surgery for 4 plus hours when the surgeons cut and capped the atrial lead and left the ventrical leads since it was in good shape. They want me to wait 3 months and see how I feel and then discuss another surgery in 6 months to a year.

to be honest I feel pretty crummy. I feel some chest pains here and there with some chart pains at others. I've been a bit dizzy but not as bad and I thought I would. I'm just a bit nervous about it all and not sure how I will do without the atrial lead that I have had for 15 years. I've taken it pretty easy so far but I'm nervous to do too much 
 

just curious if anyone else has been through this or something similar. Thanks!


5 Comments

Lack of A=>V synchrony reduces cardiac output

by crustyg - 2020-08-27 03:16:57

I have SSS+CI - my SA node has failed completely.  I've lived for a couple of years with just my AV-node providing impulses to my ventricles, so not identical to you, but similar.  For me it's not been too bad, my AV-node provided some limited rate response but nothing like enough.

Common problems: feeling faint when standing after sitting for 20+mins.  Feeling faint and having to stand and hold the bannister rail after a single domestic flight of stairs.  Both *much* worse if I let myself become a little dehydrated.

As soon as my PM went in the improvement in cardiac output was instant and significant.  Suddenly my atria would contract, push blood into my ventricles, so each beat of my heart would then expel a decent amount of blood into my aorta => much better BP when using large muscles (e.g. legs/glutes climbing stairs).  No more dizziness on standing (unless I'm really dry), no more standing at the top of the stairs holding the rail, gasping for breath.

In your shoes I would be pushing to have that atrial lead replaced ASAP. The atria don't just sit there doing nothing important - they are a major contributor to how the heart responds to the need for more output.  Heart muscle is unique in the body - the more you stretch heart muscle fibres (by filling the ventricles with blood), the more powerfully the muscle contracts (up to the Starling point).  So merely having atria contract before each ventricle makes a big difference to heart operation.

Restoring A=>V synchrony is really important at your age.

sss/atrial lead

by Tracey_E - 2020-08-27 10:09:58

The ventricular lead does nothing for SSS, that's the job of the atrial lead. Was this doctor one who specializes in extraction? If not, that's where I would go next, find someone who does 100+ extractions a year for a consult. Also, they can do a venogram- iv with dye in the cath lab- to see if you have room in the vein to add another lead. This is what I did. I already knew extracting would be complicated so we checked to see if there was room. There was, so now I have 1 original old working lead, 1 new one, and the bad one capped off. They can also run the lead through the right side. There are a lot of options that don't involve you suffering and being at risk of passing out for 6 months. 

Thank you for the comments

by Mh85 - 2020-08-27 11:21:09

Hi,

thanks for your comments. I went to the best extraction dr on the west coast and have full confidence in the surgeon. It turns out the original surgeon 15 years ago implanted my leads through the axilarry vein and not the subclavical, which didn't show the detail on the act with contrast prior to surgery. They said they have never seen this done and proved to be too difficult to get out with what they had prepared for. Right now I think I have to heal from the surgery three weeks ago before I can go in for another. The thought was to then schedule with the proper equipment and take everything out and get a new system, I'm just a bit nervous in the mean time and not feeling very well. With three kids and two jobs it's proving to be a bit much to keep up with. 
 

thank you all for being there. Even though I've had a pacemaker for 15 years and am on my third sometimes it can feel so isolating without anyone near me who knows what it feels like. 

Hang in there and focus on getting better

by crustyg - 2020-08-27 12:29:29

Tracey_E's wise words are the key here.  But please don't think I wasn't aware that you're probably sore (physically and mentally) and nervous about putting yourself back into the surgical mincer.

Yes, you're going to want to have some weeks off: my prompting was to encourage you to ignore the 'wait for six months etc.' and plan to have the definitive fix sooner than that.  Nearer six weeks than six months, but a lot depends on you and your situation.

Interesting that your leads are so far lateral - folk these days avoid the axillary because it's possible to irritate the brachial plexus that far over, and it's meant to be easier to get into the subclavian with a blind approach (the surface landmarks are good).

There's absolutely no benefit to you in a 'clean sweep' approach.  There are no additional risks of leaving a non-functioning atrial lead in (capped off) and putting another lead in - as long as they can get this new lead into the right atrial appendage alongside the old one.  One of the challenges will be introducing a guide wire into the subclavian without damaging the insulation on the working ventricular lead - and this may involve a little more dissection to get down there.  More work and time for them, more soreness and healing discomfort for you, but perhaps a more sure result.

Lots to discuss with your EP team: soon!

HTH

 

AV Dyssynchrony

by AgentX86 - 2020-08-28 15:54:57

To be fair crusty, you not only had AV dyssynchrony going on but you were also living on your AV escape rhythm. Atrial enhanced ventrical filling only accounts for about 20% of cardiac output. It certainly affects athletes but wouldn't explain feeling faint after standing (sounds like orthodontic hypotension) or even a flight of stairs. However, living with only an escape rhythm could easily cause these symptoms.

I've lived with AV dyssynchrony for over two years (and no escape rhythm at all) without any real negative effects over what all of us living with only rate response deal with. I have a lot more energy now than I did before, with AV "synchrony" (flutter certainly complicates synchrony).

 

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But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.