Should I get a pacemaker?

Hi

I am a new user in the UK and this is my first post.

I have been advised to have a PM fitted due to AV stage 2. At present I don't  have any symptoms. I Zumba dance, do the garden and pretend to go to the gym.

Having found this problem they have advised me to have the PM as a preventative measure. Obviously, if I had symptoms I would be really grateful. 

I would prefer to carry on as I am. Does level 2 always progress to stage 3?

I am worried that once I have a pacemaker I'll need future surgery to change the batteries when I'm older and less fit.

I don't want to be irresponsible, just unsure what to do . I 'm worried about future complications following surgery - infection, pain etc

Would be grateful  to hear from anyone  with similar experience. 

Best wishes

 


7 Comments

Izzy

by IAN MC - 2020-07-20 09:02:24

We have 2 things in common :-

I )  I am in the UK and  ii ) I pretend to go to the gym

If I were you, although it really is no big deal, I would not go down the pacemaker route until I had symptoms ( and this may never  happen ) .

Others may disagree.

At the first signs of light headedness, dizzyness or fainting I wouldn't hesitate to have a PM fitted.

I need surgery to change my box and battery fairly soon but I know from friends that the procedure really is a piece of cake    ( despite my advancing years ! )

I believe that 2nd degree AV block sometimes progresses to Type 3 ; sometimes it doesn't.

Best of luck

Ian

 

Should you get a pacemaker ?

by Gemita - 2020-07-20 09:32:36

Hello Izzy,

Welcome.  I am also in the UK.

It is a difficult question to answer.  May I ask why you ended up needing an ECG or how they found out about your block?  Did you have any symptoms of dizzy spells, weakness, faints that needed investigating ?  I cannot imagine that a cardiology department in the UK (under the NHS?) would suggest a pacemaker without due reason, so my feeling is that you need to go back to them for further explanation or seek a new opinion from another team at a different hospital?

My feeling is, having had faints in the past, that you don’t want to wait until this happens before taking action.  It is a frightening and dangerous experience especially when out driving or on public transport and if there is even a hint of a problem with regards to passing out, I would err on side of caution and get a pacemaker.  Yes pacemakers come with risk, everything in life does, but I wouldn’t allow fear of the unknown to influence your decision.  

It is a big step to take, so that is why I would get another opinion.  I would also make sure if you do go down the pacemaker route that you fully understand the different types of pacemakers available to suit you individually and discuss with your doctors all your options like how many leads, for example?  When you have all the facts, you will be in a much stronger position to assess how to proceed.  I do wish you luck in coming to the best decision for you.

 

when to pace

by Tracey_E - 2020-07-20 09:33:26

Have you had a holter to see how low you get and what your rate is at night? If it's getting very low, that would be a reason to get the pacer before you have symptoms.

2nd degree is likely but not guaranteed to progress. 

If you can do what you want to do and feel good, I would probably wait. But as soon as you start getting dizzy, inordinately tired, when you can no longer get through the day without struggling, then it's time. I waited too long, ,ntil I was constantly dizzy and exhausted. It happened so gradually that I didn't even realize how bad it had gotten until I was paced and felt a million times better. Having it for me just means more energy. I've been paced 26 years, on my 5th device, am healthy and active. I've never had serious complications, there's nothing I want to do that I can't.

My Experience

by Swangirl - 2020-07-20 13:16:09

When I was 46 and experienced a very difficult trauma I developed tachy-brady syndrome, and having an HMO and no opportunity for other opinions was given a single lead pacemaker.  My heart recovered in a few months and the pacemaker never paced for ten years.  When it was time for it to be replaced I could not get the cardiologist to remove it and had to have another that didn't pace for ten more years.  Finally my current doctor was willing to take the risk of removing it without a replacement, even though he said there was no billing code for that procedure and he asked his collegues and no one had ever heard of that situation.

After ten years without a pacemaker I developed an AV block and two years ago had to have a dual chamber and two new leads.  I wonder if the first unnecessary device damaged my heart or affected by electrical system but won't ever know.  I'm sorry that I wasn't able to take a more conservative approach but that is water under the dam.

I think you have some good advice from the other commentors about how to make your decision.  I wish you the best.  

 

Stage 2 block.

by Graham M - 2020-07-20 17:23:35

I am also in the UK and have Type II AV block.

You say you have stage 2, but don't mention whether it is Type I or Type II.

If you have asymptomatic Type 1, then a PM is usually not necessary, bit if you have Type II, a PM is probably a good idea as it will become symptomatic in time, even if it doesn't progress to Stage 3.

Syncope is very dangerous if you are driving or crossing the road, and what they don't tell you is that one of the symptoms is sudden cardiac death

Please discuss this carefully with your cardiologist and follow all the advice they give you.

Best wishes,

Graham.

How I decided

by Gerry_Amps - 2020-07-20 19:01:26

Hi Izzy,
I'll not offer advice - everyone is different and needs to weigh things for themselves when there's a real decision to make (i.e. it's not somethig they're told is a medical necessity, by a Dr.),   However, I can tell you about my decision under similar circumstances . . .

At a regular check-up 9 months ago, I was diagnosed with LBBB and heart failure.  Surprising as I'd had no sypmtoms.  Also surprising was that my heart efficiency was less than1/3rd of what it should be (EF of 17%) and I was still walking around.

I was immediately given various meds and tests over the next few months that showed my arteries were squeaky-clean (also surprising as I grew on fish suppers in Scotland before moving to the USA).  However, my left ventricle had enlarged due to the dyssynchrony caused by the LBBB.

With me so far?  : )
The meds actually helped a bit.  My EF got to around 30% (which is about half of normal).
It was at that point that I knew I'd better get a PM, soon, and here's why.
Of the 3 ways you can find out about a heart problem, I'd found out the easy way.
You can go from being asymptomatic to dead, literally, in a heart-beat.  Or, maybe without warning have a major event that can do all kinds of damage.

Yes, I possibly could have slowly declined and became symptomatic before anything major happened, but as I have 2 friends that had recently experienced the other 2 ways of discovering a heart problem - neither of whom even suspected they had one - I decided I'd rather live with the knowledge that a PM may not be 100% necessary, than possibly not.

Charlie (my friend that's still alive), wished he'd known enough about his condition before it took him down for 6 months.  He has a CRT-D now and is doing great.  My other friend, Ted, seemed to be in perfect health, now his family wish they'd had a chance to do something - anything.

So - for me, it wasn't a hard decision.  I've seen many more family/friends than Charlie & Ted find out the hard way.

I'm on day 5 of my first PM now and doing just fine.  Whatever the discomfort, quirks or adjustments I may need to make, I'm good with it.  It makes the alternative a lot less likely and hopefully much further away.

Hope that helps!
Gerry

 

Great storry, Gerry

by AgentX86 - 2020-07-20 23:02:20

If you have a 2nd degree type-II heart block, I'm firmly on the side of "do it now".  It's almost certain that it'll degrade to 3rd degree heart block sooner of later.  If it's a type-1, I wouldn't.  The chances of it degrading aren't high and you'll probably never have a problem.  Of course, it is worth watching.

As Gerry said above, having a pacemaker is nothing to be scared of.  It's a very simple procedure and it's done outpatent for many.  Unless something goes wrong (rare) it'll be no more than overnight.  Anything going dangerously wrong is exceedingly rare.  Yes, there is a little pain afterwardst, again YMMV, but often trivial and rarely severe.'

As far as having to do it again in ten years, give or take, it's still a nothing. I wouldn't wait for it to be symptomatic.  The first symptom could kill you or someone else if you happen to be driving at the time. 

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