upcoming 2nd opinion - questions to ask?

Just ask the question

by crustyg - 2020-03-31 05:46:37

I'm sure that you are right to focus on what's next rather than going on about what has gone wrong in the past.  Takes mental discipline, but it *is* the right approach.

I'm being serious when I say you should just ask the question - is this lead going to be be useful for anything like long enough?  You may be surprised by how much this opens up the conversation, and your new EP may share that there are reasonable alternatives to your current lead: 1) a cut-down procedure to get into a bigger vein, 2) some form of trans-thoracic approach for an epi-cardial lead (going through the chest wall to place a lead on the outside of the heart muscle - not as terrifying as it sounds).

Your EP can discuss the options open to you both and the risks/benefits/costs (both pain+injury+recovery time as well as money). 

HTH.

Are you symptomatic ?

by Gemita - 2020-03-31 08:43:41

Hello Sally,

I do remember your earlier posts and I am dismayed that you are no further ahead despite all your efforts.

Plan A - Go heavy on any symptoms you may have.

Are you getting any symptoms from the loss of sensing of the right ventricular lead and is your swallow syncope being controlled??   If you are getting any symptoms, then make sure your EP knows about them.  Based on your symptoms alone he will hopefully be more willing to discuss all your possible options which your previous EP failed to do.  Without symptoms, it may be a more difficult consultation and you may find yourself on the back foot and in need of a Plan B.

Plan B - Go heavy on reasons why you want lead fixed sooner rather than later and why you are not happy to do nothing

Without symptoms my doctors would probably tell me to leave well alone, so I would heavily focus on lead replacement rather than on doing nothing.  The criteria I imagine for lead replacement would be being “symptomatic” and the device failing to meet your needs.  I would strongly recommend focussing on what you already know about the benefits of replacing/extracting a faulty lead earlier rather than later before the leads are firmly embedded and the procedure becomes riskier, longer in duration and more traumatic for you.

Although it is important to listen to what your new EP has to say (long story, I didn't !!), I think it is equally important that you try to get across to your EP from the start (1) what your main concerns are and (2) what you hope to achieve ?

So what are your main concerns - list them briefly ??  Important perhaps to mention that you are not confident that the present position will provide safe, effective treatment long term and that any future correction/intervention will become increasingly more complex the longer you wait.

What do you hope to achieve from your consultation - presumably correction of faulty lead - nothing else will satisfy you ??

What are your symptoms ?  Think about your symptoms and whether they are being helped by your pacemaker or whether your under sensing problem is adversely affecting you?    Be ready for this sort of questioning from your new EP.

If at the end of this consultation, you feel you are no further forward, then you could throw in the question of the suitability of the new Medtronic Micra AV ??   You would have nothing to lose by doing so, but I wouldn’t mention it until the last moment, since your main concern would be to get your present pacemaker's lead system optimised for longevity and performance

Displaced lead

by AgentX86 - 2020-03-31 10:36:20

The point I'd raise is the increased difficulty of replacing the lead the more time goes by.

I'm certainly not an EP but I wouldn't think that you'd be a candidate for a Micra. Your "smalland inaccessible veins" could be a problem getting the Micra in place.

another opinion?

by marylandpm - 2020-03-31 11:15:30

    Could you find a EP that would see if Hisbundle pacing was possible? That way they should be able to just not use the RV lead.  I'm no expert by any means but I would be looking for a EP that is doing HisBundle.  

His pacing

by AgentX86 - 2020-03-31 15:30:35

I'm not sure whether His pacing is a good idea, and in many cases not possible with a heart block. Often the block is more extensive than just the AV node and is or includes the bundle of His. Depending on what caused the block, it can expand to the bundle of His.

I'm also, I'm not sure how easy it is to move a lead. I though they used a different catheter for placement and different attachment means.

Maybe in this case it's worth a try but I'd be looking for the best in the business.

first draft

by Pacemaker_Sally - 2020-04-01 00:36:06

You guys are the best! So much became crystal clear to me by reading through the points you made above. I realized that I was barely symptomatic before the surgery, but it was serious enough that I was immediately prohibited from driving and was fast tracked to a dual lead pacemaker. My underlying terror is that if/when that lead fails, I'm likely not going to notice it until I start actually passing out. 

Here is the 1st draft of my notes for the EP consult. I plan to read them like a script during the consult.

Feedback is most welcome! I still have 6 days before the appointment.

----1st draft----

I am seeking your opinion on the long term implications of not replacing a right ventricular lead that is only sensing an average of 2 mV and as low as 1.5 mV.

