Body Image

Hello! I have recently had my first replacement surgery to fit a dual lead pm and the box seems extremely visible which i'm really disappointed about. I wasn't told this would be the case prior to surgery (my previous pm was under the muscle and entirely non-visible - except the scar) so i'm finding it a bit upsetting and hard to accept.

I have discussed this with my pm tech but I live in Scotland and everything is on the NHS so it's not something they will change for aesthetic reasons. This means even if i say i don't want the pm over the muscle next time, i'll still be waiting 10 years until my next replacement.

I'm wondering if anybody has experienced similar and how you came to terms with accepting your new cyborg look? I don't mind the scars much, it's just the hard lump of metal on my chest that does not look or feel like a part of me. It's really knocked my confidence and i'm struggling a lot to feel good about my body image. 

Let me know if you sympathise or have any pacemaker body image stories of your own. Thanks and hope everyone is keeping well in these strange times! 


7 Comments

This really isn't good enough

by crustyg - 2020-10-27 13:55:13

Oh Eva, my heart goes out to you.  This really isn't good enough, and I can understand how upset you must feel, and the implied insult 'just another PM box replacement, don't care about where it goes.'

But emotion aside, there *might* be a reason why it was done this way.  Before you start writing a letter of formal complaint, check a) your consent form, b) any information that was provided at the end of the procedure.  There are *some* occasions where it becomes very difficult to reuse the same PM pocket as last time.  It seems almost certain that you were under conscious sedation (or even a GA) for the procedure as I think you'd have noticed them creating another pocket if it had been done under local.

Make a formal request for your recent health care records under the Access to Health Care Records Act 1990 (if this doesn't apply to Scotland there's *probably* an equivalent for you).

I think I would write a formal letter to my EP doc asking why the existing PM pocket wasn't reused for the new PM box, and depending on the answer (and my Consent form), *then* I'd write a formal complaint to the hospital who did this.

There are lots of ladies here who find their PM's more or less noticeable, especially after a box change.  They *may* be able to help, but a lot does depend on just how visible it is - don't forget that there will be swelling around the new pocket for a couple of weeks.  TAKE PHOTOGRAPHS of the new box - especially once all of the dressings are off - you may need them.  Ultimately you may need to seek a lawyer who specialises in clinical negligence/personal injury work and, if successful, you might be able to get your box moved.  You have to ask yourself if you would go through another procedure just for this.

I'm so sorry that you've had this happen to you - it doesn't seem right to me.

visible box

by Selwyn - 2020-10-27 16:44:30

Hi again Eva.

What a mess up! This should have been discussed with you prior to your surgery.  Even as a left hander I was given the choice as to left or right sides. I chose the right, and then at the last minute in theatre changed my mind and they had to turn all the equipment and technology around . Men!

As crustyg says, you should have a look at the consent form ( you will have a copy) aspects of the surgery should have been discussed including where the box was to be sited ( some can have a site so that it is not visible at the upper front of the chest). I can absolutely sympathise, my box is clearly visible ( as a swimmer), though I am not bothered and only rarely has anyone asked what it is. 

I think the best policy is to first explain to your GP as to how upset you are about the box placement and enlist his/her support, if possible,  to arrange a meeting with the consultant ( not a junior) about how best to fix the problem.  If you cannot get the support of your GP, you can write a letter ( or email)  to your consultant explaining the problem and request a face to face consultation. A formal complaint should be a last resort, and even before that, I would enlist the support of PALS ( Patient Advisory Liaison Service) for the hospital concerned, as they have  good communications with the departments and will act on your behalf. 

It may be that someone has just been thoughtless, or it may be that as you have grown the leads were too short, who knows?  Best to first try to meet and understand what the problems are, and then how to fix. 

I would be interested in the outcome and process. By all means private message me if I can be of help as I have some experience of the NHS workings.

 

 

 

 

 

Body Image

by Aberdeen - 2020-10-27 17:56:18

I understand how you feel! I had a CRT pacemaker implanted in May. When I saw it I was horrified at how much was visible.       A few months later it looked much better and less obvious,( A CRT pacemaker is bigger than a dual lead pacemaker)It may look better in a few months.

Good luck!

Beauty is what you feel about yourself not about what you see in the mirror

by Gemita - 2020-10-27 19:03:11

Dear Eva,

I am so sorry to hear you are distressed with the appearance of your pacemaker.  At your age, I can completely understand your disappointment and difficulty in coming to terms with this.  I would just like to say that despite what has happened, you are still the same person on the inside, but hopefully a stronger one, better able to face the future now that you have your new device.

