Post PM soreness

Hi

I had my PM fitted 3 weeks ago in 3 weeks time I am going back for a AV node ablation which means I will be solely reliant on the PM I'm feeling a bit jittery about it probably a normal feeling but just need some reassurance from anyone that has what they call a Pace and Ablate if anonee can help I would be grateful 

Also how long after PM fitting should I still be feeling discomforting around the arm  and shoulder area where the PM Iis it's on the left side 

Thanks in advance

Jackie 
From England


7 Comments

AV Node ablation

by Gemita - 2020-12-22 19:55:32

Hello Jackie,

Firstly I am assuming you have a fast atrial arrhythmia that cannot be stopped with medication or other treatment, like a regular ablation and that your doctors have therefore recommended an AV Node ablation as a last resort?  I am assuming too (since you don't give us any medical history) that your doctors have fully explained that you would become pacemaker dependent after an AV Node ablation?  I hope you have considered all your options very carefully because once you go down this route, it is final.

I considered an AV Node ablation in 2018 because my Cardiologist/EP felt it would be a good treatment option for my Atrial Fibrillation with a rapid ventricular response rate.  At the time this was causing concern since medication to slow it down caused a dangerously slow heart rate and I started passing out.  

I was told an AV node ablation is a simple procedure lasting no more than 20-30 mins.  It is usually successful first time, not usually requiring further intervention.  Although it cannot stop an arrhythmia in the atria like Atrial Fibrillation, by taking out the AV node this prevents the irregular rhythm and high heart rates from passing through the AV node to affect the ventricles.   The pacemaker can then be set to pace you in the right ventricle at a steady, fixed rate and you should therefore be less symptomatic since you would generally not feel your arrhythmia(s) any more.  Very quickly you should also be able to stop many of your current rate control/anti arrhythmic meds, so there are some compensations to having an AV Node ablation.  I was also told that I could expect fewer symptoms, or even none at all, although I might still feel my atria slightly fibrillating.  An AV Node ablation may still be in my future, so I do wish you well.

As far as the pacemaker healing goes, it can take up to six weeks or possibly longer for you to be free from discomfort.  I had left shoulder, neck, upper arm, collarbone discomfort for at least 6 weeks and intermittently for a couple of months, but it does get better.  Although I was told to avoid moving my left arm above my left shoulder for 6 weeks approx. it is important to keep left arm and shoulder gently moving to prevent stiffness which can easily set in.  Just keep an eye on your wound to make sure that it is healing, without any signs of infection (inflammation, oozing, swelling) and you should be fine.  

Good luck dear Jackie.  I am in the UK too

BTDT

by AgentX86 - 2020-12-22 23:03:54

Hi Jackie.  Welcome to the club that even the members didn't want any part of.

Gemita ran down the AV node ablation pretty well. I had an AV node/His ablation two years ago.  They did my pace-and-ablate at the same time.

Gemita was right when she said: "I hope you have considered all your options very carefully because once you go down this route, it is final." but she understated it a bit.  You don't say why you're have a pace and ablate but make sure there are no other alternatives and that without it, you're so symptomatic that you can't function normally. It is a drastic step and there is no going back.

Not only will you be pacemaker dependent, you won't have a junctional escape rhythm, and will be in AV dyssynchorny whenever you're in AF/AFL.  I'm in flutter 100% of the time so I'm always in AV dyssynchrony.  This causes lower maximum heart output (~20%).  Since I'm always in VVIR mode (ventrical only pacing), I don't have any mode switching to worry about but I'm always in the "low gear" side of the switch.  Gemita can speak to this more.

The good news is that since I've had the pace and ablate, my symptoms of flutter are gone.  Poof.  It got so that I couldn't sleep - for weeks on end.  I had three failed ablationsand the drugs damaged my thyroid (since recovered) and Sinus node, which is why I needed the PM.  The pace and ablate was another step to finally be free of the AFL.

It sounds like you're well down the path already but be sure this is the only way to have a livable life and nothing else has worked.

I would also ask what sort of PM you're getting.  I have a CRT-P.  Because I would be in AV dyssynchrony, my EP didn't even want to go near RV/LV dyssynchrony as well, hence the CRT out of the gate.  You should ask about this.  RV-only pacing can cause problems and the two together may be a real problem.

AV Node ablation

by Gemita - 2020-12-23 02:10:19

Jackie, AgentX86 makes some very good points and he clearly has experience of an AV Node ablation.  I do not.  I would like to believe though that your doctors discussed the full implications of having this procedure very carefully with you and concluded it was your best option.  If this was not the case, or you still have questions/concerns, then I would strongly urge you to have another meaningful discussion with your doctors to put your mind at rest.

My EP explained all my options to me and with this information, gave me the choice to make an informed decision.  I recall he covered in some detail the potential (and I stress potential, since it certainly doesn’t happen to everyone Jackie) to develop heart failure symptoms in the future from right ventricular pacing alone, at which time he would upgrade my pacing system to allow a more synchronised means of pacing known as cardiac resynchronisation therapy (CRT).  It was not however my hospital’s practise at the time to provide CRT as a means of “preventing” the potential to develop heart failure symptoms in the future.  Their policy was to watch heart function very carefully with echocardiography and only provide a pacing upgrade when and if it were absolutely necessary.  I am uncertain of the guidelines today but at the time it was explained to me, there was no evidence to show that giving CRT before it was needed, was helpful. 

