Tuesday, October 18, 2016

Pre-Op: Nuss Procedure, Pectus Excavatum

     Tonight will be my last night sleeping with my heart and lungs compressed by my own rib cage. Tonight is the last night I'll sleep with my pectus excavatum. Tonight is the last night I have before I'm strapped into the wild-ride that is 'change'.
     I'd say the majority of people in my life don't know that I have a pectus excavatum. It's not something you can tell just by looking at a fully-clothed person. And if you've never seen me shirtless, and I haven't told you that I have it, there's really almost no way of knowing. But my pectus and I go way back. All the way back, actually.
     For those of you who don't know what a pectus excavatum is, it's a congenital deformity (congenital meaning you're born with it) which results in some of your ribs and your sternum forming incorrectly and caving-in giving it a sunken, crater-ish-like (totally a word) appearance.
Here's a good diagram of it:
http://www.mayoclinic.org/~/media/kcms/gbs/patient%20consumer/images/2013/08/26/10/41/mcdc7_pectus_excavatum_jpg.jpg 
Luckily mine is not that severe.


Here's some images of my chest I took tonight. It's hard to really get the depth from a picture, but at least it's something.

     For much of my life, my doctors, my parents, and I thought it was for the most part cosmetic. There wasn't significant evidence to show that it affected me beyond that. I definitely didn't want surgery just to "look better", so we never went through with anything. It wasn't until this past year when my best friend expressed concern when I was struggling to breathe and getting really sick and dizzy when I went to the gym with him that he urged me to get it checked, and so I did.
     I found a doctor who specialized in dealing with chest issues (known as a cardiothoracic surgeon), and set up appointments with him. He scheduled different tests for me, and the tests confirmed that my pectus has been causing me a lot of physical limitations. They ordered an MRI and CT-scan of my chest, and I asked the doctor to print me out one of the images. While it's not the best image, here's what I got:
The white bone on the bottom is one of the vertebrae in my spine, and the top bone that is indented downward is my sternum. The grayish lump in the middle is my heart, and the black areas inside my chest are my lungs. Basically, my heart in pinched between my sternum and my spine, so any time I work out, my heart can't beat hard enough or fast enough to provide adequate blood flow and oxygen levels, hence why I get so lightheaded and dizzy so quickly when working out.
     Now the surgery I'm getting is known as the Nuss procedure. It involves inserting metal bars through the ribs, under the sternum, and out the ribs on the other side. The bars are bowed, and go in with the edges protruding out of the chest. Once in, the surgeon forcibly flips the bars. The bars hook onto the rib to hold them in place, and once they are flipped, they push the sternum into place. The bars are left in for at least 2 years in order to fully reshape the chest cavity. After the two years have passed, the bars are then removed and the bones in almost every case retain their new shape. In some cases, only one bar is necessary. For me, I'm old enough and my pectus excavatum is deep enough that I will be getting two bars.
     I'm honestly terrified. Not really for the surgery, but for the recovery. I've heard recovery is a very painful experience.  I will likely be in the hospital after surgery for 3-5 days, and then I was recommended to take off work for about 4 weeks. As someone who will freely admit that I have a low pain tolerance, I'm definitely nervous. Right now, I'm just trying to tune out my anxiety, and just accept that it's out of my control. Will the surgery likely be worth it? Yeah. Will I likely look back and be so happy I did it once the misery of recovery is over? Yeah. But right now, I'm just so nervous...
     Beyond just the pain, it in a way feels like I'll be losing a part of who I am... For me, I usually like things that make others unique. I find them intriguing and fun to learn about. I enjoy the things that make me unique, and my pectus is one of those things. But it will soon be gone... And I've only been able to use it as an excuse to get out of heavy work for the past year... Truly unfortunate that it must be corrected so soon so I can no longer play the "I'm limited, I can't help with (insert project/activity name here)." card after surgery and recovery.
     I got a really good blessing from the missionaries this week, though, and I'll get one from my dad before the surgery as well. I've already heard from a lot of people who have said they will be praying for me, and are thinking of me. I've been told my name has been placed on the list in the temple prayer roll. I'm feeling really blessed and loved at the moment. I'm just hoping God can pick up the rest because there's no way I can handle the stress and misery of this by myself. I'll get on and write a Post-Op once I'm feeling a bit better.

5 comments:

  1. Prayers for you!! :)

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  2. Sending you hugs and prayers. "Thank you" for your honesty in your posts as well as your testimony. You are an eloquent and gifted writer. Never give that up. I will pray for a speedy recovery for you.

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  3. A lovely post to read, thank you. How are you doing, almost a year later?
    I'm just looking into surgery myself as a possibility after my health has been declining due to pectus related limitation these last few years. I too feel deeply that we are unique and beautiful and something would be lost were I to be fixed.

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    1. Hello Deborah, my apologies it has taken so long to respond. I only occasionally check my comments, and since I need to moderate (otherwise I've had people post really crude comments), it takes me even longer to know that someone has commented.

      Anyway, things have actually been going well since surgery. I still have the bars in my chest, and will have them in for a little over a year still. But currently the pain is pretty much totally gone. I'll get discomfort, and rarely pain, if I do anything that requires me to position myself in a weird angle, or move/carry a lot of weight, but other than that I'm fine. I feel like I can breath better than I could before surgery, and while I'm still out of shape, I'm able to work out better than I could in the past. At this point, I would probably recommend the surgery if it's causing issues with your health. The recovery for the first month after surgery was really difficult for me, so it might be like that for you, too. But if it will improve your health and quality of life in the long run, I'd say go for it

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