Pacemaker Surgery, Scars, and Ehlers-Danlos Syndrome

Hi all,

I'm two weeks post pacemaker implantation and generally healing up well. I'm curious if any of y'all have Ehlers-Danlos Syndrome (EDS) and how you managed your scar post surgery. 

If anyone need a brief: EDS is a hereditary connective tissue disorder. Some symptoms are skin hyperextensibility and loose joints, as well as cardiac symptoms... I have had multiple surgeries and my scars have a tendency to spit stitches and form keloids (excess collagen forming an overgrowth of scar tissue). My thyroidectomy scar on my neck keloided despite steroids, heavy sunblock, and prescription scar oils.


Now that my pacemaker scar is only a couple inches away from it I fear that it will scar similarly because of the highly stressed and stretchy area it's located in. For reference, my thyroid scar that would normally be a thin nearly invisible three inch line stretched to be a three inch long scar that was a centimeter wide after a year.

Does anyone else deal with cardiac issues and EDS? Anyone have any tips or tricks to keep the scar from stretching? I bought some extremely supportive bras but I don't know what else to do to keep this from happening. It was so awful and so hard to cover up before, I really don't want to go through that "everybody looks at your really obvious ugly scar" process ever again. It was hell on my self esteem.

Don't get me wrong, my pacemaker is saving my life right now and I wouldn't trade this for anything. I'll never have sinus arrest ever again thanks to this little heart robot and I love it, I've even named it. I'm just worried with the fact that I'm going to have to have multiple pacemaker surgeries to replace them over the course of the rest of my life as I'm so young (33) and that this is just going to get ugly.

4 Comments

help

by new to pace.... - 2023-07-07 05:38:09

your questions about EDS you might use the search above.  Click on what looks like a magnifer next to logout.  Put in EDS  and you will get some answers to your questions. before the others come back on this site.

new to pace

Ehlers Danlos Member here too

by Gemita - 2023-07-07 11:09:33

Hello Angie, 

Welcome to the Pacemaker Club. 

There are a few Ehlers Danlos Syndrome members and I am one of them, diagnosed in 2012.  It affects my bowel/bladder and autonomic nervous system.  I have Hypermobility EDS too, with overlap to other types and I also have some features of Marfan's Syndrome.

I am 5 years+ on with my first pacemaker and the main problem I had following my implant was bruising which was extensive and took weeks to drain.  My surgeon did a neat little job with his stitching and I have a delicate white line where my skin was cut for the device pocket.  It is hardly noticeable now, although it did take a long while to heal and up to 3 months before I felt like stretching.  I don’t recall putting anything on the wound since I was told to keep it dry and clean only because any hydration (creams/oils) could encourage the growth of bacteria and perhaps lead to pacemaker infection.  Please see the attached excellent advice from Pacemaker Club members on wound care which you will need to copy and paste into your main general browser to open:-

https://pacemakerclub.com/message/33342/wound-treatment

Because I am older than you, scars don’t worry me.  I prefer to feel comfortable and have a quiet heart than to have an unblemished skin.  The first implant wound has healed well.  It will be subsequent implants and a build up of scar tissue which might cause problems, but until that time I try not to worry about it.

Hope you continue to do well and please stay in touch

Scars

by Penguin - 2023-07-07 18:31:38

Hi and Welcome, 

I'm not an EDS sufferer so I have no specific information for you but you've clearly had some significant issues with scar tissue already and I understand why you feel concerned about the new scar and future scarring at your age.  You will have to keep in touch with your wound care nurse and be very careful if you have a history of scars forming abnormally and spitting out stitches.  The risk may be infection if the wound opens up, so keep safe.

Just a thought - You can have the device placed sub-pectorally.  More painful recovery, but perhaps the scarring would be better?  Did you discuss this possibility with your surgeon?  Perhaps this is one to discuss for next time? 

I wish you a speedy and hopefully straightforward recovery. 

 

Thank you!

by angieg - 2023-07-08 21:31:04

Thank you for your really thoughtful comments- Gemita it is lovely to meet another person with EDS! I will check out that link for sure, I appreciate it! I can imagine our timeline will be similar re:stretching. I am so grateful to have a nice regularly functioning heart now. I think a lot of my !!!! Oh no not again!! About the scar came from the fact that I was an older teen with my thyroid scar and welp, teens aren't always nice to teens with differences. I honestly can't wait to show off my scar, I just want it to heal right! Got to show it off to a TSA agent at SeaTac today and it felt weirdly powerful to do!!

Penguin, I had no idea a subpectoral pacemaker was even an option. I'm going to look into this more for next time...thank you so much! 

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