Anyone else with total heart block?

Hi all. Just wondering if anyone else on here has a pacemaker because of total heart block? Wondering is there a connection between that and random nerve pains I get. Could be down to my open heart surgery also but ever since I've had it I get terrible nerve pains in my arms feet basically everywhere. It's not all the time but I tend to suffer them for a period then it calms down again then few months later bang it's back! So painful feels like I'm being prodded with hot pokers. Never had this pre op. My total heart block was caused by the surgery so not sure but wondering is it related? 
thanks 🙏 


Yes, complete heart block here too

by LondonAndy - 2024-03-08 08:16:50

As a result of "surgical complication" when my aortic valve was replaced with a mechanical one, I am blocked and 100% paced. However, not had any nerve pain.

Also, just to mention for completeness: although it is completely blocked, there is an underlying rhythm. When my first pacemaker was changed in October 2022, when they disconnected it on the operating table I didn't even notice! 


by Lavender - 2024-03-08 08:34:04

I have complete heart block but not caused by surgery. It was just my natural expiration date of the AV node. I have no nerve pain. I also have no intrinsic rhythm 🥴

av block

by Tracey_E - 2024-03-08 10:23:44

Many of us here have complete block. My guess is the pain is from the surgery, not the block or the pacing. Have you spoken to your doctor about it?

Complete Heart Block

by SeenBetterDays - 2024-03-08 11:12:53

I have heart block and am 100% paced in my ventricles, no intrinsic heart beat.  I don't think the heart block would be linked but certainly any kind of surgery can result in nerve damage which could potentially cause the neuralgia you describe.  Hopefully as time goes on and the body heals the pain will subside.  I'm sorry you are experiencing this pain, it sounds extremely uncomfortable.  As Tracey said, might be worth discussing with the GP just to be sure nothing else is amiss. Take care.

Rebecca x

Complete Heart Block

by 3degree - 2024-03-08 13:27:36

Hi Yes I am 100% block with no underlying rhythm & also suffer from strange painful hot burning or stabbing pain plus some surface numbness and suface skin sensitivity to cold temperature - like being poked with hot poker when its cold water from shower. In my case it has been put down to my exising spondylosis - not yet proved but likely but as I am waiting for MRI scan do not know for sure. Some of the pains are also intermittent for me as well the numbness is permanent - but I have had spinal stenosis and disc operation. Hope you discover the cause of yours and if its due to your operation regards Alan

Thank you

by susiebear - 2024-03-08 17:53:09

Thanks for my replies. I had my open heart back in 2000 onto my 4th pm now. I've had these pains/hot rods pretty much since. I've asked the doctors and all they do is refer me for physio. Even after begging to be seen by a neurologist. 3degree very interesting you mention cold sensitive as I'm exactly the same. When my arms are cold I can't even describe the pains I get in them. It's just like stabbing needles. And if I rub my arms to warm them up it makes the pains a million times worse. Touching the skin is the wrong thing to do. Soon as I get warm they disappear. Does that sound similar? I take it if you are having an MRI you have a pm safe one? I do also now but my leads are original leads since 2000 so unfortunately they would melt in MRI 😭 

100% 3rd degree block

by Stache - 2024-03-12 14:38:44

My heart block was caused by cardiac arrest in the ER. Without my dual chamber pacer, I die.  I do have issues such as very cold feet most of the time except when I walk every morning for an hour.  I use a heating pad under my desk to help warm my feet.


by dwelch - 2024-03-16 00:15:44

Complete heart block but do not have these pains.  Suspect it is from your surgery or something else.

nerve damage

by Farmer - 2024-04-03 06:55:02

I have a natural full av block using the PM 100%.

Started having nerve pains and uncontrolled movements in the leg right after surgery in 2021.

Doctors said it is not related to PM surgery. I went to see a private Neurologist and it turned out that they most likely touched the nerve strain when entering through my thigh for a cateterism.

Pain is sometimes so severe it does not allow me to sleep or exercise at all.

I'm now on pain meds - 3600mg Gabapentin a day which causes memory loss, balance issues, unable to concentrate to a point that I lost my job.

Still looking for alternatives to Gabapentin.


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