6 weeks post op....wondering about the recovery of a "side insertion" and any possible problems that might come from having this done?

Hi....
I'm 24 and have just received my 1st pacemaker, for Neurocardiogenic Syncope. I have been fainting regularly for the past 6 years, and after many years of tests, and different cardiologists i have hit last resort and now have a permanent pacemaker.

My surgery was also a little different to normal. I have two incisions, the top one for the leads, and a side one for the pacemaker - between my underarm and my breast. The pacemaker itself is above my 9th rib, and is totally behind my breast tissue. I understand that it is normally just below the skin....does this change things??
I've been told this is quite unusual, but was wondering if anyone else has had a similar insertion?

Also...They have increased my rate-drop response to 70, and activated the sleep mode. I haven't had a proper nights sleep since the surgery...will the sleep mode help with this?? Also....i was told that my pacemaker is set to 40....does that mean if i do drop to 40 then it will start pacing, even if it is a steady decline??

In regards to recovery how long until i should be back to normal, and are there any limitations to returning to normal sporting activities??

If anyone has any advice on any of the above, or just generally living with a pacemaker, that would be greatly appreciated.
I don't know anyone with a pacemaker, especially at my age, or for my condition. If this website and it's members are able to help with any support, or education about my condition, that would be brilliant. I was only given 1 weeks notice that i was getting a pacemaker, so this has all come about very quickly. I am still trying to find out about my condition and all that surrounds my treatment!

Thanks
Lyds

5 Comments

I also have NCS

by bowlrbob - 2009-03-14 01:03:08

I am older than you by a long ways and I got my pacer on an emergency basis. I had some warning signs but didn't know it till after. Mine is set at 70bpm. My rate drop response kicks in when my heart rate drops too fast. I never know when that might be. This setting kicks up my heart rate to 100bpm for 2 minutes. Then in settles back to the 70bpm. This keeps me from getting dizzy or blacking out. It has worked perfectly like this for almost 4 years. I have only had 1 dizzy spell and no blackouts. And I think my one dizzy spell may have been from something else. I almost never even know when the rate goes to 100. I now never even think about my pm except when I come to the web site or to the airport. Bowlrbob

A few comments

by ElectricFrank - 2009-03-14 01:03:43

Your pacemaker placement isn't that unusual for a young female. The placement just below the collar bone and just under the skin is much more obvious. The only real difference in having it implanted deeper is that there is more trauma to sensitive tissue and it takes longer to heal.

As for the settings ,unless you are having problems I would give things a few weeks to settle down. At your next checkup be sure to ask for a copy of the pre and post programming report. This can be helpful later if you need some suggestions.

It depends on your personality and way of dealing with things, but if you can it is better to take charge of your care. At the next checkup make them aware of any questions or issues you have. If you feel you are getting a runaround, let them know. Your statement that you were given 1 week notice sounds like you tend to let the medical people take over. There are times where this is necessary in an emergency, but not as a regular thing. (As an example, I won't let the hospital talk in terms of "releasing me". I will discuss the situation with them and WE will make a decision. )

hope this helps,

frank

Hi

by Rachael - 2009-03-14 05:03:00

Hey Lyds.
Its nice to find someone my age with a pacemaker!! I'm 23 and have depended on a pacemaker for 13yrs now. I must say that the way they have inserted it does sound a little strange, but I wish they could have done that for me as when I first was impanted with my PM they put it just beneath the collar bone. Now, the left side of my breast bone is raised more than the right. It isnt massively obvious but I can notice it but must say I only did 2yrs ago!!! After my pacemaker rejected a few yrs ago, now I have it under the muscle which, I think is better, but nothings going to be great is it?
I feel for you as you werent given any warning at all about this!! And you have lived 24 yrs....not normal but without a pacemaker so it must be very strange! Where as for me, its just a way of life now. Its normal for me.
I'm not sure about settings as they've changed mine so many times, nothing makes any difference!

But as to getting back to life... I have had 5 PM operations and each one has been different recovering but its between 3weeks and 2months! But it does take a while to get back into things even after then. But I dont do anything different to other people my age really. I mean I cant do contact sports or spar or anything but I swim, I go to the gym, I used to drink alot (not any more!) I live a pretty normal life as much as I know how. I do get 'spells' where my PM does weird things but thats only started in the last 2yrs and they wont do anything about it. But apart from that...
I'm not saying life is completely simle and nothing changes because there's the yearly check ups, explaining to people what that scar is on the beach and not going through security things and always worried someone or thing might hit you there but its all good.

Feel free to ask me anything if you want to.

Rachael

Hello :)

by scadnama - 2009-03-14 07:03:47

I am 24 years old also and originally received my pacemaker for Neurocardiogenic Syncope a little over a year ago. I still struggle with other heart related issues, but between the pacemaker and medication, my condition has been very well controlled.

I would love to chat. Send me a private message if you wanna talk. Great to meet you!

Amanda

same place

by Tracey_E - 2009-03-14 08:03:18

Mine is in the same place as yours! I was a first for my doctor also. I got my first one 15 yrs ago when I was 27. I lovelovelove it and after talking with me, several other ladies here have done it the same way so it's rare but not unheard of.

Your recovery will take a bit longer than if they had put it just under the skin because they did a lot more digging to bury it, but in the end it looks better and it feels better. I never have problems with seat belts rubbing or carrying a heavy backpack and there's no visible lump. The incision where they put my leads in is itty bitty and you can barely see it now. The other one is bigger but it's only visible if I wear a string bikini (those days are long past!). I breast fed two babies without any problems and mammograms have not been an issue either, though I always make sure the tech is aware of where it is.

You'll need to keep your left arm lower than shoulder level and not lift more than 2-3 lbs for 6 weeks so the leads have time to grow into place. With your doctor's approval, you should be able to start some light aerobic exercise like walking now. After 6 weeks, just gradually get back to your old routine, anything goes but full contact sports. I found that the soreness didn't completely go away for another month or two after that, nothing awful but not completely pain free either.

I found that the weight of the breast pulled on it when I sleep. Hugging a pillow with my left arm helped a lot, kept me from rolling over or raising my arm in my sleep and sort of anchored things.

Please feel free to ask away as you have more questions! There are a lot of us here of all ages living full and active lives with our pm's.

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