Survey results post pacemaker/ICD implant pain

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by new to pace.... - 2022-02-15 08:58:58

thanks for all your work on this.

tried to copy and paste.  then put in all by hand came up something was wrong.

am unable to open link.

new to pace

dropbox link

by Gemita - 2022-02-15 09:07:24

new to pace, well that was a good start.  I will have a look at the link and get back to you as quickly as I can, or send the .pdf by email.   In the meantime, anyone else having difficulties opening the link?  It is working okay for me

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by Gotrhythm - 2022-02-15 10:32:01

Didn't work for me.

Gotrhythm

by Gemita - 2022-02-15 11:03:35

Thank you for letting me know of your difficulties viewing the report.  We need to physically copy and paste the link into our main browser.  It won't work otherwise. 

Perhaps the Club's software does not allow us to post 'active' links which we can just click on to open.   Links certainly never "enhance" to indicate that they are active.  We can only achieve this by copying and pasting into our general browser.  I have tried lots of different ways of getting this to open "automatically".   If  anyone has got any ideas how we can make this link "active" please advise?  Update:  Hyperlinks are disabled apparently on this site (for spam control) so we need to continue with copy and paste.

Gotrhythm, I will make sure you will see a copy of the Survey report in whatever way I can.

Survey results

by Julros - 2022-02-15 11:07:46

I copied and pasted into a new browser window and it worked fine. 

I have just done a quick perusal of the results and am somewhat surprised by the numbers. I am sorry so many had pain, but I do feel validated that my experience wasn't as unusual as my medical team acted. 

I do hope this can be brought to the attention of providers to do a better job of preparing patients and listening to their concerns. 

A remarkable piece of data gathering

by Gotrhythm - 2022-02-15 11:51:14

Kudos to all who worked on this study/poll. It couldn't have been easy pulling all the various replies into something that was intelligible.

Good work!

PS

It turns out if I highlighted the link, I didn't have to copy and paste. My magical little mouse offered me the option to open in another tab. That's what I did and voila!

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by AgentX86 - 2022-02-15 15:08:01

I use Firefox.  All I had to do is paint the link then <right-click> and select "open in new window".  Worked for me.

Survey

by Marybird - 2022-02-15 15:25:49

I did the same thing Agent mentioned, copying the link, right clicking on the options that popped up, to "open in a new link" which it did, and I was able to see it. I use Firefox also- with DuckDuckGo as the browser.

Lot of hard work involved in that survey, thanks Gemita and Selwyn for all your efforts.

Grateful for your technical expertise!

by Gemita - 2022-02-15 17:54:01

Thank you AgentX86 and Marybird for your technical assistance and I hope others will find your tips helpful if they get into trouble opening the link.  I certainly did.  Yes Mary the Survey has taken up a lot of time but if it can help patients to receive better understanding and care in the future, then it will have been so worthwhile.

Julros, you were the member who first suggested the idea of a Survey after saying it would be nice to know the numbers affected by post op pain, their age and gender.  Yes there are a surprising number of members who have been affected by pain lasting well over the expected acute period of 48 hours to 1 week.  I was surprised long term pain was not generally found to be associated with complication rates, so there was clearly something else going on.  I note anxiety states scored highly.  I too hope this can be brought to the attention of providers to do a better job of preparing patients and listening to their concerns.   

Gotrhythm, so pleased you managed to download the survey.  Whoever said we are too old to learn something new?  Now I need to master how to post an ‘active’ link on the Pacemaker Club.  There has to be a way to do this.  Yes sorting through the survey data was a massive time consuming task for Selwyn and the software left much to be desired at times, but I am happy with what we have achieved.

Some welcome comments from participants - thought I would share

by Gemita - 2022-02-16 15:59:40

"This is great info that i hope some Dr's will see and use. What I do not see here is info on the emotional side of a PM/ICD. A lot of people have severe emotional issues for 6 mos to a year or longer. I feel these issues are completely dismissed by medical professionals. A nurse once told me it happens when something touches your heart. I was not expecting it and was confused by what was happening to me that I was so emotional".

"Great report. Thank you. Now let’s hope a medical journal picks it up so clinicians can start to face the facts that getting a pacemaker IS a big deal and it is also more uncomfortable than they think it is".

"Really interesting, although as someone about to get my first ICD it was also a little frightening. I had been wondering this very thing, how much pain and how long is recovery. There’s a lot of conflicting advice, it seems like each website was different".    

"I think the biggest lesson that a new or soon-to-be new device recipient can take from this is to advocate for strong pain management. Make sure you get the pain meds you need to stay on top of the pain, and utilize methods to reduce pain, such as resting, and using ice packs to minimize swelling on the incision site.  Pain is certainly manageable. What I like about this study is that it highlights how poor pain management is right now and how the medical profession needs to do a better job of helping patients manage their post-implant pain"

Comments

by AgentX86 - 2022-02-16 19:48:25

I think you hit on something here Gemita, though perhaps through the side door.  Doctors aren't so understanding about the emotional end of the procedure because they know all about what's happening and it isn't a big deal, coming from that angle. It's a very logical process. 

OTOH, the majority of their patients have no idea what's going on, don't have the knowledge/information and haven't had time to process the information they have been given.  They can't see the intellectual side, so come at it from the emotional side. The doctor and patient are on different planets.

