pacing wire

[Golf1985]

bit of a long shot,but is there anybody on here who after ohs has been left with a tempery pacing wire in that couldn’t be pulled out after surgery,that then was causing problems,also people with pacemakers and wires have they ever caused problems proving it’s that’s the problem and had them taken out and what is the procedure like,thanks again

[Golf1985]

is there anybody really could do with help be so much appreciated 🙏🏻

[Lezzers in reply to Golf1985]

HiNot sure if I can help but I do know it's quite usual to leave redundant device leads in situ. As they're embedded into the heart muscle it's quite complicated to remove them, although it has been done I believe it's quite rare.

[Golf1985 in reply to Lezzers]

Thankyou,yeah it is but it is done sometimes if they can’t be pulled off days after surgery they don’t as pulling of and damage can cause problems also,I’m not really happy about it and feel it’s my problems I’m having,and like you say it’s big surgery again 😞

[Lezzers in reply to Golf1985]

Why do you feel its your problem? If it's disconnected from any device it's literally just sitting there, unless it's caused or causing infections. Normally when a device is put in that's the same as the previous one, i.e. pacemaker to pacemaker, ICD to ICD etc then they reuse the existing leads unless there's a problem with the old leads.

There's a Facebook ICD support group, you might be able to find some info there. It's a very friendly, helpful & supportive group.

Good luck in finding your answers

facebook.com/groups/7879967...

[Golf1985 in reply to Lezzers]

Thankyou il log on and have a look👍🏻.as got reoccurring peri but my crp markers are normal but ecg is showing heart irritation so something is out,and my body is inflamed like having a reaction to something,my bowl is now inflamed also as heart and head and sinus,they can’t work it out,having bloods sent for autoimmune but only othe think is a forign body witch is the wire,but with the nhs this is a long process and I’m not well

[Lezzers in reply to Golf1985]

Oh my, I really do feel for you, that really doesn't sound right. I'm absolutely no expert here but do you know if you've had an ESR blood test? The reason I ask is my husband has had bloods taken for this today and that will show inflammation/infection, autoimmune conditions, along with other issues such as arthritis etc. but it's a different test to crp which I think just shows infection markers.

[Golf1985 in reply to Lezzers]

Yes I’ve been at hospital today and he has sent this to another hospital for testing why nobody has done this before is beyond me,very weird that ey both in the same day abit scary that😂,just reading reports of temp pacing wirs they can cause problems

[Lezzers in reply to Golf1985]

Yeah very spooky 😳 I only heard of this test today and like you, I've been doing a bit of research. Tbh, I think our GP is just being very thorough in getting this test done, my husband is having his nerves & muscles tested next month due to problems he's been having that are worsening, I think the test is just to rule out other problems that could be going on.

Good luck with your test, I'd be interested in knowing your results if you don't mind, and good luck in getting the answers you need. Fingers crossed thing's improve you for ASAP.

[Golf1985 in reply to Lezzers]

Yeah il let you know what comes back form it all there is something going on weather surgery has triggered a response or autoimmune response but something not rite been like it 4 months now,you to I hope he gets answers

[Lezzers in reply to Golf1985]

Thank you, I hope so too as my husband is in a lot of pain, though fortunately, unlike yourself, it's not constant for him but it is getting worse. I wonder if there's a new directive out for. GP's/hospitals to start using this test more, apparently it won't say what is wrong but it will indicate if further investigation is needed. Seems a bit of a coincidence.

[Golf1985 in reply to Lezzers]

I’m sure also when they put knew pacemaker wires on what I’ve read they leave the old ones in sometimes for that reason,just wanted to reach out for anybody that had problems with wires

[nursenancy53]

I had an AVR 5.5 years ago. One pacing wire was easily removed, the other couldn't be removed so it was cut. Doctor assured me it would not be a problem and so far, as far as I am aware, it hasn't been - I just never think of it

[Golf1985]

thankyou so you never had problems with it then or pericarditis or anything else or body reaction

[Mitchum]

After my mitral valve re-placement the day before discharge a ward sister removed my last "tubes" but struggled with the wire and told me she would leave it in as it would do no harm, which concerned me a little. Two minutes later the surgeon entered the room and he took it out, saying that it wasn't uncommon to leave them in but better to remove them if possible.

[Golf1985 in reply to Mitchum]

Yeah I’m the same as read they can cause problems and years down the line also they can move or migrate into the heart,my surgery was abroad,the surgeon should have take it out but it was another person who left it

[Thanksnhs in reply to Mitchum]

That's exactly what happened with mine the nurse could only remove one and she asked for the surgeon to come and have a look, he removed it in seconds. Char

[Efka]

Hi not sure I can help much but I can share our current situation.

