Scar Tissue and Emotional Stuff

Hi all,

I've been posting a lot here since I went into ERI a few weeks ago. You guys helped me get my s*** together and press the doctors to push my replacement up 2 weeks and so I'm not 2 weeks post-op.

The first time I got a pacemaker, I was 15 years old and totally unafraid. I thought it was no big deal to have the device, the scar barely bothered me... I don't even think I kept my arm down for the mandatory 6 weeks. I pretty much went back to living life as a 15 year old and worrying more about boys and math class than about my heart or the device site.

Now I'm 23. When I was preparing for the replacement, I thought about the new scar and though I wasn't thrilled, I was prepared to have a new one. My old scar from 9 years ago stretched downwards and also got shorter-- it was almost round rather than just a long thin scar. But the new scar from 2 weeks ago cuts through the old scar tissue and goes out of either end. Think of a line going through a rectangle... I feel like it looks absolutely terrible, like I was butchered. Add that to the fact that my coworkers and friends are treating me like a sick person-- my parents who are across the country and many of my family members keep checking up on me to see if I'm okay. I know they are worried but I am left feeling very much like a "Sick person" who was butchered rather than a carefree woman who happens to have a pacemaker...

To make matters worse, the scar now feels extremely bumpy and uncomfortable. I know my pacemaker is the same size as my old one (literally to the millimeter) but it feels SO uncomfortable. My boyfriend insists it's because there is still swelling around the pacemaker and that it will go down, but it feels more like there is scar tissue building around it and making the pocket harder. Does that make sense?

I haven't been sleeping on that side for 2 weeks and I've been careful to keep purses, bra straps offof it, but even when I try to stretch or reach across to my right side, I can FEEL the pacemaker in the pocket, pushing against the scar/my skin, and it's so uncomfortable. It's a constant reminder that I had surgery, that I am a "sick person..." Emotionally I am having a hard time with all this.

And because my new scar cuts through my old scar in a horrible way, I am extremely nervous this time around that it will stretch and look deformed. I have kept butterfly strips on it since taking off my dressing, I won't wear anything but a maximum control sports bra (I'm not huge up top but it's enough to tug the skin in all directions when I lay down, etc) and the scar tissue underneath is bumpy and painful, so I've been putting vaseline on it and massaging the area careful to try and break it down.

Any and all advice welcome.

8 Comments

To clarify

by CRose19 - 2013-10-23 06:10:11

Does anyone else have painful scar tissue around the area and did you find massaging it to be helpful?

Has anyone else had a PM since a young age, and therefore had multiple replacements? Will I eventually need to have the scar tissue removed??

Any suggestions on how to make the scar look better? I read that vaseline is just as effective as mederma so I didn't spend the money, but I have heard that silicone sheets are worth the money. Has anyone used those before?

Any suggestions from women on GREAT sports bras or other ways to prevent the scar from stretching extra?

Any advice on how to stop feeling like a "sick person?" I am frustrated that for 9 years I felt normal and NOW I feel sick...

time...

by lucyb - 2013-10-23 09:10:58

I agree that having a positive attitude can solve so many problems, but I would also add that time can solve problems too! I am 3 weeks post-op and although I'm still having a few issues, I have to say that the third week has been MUCH better than the first two! You are still recovering from an invasive surgery - don't be so hard on yourself and give yourself a little time to heal! Be kind to yourself! Try to make peace with the healing process - that's what's really helped me come to terms with it all.

Personally, I think people will see you as being as sick as you believe you are. If you are bright, cheery and your usual self, people won't think twice about your health! Maybe that's why I managed to get through 28 years of complete congenital heart block without a single specialist trying to convince me to get a pacemaker ;)

Thanks-- but...

by CRose19 - 2013-10-24 03:10:37

Hi all,

I was pretty upset when I wrote earlier and I can see that it was reflected in my post! I do not live life as a "sick person." I have a full time job that I really like, a wonderful boyfriend and a social life that is great considering I recently relocated across the country. I went to work today and lived my life as if I didn't have a pacemaker-- I am talkative and friendly at work, and when we went to watch the game at a bar I drank and chatted like normal. Now that my surgery is over, if I keep the scar covered people generally don't ask how I'm feeling, which is how I like it.

I DO have a relatively good attitude about these things but I think I'm allowed a little bit of panic and sadness after a replacement, no? That's why I came here-- to be able to vent to people who understand even a little bit, given that I don't know anyone else with a device.

So Sparrow, I appreciate your assessment that I need an attitude adjustment, but I'm sure you have bad days as well.

Back to the questions--

My doctor told me it was more than fine to put vaseline, etc on my scar. I used mederma after my last surgery and for 9 years I've used sunscreen, bandages, lotion, etc. on it without a single noticeable affect. From everything I've read/seen/experienced I find nothing wrong with it. So:

Does anyone have recommendations (certain lotions, massaging) on how to soothe and smooth out the scar and the scar tissue below?

I can't be the only one trying to make the area more comfortable/look better!

Also

by CRose19 - 2013-10-24 03:10:40

Thanks for the information on the repair... I read an article about how doctors often wait if they can to put pacemakers in very young patients without symptoms in order to avoid too many replacements, and I'm frankly a little surprised that my doctors didn't wait-- when I was 15 I had a slow heart rate but had no other symptoms.. no fainting, shortness of breath, etc. My heart block would've gone unnoticed if it hadn't been discovered by accident by a school nurse! Either way, they put one in, but I am starting to realize that scar tissue will build up so much that plastic surgery will be necessary. Hopefully my insurance in 10 years will cover the repair like yours did. Thanks for the info :)

Also, LucyB you are right that it has only been 2 weeks. Patience is tough for me because I think I had false expectations about the surgery-- I know it sounds stupid but I think I figured it would just be like getting stitches and going home... Again, for the first surgery 9 years ago I was running around almost immediately, I don't even remember having trouble sleeping, if you can believe it. I even told my coworkers I would be back at work the day after, btu instead I needed to take 2 days off plus the weekend before going back.

