Different recommendations on each visit still cannot get it right.

Hello

I have recently returned from toronto where I was checked before receiving my remote monitor.  I was hoping for better help with my PM as after 5 months and 6 pror appointments, they still cannot agree on settings.  All but one one left me SOB and exhausted and set me back on my exercise program to almost post op.  Another symptom which is really problematic for me is brain fog or confusion, memory and focusing issues.  So on the 6th I was with the cardiologist for about 7 minutes and he told me my ventricles have to work on their own sometimes and there needs to be a delay to get them to heal and do some of the work. (I have complete AV block). He also told me that he didn't have enough background information (I spent 6 weeks gathering all my reports etc and they were right there.  He sent me home feeling so awful, I was afraid I might not be able to make the drive.  SOB, head sponning really fatiqued..  I called next morning to get back into the clinic and the cardiologist ( a different one) put me back on the PM taking full charge of getting the V to pump.  I am trying to understand it all.  In the meantime sometimes I feel so bad I get frightened.  Noone has ever checked for or mentioned the possibility of pacemakre syndrome.  I have had only one doctor who took the time to examine everything and set it up properly but he is a fello and cannot be requested.  Nor do any of them have enough time to look at everything to make an informed decision.  And seldom am I even asked how I am feeling.  Basically the stqndard "the pacemaker is doing its job."  How do I get on topof this?  I am frightened sometimes but I don't know if any of them really has a handle on the working s of the machine, yet I have been at 3 teaching hsopitals...

7 Comments

I get it

by FG - 2023-11-12 19:24:25

One thing I have noticed is lack of communication seems to be far more common than those saying they are fully satisfied with their doctor visits. One person commented that those with the good communicators are not the ones that end up on PM Club seeking more info and clarification! He could be right. Anyway I get the same just offhand generic comments and very little to tell me what to expect. Keep us posted maybe others will add to this.

Leave Well Enough Alone?

by DoingMyBest - 2023-11-12 21:13:10

I go in for a PM session in a couple weeks. Since my RV is currently 100% paced (for 1st degree heart block), I was thinking about asking for a tweak such as enabling AV hysteresis to give the ventricles a change to beat on their own. This sounds like what they tried for you without success. For St. Jude pacers (like mine), there is a feature called VIP - Ventricular Intrinsic Preference. When it is enabled it has three additional settings, VIP Extension, VIP Search Interval, and VIP Search Cycles. I suspect other brands support a similar feature.

This is me just speculating. I don't know what features your Biotronik has.

If I understand the VIP feature in the St. Jude correctly, the Search Interval sets how frequently (minutes) the PM tests your AV node conduction, the VIP Extension sets how much extra time the PM waits to sense an R wave (msec), and Search Cycles is how many missed/late cycles (R waves) it will wait for before it gives up waiting for the intrinsic system to work. When things go well your intrinsic system jumps in and keeps things going. That is the desired result. But, if your intrinsic system isn't up to it (blocked, or just too slow), and the test fails repeatedly, then I can see where things could become miserable, especially if the PM wants to retry every minute or two.

Gotta say, after your story I'm having second thoughts about asking for it, especially if the technicians don't understand how to program it properly. I'm not a fan of 100% pacing, but at least I'm asymptomatic for now. So, thank you for helping me think this through.

DoingMyBest

by Penguin - 2023-11-13 06:16:30

I'm not sure how this applies to the OP and his Biotronik device?  Do Biotronik devices share the VIP extension or something similar? 

Re: the VIP feature - thank you for clarifying how this feature works. I explained it (not very well) in a previous post and misunderstood how the search cycles work, so thank you for this.

Couple of questions (if the OP doesn't mind?)  Please reply by PM if inappropriate.

I understand that the VIP algorithm is an extension to a programmed paced AV delay. Is this right?

The patient's PR interval therefore has to exceed the programmed paced AV delay for the VIP algorithm to be triggered in the first place - or am I wrong? 

Could this paced AVD be programmed to match or slightly exceed the patient's PR interval to avoid VIP cycles if the VIP programming is necessary sometimes but not always or when long delays from VIP programming are causing problems (e.g. it may trigger PMT.)

Also the search interval can be applied every 30 seconds. 

(Would you mind replying by PM to avoid diverting this post further?) 

Fuller

by Penguin - 2023-11-13 08:21:50

Can you ring the head office for Biotronik in Canada (if there is one) and ask to speak to someone for some advice?  Would a Rep come out to help with the programming?

As above

by fullercm - 2023-11-13 08:38:53

I have contacted the rep at Biotronik as she was very supportive before and she will hopefully respond today.  As to what you folks have been talking about, you are talking in so many abbreviations I am lost :(

I need pacemakers for dummies 101 ...

YOU ARE TALKING SO MANY ABBREVIATIONS I AM LOST

by Selwyn - 2023-11-13 10:16:02

Hello fullercm,

At last, someone  who expresses what I think, and with plain language.

I hate medical jargon.   I have a whole book of medical acronyms. 

As a general rule, what I would like to see in the Pacemaker Club site, here, is that no one uses an acronym/abbreviation without  first putting it into words. This would conform to the norm for medical publications where one must assume that the reader is not familiar with the subject.

GWM ( Get what I mean!).

TY ( Thank you!).

Once an acronym/abbreviation  is explained it can be used without further explanation within the communication. 

TY, KR ( Kind regards),

Selwyn 

 

Fuller

by Penguin - 2023-11-13 10:24:39

Apologies - you and Selwyn are quite right about the abbreviations.

 I'm guilty as charged on your thread.

Not sure this will help much:

VIP = Ventricular Intrinsic Preference - an algorithm which reduces ventricular pacing. 

AVD = Atrioventricular Delay - a programmed delay to the normal amount of time it takes for an electrical impulse to travel from the sinus node to the AV node. 

PMT - Pacemaker Mediated Tachycardia.  A rhythm disturbance that the pacemaker itself generates. 

Sorry! 

Best Wishes

You know you're wired when...

You participate in the Pacer Olympics.

Member Quotes

In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.