On Friday I had a Cardiac Resynchronisation Therapy Pacemaker fitted under local anaesthetic. I can safely say that it was 2 of the most traumatic hours of my life and at 64 I’ve had a fair few. The surgeons barely spoke a word to me as he sliced and diced and almost constantly pushed into my chest with tremendous force. The local anaesthetic being injected in was hell for about 15 minutes then he started making the pocket and I felt every singe thing. I involuntarily moaned and groaned and even screamed at one point whilst the rest of the “team” were having a very loud jolly over the other side of the operating theatre with medical rep. I was ignored.
The nurse completely ignored me, when I’d been assured he would be by my side the whole time, reassuring me as I was very nervous.
I have rather large breasts and the pain since I’ve been home has been unbearable. It’s a lot better when I lie completely flat and support my left breast with a pillow. I don’t understand what all the vicious pushing on my chest was?
The rest of the staff at the Northern General in Sheffield were fantastic over the additional 10 hours I was in their care, especially in the Theatre Recovery Unit. They seriously couldn’t do enough for me, especially as I had very low blood pressure for most of the time I was in their care.
I don’t know what to do, as if I complain, then the same surgeon and his team may very well operate on me in the future. I was told just before the surgeon started that the leads have s 30% chance of having to be reattached.
I seriously could not go through that again. I even considered jumping off the operating table part way through the procedure as it was so unbearable. I’m completely traumatised. Any advice would be greatly appreciated.
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I’m so sorry to hear of your experience. This sounds like it was an awful ordeal and I can’t imagine how it must have truly felt for you.
I know you mention that you do not want to complain, but reading your story and under your current circumstances, at the very least I would take it up with your PALS service at the hospital. It needs to be addressed in my opinion, and going forward, I’m sure they will conduct many more pacemaker procedures on other people and if you reaching out can prevent that from happening to someone else again, I would say it’s very much worth it.
Of course, this is just my thoughts on the situation and you should do what you’re most comfortable with.
Please let us know how you get on. I would perhaps also get in touch with your cardiologist for the discomfort you’re still experiencing. Failing that, if your symptoms get worse, please call 111.
Many thanks for your advice. I’m normally very proactive if it comes to poor service/treatment and I’m sure I will take the bull by the horns after a few days but at the moment I’m in complete shock at how awful the experience was.
Tos92 have you any experience of Post traumatic stress disorder? It's not trivial, quite a few of us heart patients sadly have PTSD because of our experiences.
Yes. I have personal experience with this. It’s been ongoing for about a year, and I’m also in receipt of treatment for this. Therefore, I can understand the trauma related to a negative healthcare experience.
I am so sorry you have had such a poor experience of care.Have you spoken to your GP about what happened? Are they able to offer you any further support?.
Talking therapies can be helpful in this situation.
The behavior of the staff sounds to be unprofessional as well as unpleasant for you.
None of us like to complain, however if you do decide to get in contact with the Patient Advisory Liaison Service PALS and raise your concerns about your poor experience, it shouldn't affect your care in the future.
You can also ask to be seen by a different doctor next time.
I have had to complain about my care and the attitude of a Cardiologist, who examined me without my consent. He pressed his hand hard on my ribs next to my sternum, because he didn't at first accept my rare diagnosis. He just did it without telling me or asking my permission.
He even threw my careplan across the room.
I contacted PALS and received a formal written apology from him. I have met him again a few times ( I am in hospital about once of twice a year).
As it’s the weekend I haven’t been able to speak to my GP or heart failure nurse yet but since reading all these replies I’m becoming more and more determined to do so. Thank you so much.
This reply is very reassuring, thank you. I was beginning to think it was all in my head. Surely it couldn’t have been as awful as I remember but knowing your mother in law suffered similar makes me doubly sure it really happened.
