How should it look?

Hi

I am always asking questions! Getting on for five weeks after my dual chamber pacemaker was put it. The area is still a bit swollen but the bruising which was very bad has almost gone. I am concerned about the site - it is very raised and I can feel the hardness of the pacemaker protruding on one side much more than the other. This is visible as well.

The scar is raised and hard like a bone on top of the raised site of the pacemaker - it just doesn't feel right. Have looked for pictures on the internet but can't find anything. How do I know how it should look? I don't know anyone with a pacemaker.

I am seeing the cardiologist on Tuesday because I am also very short of breath - I didn't have that problem before the pacemaker implant. Lung function test and xray normal.

My doctor said I would like a 'new woman' after the impant. I do - I feel tired, breathless, disfigured and so uncomfortable when I sleep due to the protrusion of the pacemaker. I want the 'old one' back. I didn't have any symptoms because my problem only showed on the 24hr ECG at night - missing beats while I was asleep.

Think I am finding it very hard to come to terms with my pacemaker. I felt I was a young 61 - but not now!

Susan


11 Comments

PM Problems

by SMITTY - 2008-03-07 03:03:56

Hello Susan,

Just for the record, this site is here for one purpose and that is to have people ask questions or make comments about their pacemaker experiences. Now that we have that out of the way, I’ll say it is distressful to see a message like yours. A pacemaker can be a wonderful life saving or life improvement device. But in the hands of a quack it can also be a disaster. From the sounds of your message, your situation may be the result of the latter.

My further comments are based strictly on what I see in your letter. But if you got a pacemaker simply because of a few skip beats during your sleep, then I have to say yours is a misapplication. If I can believe the electrophysiologist that implanted mine, a pacemaker will not prevent skip beats. He was very specific during my first discussion with him and I quote, “Mr. Smith, we can set your pacemaker to increase your heart rate which should make you feel better, but it will not prevent the PVC or skip beats the Holter monitor shows you are having from tine to time.”

Now I’ll try to offer a suggestion or two for you to get improvement. As for the implant site, it sometimes takes longer to heal than expected. In my case it was a couple weeks and I could forget the thing. In fact it has now been almost eight years and unless I am reading messages here, I never think of mine. But I see messages here where many people do require a few months for complete healing.

As for how the implant site should look, that is very difficult to say. Some of us are lucky and it is hard to see the site from a distance of five feet and for some they look like a poor Halloween joke. You can click on the Members Gallery (upper left side of the home page) on this site and you will find one or two pictures of implant sites.

As for the shortness of breath, unless the settings on your pacemaker are totally wrong for your needs, I can’t imagine how it could cause SOB.

You say you will see the doctor soon, I would suggest that you tell him exactly what you have said here and be sure you add that part about “I want the old one back.”

Now, based on my experience – and I truly hope you do not run into this – you may be told your problems are not caused by your pacemaker. You say you didn’t have these problems before you got the PM, so have the good doctor to explain how this coincidence could have happened if you are told it is not your PM.

From where I sit, you have a couple of other options. One, if you are not satisfied with the results of this upcoming visit, tell the doctor to refer you to someone else. If you run into resistance there, then put your complaints in writing to the doctor and send copies to the administrator of the hospital where you got the PM.

Then of course you always have the option of seeking legal advice, but that would be an absolutely last resort and I think it is too soon after getting your PM to do any more than just think about that recourse.

I wish you the best,

Smitty

Agree

by sweetkozy - 2008-03-07 05:03:41

Very well said Smitty :)

If the doctor couldn't fix the problem then I would definitely ask for a second opinion. They say, if it's a GOOD doctor, then the doctor would be more than happy to have you have a second opinion. (ok..that sounds weird..."have you have") You shouldn't feel so miserable, with regards to how you are physically feeling. :) Hope you can get everything straightened out!

Cheers :)
Jenny

PM Problems

by susanspurs - 2008-03-07 08:03:12

Smitty thanks for your reply. As I understand it, I have secondary heart block but I never had any symptoms while awake. I understood that the missing beats caused my heart to beat too slowly and my cardiologist was concerned that this could happen during the day and I could blackout. So the pcemaker was fitted a few days later.

My cardiologist is a top London cardiologist who has looked after my 82yr old mother after a heart attack during major bowel surgery. She needed a triple bypass but was too frail so risky angioplasty with five stents was the only option. He thought he might lose her as the arteries were twisted but all went well and three years on her heart is still going strong. So all this is to say that I know him well and I do trust him.

But saying all that I do feel that things are not right with me physically and mentally with the pacemaker and I have taken your advice on board and will certainly consider a second opinion after I have given him more time to sort me out. I have the pacemaker check up in just over two weeks so I want to find out how much it has been working pver the six weeks and see if any settings can be changed to help with the breathlessness and tiredness.

I'll see if I can find those pictures.

Thanks also to Jenny.

Susan

How should it look.....

by turboz24 - 2008-03-07 10:03:30

I would say it depends on person to person, on model of pacemaker/ICD to pacemaker/ICD.

If you are lean, fit, or just thin it's going to stick up a lot more than say someone who is average or overweight. It would also depend on the thickness of your skin and implant location. Personally, my ICD sticks up almost 1/4th an inch and more towards my shoulder than the center of my chest.

How you deal with the disfigurement of the pacemaker/ICD also really depends on your personality. There are those who delude themselves that it doesn't matter, there are those who will always hate and despise it (This is me), and there are those who are confident enough with themselves to still notice it, but not care as much.

As for the scar itself, some people heal really well, some people don't. You might be forming a keloid, which is a hard raised scar. There are treatments for it, like injections or laser treatment if it just itches to much or bother you a lot. Some people have indicated their EP's wern't happy about the injections, because of the pocket immediately below the scar, but if it itches like crazy, I'd do it....

