Post-op pain

Recovery pain

by AgentX86 - 2022-07-24 00:56:13

Recovery is all over the map.  Some feel virtually nothing while others have a very hard time.  Some get opioids to help,  some not.  I didn't need them so have a good stash of good stuff (actually, those I turned in to the opioid collection service).

You will probably find it painful to sleep in the bed for a while.  Some use pillows to keep them from rolling over on it.  Others have different stratagies.  I just slept in a recliner for a couple of months (a few weeks would have been enough).

I find it amazing that people aren't given a chance to ask questions, before or after, and are too often turned loose with no instructions at all.

Post Op

by Marybird - 2022-07-24 09:07:05

Agent, I find that a bit concerning too, of the number of people whose pre and post- pacemaker implant experience seems to be  a "wham bam, thank you ma'am" experience that leaves them not knowing which end is up. That's got to contribute to the post-surgery anxiety, and it sure can make things look lots worse than they are- just not knowing what to expect. 

I recall my pacemaker implant site looked to me like a battlefield for a while after the surgery. Swollen, somewhat bruised, and I thought that scar would look like something on Frankenstein's head- great EP but not much of a seamstress, I thought. But I was reassured that everything looked good, the swelling would go down, at my 5 day wound check with the EP's nurse. And now you can hardly see that scar. 

Maisy, hopefully you have a wound check scheduled with your doctor within a week or so after the implant? They can check things out, answer your questions, and address any concerns you have.

I was also fortunate in that I was able to control my post op pain with extra strength acetominophen, no narcotics needed. I recall for approximately 6 weeks or so I could only sleep on my back, it hurt to sleep on either side. I found I got decent sleep at night with the help of acetominophen PM during that time. 

Winging it

by Lavender - 2022-07-24 09:34:57

Yep to what Agent said-I left the hospital the morning after the pacemaker-CRT-P device was implanted with two pieces of paper. One was a generic "call the doc" sort of paper "if you have complications". Another paper said take 650 mg Tylenol every four hours for pain. That's it. 🙄
 

I got home and typed in "pacemaker " on my browser. I found this site and read on it for 17 months-learning all I needed to know to reassure me. 🥲
 

I had minimal pain but I did have neck pain, it felt too full or swollen/strained if I leaned over, I couldn't sleep for fear of raising my hand above my head.  I ended up using a 10"x13" pillow which I put on the pacemaker and then leaned into it to my right side, cushioning it with another long body pillow between my legs. I velcro'd the sling strap wrist to waist while sleeping the first couple nights, but took the sling off during the day. 
 

I did feel "ant bites" as stated in the pacemaker site. The surgery area looked like a raised red thick rope. My left arm felt crampy. I was not happy to see a blue road map of veins surrounding the pacemaker and running into my armpit. Washing my hair and body with one hand was a challenge as I sat in the tub keeping the surgery area dry. 
 

I was very troubled by what felt like a racing heart and anxiety. My heart used to be so slow and now with a normal rate, it seemed like it was pounding like I had drank a pot of coffee.  It was partly due to them turning it up til the leads get better attached by fibers in there. At the one month check, the rate was adjusted and whew-I felt better. 
 

But I made it. So will you. In time there were less days of neck and shoulder tension, I was soon able to shower, and the ant bite feeling diminished and then disappeared. My scar-if anyone asks to see-I have to search for it. It's a thin white line under two inches long. I wear v neck tops etc and no one would know there's a computer in me keeping me alive. 
 

For me, it's almost 18 months since my surgery, and I'm not thinking much about the device in me.  I went through all the mourning stages of it:

denial, anger, sadness, bargaining, and finally acceptance. 
 

The morning after the surgery, my pcp said to name my pacemaker and embrace having it. He suggested names. I didn't think it was funny. 😠I resented having it. I wanted it removed. Now, I am glad it's there. I would be dead without it.
I am a Christian and believe in the resurrection and I do not fear death-but I also am a mom and grandmother and want to be here for my kids and grands. They need my emotional support and encouragement.  So, ok, I accept the dang battery that keeps me on the right side of the dirt. 🥹

To balance things out-a lot of people are not bothered much by having the pacemaker surgery. Some go to work very quickly, as Agent did. It's very individualized. 

post implant pain

by Gemita - 2022-07-24 10:58:34

Hello Maisy,

I think many of us can relate to your experience.  I certainly can.

