Sternotomy concern or am I just crazy????

[mamarobn]

I truly feel blessed to have found this site where I can ask questions and get opinions from real people dealing with heart valve issues. Thank you. I am also lucky that my primary care dr. noticed something about my heart murmur and had me get it checked out. Here's my latest question/concern. I would love to hear from some of you who have had a sternotomy. I am coming to grips with heart surgery and all, but I must admit that the scar from the sternotomy is worrying me. Surely I am NOT the only woman who worried about this. I worry about the pain afterwards and the appearance. Am I crazy???
Thanks in advance.

 

[kfay]

I think a lot of us were surprised at the lack of pain from the actual sternotomy. I had much more pain in my back and neck from the position they had me on on the table. As for the scar, I'm now a little more than 3 years out from my last surgery and my scar is barely noticeable at all. My first scar was much worse and after a year, I finally went to a plastic surgeon who cut it out and redid it and then I had one radiation treatment on it to keep the regrowth of the keloid from happening again. I don't know of all of that helped this latest scar heal better, but I don't have any complaints about this scar. If I could figure out how to post a picture of it, I would.

Who is doing your surgery?


Kim

 

[Jen]

I would agree with Kim, the worst part was the back and neck pain, and learning how NOT to use my upper body for getting up and laying down, etc.. My biggest issue with it at this point is the numbness on both sides of the incision at this point. My scar looks great, and frankly, I could care less if someone sees it and asks me about it. Today I really did not even feel like I had aortic valve replacement 5 weeks ago, in a good way...I put sunscreen on it when I go for my walks everyday, and have to say I am pleased with how it looks.

 

[Luana]

The least of my concerns was a scar. My bigger concern was the healing of a broken bone and that I would not be able to drive for 6 weeks.

When I asked the surgeon about another option, he said it probably would be ok. I was able to have an AVR with a 3-inch incision between 2 ribs on the right side of my chest. It's sometimes called port access or mini thoracotomy. I had minimal pain after surgery, and none of the typical "I just got run over by a truck" feeling that most people report from a sternotomy. I was able to drive 2 weeks after surgery.

Depending on the surgery you're having and your own anatomy, there may be other options for you.

 

[Lisa2]

The scar isn't an issue for me. It took some time to get used to the curious looks from folks; but, I got over it pretty quickly. It's such a part of me. I wear whatever I want. Good luck on your decision!

 

[Chris M]

It's perfectly natural to wonder about these things, I did too!

First off the pain situation: I found things a bit rough for about 3 days after surgery and required strong painkillers to be comfortable but half of that time I was "out of it" or sleeping a lot so it wasn't as bad as it sounds. After that pain levels (from chest AND back, shoulders etc.) were not so bad and manageable with fairly basic painkillers one can buy anywhere.

Secondly, appearance: I was not as shocked at the appearance of my chest as I thought I would be. My experience is that initially it looked a bit brutal and there was quite a bit of swelling towards the top but I have been totally amazed at how well and how neatly all this has healed. I am currently 8 weeks post op and have a thin pinkish line, about 9" long and very slightly raised in some places. I also have two smaller 1/2" scars between my bust and tummy where the drainage tubes were. I'm hoping the colour of the main scar will fade to a more natural skin tone in time - when it does I'm sure it will hardly be visible unless you look close. All this seems to be the experience of a lot of people.

I'm also heartened by a woman I met when I was in hospital - she was coming in for her 3rd OHS. Her 2nd OHS had been just over a year ago. This lady was around 60 yrs of age, quite well endowed (so to speak, lol!) and she was sporting a plunge neckline top... I swear, I could barely see any evidence of her two prior surgeries!! I just hope I can look as good as that in a year's time!

Finally I would say: try not to worry. I was dreading the very things you speak of but neither turned out to be quite as bad or as significant as I had imagined. So I have a scar now... so what? The main thing is I'm alive and can look forward to a longer and better quality of life now. My husband is just glad to know I'll be around a bit longer too. One's view of scars changes after an experience such as this!

