Tuesday, June 11, 2013

After the Surgery

Sorry it has taken me so long to write my next post.  Life always gets in the way of everything, I need to make sure and schedule time to write.  Thank you so much for those who commented on my last post.  I always love to hear about others going through the same thing, support in numbers right!

     One of the things that I forgot to mention on my last post is returning to work after the surgery.  The doctor told me to plan on 2 weeks of recovery and then he assured me I could go back to work.  I was working in a pediatricians office at the time as the receptionist so I thought even if I was still in a little pain I would be sitting down all day and it wouldn't be that bad.  Well after 2 weeks I went back to work and ended up throwing up everywhere within the first 30 minutes.  I think just the constant moving of getting patients files and walking back and forth to the copier was too much too soon.  That happened each day the first 3 days back at work and then I think my body started getting used to the movement all day and I started feeling better.

     A few weeks after the surgery, once I started feeling well enough, I started my wedding planning.  I had my surgery March 17th and was told I would be just fine for my wedding day on June 11th.  Well let's just say that wasn't completely wrong, but it wasn't exactly right either.  For the first 2 months after surgery I wasn't able to lift my arms above my head, it was too painful because I would be stretching the muscles that I just barely ripped apart and shoved a bar into (sorry to be so graphic).  Each time you move those muscles your body realizes that there is a foreign object in you and it doesn't like it one bit.  When you shower it is really hard to shave your armpits because you can only lift your hands out to the sides instead of straight up, attempting to reach places like your back to scrub wasn't exactly easy, trying to put a shirt on in the morning was a nightmare, but I was determined and figured out pretty quickly strange ways to put a shirt on without lifting my arms to high.  On that note though you can only imagine how wedding dress shopping went ha ha.  I had to have someone help me into each one and they had to start at my feet and pull it up instead of going over my head.  Also they couldn't do the dress up all the way because it would be too tight on my chest and I wouldn't be able to breath.

(This is me trying on dresses, as you can see my arms are completely at my side and stayed there the whole time.)


     After the surgery the hospital gives you a breathing tube device that is supposed to help your lungs learn to expand to their full capacity, since they have been smooshed by your rib cage your whole life (depending on how bad your indent is)  Mine was pretty bad so I used the device several times a day to try and train my lungs, although I never got as good a number as my husband the show off :)  How it works is you put the end of the tube in your mouth and inhale slowly as far as you can and then hold it there.  While you inhale you can watch the dial go up and measures your lung intake which will show you if you are improving or not each time.
     Here is the device, an average lung can make it to the top line of 2500ml, when I first started I could barely make it to 1500ml and that was struggling.  Since then I am able to make it to 2000ml on average and have gone just barely past it a few time.
     This is the other device that you are sent home with.  This one is supposed to help remove the mucus from your airways, since coughing is out of the question.  You blow into the end as hard as you can and it vibrates the lungs and breaks up the mucus.  I found this helpful especially since coughing and sneezing were so painful the first few months.  When you cough the doctor tells you to hold a pillow and brace yourself the best you can because you move everything in your chest when you cough and it's painful.  I was able to control my sneezing for the most part though and just stared at the light or did anything to keep the sneeze from coming out.  Probably not the best thing to do but for me it was better than the hurt that came with the sneeze.
   
     They said that everything would begin to get better with time, the only problem was that I was the oldest patient they had ever done it on, so they weren't sure how much time, and usually their calculations were off.  I don't blame them but they did always seem a little frustrated, almost to the point that it felt like they didn't really believe me, when I would tell them I was still in pain or still couldn't do certain activities like putting my arms above my head.  So the older you are just be prepared for a longer recovery than normal.  We aren't as limber as we used to be :)


20 comments:

  1. Thanks for sharing Tara! How did you feel about the change in appearance? Were you happy with it? Did you have rib flaring before/after? Did your bra band size change and do bras fit better now?

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    1. Unfortunately my chest didn't come out all the way like I had hoped, it did come out some just not all the way so I was a little disappointed in the result. I never had rib flaring though before or after, oddly enough my cup size went down but I think that is just because I was measured wrong, they would always say I was a C cup but when I would put those bras on they would fit funny and the store attendants couldn't understand why ha ha. I do fit perfectly into a B cup now though. The band size stayed the same.

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  2. Hi Tara I am a 28 year old female with PE considering the nuss procedure. Would you say your results were worth the pain of recovering from surgery? Thanks!

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    1. For me personally I would not go through that pain again, but only because I didn't get the results that I wanted. There is always that small percentage that even after the surgery your chest can fall back in, which mine did slightly. So when they did my initial surgery they couldn't get all of my ribs to pop out (which is why my indent didn't flatten out completely) and then when the bar was removed it went back in slightly, so I was upset with the outcome especially because of all of the pain I went through and not getting what I wanted. But if you have a great doctor who has done this procedure several times I would consider it. Especially if it is something that you have big self esteem issues with or if it is affecting your body's proper functioning in any way. If you have any other questions let me know :)

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  4. So glad to hear of someone getting the procedure done so close to marriage. I am getting married in August and hope to have the surgery in April. Was the surgeon you used in network? The best surgeon that is close to where I live is out of network and I am a little concerned about the bills. Thanks!

