Please help! Feeling awful after surgery + other concerns

Hi everyone! I could really use some guidance. So, I am 26 and got my pacemaker implanted four days ago. I know that pain/soreness in the incision is totally normal, but even despite this, I haven’t felt well since getting the pacemaker put in. A few things I’ve been experiencing:

  1. Sharp pain in my left side ribs around the mid-section
  2. Dizziness/lightheadedness + nausea
  3. Soreness on the right side of my neck, and inside my throat when I cough
  4. Back pain (unsure if this is related)
  5. I think I can actually feel my PM working. From what I understand, I’ll be actively paced for a while before it’s adjusted, which is fine, but I was under the impression I wasn’t supposed to actually be feeling this?

Are these things normal? Has anyone else experienced them? My cardiologist is VERY hard to get a hold of, and honestly, has been awful throughout this entire process. I feel as though I was rushed into this procedure without having time to actually talk everything through with him. Despite attempting to call his office numerous times while in the hospital (admitted with 3rd degree AV heart block), I didn’t actually speak to him until about 15 minutes before the procedure. My lack of knowledge and now general distrust towards my doctor is fueling my anxiety. I just feel like I have no control anymore over what’s going on in my body.

I think my anxiety/concern also stems from the fact that I question whether I even needed this procedure. While I have gone into heart block a couple of times in my life (the first time was back in 2017 and went away after a couple of days), it has never actually led to anything significant happening. My heart rate even during my recent hospital stay was very steady at rest, never dropped very much at any point in time, and I’ve never fainted as a result of the block. Additionally, prior to receiving my procedure, I felt FINE. My cardiologist noted this, but still suggested I get the PM regardless. I was isolated and alone because of COVID and thought it made sense at the time, so I decided to go through with it.

Now that I’ve had it for a few days, I don’t feel any better and am regretting having done anything since I was feeling fine prior to the implant. I am in the process of seeking out a more diligent cardiologist but wanted to also know whether it is even possible to get the device + leads removed in my circumstance.

I am just very scared about this whole thing. Any guidance would be appreciated!


7 Comments

It gets better

by Julros - 2021-04-17 02:47:34

I am sorry to hear that you are feeling sore, and that really sucks that your cardiologist isn't getting back to you. The soreness is likely post op pain. The biggest worry would be if you are short of breath, or develop a fever or redness at the incision. Rest, ice, and sleeping in a recliner worked for me. And keep moving your arm without raising it above your shoulder. 

You may be feeling the pacer working, actually, depending on the settings. The power that generates the pulse is set higher at first, until the wires scar into place and inflammation decreases. this can trigger the muscles in your chest to twitch at the same rate as your pulse. This can really mess up sleep. They will adjust this in upcoming interogations. 

As far as needing the pacer, you likely did, and it is better to get it before you pass out and drive your car off the road. Seriously. Depending on the grade of heart block, your heart rate can drop to 30 and you could lose consciousness. You or someone else could be seriously injured or killed. 

I think many of us have worked through pain, frustration and a lack of trust in providers. But it gets better. 

A few more questions please

by Gemita - 2021-04-17 05:02:18

Since you are telling us that you were feeling fine (?presumably without symptoms) prior to your procedure, why did you end up in hospital needing a pacemaker?  First degree AV Block for example may not cause symptoms, but 3rd degree AV block certainly would.  Something must have happened for you to be taken to hospital, or for you to have taken yourself to hospital?  

You also say you have gone into block a few times in the past but it never led to anything?  How did you know you went into AV block in the past?  Did you get symptoms?  What led your doctors to investigate for AV Block?  I am assuming something must have happened.  

As you weren't feeling ill before your procedure, I would not expect you to be feeling better after your procedure.  Something isn't quite right with your post or the reason for your pacemaker.  Forgive me if I have misunderstood your message, but that is how it is coming across.

Some folks have intermittent complete block but they would certainly know about it and it would only take seconds to cause real harm to the sufferer and others around him/her, especially if out driving and you lost consciousness.   Intermittent blocks of all degrees can be difficult to diagnose sometimes, but usually something happens (like dizziness, breathlessness, fainting, extreme fatigue, palpitations) for an electrical disturbance like a block to come to light or to need investigating.