So we are 2 month post a 2-lead (right atria and right ventricle) ICD implantation. Whole host of symptoms directly after that are still being investigated.

Whilst researching I found lots of case studies showing both vagus nerve and phrenic nerve irritation/damage from leads throwing up all sorts from breathing issues, swallowing issues, pains, muscle twitches, etc etc. and as you’ve mentioned inflammation so peri/myo.

Sorry I can’t be of more help, and speaking as much to myself - you know your body the best, don’t give up and don’t be fobbed off!

All the best, Eva

[Golf1985 in reply to Efka]

Yeah Thankyou for this is what’s happening to me and no she wants to help got appointment with a surgeon on Tuesday to ask but everyone spoke to said wire won’t cause problems but that’s not everybody something isn’t rite and I’m running out of time my body isn’t rite,but my surgery was done abroad and surgeon says it’s not the cause but he would,my hospital has no surgeons so there asking the bigger one but I’m holding out no hope I’ve lost it all to be honest

[Efka in reply to Golf1985]

Please hang in there and don’t give up hope! As you say doctors I think don’t often focus on side effects and complications and it throws out their straightforward “you have A so we will do B” treatment plans.

So since the operations it’s:

- Breathlessness and air hunger (like not getting enough oxygen)

- Chest pressure like a vice feeling and central chest pain

- Some inflammation as there is low level fluid on the lungs

- Difficulty swallowing cold water and cold foods (I think oesophageal spasm which points at phrenic nerve)

- Central sleep apnoea (points at vagus nerve)

- Stomach twitches (this is probably more from active pacing so from the electrical currents leaking)

- Fatigue, I guess could be just from all of the above…

That’s the main ones, they all came on a day or two after the operation and have been the same since. Finally last week we got hold of someone up the hospital who listened and will investigate, fingers crossed…

You keep asking questions and I find it helps to write down all your symptoms and timings to show the doctor.

I hope you will get help soon, Eva

[Golf1985 in reply to Efka]

That’s mad I’m getting sleep apnea waking up heart racing and the breathing and also,have they said how they will investigate it all for you,are you in the Uk

[Efka in reply to Golf1985]

Yes UK too so all NHS. Sadly so far no real investigation just a bit of a “oh ok well after 2 months we’ll believe you that you are having issues”.

From what I’ve read a contrast CT scan might be best to show lead positioning. Probably a chest X-ray first but from reading they don’t show much.

Maybe start asking questions around

So could the lead be irritating nerves such as the vagus and phrenic causing my symptoms.. And cause inflammation and myocarditis/pericarditis.

From what I’ve read this type of complication rate is around 1-5-% (reported so likely much higher in reality) so I think the doctors will need convincing to look at it. Don’t give up!

[Golf1985 in reply to Efka]

Yeah I’ve had x rays and chest ct for clots so think the pacing team at the big hospital have seen the lead but I’m seeing a surgeon private on Tuesday to discuss it and those bloods hopefully back next week on auto stuff but something not rite causing all this,nobody else who had same op has me has had this trouble who had wires take out

[Efka in reply to Golf1985]

I hope you can get some help and a way forward Tuesday. At least it’s great you’ve had xray and CT scan, hopefully your consultant might be able to access the results too.

I think it is quite uncommon to get lead issues (as I said from medical literature about 1-5%) but that still means that some of us will get it so it is possible that’s your underlying cause!?!

Keep listing your symptoms and ask questions. All the best!

[Golf1985 in reply to Efka]

Yeah the pacing team said they could see it on the scan as needed an mri but they wouldn’t do it, I can also see it on my X-ray slightly but it’s so hard to see and they say shouldn’t Be causing issue but how do they no,spoke to my surgeon today as we txt and he says those nerves are no we’re near the wire but he would as he left it in but something is wrong,my ct wasn’t for that it was for my lungs but presume they can see it there or may need to be ct angio I’m not sure

[Golf1985 in reply to Efka]

Can I ask what your symptoms are since?

[Golf1985 in reply to Efka]

Are any of your symptoms similar to mine regarding inflammation and gut

[Efka in reply to Golf1985]

Actually re gut I forgot to say yes bloating and new excessive burping.

[Golf1985]

but also in ivbradine and don’t know if that is a cause of the ears ringing and pressure and gut think going to try back on the beta blockers

[Wingnutty]

I'm certainly glad mine came out. Nurses couldn't get them out but a doctor came along about 12 hours later, told me to take a deep breath in, then breath out as far as possible and hold it. Just as I was getting to the end of my breath, he gave it a bloody good yank and it came out no problem, same with the remaining one. I think to some extent, less experienced medical staff are unwilling to put enough force on the wires for fear of causing damage and it should be left to more experienced staff. Something that would have worried me if they had been left in, is what would happen if I needed to be defibrillated at a later date. You have copper wires going straight from your heart to the surface of your skin and these will cause a short circuit between the skin and heart directing most of the electrical charge from the defib to the entry point of the wire into the heart. I'm sure they would place the defib electrodes away from the end of the wires provided they were obviously visible in an emergency situation, but I think it is a question worth asking your doctor about.

