Pacemaker Club - post Pacemaker/ICD Implant Pain Survey

Dear Members,

Over recent months, several members of the Pacemaker Club have expressed a wish to know how many of us experienced pain following implant of our devices, the nature and extent of that pain and how it affected different age groups and gender.   

A survey has now been set up with the kind help of Club members and the link to the survey is given below.  The survey is confidential and will not be used for marketing.  All members irrespective of whether or not they experienced post op pain, are welcome to participate, since this will help to provide a balanced, unbiased survey result.  The survey should take no more than 5 minutes to complete.  The survey data will be collected by a trusted member of the Pacemaker Club who has experience in this area and once we have received sufficient responses, the results will be analysed carefully and reported as soon as possible.

What is the purpose of the survey and what are we going to do with the results? 

If we can get sufficient numbers to participate in the survey to make it a worthwhile study (say around 300 members), it is our aim to try to get the results published in a well respected cardiology journal, so that these results are available to the medical profession.  Any paper accepted would have an acknowledgement to the Pacemaker Club.  Results of our survey will help us to better understand and acknowledge the complex range of pain and other symptoms many of us may experience post implant and how we might best manage these.  This will help to improve patient outcomes now and in the future, particularly since most of us will expect to go through several battery/lead changes in our lifetime. 

I will continue to “re-post” this message from time to time to try to reach as many members as possible.  I apologise in advance for my persistent, unwelcome intrusion on your “Most Recent Messages page” and I thank you for all your patience and help with this.

The survey link is:-

https://s.surveyplanet.com/bS5tNLhNq

Gemita

3 Comments

Update

by Gemita - 2021-10-19 14:18:25

We are now up to 95 responders for the survey. 

Can’t Remember the Details

by Shaun - 2021-10-20 20:26:26

I started off taking the survey but quickly realised I couldn't remember in any detail my post implant pain from 7 years ago when I received my pacemaker. I do however remember the "anxiety" that followed the implant which even now can catch me unawares when I least expect it, thankfully though that's not very often these days. All in all, I am very grateful because apart from some nights when the pacemaker moves into an uncomfortable location and stops me from sleeping I really don't have anything to complain about.

Thank you for your honest comment

by Gemita - 2021-10-21 03:34:09

Shaun,

I suppose not remembering the exact pain you experienced means that it was fairly insignificant.  However no pain, insignificant pain or other potential causes for pain are of interest.  I believe anxiety can heighten any pain symptoms, so your comments are certainly appropriate and valuable and I would want these included in the Survey.

I am assuming you did not complete the Survey which is a pity, since there was a box at the end for any "additional comments" and your comment on anxiety can be recorded there.  Some of the questions do not require answers if they are not relevant and allow us to click forward to the next question.  Some require answers like your age, biological sex, age at implant, but many of the questions allow us to move onto a question that is more relevant to us, in case you wish to try again?

You know you're wired when...

You fondly named your implanted buddy.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.