Had my CRT-P fitted 9th May 22

I have paroxysmal AF which has become resistant to drug therapy and I am at the beginning my Pacemaker journey and wanted to send my thanks to all on this forum. The practical information is really useful as I was starting to think I was being a total hypochondriac regarding my pain levels. I do not have mild discomfort. I feel like I've been stabbed, which of course I have. It's sore. My heart feels like I've been kicked by a horse and It's definitely more than discomfort! Apparently my ECG is fine though so it's obvious that this is all post surgical pain. My procedure took over 3hours because the registrar had trouble getting the 3rd lead in and sent for the consultant. They managed in the end. I'm to get the AV node ablation on 6th June. 

Anyway, just wanted to say hello and I will read all the forums today. Thanks for reading 😊


8 Comments

CRT

by AgentX86 - 2022-05-11 11:50:21

Hi Toni, not glad you (had to) joined us.

As you seem to know instinctively, Your pain is completely "normal". There is a very wide range of normal and you seem to be right in the middle.

"Registrar"?Who or what is that? On the left side of the pond this is done by an electrophysiology (EP) or sometimes an interventional cardiologist, both of whom are speciaists. Depending on your physiology,  placing the third lead into the coronary sinus can be tricky but that's why specialists do the procedure (and why I choose the doctors I do). I suppose it's a UK/US thing.

My AV ablation was done at the same time as my PM implant. My Ewas at one end running the catheters and another was called in to implant the PM. I have no idea who payed traffic cop when they got to the middle. I was awake but didn't think to ask. ;-)

I'm rrealy surprised they're going all the way to an AV ablation with only paroxsymal AF. Have you already had cardiac ablation (how many?) for AF? An AV ablation is a pretty drastic step and must only be done after every other tool in the toolbox has failed. It would seem to me that a really good EP  (a specialists specialist) should be trying an ablation, or three, and perhaps a mini-maze before jumping off the AV ablation cliff. There is no going back.

Sorry if I'm telling you what you already know and have been through but you don't give us a much history and this is important stuff.

 

 

CRT P

by toniorr11 - 2022-05-11 13:26:50

Many thanks for your reply AgentX86. 

The registrar is a cardiologist EP. Just different terminology and structure here in the UK I think. Registrar is one below the Consultant EP but he wasn't a novice and the consultant oversaw the procedure and helped when the 3rd lead was proving tricky.

I've had paroxysmal AF for about 6years which was controlled by 300mg flecainide daily until December. I couldn't tolerate the sotalol or bisoprolol ( beta blockers) when they were prescribed because I couldn't breathe as I'm asthmatic. Couldn't get upstairs even. I was put on amiodarone but it's a dirty drug and not allowed to have it longer than 6months here. Too many nasty side effects. And I'm very high risk for ablations of the pulmonary veins and I don't fit the criteria... risk outweighs benefit which I totally understand. So I'm left with pace and AV node ablation. They're very confident it'll change my life. I'm very symptomatic when the fast AF happens and my life recently (since December) has been dominated by many middle of the night A&E (ER)visits with nothing working to revert it for about 12-15hours each time. I can't tolerate this for much longer tbh. So pace and ablate it is. I know it's a last resort and I've had to accept it. 

I've just been a bit worried about the amount of pain post procedure. The incision is obviously sore but I wasn't expecting the chest soreness but I guess my heart has been poked and prodded and is a bit bruised. All the tests were great before discharge... x-rays, ECG and pacing tests. If it's no better tomorrow I'll phone for reassurance or checks. 

Sorry, you almost got my life story there lol. I'm not very good with pain to be truthful. During the procedure I was alert even though I'd had a shedful of drugs. It was unpleasant! 

Post implant pain

by Gemita - 2022-05-11 14:08:50

Toni, yes they don’t really prepare us for the post procedure pain some of us might suffer and this can be considerable, even in the absence of any complications.  I am also in the UK and all I got from my clinic was “You may be uncomfortable following your pacemaker implant for the first 48 hours, but thereafter things should feel more comfortable”.  Unfortunately this was far from my experience.  It took a good six weeks to heal and then I suffered intermittently with pressure type pain across my clavicle due to partial obstruction of a vein where my leads reside.  Most patients however do not experience any major problems once the initial soreness goes.  A warm water bottle always helps me with moderate pain.  Others find ice packs help (wrapped in towelling and not applied directly to chest of course)!

I was also on Flecainide for several years and almost proceeded to an AV Node ablation around the time I received my pacemaker, so I learned quite a lot about the procedure, its benefits and disadvantages.  I would still consider an AV node ablation if my arrhythmias worsen, but my pacemaker has been a great asset for me in helping to control bradycardia, pausing, syncope from paroxysmal AF with a rapid ventricular response rate when it first starts.

I hope for the best Toni and please let us know if we can help further.  I was given a general anaesthetic for my pacemaker implant, so I was well out of it

CRT P

by toniorr11 - 2022-05-11 14:31:26

Gemita- many thanks for your reply. I don't really want any of this but I can't live a life with fast AF hanging over me. The anxiety is horrendous so I'm up against a wall here with no options left. I wish I'd had a general anaesthetic. I could feel him stitching me up at the end and said "who do you think I am? Bear Grylls?!!" They all laughed but it must've been quite stressful for them too because I was crying at one point 😬 Such a woos! 