I had to climb up three metal steps to get on the operating table but as I’m very short I couldn’t reach so had to move it nearer. The male nurse just stood there looking on in disdain and did not offer any help. Due to my spine problems and peripheral neuropathy I am rather unsteady on my legs so a helping hand would have been very useful. I didn’t see him again for the whole 2 hour procedure. Just heard him laughing with the other staff and the Medical Rep from Boston Medical. They were so loud and unprofessional it made me even more stressed.
Was this similar to your mother in law’s situation?
My mother in law is in her 80's, they missed her heart failure at first.
She's not one for complaining, the hospital tried to send her home the same day. She lives alone and has mobility issues. We live 200 miles away.
They did keep her longer once we made them aware of her situation.
They sent her home without the monitoring box. When she returned for her check up they discovered one of leads was displaced and she had to be readmitted.
Trauma, be it a physical or mental wound can take time to recover from.
The sense of disbelief, playing over the experience in your mind and blaming yourself is not uncommon.
I have hospital acquired PTSD. I have the support from a Cardiac Psychologist.
I find it helpful to write my experiences down it helps get the negative feelings out of my head.
You have up to a year to raise your concerns, so you do have some time to reflect before contacting PALS.
In the meantime you might find this information may help.
Thank you for your first post and what a horrible one it is as you recount your ordeal having a pacemaker fitted.
Many on here will agree with you that the actual procedure can appear to be very conveyor belt and not very personnel , it is a proven way of moving people though the system and it works.
It hides the fact that this is still a complex operation and just because it seems routine doesn't by any mean make it so.
So what went on with yours? it is totally unacceptable that you felt ignored and certainly although uncomfortable you should not have been in pain unless it was explained to you why you would be. { I was told that the third lead was more of a problem and that I might feel it, which I did }
Please do not worry about making a complaint it will make it better for others that come after you.
I hope that once it all settles { and it will } you will begin to understand the marvel that has been placed in your body and what it will do for your continued health.
Please take care and follow all the advice given for your recovery, very soon your unit will become apart of your life and not you apart of it's.
many thanks for your reply. I will certainly follow every bit of after care advice I’ve been given. I’m too terrified to end up back there. You’re right about the conveyor belt. I was just a number but I am constantly replaying the horrific experience in my head over and over. I can barely believe how bad it was and don’t understand how it could have been done under local anaesthetic and sedation, neither of which made a bit of difference. I just wish they could have given me a general anaesthetic as I’ve had plenty of those with no issues.
Hi, I'm sorry you've had a traumatic experience, my husband has had 2 ICD's fitted over the years & never had any issues. The first time he was experiencing pain as they were fitting it but the team could see that and he was immediately given more sedation.The 'pushing & shoving' happens when the device is being fitted into the pocket that's been made in the inner wall of your chest to accommodate the device. Unfortunately this is part of the procedure & can't be avoided. Was your device fitted under the muscle or above it?
If you feel you wish to complain then do so, I'm sure the medical team would prefer to have feedback so they can avoid making the same mistakes. They're professional people they're definitely not going to make it more difficult for you if you have further dealings with them, they certainly wouldn't take it personally.
Unfortunately, it can be incredibly painful after it's been fitted, this should gradually settle down. You're usually advised to take paracetamol but if that isnt helping your GP will be able to prescribe stronger pain killers, my husband was given cocodermol.
Finally, you will have been given a list of what you can & can't do, it's important that you follow these instructions to ensure the leads have time to bed in. Whilst the leads can become detached it doesn't t mean they will, in reality very few people have any issues with their devices/leads but as with any procedure you do have to be made aware of the possibility.
Good luck, I hope everything settles down for you quickly. 🤞
Many thanks for your advice. I’ve no idea about the position of the pacemaker and unfortunately the brutality of the procedure left me in shock and I didn’t ask any questions, which is very unusual for me.
I’m sure I will rally soon but I really wasn’t prepared for 2 hours of pure hell, plus my blood pressure was so low afterwards that this was mine and the doctors and nurses main concern in the recovery unit.
