Pacemaker Placement : Hi, I am looking for... - AF Association

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Pacemaker Placement

BG2017
BG2017

Hi,

I am looking for information/experiences regarding pacemaker placement. I had mine fitted a year ago and as the photo shows it is reasonably prominent in the chest (this was a few months ago - it is possibly more visible now). I have potentially many years ahead with the pacemaker and just wondered if people found it embedded more over time? Or does the skin get thinner over time? Any thoughts will be very appreciated.

60 Replies
Hidden
Hidden

I received my first pacemaker in 2012. Took me awhile to get used to it and in 2017 I had to have it replaced with a new pacemaker. This time was easier to adjust. Side has always been sensitive. The best of luck to you.

BG2017
BG2017 in reply to Hidden

Thank you Rampart - I guess we all just adjust to them over time. It just sometimes feels like I am sleeping with a badge pinned to the inside of my chest 😂 . I am hopeful that given a bit more time it will seat itself a bit deeper in the chest instead of feeling like it is moving the other way.

Hidden
Hidden in reply to BG2017

Pacemakers give you more time and you will get to the point where you don’t think of them during your dairy routine.

I may have to have a pacemaker eventually. I expressed concern that I have radiotherapy damage on my left shoulder and was told that they could position it on my right side. This would indicate that positioning is not critical so hiding it is a possibility.

BG2017
BG2017 in reply to jennydog

Oh that’s good to know, although I might have to stick with where the original is. At least it gives you options though if you eventually end up with one.

I am post pacemaker one year ago this month with placement on the right side of chest due to lymph node removal on left side. My problem is the leads protrude and cause irritation on the slightest touch of clothing. I too am hoping they will become more embedded over time. It certainly restricts arm movement. The Doctor who put it in suggested a pocket revision, second opinion Doctor did not recommend revision. I am going with the second opinion for now. Wish I could be more helpful to you.

BG2017
BG2017 in reply to Sunny-fl

Let’s hope for both of us that they do embed more 😊

Hidden
Hidden in reply to BG2017

It's a question for your surgeon but in my experience pacemakers and leads don't usually shift their positions once the sites are healed and tissue has re-grown around the internal sites. The surgery is done in a way so shifting does not occur and the pacer and leads stay firmly in place. This is a safety feature to prevent shifting from causing problems with less lead(s) and battery effectiveness. I am not a doctor but I am highly doubtful they will embed more. One thing that makes me comfortable with this thinking is that no matter how I raise my arms, or what positions I sleep in and shift to at night my pacemaker will not dislodge or work itself loose.

Hidden
Hidden in reply to Hidden

PS-probably a poor analogy but think of electrical cords that do not fit snugly in their sockets and work themselves loose whenever furniture,etc near them are moved around or accidently bumped into. Your pacemaker is your electrical system and needs to stay secure in the area the surgeon chose to place it.

I read some time ago of trials on a capsule sized pacemaker that is implanted into the heart via the wrist or groin.

medtronic.com/us-en/patient...

economictimes.indiatimes.co...

There is another small version of a pacemaker that can be implanted

theguardian.com/uk-news/201...

BG2017
BG2017 in reply to seasider18

Thank you for sharing these - they are amazing...so small! Definitely a step forward!

Don't mention dual chamber to me :-) I was told that was what I needed and it was confirmed at the pre assessment. It was not the expected EP who fitted it and my only question to him was whether it was MRI compatible. He said that he didn't know and had to go and check and said that it was. After it was fitted the technician came round to the ward to set it up. When he gave me the card it was for a single chamber one. I questioned a different EP who did a ward round the next morning, he looked at the others with him who all looked down and shuffled their feet. I asked him again the next day and he had not followed up on it. I had been kept in due to a pneumothorax.

Much later I spoke to the EP who did the procedure and he said that was what the letter I was given said had to be fitted. My GP had been surprised that I had not been given a dual chamber one.

BG2017
BG2017 in reply to seasider18

Wow - that makes for a very confusing experience! Maybe they will add an extra lead at a later date? Mine is currently a single lead too.

Has yours improved your quality of life Seasider 18?

seasider18
seasider18 in reply to BG2017

At my age its battery may well outlast me :-)

I can't really say that I feel much better for it as it of course does nothing for my permanent AF. They fitted it because my heart rate was in the 40's and I had 3.5 second pauses. I was quite happy with my low heart rate. I was unaware of it until I bought a BP monitor in 1961 Then my wife said that it had always been slow..