1. The research I've done indicates that swallow syncope is rare and hard to diagnose. Even without a pacemaker, I was asymptomatic 99% of the time. I only noticed passing dizzy spells while swallowing large vitamins or fizzy drinks. The longest AV block detected during my Holter monitor test was 5 seconds, but I am told that the block will likely increase in length over time.

2. Based on my history, I am concerned that if the weak lead began to fail, I would be asymptomatic until actual syncope occurred.

3. The research I've done indicates that replacing a faulty lead is risky but best done sooner after implant than later. I am now 5 1/2 months post op.

4. What is the criteria for replacing the lead? I am currently on the upper end of the pacemaker's programmable settings.

5. What are the future options if the lead becomes too embedded to remove, considering I have small, inaccessible veins.

6. Would you consider taking me on as a patient?

Almost there !!

by Gemita - 2020-04-01 04:52:41

Oh Sally, have we really nailed it between us - I hope so.  It does feel as though we are almost there and you have put forward a strong case for action.

I like your point about being largely aysymptomatic prior to being fast tracked for a dual chamber pacemaker, so I imagine it would be vital that your pacemaker function is sound to start with because I presume you wouldn’t personally experience much in the way of warning signs (although I may be wrong) of a failing system until a syncopal event actually occurred and you could be DRIVING at that time.  Do you mean that you are having syncope events 1% of the time, if you are 99% aysymptomatic ?  1% is still unacceptable and potentially dangerous but not sure that I would put that detail into your conversation (which might allow your EP to challenge the need to change anything right now).  Swallow syncope can occur at any time and it is this "not knowing" when and whether your device/leads will handle the event when it occurs that is so worrying.

I like your first draft.  Maybe only point I would make is that if EP tries “reassurance” again as a possible way forward would you be happy to leave well alone ??  That is my question to you.  Supposing EP says that the lead will function well enough for the rest of your life, would you feel reassured??  If you want new EP to offer more now, this needs to “strongly” come through.  In this regard I would include a statement like  “you would only feel reassured if your right ventricular lead position could be corrected” otherwise he may feel that reassurance alone might be all  that is required at this stage.   EP must be made aware of your fears and concerns which are REAL and not imagined and I do not feel these concerns will go away by "reassurance" alone anymore.   But you must be sure in your own mind that you are prepared for further intervention to try to correct this problem because it will not be without some risk.

I hope your new EP is kind, helpful and guides you along the right path and this nightmare will soon be over for you.  Finding the right EP will be vital.  I wish you lots of luck Sally and please report back

draft 2

by Pacemaker_Sally - 2020-04-01 18:40:58

Dear Gemita - Thank you so much for your support, encouragement and compassion. And for really "getting" my situation. At first I thought "but I'm not symptomatic, so the EP won't care." I realize now, that being asymptomatic is central to my concerns. To answer your questions above:

- The point I am trying to make is that even before I had a pacemaker, I was barely symptomatic. And so my fear is, that if/when the lead craps out, that I will have little/no warning signs before syncope. I am mostly assymptomatic now and only sometimes, it feels like I go over a speed bump when I swallow. Or like a cloud passing over the sun. But then it passes quickly.

- Even with a pacemaker, I do not consume any food or liquids while driving (new rule).

- "Reassurance" will not cut it. I need to know what my plan of care is. 

---2nd draft----

I am seeking your opinion on the decision that has been made to not replace the right ventricular lead of my pacemaker that is sensing as low as 1.5 mV, averaging 2 mV instead of 5 mV.

1. The research I've done indicates that swallow syncope is rare and hard to diagnose. Before I received the pacemaker, I was hardly symptomatic at all. I only noticed the occasional passing dizzy spell while swallowing large vitamins or fizzy drinks. The longest AV block detected by the Holter monitor was 5 seconds, but I am told that the blocks will likely increase in length and frequency over time.

2. Based on my history, I am concerned that if the lead began to fail, I would start to experience actual syncope, with no warning signs.

3. The research I've done indicates that replacing a faulty lead is risky but best done sooner after implant than later. I am now 5 1/2 months post op. 

4. What is the criteria for replacing the lead? I am currently on the upper end of the pacemaker's programmable settings.

5. 1.5-2 mV does not seem like a long term solution to me. What is the reasoning behind leaving the lead "as is"?

6. What are the future options if the lead fails and is too embedded to remove, considering I have small, inaccessible veins.

7. Would you consider taking me on as a patient? 

Good luck for a successful outcome

by Gemita - 2020-04-01 23:48:21

Dear Sally,

Thank you for your kind words.  I wish I could accompany you and give you  some support.  Hopefully you will quickly establish a good rapport with your new EP which will make all the difference.  At least you know what you want to achieve now and we have put you through a trial consultation so you are well prepared!!

