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:-




by Gemita - 2021-09-20 17:50:40

The survey count now stands at 84


by prettylady - 2021-09-23 11:14:28

cannot access link

Thank you for trying again

by Gemita - 2021-09-23 11:44:15

Dear Prettylady,

So sorry you are still having difficulties.  As I mentioned in a previous message there has to my knowledge only been one other member who reported having the same problem, otherwise I believe the 84 respondents so far have had no difficulty accessing the link (provided again above).

As I mentioned before, it is important that the link is pasted into the https main upper search bar not a lower general search bar.  Don't know what else I can suggest other than sending you all the questions by private message, you answering them and then trusting me to complete the survey anonymously and confidentially on your behalf which I am more than happy to do?

Several members kindly tried the link extensively for me using different computers, browsers and search engines and the link seemed to work well, although clearly not for everyone.  


by prettylady - 2021-09-24 20:50:18

just finished survey. thank you for telling me how to do it


by Jerry10 - 2021-09-27 20:59:57

Thanks for doing this, but when I go to the link the only option is to take the survey. Where can I find the results? (Going in for surgery in 3 days...)



by Gemita - 2021-09-27 23:12:22


As I mentioned in my message attaching the link, once we have reached the magic figure of around 300 responses to make it a meaningful survey study, the data will be analysed carefully and results published as soon as possible thereafter. The member responsible for collecting the data will not begin this process until then.  Responses are still coming in Jerry but hopefully by end of this year we should have sufficient responses to make it worth our while to try to get the results published here and in a cardiology journal - I know too late for you to benefit before your implant.

Most members find they have various pain symptoms immediately after implant with achy/throbbing sensation near device described as being the main symptom but simple pain relief usually helps.  However many members experience few if any troublesome symptoms after a few days and especially after the healing period (at around six weeks) has passed. 

If you have any questions or concerns about your upcoming implant procedure, you can either post a new message on this forum or private message me and I will try to help, but please don't look for problems.  I had my implant at 69 years of age and was up and active the very next day.  The procedure is regarded as minimally invasive and low risk in experienced hands.  I had pain symptoms for longer than is usual due to a pre existing condition known as Complex Regional Pain syndrome but this was managed with a neuropathic pain med.  You will probably sail through the procedure since most do.  Good luck 

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