 

[lance]

Hi mamrobn,
You'll be happy to learn your pain will be taken care of, mine was. It was uncomfortable in the mid-section (rib area) when getting up from bed and laying down again for a little while. For the brief period when asked to cough to clear my chest then it hurt but I wasn't coughing all the time. I was very weak for awhile and for some stupid reason I was bothered about the scar. It healed beautifully leaving a very fine, slightly silver mark way back when. I've just looked it over for probably the first time in years and it's hardly visible.
You're going to be just fine, actually better because your heart will be pumping more efficiently for you following surgery.
Cheers

 

[lance]

Scarring and such

Scarring and such

Hi mamrobn,
You'll be happy to learn your pain will be taken care of, mine was. It was uncomfortable in the mid-section (rib area) when getting up from bed and laying down again for a little while. For the brief period when asked to cough to clear my chest then it hurt but I wasn't coughing all the time. I was very weak for awhile and for some stupid reason I was bothered about the scar. It healed beautifully leaving a very fine, slightly silver mark way back when. I've just looked it over for probably the first time in years and it's hardly visible.
You're going to be just fine, actually better because your heart will be pumping more efficiently for you following surgery.
Cheers

 

[ChicagoMammy]

Hi

This was asked just last week here: http://www.valvereplacement.org/forums/showthread.php?38479-Newbie

I posted some pics of mine. As the others said - it's not a concern at all for me. I did have sternum pain. I don't remember the neck and back pain as much.

 

[Jkm7]

This is something you should discuss with your surgeon IMO

I am surprised when I read that some are still closing the incision with staples... thus the slang terminology 'zipper'. Of course, I am no surgeon and don't know if there are important reasons why that closure is sometimes chosen.
I had two OHS in four years and while my first scar healed nicely, I was sure re-opening it would leave an ugly scar but I am three years out and can barely see large sections of the scar. It is fading away.

My surgeon (and many others mentioned here) close the incision with glue, steri -strips or not and that leaves the thinnest, easiest to care for scar that for many of us heals to a thin, fine line. Within a few short months after both surgeries, I was wearing my low v-neck tops and dresses and did not feel at all self-concious.

Be sure to let your surgeon know your request for the neatest, cleanest closing and ask to avoid the staples, if possible.

Best Wishes.

 

[Paleowoman]

I'm concerned about the sternotomy too - not because of the scar - to be honest I feel a scar will be a good trophy for my troubles ! I'm concerned about the healing and trauma of cutting through the sternum. I also have osteoporosis so the way it's secured afterwards is of some concern. I also have a depressed sternum - don't know how that impacts on things. I will be asking the surgeon about these issues - I think he/she is the best person to advise

 

[Adrienne]

Although my sternum itself was completely sawed open, the scar on the skin starts two inches down (they stretched the skin to saw open the sternum). Just that makes a big difference. Then, after the surgery, I started buying pendants and other jewelry that hide the part that shows. Actually, my scar is not bad at all in any case, but just having a little pendant over it is enough that people do not notice it at all, even if the pendant moves.

 

[Florigal]

My surgery was on 12/1/10. I ended up with an infection in the uppermost suture which delayed healing a bit. Even so, I have a neat albeit bright pink scar. I expect the scar will fade to pale over the next several months. Alas, I am still bothered by bone pain which my cardiologist dismisses as "from bone shards." Even so, my chest is constantly painful. I manage all right, and I find this aspect really annoying. Nonetheless I am active and have fully recovered.

I didn't have significant notice about undergoing this major and life-altering surgery (Coumadin and I do not get along, but that's another story). Fortunately, I have and had very strong legs and abdominals so getting up and lying down without using my arms was a non-issue for me.

(Were I to need more heart surgery I would look into minimally a invasive approach at a facility where surgeons are qualified and do these routinely. My surgery was essentially an emergency so I had no time or opportunity to research alternatives).

 

[sue943]

My surgery was six years ago and my scar is about 9.5 inches. The pain wasn't anything like I was expecting, coughing and laughing not fun for a short time but really not an issue.

As for the scar, I bought tops which would cover the top of the scar and to be brutally honest what a waste of money, I like V-neck tops and after a very short time I just went back to wearing them and if people look then I am not aware of it.

I wanted the surgeons to have as much space to work as they needed, I would have been less happy with them poking about in a tiny area.

 

[Jkm7]

Although my sternum itself was completely sawed open, the scar on the skin starts two inches down (they stretched the skin to saw open the sternum). Just that makes a big difference. Then, after the surgery, I started buying pendants and other jewelry that hide the part that shows. Actually, my scar is not bad at all in any case, but just having a little pendant over it is enough that people do not notice it at all, even if the pendant moves.

