Survey Link - Post procedure pain following Pacemaker/ICD implant

Dear Members,

As many of you will be aware from messages here, “post procedure pain” following Pacemaker/ICD implant is unfortunately all too common.   There appears however to be little in the way of studies done relating to this, other than individual case reports, whereas “complication rates” following pacemaker/ICD implant has been more widely reported and studied.

Over recent months, several members of the Pacemaker Club have expressed a wish to see a survey carried out on how many of us experience pain after pacemaker/ICD implant, the nature and extent of that pain and how it affects different age groups and gender.   

A survey has now been set up with the kind help of Club members and you may wish to have a glance at the questions by going to the SurveyPlanet link below.   Your participation in this survey is entirely voluntary and should you decide to participate, I would like to reassure you that the survey is confidential and will not be used for marketing purposes.  The survey will be used solely to help with our understanding of the extent and frequency of post procedure pain and to help improve patient outcomes following implant.  The data will be collected safely and confidentially by a trusted member of the Pacemaker Club who has experience in this area.  The survey results will be analysed carefully and reported as soon as possible.

To achieve an unbiased survey result, we would encourage all members interested in participating, to complete the survey irrespective of whether or not they experienced post procedure implant pain.  Clearly some members will not have experienced significant pain, or developed troublesome symptoms following pacemaker/ICD implant and this needs to be reflected in the survey too.

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 should help us to understand the complex range of symptoms many of us may experience post implant and how we might best manage these, since most of us will expect to go through several battery/lead changes in our lifetime.

I realise we have a current Poll still running on “post procedure pain” and thank you all for your contributions.  I have been advised polls on the Pacemaker Club only allow for a single question and prearranged answers.  Our new survey will give us additional valuable information and if you wish to participate and can spare about 5 mins of your time, that would be greatly appreciated. 

I will continue to “re-post” this message from time to time so that members who visit the Club infrequently will not miss this message.  I apologise in advance for my persistent, unwelcome intrusion on your message board and I thank you for all your patience and help with this. 

The survey link is:-

https://s.surveyplanet.com/bS5tNLhNq

Gemita


11 Comments

Thank you

by Julros - 2021-07-09 22:53:27

Thank you Gemita for setting up this survey, although I doubt it will be accepted by a scholarly journal. I feel this issue is vastly under-reported and needs to be addressed. Perhaps some enterprising graduate student will pick up the cause and write a thesis on it. 

Woohoooo! Yeah for academics!

by asully - 2021-07-10 01:34:29

Thanks Gemita!

This is the kind of thing that leads to progress!  Thank you for setting it up, and thank you to anyone else who is involved.

Thanks, Gemita

by Marybird - 2021-07-10 13:33:15

For taking the time and the interest in doing this. Just perusing various thoughts about pain, it seems to me that the medical community is interested in pain, from the perspective of managing it to minimize the pain/discomfort, or as it's linked to symptoms in various illnesses and conditions that can be useful in the diagnosis of disease or conditions.

And they allude to post-procedure or surgical pain as a given, but I've never seen any reference to the type or degree of pain in reference to specific surgeries or interventions, perhaps that's because the perception of pain is so subjective, varying from one individual to the next. Though pain levels and types of pain could also vary depending on what else was happening there physiologically ( like infection, excess trauma, injured tissue, nerves, disruption of normal function, etc) that wouldn't be the same for everyone, It'll be interesting to see how people respond to this survey about a specific procedure. 

I answered the one answer query about post implant pain, referencing the worst pain I felt, which was in the hospital about 2-3 hours after the procedure, once the local pain block had worn off. That was an intense throbbing ache from the site up into my shoulder, arm and jaw- felt like a horrible toothache. But it was relieved by extra- strength acetominophen, and the pain was very mild to nonexistent after that. 

Pain after implant

by Selwyn - 2021-07-10 13:36:55

At last, an opportunity to explore just what is reality!

I will certainly be doing the survey.

Thanks Gemita

Pain symptoms

by Gemita - 2021-07-10 17:14:48

Thank you Julros, ASully, Marybird and Selwyn.  We couldn’t put together a survey without valuable support from members like yourselves and from the many members who have written posts over several years, of their personal fight with pain.  We all deserve this opportunity of telling our story and I believe the survey will help us to achieve this.