Unfortunately post implant pain following pacemaker and/or ICD implant is more common than we are first led to believe.  In the last year we completed a Survey from members of the Pacemaker Club and two Facebook Pacemaker/ICD groups, to assess patient experience of pain.  I attach the link below giving results.  You will need to copy and paste the link into your general browser to open.  You will see a high number of respondents experienced pain and almost a quarter of those replying experienced pain for over two months.  

I hope you will find the link of interest since it gives details of things like the character of the pain (sharp, dull, burning, aching, tingling, sore) for which the majority of patients were only generally advised to take simple pain relief which clearly wasn’t always adequate.  The Survey indicates the need for better medical education and communication, for better information to be given to patients.  As one patient stated:

“I found the literature about pacemakers misleading, as they said most people are fine after a day and back to work in a week.  My boss expected this too.  But I was uncomfortable, tired and emotional, and felt a failure for not being back to normal in a week as suggested.  More realistic info needed”.

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

Survey ... Post-implant pain

by IAN MC - 2022-07-24 11:31:43

YES BUT .......  I think it is worth stating that the majority of survey respondents  experienced either very mild, or absolutely no pain following PM implant.

In  the grand scheme of things having a PM installed  is a minor procedure and post-operative pain is minimal for most people. I would hate nervous first-timers who may be reading this to think otherwise.

Ian

I was mad!

by TLee - 2022-07-24 12:06:14

I felt some pain, some other unpleasant symptoms, but the main thing I felt was anger! It started DURING the implant, when the "happy juice" wasn't enough to keep me from feeling pain. I told them, and they just said they were "almost done". Then, it seemed to me that I was rushed out the door as soon as I was semi-steady on my feet (also with very little information). I found this site, as others have, by trying to find out why I felt so bad & whether it was normal. It was a relief to find that it is normal for many people, and that it does get MUCH better with time. I think that people saying it is a minor procedure, practically pain-free, and you feel better immediately just makes those of us who don't feel that way think we must be wimps. I think we should be told: It MAY be painful,and recovery may take a while, but you'll feel better eventually. Kind of like childbirth!

I would hate nervous first-timers...

by AgentX86 - 2022-07-24 18:21:33

That is an excellent point, Ian.  I try to assure people that there may be little/no pain but there could also be a great deal, or anywhere between.  We're all different.

That said, the club is also composed of two sorts of people, those with some amount of experience, trying to help others and those seeking help (duh!).  The latter group tend to be people who are having the most trouble so there is a tilt towards problems.  If they weren't having trouble, they probably wouldn't have sought help.

Amazing

by AgentX86 - 2022-07-24 18:32:53

I find the lack of support reported here amazing because my experience was exactly the opposite.  I'd talked at length with my EP about the surgery ahead of time (some can't because it's an emergency). 

After, several  NP and  PAs came by to tell me about wound care, what to expect from being paced, restrictions, and the whole deal. 

Every time I went back, including the wound check, I saw my EP and we talked for some time (more than "hi, how are you doing") about ongoing restrictions and what to/not do. I'm not sure why but my doctors seem to have a lot more time with patients than others have reported here. Maybe it's because it's a large teaching hospital (with a huge endowment from Coke). OTOH one of the other cross-town hospitals did my wrist surgery and the same deal there.

I find the lack of support reported here amazing

by Persephone - 2022-07-24 18:52:52

But, but, but... my attending EP in CCU post-implant looked at me with big concerned eyes and offered "there is a lot of swelling". Then I was sent home with a piece of paper with instructions. This is a world-renowned health care provider (Johns Hopkins). Yes, things are broken.

Glad you all are here

by traceintime - 2022-07-24 21:43:38

I go in tomorrow for my pacemaker and realuzed how little I know and what to really expect so I got online & I found this site.I feel better having read comments. I felt ill prepared and I was right to feel that way. Thank you. 

Glad

by AgentX86 - 2022-07-24 22:07:13

Trace, Welcome to the club!  WIsh you could be somewhere else but welcome to have you anyway.  Let us know if you have questions or if there is anything we can help you with. There is a lot of experience here, both with great and immediate outcomes, some who've had a bit more trouble, and all shades between.

