ADVICE PLEASE

Might be of some help

by Theknotguy - 2019-11-16 08:20:00

I might be of some help.  I have a dual lead Medtronic pacemaker and have problems with afib.  Currently running two programs, APP and Minerva.  Both were working fairly well and I got along fine for six years.  Earlier this year was having problems walking the 950 foot corridor in the back section of the hospital. Would arrive at the end of the corridor out of breath.  Talked to my EP, had some tests done.  My cardiologist did and ultra-sound of my heart and said I wouldn't need a TEE test, just some pacemaker adjustments.  

First was a change to my rate response.  This was done by my regular pacemaker tech.  Apparently there are five settings to the rate response and I was on the lowest setting.  He moved it up one setting.  I haven't felt any difference - no increased sensitivity or anything like that.  But I had fewer problems walking the hall and running out of air.  

Second setting was done my a Medtronic tech.  I can't explain the changes, but it had to do with the afib programs.  I saw some screens I've never seen before while the tech was looking at my pacemaker.  I was able to give him some dates and approximate time and he was able to go back to that time and look at what my pacemaker was doing.  Discussion got really technical and even I, after 35 years as a computer tech, had trouble following him. Anyway there are five settings to the afib programs and I was on the lowest setting.  So he made adjustments by just tapping on the screen and those adjustments were to my afib programs.  I'm back to what I call "normal" feelings and I can walk the 950 foot hall without running out of breath.  

I also do a lot of walking and do three to six miles of walking inside the hospital when I volunteer there.  Then, I volunteer another day at a furniture bank charity where I move about 2000 pounds of wood while working on the cut crew.  Not everyone with a pacemaker has my level of activity so settings that would work for most people were inadequate for me.  

Your discussion with your EP may need to get into what are your rate response settings and if you have other settings that can be adjusted  Hopefully all you'll need is some tweaking of your pacemaker settings and you'll feel better.  
 

AV Node Ablation

by AgentX86 - 2019-11-16 11:32:58

First and formost, this is the last resort.  After everything else fails, and you cannot function without it, only then consider an AV node ablation.  It does what is advertised but it's a pretty drastic, one way, leap. There is no going back and it means being pacemaker dependent.  In the case of atrial arrythmias, it also means AV dyssynchrony (the ventricles can't track the atria because it's the atria that are the problem).

Is the 320 heart rate you mention the atrial rate or ventricular?  If the latter, this is life threatening! If you can feel/count it, it's ventricular. My atrial rate is always in that area,but my ventricular was around 80 to 90 (3:1 to 8:1 block). which is why I went for the AV node/His ablation (after a Cox Maze, maor drug failures, and three left-atrial ablation attempts).

A third lead will do nothing for you.  Your EF is great so there is no need for a third lead.  If you do get an AV ablation, they may upgrade you to a CRT-P because  of the AV dyssynchony (I have a CRT-P with a 55-60% LVEF) but otherwise it's not necessary.

I'm not sure why an ablation for Afib/flutter is dangerous for you but an AV node ablation isn't.  That doesn't make a lot of sense.  Yes, I would push for more work on your PM settings.  It's the least invasive alternative and is immediately reversable. Again, an AV ablation should be your last choice and only done if you can't function otherwise (quality of life issue).

Theknotguy thank you

by Gemita - 2019-11-16 11:36:40

Very helpful information.  Forgive my ignorance but are the APP and Minerva programs both readily accessible for all Medtronic dual chamber pacemakers or only available with certain models ??  I am still getting to know what is set up on mine although I was aware of these programs.  Not sure if the following is relevant but I can’t seem to find much in the way of rate response settings on my Pacing Check Summary page but perhaps this detail is not given.  

Bradycardia parameters:

Mode AAI>DDD

Upper tracking rate 130 bpm

Upper sensor rate 130 bpm

AV delay (sensed) 150 in (ms)

AV delay (paced) 180 in (ms)

Rate Adaptive:  Yes

I was once “exercise” challenged during autonomic function testing and they found my heart rate barely moved even after 10 mins of vigorous exercise.  My present lifestyle is pretty slow due arthritis although I am still able to walk long distances.  Going uphill/upstairs though, especially during AF - even at slow heart rates - can lead to breathlessness and severe weakness.  At higher rates I would be unable to go uphill or upstairs without being close to collapse.