My dual chamber pacemaker is also prominent because my skin is so fragile where it was placed.  I am small boned and my device is clearly visible close to my collarbone, near my left armpit.  My device is also surrounded by a large network of purple veins due apparently subclavian vein trauma during lead placement, although blood flow is no longer obstructed due to this collateral vein formation.  My chest has taken on a whole new appearance that I am slowly coming to terms with.  I use occasional padding to cushion any discomfort from bra straps, but generally after two plus years, this is no longer needed.  Perhaps because I am older and wiser now, comfort and well being is more important than how I look.   Without feeling well on the inside, I can never hope to look my best on the outside.  The first priority of my doctors during implant procedure was my overall safety and to focus on a good position for my device and leads so that pacing would be successful.  I believe they achieved this but at some cost.

How is your pacing Eva?  Is it improved and do you feel better?  Is your pacemaker comfortable?  Perhaps it is too soon to tell.   Those would be my first concerns above everything else.  Whether you want to seek advice about all of this is very much in your hands but if your pacemaker is working well and doing a good job, feels reasonably comfortable, would you really want to risk any further intervention?  What I would do however is to place firmly on record your extreme disappointment with the quality of care you have received and your hope that in the future you will be offered more detailed discussions on where to place any new device. I certainly wouldn’t let this go without recording your distress so that they will be aware of your wishes in the future.

In the meantime, get to know your pacemaker and what it can do for you.   It is your friend, not your enemy.  It will help you to enjoy a better quality of life.  If you need psychological support, speak to your doctors and get professional help, or join pacemaker groups in the hospital and community or set one up with Zoom.  Try to talk about how you feel to your friends and family.  Get it out in the open.  You are not alone and we are all here when you need to chat.  You will find a way through this and you have already taken the first step.  

how long has it been?

by Tracey_E - 2020-10-29 10:43:56

I'm so sorry you are dealing with this! I had one moved on replacement (#5) without them telling me also and I'm still mad about it 6 years later. I was told it was because of scar tissue, that the old one was stuck and they had a lot of trouble getting it out. I can tell you from personal experience that how it looks 6 months or a year late is TOTALLY different than how it looks the first weeks/months. It can settle in to look and feel a lot better than it does now. 

Not sure this helps, but . . .

by MakeAmericaPaceAgain - 2020-10-31 19:15:44

Hi Eva, So sorry you are having this problem. I had my first PM implanted Aug.  25, 2020 and had the atrial lead revised on Sept. 28 due to a micro dislodgment. The revision involved taking the generator     box out completely and then the EP used a catheter to move the passively-fixed Medtronic tined lead into a place on heart wall where it (crossed-fingers) is now fixated. After this revision mess - the lead was never afixed to heart wall but EP tried to blame me for discontinuing sling after two weeks - when my Fitbit shows my HB never went above low 40's until after revision (am trying to get a Medtronic tech to interrogate to find when lead actually failed - transmission box from Medtronic didn't come until 3 weeks after PM surgery). 

After revision I sat in bed for two weeks not moving a muscle except to look up research on PMs and revisions. What is clear from several studies is that the risk of someday contracting endocarditis tripled with the revision/removal f/ PM pocket - so soon after implantation. But the risk of endocarditis (which carries > 30% mortality) goes up every time the pocket is moved. 

My PM jutted into my armpit from initial implantation and hoped EP would move it more medically when doing revision - but, of course, he didn't. Am unhappy but not even thinking about a cosmetic revision w/ upped chance of endocarditis-even if it just adds another 1% to my now close to 3% chance of coming down with it and always having to worry about a fever - which I never did before. One safer alternative may be to talk to your EP about reimplanting your PM in an anti-bacterial pouch. Two companies have these on the market. I learned about them too late. I can get cites to Medical peer-reviewed papers if you like abt increased chances of endocarditis and about early promising results from the antibiotic pouches that help prevent vegetations from growing at PM pocket site and into atrium/ventricle/tri-cuspid valve. If a person gets that - then they've really got a problem. At least EP should give an IV antibiotics when going into the PM pocket - but some would disagree so as to not get resistance to Vacomycin, etc. All the best with your decision. Happy Halloween!

Thanks for your responses

by eva_rb - 2020-11-12 21:53:44

Thanks so much everyone for your kind responses and advice. I will certainly take on board your comments and i may update here if i do decide to make a complaint or anything, although i think likely i will just have to accept it.

Thanks again,  It really means a lot that you all took your time to comment support :)

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