Nerve pain

[Cherrelleford]

Hi all,

I had my ICD fitted 19days ago. I was just wondering if anyone else had gotten nerve pain down the side of the neck and near collar bone? I've had it on and off since it's been fitted, I've also had chest pains too which I went to A&E for but they couldn't find what caused that. Just wondering if anyone else had these. I'm 34 and have severe dilated cardiomyopathy which is the reason for the ICD.

Thanks in advance

Cherrelle

[Wodney1966]

I I've got dilated cardiomyopathy n heart failure had a icd fitted 4 yrs ago only pain I've had was when I was out in cold 😊

[edplayer]

Hi Cherrelle, Sorry to hear you're having problems. I also have dilated cardiomyopathy and had an CRT-D fitted on 1st Oct so in a very similar place as you. I've had some new discomfort / pain around the implant site about 3 weeks after implant, but not nerve pain like you describe. I called the arrhythmia nurses who look after patients post implant and they have been really helpful and reassuring. Have you been able to speak with someone like that? My experience has been that whilst the wound has generally healed surprisingly quickly there have been ups and downs as I start to do more with my left arm. I was given a leaflet with some simple and gentle mobilization exercises which I found to be important and really helped with easing stiffness and aches around the neck, shoulder and arm. Have you been able to do anything like that? It could be that muscles around the left shoulder and neck have got very tight as they naturally try to protect the wound and implant site. Tight or inflamed muscles could be squeezing nerves and causing your problem. If you feel around the nearby muscles and find tight or sore spots it might help to gently massage them regularly but steer clear of massage of the wound or device itself unless advised otherwise. If you've not been given mobilization exercises ask for some from your arrhythmia nurse as its very important to keep doing these to avoid getting a frozen shoulder or other issues. I hope you find a solution. Good luck!

[Cherrelleford in reply to edplayer]

Thank you for your reply.I have been doing the exercises etc and arm/muscles not stiff. Hard not to move when I have 2 young children.

The surgeon wanted me to go in for an echo and pre-check before my 6/8 week check. But they asked me the day before so couldn't go as can't get childcare at short notice.

I have an amazing community heart nurse who I speak to.

Thanks again x

[edplayer in reply to Cherrelleford]

Going through this with two young children to look after cannot have been easy at all. I hope your cardiologist can get you another appointment with a bit more notice so you can make arrangements in time.