I like the idea of focussing on getting the pacemaker settings right for me before going down other routes.

You lead a full life and I am sure your voluntary help is very much appreciated by those you are in contact with.  I do my best to help others too (mainly elderly neighbours) who are less fortunate than me but we are all getting older and I am not able to commit to very much at the moment.  Hopefully this will change as I get my pacemaker tuned in to my needs.  Thank you so much again.

PM settings

by AgentX86 - 2019-11-16 12:36:36

The manual for your Medtronic pacemaker is on line.  All of this stuff is in there, though it's written in medicalese (it's not designed for patients).

Mode AAI>DDD

A  A  I

^   ^  ^

|    |   +--- Inhibits pacing on (atrial) sense

|    +------- Atrial Sensing

+------------Atrial Pacing

D  D  I  R

^   ^   ^  ^

|    |    |   +--- Rate response is turned on

|    |    +------ Pacing inhibited on sense

|    +---------- Dual sensng - both atria and ventricals are sensed

+-------------- Dual (atrial and ventricular) pacing - each is paced as needed

This means that your pacemaker shifts from atria pacing to atrial mode sensing to sensing both atrium and entricle pacing when something happens.

Upper tracking rate 130 bpm

This is the maximum rate where the PM will keep the atria and ventricles in sync.  Above this and the heart will experience dyssynchrony.  You'll probably feel this as your heart becomes less efficient.

Upper sensor rate 130 bpm

This is really the maximum rate your pacemaker will sense the heart rate so it won't pace above this.

AV delay (sensed) 150 in (ms)

The delay between the atrial and ventrical pace.  This is equivalent to the AV node delay.  If the ventricle beats before this time, the ventricular pace is inhibited (the AV node is "normal")

AV delay (paced) 180 in (ms)

If you're in atrial pacing mode, this is the (replacement) AV node delay.

Rate Adaptive:  Yes

Self explanitory.  Your rate response is turned on.

I walk a lot (>20mi/day - ~500mi/month) but stairs still cause me a problem.  Two flights and I'm really winded.  My rate response delay is set to minimum, so it's kinda what I'm stuck with.

AgentX86 Thank you

by Gemita - 2019-11-16 15:32:53

I appreciate your two posts.  I can see I have a lot to learn.  

The 320 bpm rate as you say would be dangerously high for a ventricular rate now that I think about it, but if I am honest I cant answer your question.  I always thought because of my symptoms it was the rate in the ventricles, for these brief runs.  I have heard my doctors mention my rapid ventricular response rate on so many occasions and their concern that I obtain immediate help, but perhaps you are right, 320 bpm may well be the atrial rate.  I guess with an intact AV node, if it is functioning properly, it should slow down any fast rates in the atria, preventing these from reaching/affecting the ventricles.  I will follow up on this though and make sure I understand just what this all means.  I have got my Loop downloads (electronically) for the last several years so have good evidence of what has been happening.

I agree safer to play around with pacemaker settings at the moment than wipe out the AV node.  I believe the AV node ablation though would be a less risky procedure than a PVI ablation because it would be a much shorter procedure lasting maybe maximum of 30 mins whereas PVI ablation would be at least several hours duration and require a possible second (according to my EP) ablation to deal with all my arrhythmias.  The need for two procedures would then double my risks for complications.

Extra programs

by Theknotguy - 2019-11-16 16:01:56

I've met several people with pacemakers who don't like to be even reminded they have a pacemaker.  One didn't even know his type or manufacturer.  My wife has a relative who doesn't even like to be reminded she has a pacemaker.  Compared to some people I know a lot but compared to AgentX86 I don't know that much.  Consequently....

I don't know if all Medtronic pacemakers can be programmed for APP and Minerva.  The 93 year old guy who sits next to me in church also has a Medtronic and his is set to plain vanilla settings.  I haven't asked and my EP isn't always forthcoming with information.  Nor are some of the other doctors with whom I've come in contact.  I've tried to learn as much as I can but it has been spotty at best.  In order to get the afib programs turned on I had to specifically ask my EP as they were new at the time.  There have been a lot of advances made since then and I haven't heard of that many people with pacemakers who also have the programs running.  