My surgeon did the same thing. He cut the sternum higher than the skin.

 

[DebbyA]

This surgery is a big deal and it's hard not to worry about it. One book I read about open heart surgery explained that nerve endings originate in the spine and rarely reach as far as the sternum, so that is why the preference for sternotomy has recurred several times in the history of open heart surgery. My own experience was practically no pain from the sternotomy, and bearable pain from the back, mainly when trying to sleep. My scar is still not pretty, and it still itches sometimes. I try to consider that a good tradeoff for the extra years of life and quality of those years. I don't even like to think of what my life would be like after 3 years of decline from the way I felt before surgery. Actually I've never noticed anyone noticing my scar.

 

[mamarobn]

Thanks everyone for your knowledge and responses. Right now I am waiting (not so) patiently to see another surgeon. I have Ebstein's anomoly and I have been referred to a pediatric cardiac surgeon. It seems I find a new thing to worry about each week. I have my list of questions ready for this upcoming visit with the surgeon and hope to have more answers and a plan of action soon. Thanks again for your responses. It means sooo much to me. I did not know one person who dealt with OHS until I found this website....now I have LOTS of friends with similar experiences.

 

[Luana]

I did not know one person who dealt with OHS until I found this website....now I have LOTS of friends with similar experiences.

I think many of us had that same experience before we came here.

 

[normofthenorth]

Nice discussion. I'm a guy, with less of a nice "cleavage" to worry about, and more chest hair to hide the scar, but. . .
I remember being frustrated to learn that many VR ops are done minimally invasively, but that my chosen ("world class") center/team really preferred to do a fairly full-length sternotomy (though with a shorter incision than the cut in the bone, as others have mentioned). After I thought about it, I decided that giving them full access to poke around and letting them do their job without extra worries and restrictions was worth a longer scar to me. Apart from coughs for 2 or 3 weeks and sneezes for maybe 4, my sternum never hurt, period -- really! I stopped taking all pain-killers well before leaving the hospital on day 6, and never took any more. (My neck and back were fine, too.)

Even now, my chest area does often feel better after I give the area a rub, so I do. It's not exactly itchy (though a lot of my skin was for many weeks post-op, not sure why), but feels better after a hand has gone over it.

The skin stretching at the top of the scar did leave a bit of a bump and a "keyhole" effect to the incision/scar at first, but that's all just a memory now at 7-ish months.

Some people here who have had minimally invasive HVRs have been told NOT to expect shorter or less painful rehab, though others have benefited from those things. The underlying pain experience from OHS/AVR is all over the map (and modern pain-killers are pretty good if the pain is bad), but mine was miraculously much less painful than earlier, much more minor surgeries I've had (1 Achilles, 2 hernias). An AVR is amazingly invasive surgery in many ways, and the rehab does take a while, but I never felt like I'd been hit by a truck.

 

[ElectLive]

I've heard very different things about minimally invasive valve replacement. Cleveland Clinic says it's now standard for aortic valve replacement, they only use a full sternotomy for more difficult cases. They also offer all types of procedures minimally invasive: mitral, aortic, tricuspid and either repair or replacement. I'm assuming not all of those are the standard, though.

My top tier surgeon, much like Norm's, preferred full sternotomy. Now, I did have an aneurysm graft as well, but that wasn't the reason. He told me that they do perform minimally invasive procedures but that it doesn't give good exposure and compromises the operation to a degree. According to the national data, he said there has been double the risk of surgical stroke. The problem had to do with getting all the air out of the heart, which is harder with limited access, and that air can in turn go to the head. This is my translation obviously, so forgive me if I'm a little "off", but from a non medical point of view, that's what I remember.

I'm a guy also, so scars are probably also less of a big deal to me. The funny thing is, my pacemaker scar is actually more noticeable than my sternum scar. I'm 10 months post op and everything is still plainly visible, even the drain tube holes. It's definitely gotten better, though, gradually fading. I'm a little skeptical how much it will ever disappear, but will just have to wait on that one.

Back to my main point, though, if I were going to Cleveland for example, I'm sure I'd feel more comfortable going minimally invasive, but probably still wouldn't do so unless I had complete confidence from the surgeon that they weren't sacrificing anything using that approach, not even a small percentage of additional risk.