Prescription narcotics are a big deal, at least on this side of the great pond.  Doctors have gotten into deep yogurt for over-prescribing.  Some have even been criminally prosecuted. Big pharma has, rightly, been sued for $billions.  Doctors are under a magnifying glass. The government compares their use to others and flags unusual use, even though there may be good reason some  prescribe more than others. Many just don't want the hassle so won't prescribe them at all in "marginal" situations.

I haven't had much trouble, though they generally give me the script after I leave the hospital (too late). I've never had to take all of them or ,often, any. I'm glad they were there.  For my wrist, my surgeon even gave me an anti-nausea drug (intended to complement chemo)  with the Vicodin because narcotics don't sit well with some. I never had that problem.

Pacemaker Pain Survey

by Selwyn - 2022-02-17 08:22:43

Thanks Gemita for getting this onto the PM Club site. 

Cut and paste the link  into a fresh browser upper box is the way to get the .pdf for the survey. 

 Thank you to all those  (322 people) that took part. 

The  Pain survey highlights problems, perhaps from a select group of people (Are we normal?). Interestingly, there is no association with pain scores/duration of pain  between having an PM or ICD implant, and the same with gender. Females are as tough as males, or I should also say males are as tough as females!  Pain was not associated with anxiety/depression, though the reported rate (as limited by the survey choices) was higher than expected. 

Please keep the comments coming; all of them are of interest. Perhaps we can change things for the better?

Pain Medications

by Marybird - 2022-02-17 08:32:02

I think you've made an excellent point, Agent, about doctors and patients being on different planets in regards to  pacemaker/ICD placement, especially in the case of those patients who've had it "sprung" on them in an emergency setting with no time to prepare, or time to process the reality and their new norms. 

 I was offered a narcotic ( percocet, I think, maybe oxycodone) as one of the options for my immediate post implant pain in the hospital ( which for me, thankfully, was as bad as it got, it was much improved after that). I am one of those whose experience with codeine containing meds includes extreme nausea and tossing my cookies repeatedly, so I declined the "good stuff" and went for the extra strength tylenol, which worked beautifully to relieve my post surgery pain, and any discomfort after that. I consider myself very lucky with that. I'm presuming that had I chosen the narcotic after the pacemaker surgery the EP might have included a short prescription of same in my take home meds, but he didn't after I informed the nursing staff that tylenol extra strength did just fine.

My only other.fairly recent experience with pain meds was after I broke my wrist a couple years ago. I was offered oxycodone ( with an antinausea med) in the ER, took it gratefully, was sent home with a script for Tramadol, which I didn't get filled as my husband had a stash of the stuff he'd quit using. That didn't touch the broken wrist pain. 

When I had carpal tunnel surgery on that wrist a few months later, the ortho gave me a script for several days worth of oxycodone. It wasn't endoscopic surgery as they do for these sometimes, I think the guy must have used a rotor rooter to free that nerve from all the scar tissue from the injury,,so it was quite painful after the surgery. I used a few of those oxycodone pills ( not the maximum prescribed amount), and was able to stop those after a couple days. And I discovered these didn't make me nauseated either. Luckily I didn't need the entire prescription, but in that case I was glad to have it. 

Further comments from our respondents

by Gemita - 2022-02-17 14:42:16

"My ICD is necessary, no matter how much pain the implant may cause, but it does help if I know what to expect and the survey has given good information.  I am in pain every day due to rheumatological and neurological issues, adding any more pain seems to cause exponentially more… I just hope the doctors will understand and give me appropriate pain relief when they implant my ICD.  Tylenol and aspirin do nothing at all for me”.

“I do have a trauma specialist. It helps a lot. i do want to let people know about the trauma of getting a device.  Drs need to realize the post op mental health issues some of us get.  My EP is very good.  He tried to find me a therapist and understood i needed help”

“thank you for the opportunity to participate and for your follow up. It was great to read the survey results. Individual experiences are so diverse, yet, I still believe that most people do manage well. However if you are not part of the 'most people group', it can be very disconcerting.  I did feel from these results that I was one of the lucky ones. I was in such shock from diagnosis, all I could understand was 'Heart Failure' - my heart is failing, so I am going to die !! When offered a CRT-D, I said "Yes please, I'm not ready to die." I figured it would be my lifeline, so as millions have them, I would just deal with whatever, as surely the treatment can't be worse than this incurable, progressive illness”

AgentX86

by Gemita - 2022-02-17 15:33:09

Agent you are so right.  For our EPs, ICD/pacemaker implant is bread and butter work to correct an electrical disturbance and they cannot understand why some of us struggle to come to terms with our little devices or may suffer from post implant pain far in excess of that normally expected.  We all have different pain thresholds and expectations following implant and can so easily get disappointed with the results.  I know I did and felt I had made a big mistake initially (even though I needed a pacemaker) and this emotion made the post op pain even worse.  Our doctors are far too busy to cover the emotional aspect of having a pacemaker, although my EP did offer to refer me for mindfulness therapy (with an ex A&E consultant who had seen it all).  At first I felt insulted, as though my EP felt my fears/pain were of my own making but mindfulness proved a helpful experience for both pain relief and negative feelings.

Yes my experience here in the UK is that my doctors try to avoid Opioids because they are so addictive.  I love them but they tend to depress respiration so cannot take them anymore.  My neuropathic med Pregabalin helped with my post implant pain and hubby found Nefopam (non Opioid) suited him very well