I too would like a bit more understanding and acknowledgement sometimes that post procedure pain following a bread and butter procedure for the surgeon like an implant, or change of device, can actually cause some of us a great deal more discomfort or pain than we were led to believe.  If the survey produces nothing else, I hope it brings us all together on this subject and helps members to realise that they need to speak up when their pain continues beyond the expected healing period.  There are many treatments out there which can be tried and just knowing that there is someone who will listen - and believe - can make all the difference to the outcome.  

You all make some valuable points, as always, and I too look forward to the results of the survey.  Pain is such a personal experience.  It isn’t just physical. Chronic pain clearly affects the body, but it also affects emotions, relationships, and the mind. It can cause anxiety and depression which, in turn, can make pain worse.   I almost feel that these personal stories of intense throbbing and pain going up into shoulder, arm and jaw would sometimes be hard to believe.  The fact that so many of us have experienced similar symptoms very much supports my belief that these pain symptoms are common to many and are not self inflicted or caused by other conditions.  

Pain management

by AgentX86 - 2021-07-10 21:30:29

Unfortunately, the US government is actively working against the doctors in pain management.  Some doctors are scared of being accused of inapropriate dispensing of narcotic drugs.  Decent doctors would just tell the feds to pound salt but some are intimidated.  How many here report severe pain and are told to just suck it up. To be fair, there was a lot of abuse and something had to be done.  Good records should be able to dispell any such abuse.

Off on another track, ISTM that feeling of pain, tolerance, or perhaps even the perception of pain varies widely from person to person.  I don't think it's all the particular damage done during surgery.  I was talking to my (much) older brother, telling him that I had very little pain, post implant.  He mentioned that our mother had a very high pain tolerance, too.  I think there is a lot of room here for academic inquiry.

Only just seen this

by quikjraw - 2021-07-12 05:13:57

Hi Therese,

I will complete that survey today.

Well done for setting it up.

I hope you are well

John

survey

by new to pace.... - 2021-07-12 09:34:07

Thanks for doing this.  Just took the survey also included my reaction to the surgical glue.

new to pace

Survey

by Gemita - 2021-07-12 12:58:28

Thank you John and new to pace.  I am grateful to you both for your help.  Not anyone's favourite occupation completing a survey, but they can be extremely valuable if we ask the right questions and receive a balanced response.  

AgentX is spot on about the US approach to pain.

by asully - 2021-07-13 02:40:09

They have completely overcorected in the US unfortunately.  Doctors here got sued and lost liscences for "overprescribing" now everyone is scared.  It didn't solve or opioid problem either because addicts will always find a different way to get their fix (hence the rise in heroin and street fentanyl use in the US).  When I had my last sternotomy my surgeon tried to "encourage" me with tales of patients using only Tylenol post sternotomy and "surviving".  This cracked me up because yes a person can certainly survive without adequate pain control, but aren't they needlessly suffering?

Pain management is such a complex and difficult topic.  Everyone's expierience is different!  I would LOVE for there to be some new solutions, maybe technology or pharmacology.

Hint to pacemaker designers: make them smaller and add some cushion! Lol!

Pain relief

by Gemita - 2021-07-13 04:24:38

Yes I am not suggesting Opioids or other pain relief should be freely given but I am suggesting that the starting point should always be an understanding and acknowledgement that the patient has a problem that needs addressing. There are many ways of helping with acute/chronic pain from specific therapies like exercise therapy to talking therapy like CBT or mindfulness and yes even medication for short term relief while the pain is intense.  Also consider referral to a pain consultant who will have a tool cupboard full of ideas and remedies and look at targeting the specific area involved (muscles, nerves, joints, bones, lymphatic, vascular system for example), rather than issue the patient with a non specific medication like paracetamol.  

Specific pain relief targeting the type of pain, for example neuropathic or inflammatory pain medication, for a short period can often be highly effective.  Also consider nerve blocks and even a nerve stimulation implant for intractable pain to help patient live with their symptoms.  Recently we had a member who wrote of her immense success with the latter.  All options should be on the table where pain is difficult to treat. 

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