Pacemaker moving in pocket

Movement

by piglet22 - 2024-07-24 08:06:15

I've just tried mine sited at about 12-centimetres below my collar bone and can't get more than one centimetre either direction.

I guess when you say "my doctors", you do mean your pacing doctors?

I don’t have a load of flesh (cushioning) to move around, but you probably have more.

I'm no expert, but I would think it might be the fleshy stuff moving rather than the device within its pocket. I'm also guessing that over time, the general gunge will lessen movement.if it were the pocket.

Make sure you get a definite answer from the implanters.

Perhaps one of the lady contributors could advise better.

Device not secure in pocket

by Gemita - 2024-07-24 08:29:53

Another Ehlers Danlos (hypermobiity) patient here.  I am certainly not experiencing what you are telling us, but my team sutured my device in place and after 5+ years, it is secure.

In your shoes and with evidence of movement, I would definitely go back to your implant team to try to resolve this issue.  

They usually allow some slack on the leads so that they don’t get pulled, but if there is such movement as you are describing, it is possible that the device will turn completely in the pocket, resulting in coiling of the lead, or lead dislodgment, impairing communication between the electrodes and the generator.  

As an Ehlers Danlos patient, my device still seems sensitive to movement and I am not completely free from discomfort even after 5+ years.  I really don’t know whether what you are feeling is normal or how uncomfortable you are?  Only you will know that, but your doctors should be able to make sure that the device is at least secure.  This doesn't seem to be the case at the moment, so you need to keep up the pressure and go back to your doctors. 

Hopefully you are not noticing any difficulties from being paced or noticing any unusual symptoms to suggest your device is failing?  That is what my main concern would be with a moving device.  Good luck

yikes

by Tracey_E - 2024-07-24 10:02:55

Mine shifts around a lot but not that much. It was sutured but did not hold. It can take up to a year for them to settle and scar tissue to (help) keep it in place. Keep an eye out for it flipping. Try not to touch it. Would a sports bra help hold it in place?

Placement

by Lavender - 2024-07-25 01:35:28

My device has always been four fingers below the collarbone. It's sutured on the sternum side only. I still lean into a small pillow to sleep because I don't like it to flop forward in the pocket. 

Whole area moving

by IrishToast - 2024-07-25 09:59:40

Mine shifts with gravity, one finger width from the collar bone when on my back, to three when standing. It can be right up to my shoulder bone when on my side, so I too need a small pillow there. It initially dropped in the pocket as it healed as the scar was centered but now at the top edge. 

Can anyone explain the mechanics of what "creating a pocket" does to the arm and shoulder?  I am six months out and there is still tightness in the back of my upper arm and also over the top of the shoulder bone. Range of motion is not a problem because I followed all of the advice here, but I am still working on strengthening the left arm. There was a profound difference on the left when I first tried 3 lbs weight drop behind the head; I couldn't do it with the left. I am up to 5 lbs 12 reps but still much more difficult on the left. Does surgery damage something? Or the location of ligaments changed? 

Irish Toast

by Tracey_E - 2024-07-25 10:39:33

The pacer is small, but it's still a foreign object. They had to cut to put it in and scar tissue will grow. After 5 devices and 30 years, my left side is not as strong and I have mild shoulder issues if I don't stay diligent about stretching. I wouldn't go so far as to say damage, but there is an effect. 

Stay Diligent About Stretching

by IrishToast - 2024-07-26 15:14:05

That's good advice, Tracey. I plan to use it before I lose it. I won't stop stretching any tightness and strengthening weaknesses. I can do that even if I no longer have access to a fitness center.

More Explanation

by Militiagrl - 2024-07-28 19:27:58

To be a little more transparent, what they did was deep brain stimulation which is basically a pacemaker but for my brain. I have seen the neurosurgeon, the device rep, and the movement disorder neurologist that does my programming. All are stumped and have no idea what to do with it. It's also not that small it's the size of my palm in my right side. I've called the device company to see what they might know as well as talking with other people who have done this surgery but no one else has had this. As they told me to think of it like a pacemaker I thought maybe reaching out here might bring some help as it's similar. 

I've tried sports bras and wrapping an ace bandage around to keep it down all the way to using kinesiology tape to have it move less by my skin is sensitive and the tape keeps breaking down the skin.

I've seen my medical team on this a few times and they have no idea or answers no matter how much I push for answers. So far there's no sign of the device failing but there's a pulling when I move or turn my head in the opposite direction (wires run down the right side of my neck to the device) which is a little concerning as I think it could be the wires being pulled.

I'm at a loss of what to do as no one else seems bothered by this but it affects raising my arms to do things (wash my hair, get dishes out the cabinet, get things from the freezer, etc.) and causes pain when I try to sleep.

I appreciate all the help and advice. Though this isn't exactly the same I am hoping through here there's a larger pool of caring people willing to help.