PM Problems

by SMITTY - 2008-03-07 11:03:14

Hi Susan,

Thanks for getting back with more information. I am glad to see that I owe your doctor an apology for even implying that he may be a quack. It sounds as if you have an experienced doctor.

I think I can see why he thought a PM may help you overcome the effects of skip beats. I'm guessing some more, but if you have a heart beat that drops to say 50 during sleep periods and you have say 10 skip beat that leaves you with only 40 productive beats a minute. But if your PM is set to keep your heart rate at a minimum of 70 BPM you may still get the 10 skip beats but you will have 60 productive heart beats per minute so the skip beats will not be a factor. At least that is my rationale on the subject.

The only other thing I will try to add is you, I, nor anyone should ever feel worse after getting a PM. If you do I say it still needs some adjustments.

Good luck and I hope you can let us know how things go.

Smitty

same as electricfrank

by sugarmagnolia - 2008-03-08 03:03:50

greetings!
i am fairly thin with low body fat and my PM is very visible under the skin. protrudes more at the top surface than the bottom and more on the sternum side. in my case, the upper portion of the PM rests on the muscle structure that connects to the upper arm and when this muscle contracts the upper portion of the PM moves forwards a bit. it to me some geting used to but i have been reassured that all is normal. it took me about 4-5 weeks before i made "friends" with my PM but when i had my interrogation and the medtronics tech deactivated the PM and my pulse and BP dropped dramatically and i almost fainted, i realized right then how much i need to value my new friend and i do as you will learn to do.
hey frank, where do you live? i am in a suburb of phoenix.

PM Problems

by susanspurs - 2008-03-08 07:03:25

Hi All
I have to keep telling myself it is still very early days and things will change - that's how I deal with it. I wish I was thin - I am more than three stone overweight (that's more than 40lbs to our American friends)! I am quite tall so people are surprised that I am so much overweight. Just had a long look in the mirror and it is raised all over but more at the top and the left side. The right side still feels like it has some swelling over it. Maybe it is a keloid scar - I have had a small one before when I was twenty two on that left breast after a small op to remove a lump.

When I try to cross my left arm across my chest or sleep on my right side and then move my arm a bit across it sticks into my arm! And it sticks into my arm when I lie on my left side. I am sure my not insignificant boobs don't help as this makes for a lot of movement. It is a bit painful when this happens but that is probably because it is not healed yet.

My PM has been set to 60bpm. I have been on medcation for hypertension for more than thirty years and that seems to have stayed the same since the PM but my pulse seems to be around 85-90 - think it was about 78/80 prior to PM. I also seem to be aware of my heartbeat much more now. The reason I had the 24hr ECG was for palpitations - which I still get but less now. The doc said that the PM might not do anything for the palpitations and I might need medication if they are bad. But they do seem a somewhat better. So that's good.

Back to my doc - even excellent doctors can have an off day! They had to do the pacemaker twice because after it was stitched up it was noticed that the wires were incorrectly placed! Doc couldn't believe it and seemed to be a bit stressed by this - I was wide awake so remember it all. So it was undone, all taken out and done again. So maybe that it why it's not great. The important thing now is that he takes all my problems seriously. So we'll see and I will post again on Tuesday after I've seem him.

Thanks to one and all.
Susan

Hi

by Jules - 2008-03-08 11:03:50

Hi

Just to say that my pacemaker is very prominent. I saw the cardiologist and he said it would help if I was much bigger and broader. OK, my problem I am either going to get used to it, or start eating a load of fresh cream doughnuts and scones and it might just disappear.

Know how you feel though on a serious note, it doesn't look too good but I am sure like yourself we will get use to them and even take no notice. I cannot lie on my left side but now can on my right - slight improvement.

Take care

Deluding myself?

by ElectricFrank - 2008-03-08 12:03:25

Hey, I love my pacer. I'm 77, and being in a warm desert climate don't wear a shirt a good deal of the time. I find the pacer bump on my chest is a good conversation starter.
Having said that if mine was uncomfortable, inflamed, or otherwise didn't look healthy I would certainly be making it clear to the doc that something needed to be done. One thing that can make one edge of a pacer protrude is if it is up against a bone. Mine is right below my clavicle on the left side and if I reach across to the right it can "rear its head", but it isn't painful. Once I had it get stuck that way but just gently worked it down flat again. Keep in mind though that I've had mine for over 3 years and it is nicely healed.

frank

Treat the surgical area with TLC

by ElectricFrank - 2008-03-09 12:03:38

Like any cut the implant area will heal faster if its not being irritated so pay attention to the messages it gives you. At least for the first few weeks if it hurts it is telling you to take it easy.
I've mentioned that I was out walking the day I came home from the hospital, but the doc did a great job on the implant and I didn't jolt my body. I also got rid of the poor excuse for a sling they gave me and fashioned one that really supported my left arm. For me a cut takes about a week to 10 days to heal and that's about what the pacer took. Keep in mind though that I didn't have any infection or as Susan mentioned having the the whole thing stitched up and then redone. Ouch. I wonder what the doc had on his mind.

frank

give yourself a little more time

by mandogrl - 2008-03-12 01:03:39

to heal. :~) My PM area stayed aggravated a little longer than I expected. The motions you mention, crossing the arm across the body, which I like to do in my sleep apparently, really bugged me. I thought maybe being skinny make it worse, but I think our bodies just each have their own agenda.
Hang in there!
P.S. this will be my 1st summer at the beach post-PM, but there are a heck of a lot of folks out there with scars. ( I watched for that last year, since I was anticipating my surgery.)

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