Expectations vs. reality! I think I will be more prepared next time. And in the meantime I am going to try and dig through the emotions as fast as I can so I can feel better. I look forward to a few weeks from now when I am more healed and therefore more comfortable... I find that physical pain or discomfort severely affects our emotions and makes it harder to be positive. At least I am trying :)

Scars

by jenny97 - 2013-10-24 09:10:02

I don't have any suggestions on creams and such (although I've heard vitamin E is very good for scars). But your experience sounds similar to mine, so I thought I would put in my two cents. I was in my early twenties when I got my first PM and had a replacement in 2009. As with yours, the incision from the second surgery was a little longer (wider) than the first and the PM felt quite uncomfortable in the pocket for about 6 months. I also had a lot of swelling. But for me, a lot of what you describe as far as the look of the incision and the feel of the PM in the pocket subsided over time and now I hardly notice it at all. By the end of the first year after my replacement, I didn't really feel the PM too much anymore. And, being very fair-skinned, my incisions blend in well with my skin.

My incisions also stretched quite a lot, so I have a pretty tall looking scar even though the cut was horizontal. The second cut was through the middle of the tall first scar and now blends so fully I cannot tell the difference. It just gets taller over time. I'm guessing a scar tissue revision will be necessary at some point in the very distant future.

As far as getting other people to treat you as if it's no big deal, like others said, you have to teach them how to treat you. It sounds like you're doing just that by going out with friends and being your normal, chatty energetic self. So keep up the good work!

And, of course, we are all entitled to our moments of frustration and discouragement, just so long as we don't allow them to become the norm.

I wish you all the best and return to your completely normal life!

Jenny

Scar Help

by Many Blessings - 2013-10-24 10:10:23

Hi,

I had my first open heart surgery at 16, my second at 27, and a couple of close heart surgeries after that. Now, I have a PM scar to go along with the others. I know how you feel about wanting your scar to look better.

As for trying to get them to heal "prettier', it kind of depends. My scars keloid, and trust me, I have tried EVERYTHING to clean them up some, but nothing helped. You might try some of the things I tried when I was younger. If you run out of ideas to try, you may have to resort to covering the scar(s) like I've had to do for all of these years.

First I was told to rub olive oil, peanut oil, and castor oil on it every day. That didn't help (and I did it religiously for years). Then, came laser treatment (prior to my PM), which didn't work either. I even tried Silicone Gel Sheeting back when it was still a prescription. That didn't touch it either. Nor, did Retin A. I tried everything else under the sun that I could find on the subject as well, whether it was natural, chemical, prescription, or over the counter.

If you try everything everyone has suggested to you, and nothing works, then you might want to look into a heavy cream based scar cover. I love Joe Blasco brand ultra base cover and Linda Seidel setting powder "a must to lock it in". You can also use Dermablend or any other brand that's specifically made for covering scars. Just make sure to use a setting powder made for setting the scar make up. If you use any other kind of cover cream or powder, it won't work as well.

Feel free to private message me if you have any questions.

Good luck!

scars

by Tracey_E - 2013-10-24 10:10:45

I'm on my 4th one so my scar has been opened quite a few times! I've had great luck putting medical grade vitamin e ointment on it. I spoke to a plastic surgeon who said the important thing is keeping it moist, doesn't much matter what we use. And keep it out of the sun the first year, be super diligent about sunscreen. It takes about a year for the scar to turn white and flatten out after each surgery.

When I had my last replacement, a plastic surgeon rebuilt my pocket. Scar tissue had been building up and getting uncomfortable. Now, it's good as new! And insurance covered it.

We all have our bad days and occasional pity parties, normal! As long as we don't let it turn into weeks and months and affect our lives, it's no big deal.

re: how other people treat us. Annoying but also normal. If they love us, they will worry about us. If one of them had a surgery, we'd be worrying about them too. As time goes by and they see you back to being a normal busy 23 yr old, they'll forget about it again until the next replacement.

one more thought, I'm a lot older than you but have the same condition. When I was 15 (early 80's) the pm was not seriously considered because I didn't have many symptoms. Protocol then on young people was to wait as long as possible. In hindsight, I wish I'd had it earlier. I would have been able to do so much more during my high school and college years than I was without the pm. I got by and felt ok, but I feel a lot better with it. So, if you were my daughter and knowing now what I do, I wouldn't have hesitated to get it for you as soon as diagnosed, symptoms or not.

of course it's okay to have a few bad days!

by lucyb - 2013-10-24 11:10:35

Don't feel bad about having a few bad days! In fact, my in-laws are doctors and they warned me before I went in for surgery: "don't be surprised if you're an emotional wreck after your surgery, all the medications they give you can do strange things to your emotions". I was like, "yeah, sure, I'll be fine, I'm not an emotional person" .....Of course I had to eat my words when I kept crying for no reason in the days following the surgery. Even good things were making me cry!

Give yourself a bit of time and be kind to yourself. Allow yourself to take some downtime and do some things that are nice for yourself. I've been using my recovery and arm restrictions as a nice excuse for treating myself to little luxuries like ordering take-out, sitting on the couch and watching back-to-back tv episodes, and going to the hair salon for a shampoo and blow-dry - things I don't usually do very often, but you've got to find the silver linings!!

You know you're wired when...

You run like the bionic woman.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.