Scars on back from childhood surgery - question

[Allisoninoz]

Hi all. I'm in the waiting room for AVR surgery. All ok at the moment. My nocturnal cough resolved after changing from Renitec to Avapro (but I think the latter gives me a rash) so I'm not seeing cardio now until October. In the meantime, I've been reading about people's scars and i'm curious if anybody has scars on their backs from earlier surgery. I have two beauties for a patent ductus and coarctation repair in 72 and 79. The latter goes around to the side and slightly under my left breast which can be quite uncomfortable, all these years later. Over the years I've never noticed ANYBODY at pools/beaches/gyms etc with the same scars as me - but they MUST be out there! Surely I'm not the ONLY one! I'm really interested if you're out there...

 

[kfay]

I don't have those scars because when I was a baby, there was no surgery for what I had. My parents were told I would die within a year. I do however, have a scar on my upper thigh and ankle which are about 2-2.5 inches long from cut downs to get to my heart when I was a baby. The one on my ankle isn't really noticeable, but the one on my thigh is pretty noticeable. I don't give it a second thought...I've had it so long. If yours still cause you discomfort, have you checked with a plastic surgeon about a scar revision?

 

[bit of a chicken]

Hello Alison , I do not come on here often , but just happened to see your post . I had coarctation repair , in 1978 or 1979 , sometime then and yes , my scar goes under my left breast , and around to my back . It is quite faded now ( am now 37 ) still, not sure I would call it a beauty !! Ha , my scar is numb weird feeling , I assume from nerve endings having been damaged and the sensation when u touch it is not pleasant , I think I know what u mean... ? It can be uncomfortable , yes , sometimes on the bra line and sometimes find underwired bras uncomfortable if they sit on it and are tight ( am assuming u r female , here ??) Anyway , we are out here ! Shame u are in australia , we could compare them !! Sounds like your surgery was about same time as mine. Apparently , the surgeons told my parents at the time they would access heart via side and back to avoid central scarring smack in middle of my chest, as I am female, and have to say , all these years later I am glad about that , as people cannot see my scar on a day to day basis , only if i wear a bikini etc ! Good luck with your appointment.

 

[bit of a chicken]

By the way , I did ask my cardio and surgeon when the time comes for my avr , if they will cut into existing scar to replace avr , to this they did not actually reply as question was lost at time in something else they were discussing , out of interest, do you know if they plan to do that with u ?... just curious ( u know , don't open a quarry not just for one stone ! ) Good luck ...

 

[Allisoninoz]

Hi. I've also asked whether they go in the same way and the answer was a definite 'no' as the access required for an AVR is quite different. But I'm also told that the sternotomy leaves a far less weird/numb sensation than the side scar because of the positioning. While my back is fine and not overly numb/sensitive, it's the side, along the bra line, next to/half under the left breast etc (and yes, I am female, not a cross-dresser ) that's the 'altered sensation' bit. Funnily enough, one of my nieces (who is now 25) had a hole in the heart repaired when she was a baby and the incision was made across the chest along the 'bra line'. The doctors told my sister it was so when she developed, the bra would cover the scar. It was all very thoughtful but failed to take into account hot Australian summers when itchy underwire bras make it very uncomfortable for her!
By the way, I also posted this question in the BAV forum so check that out as there are several replies. So there are a few of us out here - but I honestly don't think there are loads. We are rare gems ....
Do you have any idea when your surgery is likely to happen?

 

[Lynlw]

There is another thread about this with a few more replies http://www.valvereplacement.org/for...rgery-question&p=460644&highlight=#post460644
Justin had his chest opened quite a few times and all the other surgeries they needed to go thru his sternum.


Most of the people I know with that kind of scar have it from their BT shunt when they were babies/children. Which is a pretty common first surgery for some of the complex Cyanotic (blue babies) CHD/repairs like Tetrology of allot or transpostion of the great vessel ect. They do it so they babies so they can get big enough to be able to do the bigger repair. IF anyone saw the Movies "Partners of the Heart" or "Something the Lord Made" about the first surgery for Blue Babies (which are both really good movies, if you haven't seen them) That was a thoracotomy. http://en.wikipedia.org/wiki/Something_the_Lord_Made (one of the Residents was Dr. Cooley)
If you are interested, this site has a little about the surgery and people with pictures , drawings of the surgery and even Dr Blalocks surgical notes from the 1st surgery. http://www.medicalarchives.jhmi.edu/page1.htm

 

[bit of a chicken]

Hi Lyn ! You are always so on the ball ...knew medically they refer to it as thoracotomy, just could not remeber it for a moment ! I have read the other replies , very interesting ... Yes, Alison , we are rare gems !! My cardio has told me that female patients are rare , the coarc is relatively rare , mine was quite severe and they do vary in severity apparently . It is also rare again to have coarc and bav , we are lucky !!!! Hmm, as I said good luck ... I am disappointed they cannot access the avr in same way , but suspected as much . my avr will not be for a while yet ! Think under ten years possibly .. but also have the start of anersym , so they keep an eye ...Alison , interested to know , how old were you when coarc repair carried out and is your avr soon ? All the best , to you and Lyn too !

 

[Allisoninoz]

I was 11 in 1979 when I had the coarc repair done at the Royal Children's Hosp in Melbourne. My BAV is currently moderate to severe and my cardiologist has changed my appointments from yearly to every nine-months with instructions to call him if any symptoms start to emerge. It's sometimes hard to discern if I have symptoms of not as I'm often tired - but I am 42yo and work and have a lovely 8yo daughter so life is busy. I'm also on a medication for mild epilepsy (which suddenly appeared a few years ago - great) that is renowned for making people tired. But my doc assures me that I'll know it when the symptoms start. When I was 40 he said I'd need the surgery in the next 10 years, probably about mid-way through, so I'm getting closer ...
A big part of me wants it done and over with. But my doc says they don't do major OHS until they need to, which I also get.
Good luck with your watching brief.