Distraught: under sensing problem

Background: I had a long, complicated initial implant surgery of a dual chamber PM. Due to vein access problems, the R Ventricular lead was known to not be 100%. The surgeon thought it was 80% but it has since degraded to 40% and remained there.

At 6 weeks post-op, my 2nd visit to the PM clinic confirmed that the R Ventricular lead of my dual chamber PM is still under sensing: a 'suboptimal' 2 millivolts instead of an 'optimal' 5 millivolts.

Next known steps are:

1 - today's results will go to my surgeon. I have been proactive and made sure he knew about the under sensing issue reported in the first set of results from the PM clinic test. His office assistant reassured me that he is aware of the situation and has a written plan to address it, but I have not heard what that plan is.

2 - the PM clinic will retest in 6 weeks, unless the surgeon decides some other course of action after he sees today's report.

3 - The RN at the PM clinic reassured me that 'under sensing' is 'way better' than 'over sensing'. Worst case, I'm being paced when I don't need to be and it is supposedly not harmful, unless I start feeling odd, of course.
NOTE: The PM clinic here is extremely 'streamlined'. You only get to see an RN. There is a cardiologist there, but they are only consulted 'as needed'.

At this point, I don't even know what questions to ask or what to do next, other than wait. I keep reading that badly sensing leads should be fixed sooner than later. How long will they leave it? Will vein access be an issue again? Should I be extra proactive and call the surgeon's office? Demand a consultation? Christmas holidays are coming up and this isn't a life or death situation but it seems to me that I should have a fully working device and it should be possible, even with 'small veins'. 

Advice anyone?

4 Comments

This needs to be fixed

by crustyg - 2019-12-11 03:57:29

Push for sooner rather than later.  You will probably need the ventricular lead replaced, so the longer that they leave it the more difficult it may become.

Venous access: they will probably have to use a cut-down approach rather than enter the vein by sliding the introducer blindly to find the chosen vein.  More tissue damage, more pain, slightly slower healing, much more time in the OR == more cost.

*Depending* on your pacing mode, heart health etc., under-sensing isn't always innocuous.

IMHO you should try to get them to get this fixed before the Christmas shut-down.

Sorry to hear that it's not gone well for you.

IF I WERE IN YOUR SHOES . . .

by Gemita - 2019-12-11 09:08:30

and in answer to your specific points, I would consider the following:-

1) I would ask, respectfully that "the written plan" be conveyed to you immediately, preferably during an urgent consultation with the surgeon.  I would be prepared to pay for a private consultation if necessary.  

2) It seems to me that your clinic may be adopting a "wait and see" policy and although I am no "lead" expert, from the comments already made by Crustyg (and others in your earlier posts), the earlier this problem is corrected, the better.  Certainly the longer the lead stays in place, the more difficult it will be to reposition, if that is what they intend to do.  I dont know how much you trust your surgeon, but in the very least they should agree to an early consultation as in (1) above so that you can be put fully in the picture.  It is the not knowing, not having all the facts that makes this waiting so difficult.

3) I would not be reassured that undersensing is better than oversensing.  I would suggest respectfully that your PM is not able to function as it should and that both undersensing and oversensing will cause problems and this has to be addressed at the earliest.

 

I would try to get in to see them before Christmas while their spirits are high !!  I wouldnt wait until afterwards because there may be a backlog of patients for your surgeon to see and you may have to compete with emergency admissions, pushing you back even further.  In the very least try to get in to see the surgeon, get all the ongoing information you can, ask for his/her thoughts on the best way forward and get them to perhaps commit to a date for lead correction.  It may not be a life or death situation, but your pacemaker was clearly implanted for a reason and that reason has not yet been fulfilled, so you have every right to demand an early solution.

I really hope for a good outcome.  

ongoing

by Pacemaker_Sally - 2019-12-11 14:03:37

Thank you so much for all these messages of support. I called my surgeon's office today and let them know I was 'proactively' calling to find out what happens next. They said the process is that an EP at the PM clinic will review yesterday's results and make a recommendation to the surgeon's office. I'm waiting for that to happen. If they recommend something needs to happen sooner than '6 weeks from now', they will let me know.

I am in Canada, so fortunately the PM lead extraction/replacement will not come out of my pocket. But it means I am dealing with a 'public' healthcare system and I can't just fork over $ to get faster treatment.

No one can predict my future pacing needs. I am only 56 years old with a perfectly healthy heart that stops a few times a day when I swallow, hence the pacemaker.

I suspect that due to the added complications of my small, inaccessible veins that I will be referred to a specialist in lead extraction. If not, I will make sure that happens. If this drags on much longer than the end of January (3 months post op), I will start escalating. For now, I wait. It is hard. I feel very intensely about 'everything' today.

Thanks for the update

by Gemita - 2019-12-11 15:25:21

You have done absolutely everything you can do for the moment, so have confidence that this will be dealt with quickly. 

I understand all about a 'public healthcare system' which we have here in the UK too.  I certainly don't pay for my treatment, but very occasionally I do seek a private consultation if my consultant doesn't have anything available for months under our National Health Service and I need to see him quickly for peace of mind.  

It must be disappointing and disheartening but you sound strong and I am sure you will get through this.  I hope you can relax a little now and enjoy the Christmas period ahead and that your heart will behave itself and treat you well.  Remember we are always here if you need to chat xxx

 

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