[Golf1985 in reply to Wingnutty]

Doctors are a waiste of time it’s hard enough to get to see them never mind anything else,this is another concern like you say,It was a heart surgeon who couldn’t remove mine not the one who did surgery but another,it’s not good as my body is not happy I’m stopping the only med been on thro it all to see if that’s stops it but I don’t see it as this,dint all start till 3 months on The med and after surgery , when the pericarditis started but feel that was there from surgery but my worry is my gut I can’t go and even on laxatives so it not just constipation,it’s inflammation or something muscle related,always struggled with heart rate and since the peri it’s not been good

[Wingnutty]

I've never thought that it was OK to leave them in. A good friend of mine was the chief physiological technician for Shetland so he did all the cardiac echoes, ECGs and other tests for the whole island. When I e-mailed him to say the nurses couldn't get the wires out, he replied saying, no problem, they will just snip and paste to cover them up, but I think he was very matter of fact about it because he didn't want to worry me. I was suffering with several problems at the time and quite fed up. Sadly that friend died back at the end of last November from MND, which is a horrible way to go. I think every effort should be made to remove pacing wires at the earliest opportunity because the longer they are left in, the harder it is too get them out and doctors and nurses should be trained in exactly how much tension to use in taking them out and be taught about the consequences of too much and too little tension. It's a very practical exercise and skill that can make a real difference to patients lives.

[Golf1985 in reply to Wingnutty]

Thankyou,they never pasted mine up just cut it and pushed it in,the one he pulled of really hurt and pain up into my jaw then and echo when got home said blood clot or thrombosis were he had pulled it off,yeah any forigh body is not good but they just say millions have pace makers and they have no problem with wires,I’m presuming they are the Same sort of wires,they surgeon replied today and said the vegal nerve is not Near it and the other nerve is to the side he was blunt saying fine but I’m not fine at all

[Evans123]

Hi Golf1985

I like you had one of the pacing wires snipped off because the nurse could not get it out. That was June 2018. Within a few weeks I was getting sharp pains in my abdomen when bending over which was getting worse. I thought it was to do with the pacing wire but the Drs were dismissive.

I started to google pacing wires being left in and to be honest I was quite frightened. Long story short by October the same year I had a small pointed lump under the skin in my abdomen. I was quite thin at the time which helped as it was sometimes visible. Again clinicians were quite dismissive as the lump was not always visible depending on my position (stood up or lying down), so I took photographs.

A GP reluctantly after showing the photographs and me near enough pleading with her wrote to the surgeon who had operated on me.

After seeing other cardiologists the surgeon who operated on me again very reluctantly and quite rudely said he would do a procedure under local anaesthetic to find/remove the wire. I too was worried about the affect it would have on my heart having it taken out.

I was taken to theatre wide awake and administered local anaesthetic in the area where the lump was which had been marked. It was successfully removed after some searching around under the skin. I just remember he looked at the person monitoring my heart and then a quick pull and it was out. I did feel it but was relieved to have it taken out.

I have just remembered before the wire started to show as a lump there was discussions on some sort of scan to locate it, I can’t remember which type of scan. I think I was even considering going private (not sure how I’d fund it at the time).

I’ve had no issues since. I do feel for you because as you say you know your own body. I would suggest you keep persisting to have this investigated further.

I hope this is of help.

[Golf1985 in reply to Evans123]

Hi Thankyou for getting to me,have you got a contact number,so had the end of the wire dropped from the incision site to the abdomen or is that were it was cut off originally as if mine has dropped it could be similar or piercing the stomach bowl to inflame it

[Evans123 in reply to Golf1985]

Hi

I don’t think there is a way to message my number without everyone seeing it but someone may be able to advise otherwise.

The wire had been pulled slightly and cut at skin level but then I guess it retracts within the abdomen. The incision to remove the pacing wire was not in the same place where the pacing wire was positioned following my operation.

Having a scan may be helpful but you would need to ask a medical person what type of scan would show a pacing wire. I was advised pacing wires do not show on X-rays.

[Golf1985 in reply to Evans123]

So the end of the wire had dropped once it retracted inside and could of easily gone into an organ just lucky it came back out the skin

[Golf1985 in reply to Evans123]

I have messaged you privately on here it’s in chats