Wednesday, October 1, 2008

pectus excavatum

Pectus excavatum:

So I was born with this rib cage defect. Well, actually, having read my childhood medical record it states that it was not present at birth but began to show itself shortly thereafter & continued to progress over time. My brother also has it, but it's not nearly as severe as mine was. I actually have no idea if anyone else in my family has it though.

So growing up I remember going to many doctors over the course of many years regarding this. None of them seemed too concerned or wanted to do anything about it. Until later on that is.......I still wonder why they waited so long to do anything about it. I don't know, there could be a good reason for it that I'm just not aware of. By the age of 12 they were ready to take action. I had the surgery in August 1985, one month prior to my 13th birthday. In my opinion this is just a horrible decision in & of itself, not to mention the way it was handled in my case.

I feel it's a bad decision to do it at this age mainly because it's an age where a person is extremely self conscious about their body already. To go doing major surgery at a time like this just doesn't seem like an intelligent decision to me. I mean, if it's a ruptured appendix or something really critical there's obviously no choice, but for something like this it really should've been handled at a younger age or left alone in my opinion.

Also the way it was handled has never seemed right to me. I can remember going to meet with my surgeon & I was asked to leave the room so the surgeon could talk to my mom. That just isn't right, especially at the age of 12. It is after all MY body that they are doing the surgery on. I felt like I had no rights at all. No one cared that "I" didn't want to have surgery. No one cared that "I" didn't like being left in the dark regarding what was going to be done. They did discuss a few of the possible negative long-term effects of the surgery with me in the room, which did occur, despite all my praying that it wouldn't.

And not once prior to my surgery did anyone ever discuss with me that there would be pain involved. That was the most horrendous shock of the whole deal. Not only was there pain involved, it was horrendous pain--they had cut through every layer of the body, including bone. If someone could've at least prepared me for that I would've been so much better prepared & better off & probably had a much easier recovery. You may be thinking that pain after surgery is just common sense & didn't need to be discussed, but all I can say is that it's not to a 12 year old.

They had promised me they would do the incisions infra=mammary (cross ways underneath the breast area) so the scar would never be visible when clothed. And then of course I wake up to find they had done a HUGE midline incision. That was just the final kicker for me really. I was beyond pissed. I remember crying & crying about it all.

I probably sound angry in this blog, but I'm not really. I was, for many years, but I've gotten over it. The surgery has had many negative lasting effects on my body that I am not so pleased with, but there's really not much I can do about it. It's just something you have live with. I've done the best I can with the circumstances & that's really all I can do. Being the optimist I am I do try to focus on the bright side & I take pride in the fact that I survived such a horrendous surgery at such a young age & if I could get through that I am certain I can get through any other surgery or painful event that life has to offer. Honestly, not much in life will be as painful as a surgery of that caliber. And the surgery itself had a big impact in me wanting to be a nurse. I also feel I can empathize with my surgical patients in a way that other nurses can't (most nurses I know have never had surgery).

For many years now I've wondered what exactly they did in there. I've had two MRI's in the past (neck & wrist) & they always question me over & over about the possibility of having metal rods in there (I guess this is one method used to surgically correct pectus excavatum). I was pretty sure I did not have metal rods in there, no one told me I did & I would think they would tell you that for sure. Both MRI's were a success, so it was clear there wasn't any metal rods in there. I had always thought about contacting my surgeon & asking him what he had done. I know he's still working, I've seen his name around, he's a pediatric surgeon.

Somehow it suddenly occurred to me to request my medical records from the hospital I had the surgery at. So in July of this year I did just that. I was praying they would still have them, it's been more than 20 years now. So just a couple of weeks ago the records arrived in the mail. I am actually REALLY glad I got them. It doesn't clearly explain exactly what was done in the surgery--all it says it that they removed part of the first 6 sets of ribs & reattached the sternum & somehow raised it all up. But it does clearly explain that it was a more serious matter than I had ever been led to believe. I do recall when they finally decided that surgery was necessary they discussed the fact that I have such a tiny ribcage, that's it both narrow & shallow. Adding upon that was the fact that I have scoliosis (curvature of the spine) & the pectus excavatum. I do remember them saying they felt my heart might end up not having enough room. In the records the xrays clearly show that my heart was not in proper position prior to the surgery & even after the surgery it is only 'in slightly more normal position'. So my heart isn't even where it should be, but it's somewhat more normal than it was. I was really shocked to learn this. In the OR Record it clearly states that they had mapped my body for infra-mammary incision on the table & then decided amongst themselves that my case was too severe for it to be done this way. To see that they hadn't just blatantly lied to me about the incision choice really made me feel better. I'm still not happy about having this big scar, but at least I know they didn't just lie to me like I had suspected.

Despite my addiction to working out & all my weight lifting I have never been able to regain my chest muscle strength after the surgery. And no matter how much I workout I still get very short of breath upon exertion, my heart just can't seem to compensate enough. (I do also have a heart murmur, so I'm not sure how much of that is related to the murmur & how much is related to the pectus excavatum issues) And there was a lot of developmental disruption to the breast area--I am not even sure I will be able to breast feed my baby because of it. I've asked the docs & it's just a wait & see game for now.

I do see on Wikipedia that pectus excavatum is sometimes linked to pressure while in utero. I did have this, my mom had a very large fibroid tumor in utero with me, but since my brother also has slight pectus excavatum I tend to suspect it's hereditary. I also read that mitral valve prolapse (my heart murmur) can be caused by the pectus excavatum & that if they had done the surgical repair at a younger age the murmur may have not occurred. I am very suspicious of marfan's syndrome ( )--I don't know, but I do have an awful lot of things on the list that are so commonly connected to it. I would love to have testing done to see if that's the case, but I'm sure it's expensive & insurance wouldn't cover it.

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