If you haven’t had your pacemaker yet - I hope all goes well HappyJo

Hidden
Hidden

Looking at your picture your pacemaker incision site does look large and raised. I'm curious what size and type of pacemaker they inserted. My pacemaker-made by Boston Scientific (US)- is barely bigger than a quarter. Years ago when I worked in the O.R. pacemakers were fairly new. They were big, bulky, and uncomfortable and always raised the skin. Since then they have become very streamlined and I'm wondering why you have such a large, visible pacemaker site. I'm sorry this happened to you especially as I can tell from your photo you are still young and are very well-dressed. Is there anything your doc could do to replace it with a smaller version. A battery change is relatively easy. Mine is so small (barely bigger than an american quarter) it is out of site and not at all uncomfortable. BTW when I went to the pacemaker clinic a couple of weeks ago for my checkup I did see the new capsule sized pacemaker, Very small and wireless. I understand they implant it in the leg. It was amazing to see how pacemakers are constantly becoming smaller and more streamlined. If mine were interfering with my life and affecting my definition of quality of life for me I would ask about options. Good luck finding a solution soon. I know this is a difficult situation to live with. Especially if sleep is also uncomfortable. Take care. irina

Hi Irina,

Thank you for also taking the time to reply. I have a Medtronic Ensura SR MRI. Currently this is a single lead. I think it was chosen because It also has a long battery life and will thus cut down on how many times I will have to have the scar re-opened over the forthcoming years. Technology is amazing though and seeing some of the articles regarding the smaller devices is very exciting with regards to future possibilities!

My pacemaker does tend to move quite a bit and becomes even more prominent again after sleeping in certain positions; so following on from your other reply I think maybe I will mention it at my next pacemaker check (I was assuming that all pacemakers were like this as I don’t know anybody else with one!) - this site is so useful for gleaning other peoples experiences- I have learnt so much. Thanks again,

Becky

seasider18
seasider18 in reply to BG2017

I feel that mine moves and my GP agreed but the pacemaker clinic says that it is well seated.

Hidden
Hidden in reply to seasider18

If both you and the GP feel the pacemaker moves, it sounds like the pacemaker clinic is being dismissive. Is there another opinion you can seek?

seasider18
seasider18 in reply to Hidden

The cardiologist also said that it was well settled.

Hidden
Hidden in reply to seasider18

Then it probably is fine. The question for me would come down to do I feel comfortable with the way things are? I admit I'm more of a cynic re medical reassurances the older I get. If you trust your docs then go with your 'gut feeling'. Take care. irina

seasider18
seasider18 in reply to Hidden

They are often rather selective in choosing the questions they answer.

Hidden
Hidden in reply to seasider18

Yes they are. We just have to be 'cagier'!

Oh Jo thank you for the lovely comments- I am sure you are wonderfully glamorous 😊

I am sorry you are to have a third cardioversion - have you had an ablation’s? Has the pacemaker improved things for you?

Becky

Hidden
Hidden

Your very welcome and I hope you find a solution very soon. I didn't mean to get so involved with surgical details. (Worked as an OR nurse for years,). I remember the first pacers in the 60's (I'm in the US) and actually worked with a surgeon who helped develop the Medtronics. In the early 70's there was a major recall of defective pacemaker batteries and we were replacing them right and left for a couple of months. (Yes, other things get recalled besides cars!!!) My current pacemaker has a battery life of about 9 years more (got it in 2016) If I'm still here when time for a new one (I'm 74) I hope the capsule one is perfected. BTW, I named my pacemaker Seymour. I figure since we sleep together every night we should on a first name basis. LOL 😊. Take care. irina

BG2017
BG2017 in reply to Hidden

Hahaha! I named mine Wilhelmina- much to the amusement of the children! I figured I needed to be friends 😂 Nice not to be the only one!

Best wishes xx

Hidden
Hidden in reply to BG2017

Good for you. And here is an addendum!! (You have to have a sense of humor in this life.) In January of this year I had a Watchman device fitted (also by Boston Electronics) so I could get off anticoagulants. I named him Sydney. So now every night I sleep with Seymour and Sydney. (Won't mention who else!)!!! 🐱😊😇 xx

BG2017
BG2017 in reply to Hidden

Gosh you have given me a giggle Irina! A sense of humour is a must! Send mine and Wilhelmina’s fondest regards to Seymour and Sydney

😂😊

Hidden
Hidden in reply to BG2017

Will do.🐱

audrey2543
audrey2543 in reply to Hidden

My third replacement battery is as large as the first fitted in 1999. It tries to turn turtle if I sleep on my right side from its position on the left. I wake to find it standing vertical and have to push it back flat. It is several months since fitting and shows no sign of Imbedding. I have raised issue with the pacemaker clinic and the surgeon who fitted but they say they don't want to refit under the muscle as that would be a major exercise requiring general anaesthetic.