It's really immaterial where the device is fitted, it's just that if it's been fitted under the muscle then it is a more difficult procedure & recovery is more painful Hopefully things will soon settle down for you. 🤞 It's worthwhile putting a list of questions together to ask your nurse & the pacing team & hopefully get some answers.
I belong to a few support groups & having this device fitted has improved the quality of life for so many people, I hope it's the same for you.
Finally just as an aside, as I've already mentioned my husband has an ICD. This year alone the ICD has actually saved his life quite a number of times as he's been having lots of VT's resulting in seriously low blood pressure & loss of consciousness several times, we can't stress how grateful we are that he has his device, particularly as he has had a previous cardiac arrest.
many thanks for your kind words. Unfortunately it did happen and it’s going to take me a long time to recover from the trauma of the surgery. Sounds like I was just very unlucky.
hi. I had a Hickman line fitted under local anaesthetic and the amount of pressure used to push it through my chest was horrendous. The doctor told me it wouldn’t hurt but even after having 2 open heart surgeries I can say that it was one of the most painful experiences that I’ve ever had. Afterwards I felt like I’d been in a car crash as I was in so much pain. I was on codeine for a week because it ached so much. Obviously the Hickman line is nothing compared to a pacemaker so I can only imagine what you went through and I’m so sorry that you had to experience it. I hope that you start to feel better soon and would encourage you to complain about your poor treatment. Xx
Hi and thank you so much for taking the time to reply. You have explained exactly how I felt in the operation and describing it as like being in a car crash afterwards is exactly how I feel now, and I should know. 17 years ago my then 18 year old eldest daughter and I were hit head on by an out of control drunk driver at 70mph in a 40 zone. It was the night before her driving test and I was the passenger. We were in a little Ford Ka and I had no air bag and he was in a Range Rover. The seatbelt almost cut me in two, and for months afterwards my chest was absolute agony.
I’ve just taken my last allowed dosage of co-codamol and I’m panicking because just paracetamol won’t come close to helping me with my pain. The surgeon didn’t wait for the local anaesthetic to take affect before he started “attacking” my chest and the sedation felt non existent. I thought he was trying to break my ribs he used so much pressure. For 2 hours non stop. He did do a slight top up on the local plus sedation once but to no effect. The male nurse didn’t come anywhere near me for the whole 2 hours of the ordeal. I feel completely traumatised and it doesn’t help when so many people keep commenting that for them it was a walk in the park. I’m not imagining what happened in the surgery and the terrible pain I’ve been in ever since, so thank you once again for your insight.
Hi. It sounds absolutely terrible and I am gutted that you have experienced this. velvetsky has given some good advice about ringing 111 and also making a complaint when you feel well enough. No one should have to put up with this. Let us know how you get on x
Hi, make a big fuss, otherwise they will continue to act like this with patients. Phone 111 and make a complaint about your pain levels, ask their advice. When you feel better make a complaint to Pals, then to the Ombudsman. I received appalling treatment 2 years ago, I am surprised I am alive. I have pursued my complaint but they will try everything to put you off. Sending you a big hug, sounds like you need it.🫂🫂
Thank you so much for your very supportive reply. My pain levels are still very high this morning and I’ve taken my last 2 co-codamol tablets this morning. I’m feeling stronger mentally and I’m determined this appalling treatment will not get covered up. I’ve pulled up my big girl panties after 3 traumatic days and this is mainly due to the thoughtful and supportive responses, like yours, that I have received on this forum. Thank you once again.
I am so sorry to hear you had such an unpleasant experience having your pacemaker procedure. I had my first pacemaker 3 years ago and I had exactly the opposite experience. I selected to be fully awake instead of drowsy and can honestly say I only felt a bit of pressure in getting the pacemaker into position and a bit of prodding to finish everything off. Which only took 90 minutes from start to finish. I can only think it's down to the person carrying out the procedure. I would complain because sounds like he needs some retraining on how to treat patients. Take care. Brian
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