I would use your second draft as an aide-memoire to guide you through your consultation.  As we said earlier, focus on “moving forward safely and effectively” rather than focus on what has occurred in the past.  Doctors don’t usually like commenting on decisions that have been made by colleagues.  

I would just be as clear as you can be that you are not satisfied with the performance of your RV lead;   that you have little confidence that it will remain stable over time and that correcting it sooner rather than later is your preferred option.  You then ask him for his advice and how he would proceed to stabilise the lead;  then wait and listen to his response.   During your consultation you can keep your "discussion points 1-7" to hand to guide you.  How does that sound?   Don’t be nervous and try to get your EP on your side.  Let him know at the outset that you really hope he can help you through this difficult period so that you can move forward with confidence in the knowledge that your pacemaker will keep you safe for many years to come.

Be yourself Sally.  You have always expressed your feelings and concerns extremely well on this site and I have every confidence that you will have a successful consultation, particularly if you feel your new EP is right for you.  

thank you

by Pacemaker_Sally - 2020-04-02 01:53:20

Thanks again Gemita. I will post the outcome of the consultation here!

I’m not understanding your MV’s

by PacedNRunning - 2020-04-03 02:25:23

I ask because my MV Is fixed at 1.8 and I usually hang around 1.2-1.4 MV if it was set to auto. We decided on fixed to save battery.  So I'm not understanding why they want it at 5MV.  5MV would use a lot of battery.  I would think the lower the better.  It means your heart doesn't need much voltage to stimulate it. 

Second, would you quality for the MIcra AV lead less pacemaker? Sounds like you only need ventricle support. The key for micra is you cant' have sinus node dysfunction.  Other wise you should be a candidate.  

You are also correct that they should replace sooner rather than later, it's best in the first year. Let us know how your appointment goes.

T

millivolts

by Pacemaker_Sally - 2020-04-03 03:24:54

Hello T - Thanks for your question. Do you have a single or dual chamber pacemaker? Is your pacing "on demand" and what condition are you being treated for?

As far as I know, my atrial lead is functioning within a normal range, whatever that is. The issue is with my right ventricular lead and for my pacing needs, 5 mV is the target. 

It is also interesting to note that no one on this forum has (so far) let me know that they have a right ventricular lead that is undersensing to the degree that mine is, especially in a brand new device. That also tells me this is not a "business as usual" scenario. 

For the Micra, there are now 2 models, the Micra AV being the newest and designed for people with AV block. I think the older one is for sinus node disfunction.

millivolts

by AgentX86 - 2020-04-04 21:02:31

This is a rather misunderstood issue and actually rather mind bending.  The "sensitivity" of the pacemaker doesn't alter the battery life much at all.  The sensitivity is the threshold of where the pacemaker dfferentiates a heartbeat from a not-heartbeat (a.k.a. noise).  The higher this threshold, the less sensitive the pacemaker and the lower, the more sensitive.  However, the lower the threshold (higher the sensitivity) the more possibility of false triggers (known as "over-sensing).

Back to the basics.  When the pacemaker triggers a heartbeat, it also senses the voltage coming back from the muscles contracting.  The amplitude of this signal says a lot of things, including how much muscle has contracted (often, the health ot the heart muscle).  If the signal coming back to the pacemaker is too low, the PM's sensitivity has to be increased (the "millivolts" have to be reduced) to detect that a heartbeat has really occured.  From this time the PM knows when to start the next beat.  If it "over senses", in other words the treshhold is below the noise, the next heartbeat will be "inhibited" until the timer expores after that noise.  Too much noise and the pacemaker may not trigger a heartbeat at all. Then the failsafes come into play (one hopes).

If I've completely lost you, try this:

<https://www.youtube.com/watch?v=f87Ze9_lm3U

BTW, this is what I've been saying about the dangers of AC magnetic fields.  They can cause over sensing by adding to this noise floor and unlike AC electric fields, cannot be shielded in any practical manner. Motors, alternators, and welders are the prime culprits that we may see.

thank you AgentX86

by Pacemaker_Sally - 2020-04-05 15:31:52

Thanks AgentX86. I think I understand my situation correctly: the signal coming back from the lead to the pacemaker is low. To compensate, they have dialed up the sensitivity of my pacemaker. I will ask the EP about the long term implications of being on the upper end of the programmable sensitivity settings and what happens when we run out of settings. I am currently on the 3rd highest setting (out of about 15 settings)

done

by Pacemaker_Sally - 2020-04-07 18:54:37

I just had the 2nd opinion/consultation. In a nutshell, it's not ideal, but if it ain't broke don't fix it. For now, the lead is stable, the pacemaker is doing its job and if/when things need to change, the technology will likely be more advanced than it is today. 

I still wish I had had a better outcome, but what I have is good enough and I'm no longer at risk of fainting.