I worry about the effect on leads but so far no problems.

I did not realise there were smaller ones available and choice not offered or I would have much preferred more discreet form.

Hidden
Hidden in reply to audrey2543

Even if it requires gen anesthesia in my opinion they are letting you walk around with a device that is not stable. Can you get another opinion elsewhere? I believe you are right to worry about the stability of the leads. As the saying goes, (leads) don't have problems until they do. There is a solution and, unfortunately, it sounds like the docs have put you in charge of finding it. I know this is not the answer you want but the pacemaker and leads may need to be replaced by a completely new pacer and leads and properly implanted . (Hopefully by another surgeon.) You may be getting big pacemakers when they are replaced because the leads you have in place may only fit one size. And pacemakers were much bigger in1999. If it were me I would get another opinion from a different EP as soon as I could. Pacemakers are not supposed to shift when we turn in our sleep and you should not have to push it back in place.. Please see to this. Take care. irina

Have you had any problems when going through the security systems in shops ? If I go through the one in our local Sainsbury's slowly it bleeps. A new shoe shop opened and as I went in there was a piercing sound that did not attract any attention. The same happened as I left. One of the centres security team came out of a nearby shop and I mentioned this to him. He was unaware that pacemakers could do that. I expect that one day I will be subjected to stop and search.

I think you must have an older version. My first pacemaker used to set off the library alarms, much to staff annoyance! Later batteries do not cause any trouble with alarms.

Hidden
Hidden in reply to seasider18

I don't walk through any 'frames' or allow anyone to 'wand' me.This is because I don't know how they work, what current, etc. and when I've asked my sense is the people using them aren't sure either. Better safe that sorry. In the US it is becoming common to have guards and security systems at hospital emergency rooms even if you are a patient. A scary word for me is 'probably"! As in "It will probably be ok for you to go thru this security with your pacemaker." WRONG!!!!!

Hidden
Hidden in reply to Hidden

PS Also, mine is a new model but for some reason is not MRI compatible. There are so many different companies and models it's hard to know which commercial equipment will be safe in a given situation. I do carry my model numbers and info on my pacemaker card. The problem for me is I don't have all the info I need about security equipment to feel safe. Probably just me!

seasider18
seasider18 in reply to Hidden

I always have my card in my wallet. At the present time my CT and MRI scans have not pinpointed my lumbar spine problem so I want a standing MRI with weight on my spine in an open scanner. There are only three in London and they say that they do not take patients with MRI compatible pacemakers.

The Boston scientific rep will come and reset it for me but she needs a doctor or a physiologist in attendance. I have not been able to arrange that. Hospital physiologists say that they are not insured to work outside their hospitals. My EP tried using his contacts at a nearby heart hospital without success.

Hidden
Hidden in reply to seasider18

Hi Seasider. I have a thought. My pacemaker clinic(Device clinic to some) is in the same office as my Electrophysiologist. It's a big practice and everyone seems just down the hall from each other. Whenever I have my pacemaker checked by the Boston Scientific rep, he does so with the magnet and then I walk about 10steps to the EP office, He asks me questions about how I'm feeling and has at times offered to have the pacemaker reset on the spot back down the hall. I haven't needed this but could you ask if the rep could set it in the pacemaker clinic and there would be a doctor on the premises. I believe they need an order which they can get on the spot. Then when you're finished with your MRI they can reset it in the office. If your doctor agreed it could stay reset for the MRI long enough to get to the other hospital and then back. This sounds convoluted but seems to me it might keep everyone happy and legally covered. Just a thought. Right now it sounds like everyone is passing the buck legally. I wish I had a better answer. Good luck. irina

seasider18
seasider18 in reply to Hidden

I could have had my first MRI scan at a local private hospital but they did not have a pacemaker clinic. The local team at the NHS hospital said that they would reset it for me but the cardiologist at the private hospital (who also works at the NHS hospital) vetoed it as he did not want me to travel with it like that. It was only a ten minute taxi ride.

It can be reset to revert to normal after a certain time. It would take me about two and a half hours to get from here to the Harley street Clinic in London.

seasider18
seasider18 in reply to Hidden

One time in San Francisco I bought some computer software. As I left the shop the security system bleeped . I showed my receipt and purchase to the security guard who came over and he let me through. I went to another two stores and each time I set of the security system. I could see a problem at the airport that night.

I went back to the shop where I had made my purchase and they said that although it had been deactivated on the outside it was still bleeping. I said solve it or take it back. They opened the box and there was another device inside. They said they had never known that to happen before.