I'll phone clinic tomorrow I think. I need someone else to know for reassurance. But both replies are really reassuring too so thankyou 😊

Always question the pacemaker first

by Keithwhelpley - 2022-05-11 18:01:01

It will be four years since my ICD/pacemaker implant and I was among the rare percentile who developed acute pacemaker syndrome. My advice to anyone getting a device is to blame the device first and always for anything new that arises with your heart. Afib or Aflutter is almost a given with any implant, thought it's rarely talked about. 

Become more of an expert on your device than even your doctor. Don't let them shorthand explanations. Understand the diagnosis that calls for the device. Understnad settings or modes (this is where many docs are poorly trained). Make them be clear on post-implant conditions. If it's Afib or Aflutter the former originates in the in the left atrium and the latter the right. And that difference is imporant. The former doesn't have a cure, but the latter does. And if you have aflutter or afib, you should NOT be pacing in that atrium. Even my Mayo Clinic doctors failed to enlighten me on that one. In essence you have an electrical storm going on in your atrium with either of those conditions, only made worse by a pacemaker throwing in its own electricla charges. 

I dont mean to be a buzz kill, but pacemakers can cause conditions they are meant to protect your from. Mine literally tried to kill me on two very scary occasions and even Mayo Clinic docs didn't see it. The worst post-implant conditions may not surface until the third year of implantation. In my case, it was acute heart failure. Thank God my hometown cardiologist had the wisdom and experience to tell my Mayo docs to back off. My poor heart fell back into compliance once the device was turned off or set never to pace in either upper or lower chamber. 

My death defying experience occurred amid the chorus of all doctors that it was in my head or I was wrong. It took near death for them to finally see the light. 

AV ablation

by AgentX86 - 2022-05-11 19:20:01

Toni, you've clarified a lot. It all makes sense now.

Yes, amioderone is a nasty drug. My cardiologist would only keep me on it for six months at a time, too but its' not limited by the FDA or anything. If I'd been older, they wouldn't have limited it. As was, it damaged my thyroid which recovered, fortunately.

Sotalol is another antiarrhythmic that does have beta blocker properties (hence -'lol'). Like every other antiarrhythmic it's also toxic. It's the reason I have a pacemaker (tachy-Brady). There is also Tikosyn (dofetilide), which falls between the two, on both scales.

I understand the "hangin over me" part. I was in persistent AF so had a cox maze to stop it. It got rid of the AF but traded it for permanent atypical (left side) flutter. Not a good trade. After three failed ablation attempts and by then I needed a pacemaker, an AV ablation wasn't a big jump. It HAS TO BE the lat resort but I'd never go back. It was perhaps the best decision I've made in a long time (she's sitting beside me ;-).

I only had locals in my chest and leg. There was significant pain when he made the pocket but really none otherwise.  Maybe a two or three on the ten-point pain scale, not enough to take any pain medication.

Aflutter can be in either atrium but it is unusual for it to be in the left. Neither has a cure. Both can be mitigated but may/will return eventually. They're caused by fibrosis and 1it Isa progressive disease. They really aren't all that much different,  in that way. If she's getting an AV ablation,  pacing in the errant atrium nor pacemaker mediated tachycardia are a problem. There won't be an atrial lead. She'll most likely start out with a CRT-P so cardiomyopathy, hopefully,  won't be a problem either.

Update

by toniorr11 - 2022-05-14 06:17:49

Thanks for the info which I've found reassuring. I actually ended up in A&E on Thursday for 8 hours while they tested me thorougly. I was concerned about the central chest ache. I know pain is subjective but I was sitting there with a constant ache and although I felt a bit of a wimp the doctor was lovely. They tested me twice for troponin. I was showing a very low level which was expected after having the implant on Monday and then the 2nd one showed a reduction in level which was very reassuring. They decided to reduce the pacing to a minimum. Apparently you can't really turn it off. And this might give me a chance to heal. The cardiologist did say that the procedure had been difficult as they had trouble placing the 3rd lead so there was a bit more stretching etc. I knew that having been awake! So the ache is post surgical pain and I've to take it easy for 6weeks then come to clinic and they'll switch it up again. Then onwards to get the AV node ablation. Much happier now. I just wanted to explain my experience because I hope it might help someone in the same position. Never be afraid to get support if you're worried. I'm eternally grateful for our NHS in the UK. 

Thank you for the update

by Gemita - 2022-05-14 08:33:31

Toni, great news that you are more reassured.  It was obviously well worth the wait in A&E to get this sorted.  Yes, we moan sometimes, but our NHS is still good most of the time and we are fortunate to have it.  Now try to recover and build up your strength for the next stage of your treatment.  

Post surgical pain is real and more common than our doctors are sometimes willing to tell us.  We recently did a survey on post implant pain (over 300 respondents) and you might be interested in the findings:-

https://www.dropbox.com/s/5rlm7ot7squtkb2/Pacemaker%3AICD%20%20Pain%20survey.pdf?dl=0

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.