My reason for not going down the AV node route at the time was because I also have ventricular arrhythmias and I felt that an AV Node ablation would do nothing to stop these from occurring/causing symptoms and I would still need to take medication, even though my atrial tachy arrhythmias would be controlled by the AV node ablation.  It is complicated isn’t it and each one of us will have our own unique condition to manage.

Jackie, I set out to reassure you, not to sow doubt.  Equally I have a responsibility to tell you honestly what my experience has been so that you can have a meaningful conversation with your doctors and make an informed decision.  I hope to that extent I have succeeded.  I have certainly not intentionally understated the seriousness of ablating the AV Node.  If there is any doubt in your mind, or if you do not have a good understanding with your EP/cardiologist, you still have time to seek another opinion.  I wish you all the very best

AV node ablation

by Jacjac - 2020-12-23 05:05:27

Hi al

Yes I have tried probably everything this has been going on since 2014 I have tried medication including magnesium citrate I've been zapped (cardio version) which lasted 2 weeks and 2 ablations I was told by my cardiologist the more ablations you have each time they are less successful have been back on medication to give it a try again but AF was causing heart rate in the matter of seconds/minutes drop to 30 and rise to 120 plus, spoke to my cardiologist and I decided to go down PM route as it is impacting on mine and my families quality of life I'm 66 and want to enjoy the last 20 plus years (hopefully) of my life with my family 

Jackie

Atrial Fibrillation

by Gemita - 2020-12-23 06:07:23

Hi Jackie,

Glad you are feeling positive about moving towards an AV Node ablation. Have you noticed any improvement in your symptoms since the pacemaker implant?

I did immediately with my higher, steadier lower heart rate pacemaker settings and was able to get off several antiarrhythmic meds, but I am still on a rate control beta blocker to calm my AF symptoms and hold back any sudden surging upper heart rate which otherwise could hit dangerously high levels albeit for brief periods before collapsing.  Maximum Ventricular rate recorded by my implanted Linq Reveal monitor was in dangerous territory hitting 300 bpm briefly. 

I find my pacemaker alone has improved my quality of life without the need for an ablation of any kind.  By the way, many patients need more than 2+ catheter ablations to fix their arrhythmias.  I have heard stories of some needing more than 6 and rising !!  I don't feel I could, or would want to, go through that, nor would my doctors recommend it.  An AV Node ablation seems in many respects a somewhat easier solution so I can understand your decision.  

Atrial fibrillation

by Jacjac - 2020-12-23 08:02:21

Thanks Gemita

The low rate has been set at 50 the high rate will be set at the ablation the doctors did say until I have the ablation I need to stay on beta blockers then they will decide along with the for life blood thinners that's all I take thankfully. The doctors also said I would still feel dizzy until the ablation which I have had a few episodes but not as bad as they were I've not seen the grey mist or been at the passing out stage since PM also not getting out of breath climbing stairs so yes I guess I do feel a bit better, so fingers crossed I will feel even better once ablation has been done.

I didn't want to have a 3rd ablation it's not a very nice operation so I think I have made the correct decision for me and my family just pre-op nerves and questioning myself

Thanks for your support x

AV ablation

by AgentX86 - 2020-12-23 14:02:14

If you go to the heart rhythm site, they'll tell you in no uncertain terms to never have an AV ablation.  Hogwash.  If your sysmptoms are so bad that it's affecting your life and nothing else works, do it. 

It's not clear if your arrhythmia is persistent/permanent or not.  It does make a difference.  If you are permanently in AF/AFL/AT or a similar (?) arrhythmia, an AV ablation will almost always (never say "never
or "always") fix the symptoms.  It doesn't do anything for the arrhythmia but it does bury it so that you don't feel it.

If your Afib is paroxysmal, they may be planning to keep you atrial paced until it detects an episode of AF, then switch to V-pacing.  You may (probably?) feel this change as your heart changes gears. I can't speak too much about the symptoms here because I've never been in this situation.  I went from paroxysmal AF to permanent AFL (surgical failure), eventually to the AV ablation, so I don't have first-hand knowledge of these mode switches.

If you're permanently in AF and then V-paced (VVIR mode) the price for "AV dyssynchrony" is that your atria no longer have any function and you're left with ventrical-only pacing/function.  In fact, your heart function is reduced somewhat more because the atria may be beating against the ventricals at times but it's really not as bad as it sounds.  Unless you're an athlete, you'll get used to it quickly enough. Probably faster than you'll get used to being paced (and that's not long).

Either way, you will be on anticoagulants for the rest of your life because you will still be in AF, though if don't feel it.

BTW, I had three ablations before the AV ablation and would have done more (I didn't think they were any big deal, even though or perhaps because, they were done with only a local) but right after my third, my EP told me that what he did/was able to do wouldn't work and we'd have to figure out where to go from there.  Of course, there was no reason to try a fourth.

Good luck and please stay around and let us know how it turns out.  You can then help others make this very important decision.

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