Yes I would certainly want clarity on the diagnosis.  In my opinion, you perhaps need a second opinion and a confirmed diagnosis before you start considering the removal of your pacemaker/leads.  It is premature to be thinking about this at the moment since patients with third degree heart block, if confirmed, may be at risk of sudden cardiac death without a pacemaker to protect them.  I would also ask your new cardiologist if there could be a reversible cause for any heart block you may have, like for instance due to any medication you may be taking or any infection/inflammatory condition present.  Did you have any investigations before the pacemaker was implanted?  Sometimes no cause can be found.

After any procedure involving the heart, your points 1-5 can be normal.  I would discuss any worrying new symptoms with your new cardiologist, so that these can be investigated too if they continue.  I wish you well

Hang in there

by TLee - 2021-04-17 14:40:48

Four days is a very short time to try to evaluate your post-pacemaker condition. I know, because when I first got mine, I felt just awful & really questioned my decision to have the procedure. I didn't have every symptom that you describe, but I think most can be explained as pain this soon after surgery, reaction to anesthesia, even anxiety.  For me, I was in pain, which is certainly not pleasant. The pain from the incision started to go away after 3 or 4 days, but soreness, swelling, pulling at the site was there for a long time. Truthfully, 3 months in, I still feel tingling & stinging sensations as things continue to heal internally. I also have atrial fibrulation, an arrythmia that is not addressed by the pacemaker, and that went crazy just after the insertion, with dizziness, fatigue, shortness of breath much worse than I had experienced previously. This was no doubt due to the physical trauma involved in even a minor surgical procedure, as well as the anxiety that I was feeling. I was pretty unhappy, and although I would not have considered having the device removed, I did wonder if the whole thing had been necessary, whether my doctor really knew what he was doing--and I felt really angry about the whole thing. I think my turn-around began when, with the pacemaker to prevent my heart rate from slowing too much, I was able to start on a different medication. I felt better almost from the day I made the change. I even forgave my doctor & had to admit that there was a method behind the madness! It's too early to say I feel 100% better, as I'm sure there will be more medication adjustments as well as pacemaker adjustments (I have my first device check next month). It can be a long process, and can defintely start out rocky--I felt a lack of support from my medical team at the beginning as well, but I think I was expecting things to happen too quickly. I would say hang in there, don't worry too much & be patient, although certainly call your docotr if you feel you need to. 

helps on the way

by athena123 - 2021-04-17 15:29:27

I felt the same way a couple years ago when i recieved mine. My suggestion would be to find a EP DOCTOR one who an expert of the hearts electrical functions to give yiou a proper diagnosis. Remember, the cardiologist are the plumbers while the EP are the electricians. Good luck

I am in your same boat

by Rosenberger5 - 2021-04-17 23:16:41

I just had my pacemaker put in seven days ago. Listening to you share your story made me think you typed for me. It is exactly what I am experiencing. I question  every pain and whether I even needed this device since I was feeling fine before. Up until this pacemaker I walked 3.5 miles every day including weights for an hour at the gym. This came as a big shock to me and mentally I am still adjusting since I can't walk or exercise for now. I know that is not helping the situation. I am not sure what I expected, but they tell me it will get better. 
Today I went to church for the first time since surgery and started to sing. Apparently my pacemaker didn't like my vocal cords singing so it caused pain  in my back and changed my voice. It was awful. Then it caused me to start coughing. When I tried to talk I had a raspy voice. I stopped singing and just listened.  I love to sing., so Hopefully, this will go away. Nobody warned me that this would be an issue.  Deep down I know I needed this pacemaker, it is just an adjustment. Praying it happens soon. Hang in there. You are not alone. 
 

Thank you

by Rosenberger5 - 2021-04-17 23:19:49

Julros

 Thank you for explaining the muscle twitching. There are times I feel as though my pacer is working full time. Your explanation put  my mind at ease. Thank you again. 

Rushed into surgery

by PastorMcMaliburton - 2021-04-18 20:46:09

Hi, I can relate, I’m 10 days into my PM. It felt very rushed and only had a very brief 5 minute consult with the electrophysiologist prior to surgery. To him there was no question of not getting a PM. I would’ve wanted more education, more alternatives, anything. Even since, getting ahold of his office has been difficult; I still don’t have a printout of physical restrictions and I’m scheduled to go back to work mid-week. It’s only my Covid 10 day pay that has me off now. I’m calling tomorrow. Also, looking for a new job because I work at a moving company. It’s like they expect me to go right back to work, lol.

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