Hidden
Hidden in reply to seasider18

Your experience is,I believe, all too common. Two reasons might be: 1) stores, and others probably buy the cheapest security system they can get by with, and all the glitches haven't been worked out, and 2) I suspect most employees don't know how their systems work and can't troubleshoot or prevent problems. We expect they will know what they are doing and this is often not the case. At times, it's not a big deal and fairly easily sorted out but at airports where a lot hinges on machines working properly and employees needing to know how they work, it can be scary trusting our pacemakers and our health to other people. I don't fly as much as I once did and so far have had no problems asking to have a manual search without wands, etc. But I've changed my thinking about having to get on a plane at all costs and, if I don't feel safe with how someone in security wants to deal with me I am prepared to cancel on the spot. Radical, probably, but, IMO, here in the US, more than a few security people seem on power trips and it's usually the passenger who suffers. As a matter of fact, US based airline employees are often rude and cause danger to customers who stand up to them (read our news). For a long time, when I can, I fly a foreign airline as politeness and reasonable problem solving with customers still seems the norm. Sorry to say it but in recent times our country seems to have become authoritative, rude, and on power trips when dealing with the public. Unless you are 'somebody' and have money. Just my opinion. Thanks for reading my rant.

seasider18
seasider18 in reply to Hidden

Are not the security people airport rather that airline employees. Airport security has taken all the pleasure out of flying no matter the country you are in. Our last good flight was an air taxi from Key West to Naples, Florida. We got to the airport and went to the desk. We were told the other two passengers are here we can go right away. They took our bags and out to the tarmac and right on to the plane without any security checks.

We have usually found your immigration staff to be bossy and rude even before 9/11. Going through LA going to and coming back from New Zealand we transit passengers were virtually treated as prisoners and locked up in an area without enough seating.

Hidden
Hidden in reply to seasider18

You're right about TSA security staff. Also, airline employees have developed an attitude once the plane is in the air or before takeoff after everyone is seated.. They often call security to have people taken off the plane when a passenger tries to explain anything. One woman had her small dog legally travelling and the stewardess didn't think the little kennel should go under the seat but wanted it in the overhead bin. The stewardess prevailed and the dog died. I think if anyone googled something like airline incidents in the US the stories would be appalling. Re Key West I grew up in Miami but went to boarding school in Key West in the 40's and 50's. My mother would put me on the small plane in Miami after a weekend home and the stewardess would watch out for me til we landed and a nun would pick me up. I love Key West-my favorite American city. The planes were very small and we called them 'puddlejumpers'.

seasider18
seasider18 in reply to Hidden

We had the story of the dog in the papers here plus a few others. Seems that there are actually ones worse than Ryan Air :-)

Well in Key West you could not runaway from school !

Did you meet Hemmingway when you were there?

We stayed in the lovely Marreros Guest Mansion on Fleming Street when we were there. I hope it survived the hurricane,

marreros.com/

There is even a street there named after me...

Hidden
Hidden in reply to seasider18

What is the street name? I never met Hemingway but his house is a museum about his life. Has been for years.It was a place I would visit on every trip down to Key West. Even tho he's been dead, I think since the 60's he is still a lively presence in Key West. A very colorful character. I've been through his house many times-on every trip back down the keys. He loved cats and all of their descendents-all six toed cats- are part of his estate and still well-cared for. I love his books. There are many colorful stories about him some rather racy. When you drive into Key West there is a Catholic Church on the left-St Mary Star of the Sea. There was a convent boarding school there and that's where I went to school from 1949-1961. Many places have survived hurricanes in Key West. On the school grounds near the church is a grotto to the Virgin Mary. The legend is as long as it stands Key West will not be destroyed by a hurricane. Seemsto work as the island has been hit many times and always survives major damage. And no, I could not run away from school-swim maybe but the nuns had sharp eyes. Hard to get away with anything. I know this is off-topic but good to reminisce. Before my brother died we thought about moving down there permanently but we both developed medical problems and decided we needed our docs and medical care in Atlanta. If you get sick in Key West you have to go to Miami. 😊

BG2017
BG2017 in reply to seasider18

I frequently set off shop security alarms! I find walking quite quickly sometimes stops it happening and some shops seem to have alarms that are less sensitive than others. I have never been stopped but I do carry my pacemaker I.D card just in case. 🙂

It is not three until the end of July. It was so new that the hospital imaging department did not have a protocol for doing an MRI scan for patients with that model.

I had been told on the Sunday that I should have an MRI scan. I was temped to reschedule the pacemaker fitting and later regretted that I didn't. I was first told that I needed to wait twelve weeks until it had settled. Then they sprang their no protocol for it. It was always just about to happen but after eleven months I went elsewhere at £400 greater cost. I had read the protocol online and they most certainly did not follow it.