As for the detail of rate response settings, I haven't seen them on my reports either.  It was a surprise when I talked with my tech and he said I was on the lowest setting.  No one asked what I wanted and I was never given the opportunity to discuss what I might have needed.  However that information was on the fat laptop they use when they do a pacemaker check.  Otherwise, with my activity level I might have been asking for them to bump up the rate response before I started running out of air.  

Like I said, when the Medtronic's rep was using the fat laptop, I saw some screens I'd never seen before.  My EP said information was erased usually prior to what was read by the system at each reading.  The techs figure it's past history and they won't need to look at it again.  I was really surprised when the Medtronic's rep pulled up information specific to the day and hour I specified.  I figured it had been erased but apparently not.  As AgentX86 said, the pacemaker records the information but only by what causes a trigger to make the record.  I didn't know there was that much detail and that it had been kept for that long.  I'm very happy it was there as it gave the Medtronic rep the information he needed to make the changes.  

And yes, it's always better if they can just make a few taps on the screen and fix your problems.  Holding off having an ablation and possibly damaging the heart is much better.  

Hope they can fix things for you quickly.
 

AV node ablation

by AgentX86 - 2019-11-16 20:02:36

Yes, one of the functions of the AV node is to filter out spurious signals from the atria to protect the ventricles from lethal tachycardia. That assumes, of course, that the AV node is healthy. A fast AV node could be dangerous. Fortunately, mine was on the other end of the scale. My flutter induced "tachycardia" was only in the 80-90bpm range but very unstable because it would constantly change blocking ratios. It was very uncomfortable and there were many sleepless nights (week at a time).

There is nothing particularly dangerous about a PVI. Ablations are pretty much a nothing. As I said, I've had three left-side (have to pierce the septum from the right atrium to get to the left) ablations, with only local anesthesia. They did sedate me for the second, and thought I was under when they cardioverted me. I wasn't and had some things to say about their ancestry. I hand only locals (leg and shoulder) for my AV ablation and PM implant,  as well. I was chatting with the EP who was doing the implant the whole time. A PVI is much simpler.

But, yes, pacemaker settings changes are much simpler. Since you already have a pacemaker, being dependent isn't a huge leap, I suppose. It isn't reversible, though. It's good to avoid irreversible decisions, however.

Theknotguy and AgentX86

by Gemita - 2019-11-17 07:40:52

Yes I am so aware Theknotguy some folks dont want to speak of their health conditions even to the point of not wanting family and close friends to know.  This can be difficult to manage as I well know with my husband and I am always getting into trouble about mentioning his oh so common ailments, although I also get into trouble by not telling the family about it too, so I cannot win.  But I am a patient who wants to know as much as I can and for me this works and prevents anxiety.  For some it would cause anxiety.  You and AgentX86 are both excellent contributors to this forum and I thank you both for all your help.

I too have found that because of time constraints I cannot get the info I need during my all too brief clinic appointments and it is so necessary to continue to do my own research to find ways of making my quality of life better.  I realise that a pacemaker is only as good as what it has been set up to do and unless it is given the appropriate instructions it will not report on all our "events".  Sometimes I would like to get my hands onto the controls and fine tune it to meet my needs.  Maybe I should volunteer in the Pacemaker clinic !!  I have kept my own diary notes of major events/episodes of arrhythmias so I can discuss with my doctors at appointments.  It is incredible how these diary events were confirmed by my LINQ Reveal downloads, so I usually know what is going on and yes it is incredible just how much info can be retrieved.  My monitor has now been removed after 4 years, leaving me with only my pacemaker.  

AgentX86, yes I understand the PVI ablation should be a straightforward procedure, although lengthy and with some risks. I have already had an EP study and I now wish they had done an ablation at the same time since I was in AF at the time. (I did though develop a pseudoaneurysm following catheterisation) which was horrible with bruising/pain.