IAN MC

by Gemita - 2022-07-25 09:02:52

Ian, of course you are right to point out that most people do not experience major symptoms following pacemaker implant and that on the whole it is a safe, minor procedure.  I hope therefore first-timers who may be reading this will be reassured.  

It has to be said though that there are still members of this Club and other Support groups who really didn’t know what to expect following their procedure, and who clearly didn’t expect to feel so much pain, or to be left without adequate pain relief.  The fact that this is still going on tells me that this needs to be managed better.  It is well time that difficult pain symptoms for some is fully acknowledged by the medical profession and the manufacturer alike, so that we can improve patient care for all, not just the majority who sail through their procedures.  I hope therefore our Survey has helped to start a discussion if nothing else and to get the support that some of us may need

traceintime

by Gemita - 2022-07-25 09:08:37

Yes welcome to the Club.  Please drop in again and let us know how your procedure went?  I hope they have made you comfortable and will only discharge you from hospital after giving you full instructions on wound care and pain relief if you need it.  Good luck

Gemita

by IAN MC - 2022-07-25 10:57:17

I am having  a replacement PM fitted on Friday so will be able to give fresh feedback on pain levels ( if any ) following the replacement procedure.

I certainly didn't experience any significant discomfort when I had PM no. 1 installed 11 years ago. Famous last words !

Ian

IAN MC

by Gemita - 2022-07-25 12:19:28

Ian, that is good news and I hope all goes well for you.  Please do report back and let us know which brand of pacemaker you finally receive.  11 years of service has been excellent.  I hope mine lasts that long.

Of course we cannot perhaps directly compare a complete, first time implant of Pacemaker system (leads + device) with a replacement device only at battery depletion, but nonetheless it will be helpful to know the level of pain, if any, you experience.  Yes hopefully it will be minimal.

My pain was mainly caused by lead insertion into the axillary/subclavian vein.  The pocket area itself was only mildly swollen and uncomfortable.

Good luck Ian

Pain meds

by AgentX86 - 2022-07-25 22:56:17

Much of the differences in pain med use in the US is a reluctance of doctors to prescribe narcotics because of some very bad actors in the recent past. Many doctors prescribed so many that a good number of patients got hooked. The government now keeps a thumb on doctors and investigates each for procedures and number "requiring" meds.  Some care, others don't and do what's right for the patient and worry about the feds later. Mine, of all stripes, have been very loose with narcotics. Certainly looser than I've needed.

Doctors dealing with chronic pain are really in a pickle. Its often tough to prove that someone is in pain so these doctors are constantly under a microscope.

Helpful ideas

by Lavender - 2022-07-26 00:42:27

In addition to telling you what symptoms we had after surgery, I think we should also tell what we did to alleviate discomfort:

-I cannot take most meds so it's Tylenol for me, but keep in mind that for some folks , like me, Tylenol can also cause insomnia! I rarely take it but when I do, it's before noon so I can sleep at night.

-I have also learned to use ice or heat on pain-alternating 20 minutes on/one hour break then another 20 minutes. Ice pack one time then heating pad-preferably a moist heat. Cushion the ice pack with a towel on your skin underneath the ice pack.

-Prayer, thankfulness, gratitude 

-I listen to calming music or meditation each day to relax my mind. Here're a couple favorites to copy and paste in your browser :

https://m.youtube.com/watch?v=SZ1LNrvu03M

And:

https://m.youtube.com/watch?v=rrrcthMB7mg
 

-I see a licensed massage therapist twice a month to loosen up my left arm and shoulder which seems to get tight ever since my device was implanted. 

-Herbal teas like chamomile or other sleepy time types

-Outdoor time relaxing in a hammock (wearing sunscreen and sunglasses) watching cloud formations

-Tub baths, being careful not to wet the incision area Being clean and putting on fresh relaxing clothing is a comfort. Lavender (my favorite scent) linen spray-make your own with rubbing alcohol, a bit of water and a few drops of lavender oil or lemongrass oil, too. 

-Walk outdoors. 

-Drink more water. 

Be gentle with yourself and treat yourself well. A positive attitude goes a long way in healing. 
 

Self affirmations like

-I can do this, I've bounced back before from other challenges 

-All will be well

-I'm not thinking of tomorrow, only this minute 

-I am blessed

-I am loved

-I matter