Hidden
Hidden in reply to seasider18

I'm assuming that 'needs to be settled' means internally healed in place internally. This doesn't take 3 months. Sounds like they don't want any part of being involved in the solution. If it were me I'd find another doctor-preferably an Electrophysiologist and get other advice.

seasider18
seasider18 in reply to Hidden

Remember that basically we are prisoners of the NHS. My non NHS three part spinal MRI cost me over a thousand pounds. My Amplatzer amulet including two visits to the EP was over ten thousand. Private medicine here ain't cheap

Hidden
Hidden in reply to seasider18

I know. And it's so much easier for me over here to choose to leave a particular healthcare person and situation. I wish it was the same for you. Take care. irina

seasider18
seasider18 in reply to Hidden

I found that my last two letters about my EP appointments were so wrong that they may have been about someone else. I'm going to ask my GP to write to him.

Hi! I have had PM since last June. Mine protrudes like yours and has gotten worse in that the little screws attached are now protruding to the point pardon the pun of looking like the point is going to puncture my skin! Very disturbing but my EP says not to worry. Right. The fact that I’m thin does not help. I was told by a doctor friend that they often shift positions due to body trying to get rid of foreign object and mine certainly has. To go in and fix it could result in infection etc and was told unless it actually punctures the skin to leave it alone. It worries me.

BG2017
BG2017 in reply to Eliza2

Thank you Eliza for your response. Sometimes it helps just knowing that the situation is the same for other people too 🙂 Hopefully for both of us the pacemakers will not move any further outwards! I can understand that the risk of infection is such that they don’t want to move it and I guess the risks outweigh the benefits, I hope yours stays where it is. Take care, Becky

Can I ask where you got your PM and why?

BG2017
BG2017 in reply to Eliza2

Hi Eliza, I have the pacemaker for sinus node disease, I was having pauses in excess of 6 seconds and had to surrender my driving license for a year. I had an ablation first for AF in the hope that it was AF triggering the pauses but the pauses continued to get worse afterwards, so I had to have the pacemaker. I am now able to drive again 😊 and am on a waiting list for another ablation. My pacemaker was fitted by a lovely team of people in Swansea. Do you feel yours is still moving outwards? What were the reasons for yours?

Eliza2
Eliza2 in reply to BG2017

I had three ablations for afib and during the last one got the pauses also so the PM went in. I got another surprise along with the PM a very rare complication from ablations.....pulmonary vein stenosis in all my veins except one. Had to go to Mayo Clinic in Minnesota to get stenting of the veins done now praying the stents keep veins open. It’s been a long awful three years since the afib first started.

I take it you live in England? I’m in the states.

BG2017
BG2017 in reply to Eliza2

Oh Eliza it sounds as if you have had quite a complicated journey with it all! Did the pulmonary vein stenosis cause you a lot of health issues? Are you feeling better now?

(And you are right I live in the UK 😊)

Eliza2
Eliza2 in reply to BG2017

I would say it has caused me more anxiety and worry than anything. I get a CT scan next week to check the stents to make sure they are holding so that comes with extra stress. Taking eliquis and the added plavix for the stents but will probably get off the plavix. Having to take these meds get me a bit crazy always hated medication. Are you on anything for your blood?

BG2017
BG2017 in reply to Eliza2

I am not on anticoagulants because my EP said my stroke risk is very low but I do take flecainide daily with increased doses when the AF seems out of control. The AF is not very well controlled at the moment as I have episodes on approximately 14 days per month. I am very much looking forward to another ablation- about 1 year to go on the waiting list. It would be lovely not to have to take medication 😊 I really hope your CT scan shows positive results and your stents are working well. Hopefully a positive result will be a big step forward and may lighten some of the anxiety. Let me know how it goes 😊

Eliza2
Eliza2 in reply to BG2017

You are fortunate not taking the anticoagulant. I took flecainide before my ablations but it didn’t work and it made me sick as I had to keep increasing the dose. I have sensitive stomach so many meds upset it.

I will let you know how the test goes. Never would I have dreamt this... more like a nightmare lol. I don’t do well with uncertainty not that many do. I think none of us really expected any of this. You have to wait a year for 2nd ablation? Why is that? There are that many people waiting? Is there anything you can do to speed up that process?that is one thing I have going for me here, I have great health insurance and can search out the best and get done what I need when I need it. Certainly not all have that here but some do when they work in the right places. Anyway I’m hoping you can move up faster than a year. Are you married? Children? Do you work?

Eliza2
Eliza2 in reply to BG2017

And I have the sinus node disease also ☹️

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