Pacemaker movement

Pacemaker position

by piglet22 - 2023-11-25 05:21:52

Hello

Firstly, good luck with your health problems.

As a gentleman, my chest arrangements are different, but I had a precautionary mastectomy back in 2006 and have some appreciation of the worries.

My device on the left side lies just below the skin and I can feel every detail of it. I can feel the size of it, the orientation and then just below the collar bone, a distinct small lumpy object which I assume is where the two leads enter the vein.

I do constantly reassure myself it's still there, but other than that it gives me no concerns at all.

Seek early advice

by Gemita - 2023-11-25 05:33:50

Liz, firstly I am so very sorry to hear about your breast cancer diagnosis.  I hope you had early treatment under the NHS and that radiotherapy will help, or has helped to stop any spread or painful symptoms?

I see you have been a member of the Club for many years and have had a number of difficulties with pacing and your pacemaker.   I hope you were able to find another cardiac team to take over your care and that you are doing better from a pacing perspective?

Many of us can feel our devices when we lie down on one side.  The degree of movement or protrusion can sometimes be uncomfortable and we may feel as though we need to change position.  I can still feel mine and a slight protrusion when I lie on my left side and my device was implanted in 2018.

It is important that we do not try to push our device back into position in case we pull on the leads damaging or dislodging them, causing malfunction of the pacemaker.  My advice is to contact your pacing team as soon as possible to have the device checked for unusual movement.  They usually suture the device in place during implant, to secure it in the pocket until it is well embedded into tissue.  I presume your implant is fairly recent.  As already mentioned, if the device keeps moving, or flips over, it could damage the leads causing malfunction, so I would get it checked soonest and please do not attempt to manipulate the device back into position yourself.  Good luck

Pacemaker position

by Flo - 2023-11-25 10:51:32

Hi Liz, 

I had a pacemaker put in due to sick sinus syndrome on the right side 2 years after a lumpectomy and 33 radiation treatments on the left side for breast cancer.  I’ve always had trouble with the positioning of the PM and leads and had to learn to sleep on my back which I am used to now and am comfortable with. 

Wishing you well with your breast cancer and pacemaker care.

Radiotherapy and pacemakers

by Selwyn - 2023-11-25 12:14:24

Hello Liz,

Here is hoping that your treatment results in a total cure. Keep fit, keep strong.  I am pleased to say that the world is full of people that have survived breast cancer, had treatment, and have lived long and productive lives.  There are loads of new treatments coming out.

With regard to radiotherapy and pacemakers - I found that the machines produced a very fast pacing scenario. If this is the case for you, then you need to have your rate response ( for exercise) turned off. I think you should tell whoever is responsible for monitoring your pacemaker during therapy that this should be the case as I had to work this out for myself from the medical literature and spend 7 hours at the radiotherapy centre before they decided I had not had a heart attack!  It is not common knowledge amongst the techs.

Having a pacemaker below the skin is OK provided the skin is OK. I can see the wires and everything with regard to my pacemaker position. I can get my fingers around all 4 sides. It also sticks out at the side as a sharp point. Uncomfortable if I use a rucksack. Otherwise, I don't think I would ask for a site revision. I do keep an eye on the skin. If there was redness or any skin change, I would want someone with medical knowledge to check it out. Fiddling should never occur. If you start to do that you can develop 'Fiddler's Syndrome", which certainly is not music in your ears.

Having radiotherapy is not like in the old days. Yes, there may be some tenderness, though many people I have seen have suffered more from excessive sun burn.  The end jusifies the means, so best wishes.  You may want to eventually, 'ring the bell.'.!

I have the same issue

by atiras - 2023-11-25 16:41:37

I had a pacemaker implanted on my right side at the end of July. I had previously had devices on my left side but that pocket was a mess after a history too complicated to go into here.

I never had any problems on my left side but suspect my weight loss post heart transplant has affected things. At night, whichever side I sleep on, the pm moves towards my centre and flips on edge. When I  get up I can feel it slide out and down to its day time position.

In my case I very much doubt they'll go back in to try to improve things; being heavily immunosuppressed means any surgical procedure is to be avoided if at all possible. I am seeing my cardiologist in a couple of days and will discuss it then but an not hopeful.

I can not sleep on my back - never have been able to - but I have found that a well fitting soft sleep bra with a 'port pillow' stiched into it to apply gentle pressure to the pace maker keeps it in place or at least stops it from flipping onto its edge. Maybe a bit Heath Robinson but I'll settle for what works.

Reporting back

by atiras - 2023-11-28 16:36:38

I saw my transplant team yesterday (routine review, all is fine), and asked about my wandering pacemaker. It was a 50-50 chance whether the consultant was a woman or a man, but I got the woman, which helped.

No, they're not going to go back in and sort it out - the risk benefit profile doesn't stack up for a transplant patient. She tells all her female patients with the same problem ( and apparently women patients who lose weight are most prone to it) to get a well fitting sleep bra and add a little padding if necessary. So my fix now has official endorsement :)