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    1. My doctor was in network, I had luckily met all of my deductibles with my insurance so the surgery cost me about $2,000, but the total for my surgery was $23,000 without insurance.

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  5. I'm a 29yo female who just had the ravitch procedure. With the exception of a small infection, all has gone well so far and I'm about 3 weeks post surgery. I still have swelling so wondered when you were able to wear a bra again after your surgery? Thanks!

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    1. It probably took me a month before I could wear a bra, and even then, I made sure to wear it on the loosest clasp.

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  6. Thank you, thank you, thank you!! My daughter (10 yrs old) has PE. From birth. No breast tissue on the left side. She's starting to develop on her right side and we have an appointment with her pediatrician soon. Your blogs have been extremely helpful! I can't even believe it but I got really emotional reading them! It will be great for her to know she's not the only girl who's dealt with this.

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    1. I'm so glad that you were able to find my blog. It is so hard to find other girls who have this and it's always nice when you can talk with someone who is going through what you are.

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    2. I'm so glad that you were able to find my blog. It is so hard to find other girls who have this and it's always nice when you can talk with someone who is going through what you are.

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  7. Hi Tara--
    Thank you for sharing your experience with PE and the Nuss procedure. I'm 29 and have been contemplating surgery to correct my PE for a few years. I'm wondering if you have more details on how you initially went about getting the surgery approved for insurance coverage?
    I've always had trouble with finding clothing that fits, specifically necklines that are high enough---not only do I have a sizeable dent, I'm also small chested so many of the styles I like are a no-go unless I want to flash everyone the goods every time I bend to reach for something. I know you didn't get the exact results you were hoping for, but I'm wondering if you still have issues with v-necks/low neck clothing and swim suits?
    Knowing you didn't get the full results you were hoping for, looking back do you think the Ravitch procedure may be more successful in older patients?
    Finally, you said that you are an active person and while the bar was in place you needed to be more careful about the activities you did; can you give more details on what you were and weren't able to do? I'm pretty active myself and some of my favorite hobbies are mountain biking, hiking, and back packing----I can't imagine going 3-5 years without being able to do the things I love, so I'm hoping you can provide some more insights about your limitations while the bar was in place.

    Thank you again for sharing your story, I'm so grateful for the shared knowledge!
    -Valerie

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    1. Valerie,
      Insurance will approve your surgery if your haller index is a certain number, I believe it has to be greater than 4 and mine was a 7. When it is higher than a 4 then it is considered medically necessary and not just a cosmetic procedure. We had already met the out of pocket Max on our insurance which is initially why I chose to have the surgery because I only had to pay for 20%. I believe the procedure was around $28,000.00 and I ended up paying around $2,000.00 out of my own pocket, the insurance picked up the rest.
      As far as clothes go I have the same problem, I have a big gap in all my bras no matter what, I'm a 34B, I try to get pushup or padded ones when I can otherwise I look like a boy in my shirts :) I find it nice though that I can wear lower cut shirts and it not look like I'm being provocative because my chest is so small. Yes, when I bend over you can see straight to my belly button but I just hold my shirt down when I bend. My husband said when he looks down my shirt it doesn't look like I have a dent, just bigger boobs LOL, which makes sense since nobody would assume you have a dent in your chest.
      I don't think I would have ever done the ravitch procedure, way too intense for me, but my doctor did say that my outcome would have been different if he put in an extra bar or 2 instead of just the one.
      As far as being active, I did cardio and weightlifting and hiking, I was okay to do those after several months. I definitely had to lift smaller weights in the beginning. I think what they warn you about is contact sports, anything where someone could bump into you really hard or if you were mountain biking and fall off your bike and ram your chest into the handle bars or something. They just don't want to dislodge it once it's in there.
      I hope that helps :)

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  8. Hey Tara,
    I'm 17 and just barely got the procedure done about two weeks ago. My haller index was 28.2! This process has been so painful. You're blog is amazing and helps comfort me a lot. I'm glad I'm not the only one who can't put there arms above there head. Walking is definitely still a trial for me. I hurt really bad still. Unfortunately, the pain medicine prescription ends in the next couple days. So now I have to really toughen up and deal with the pain. I puke as well all the time but I'm hoping I can make it back to work soon. Thank you so much for your blog posts! They help me a lot.

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    1. Jessica,
      I'm so glad my story has helped you. It was so hard for me not to have anyone really understand what I was going through at the time. Do know that it gets better, give it a few months and you will start feeling like yourself again :)

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  9. Hi ladies,

    My daughter is 14 yrs old with modern PE she just had a CTScan this week. She tells her dr. That she us not having any issues and it doesnt bother her body image but I think if the results comeback to be effecting her heart and lungs we will consider the surgery. What ages were you when you had it done. I really don't want to put her through all that pain.

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    1. I was 23 when I did mine and it was extremely painful! I would say the younger the better since their bones are still growing. But that also depends on how severe it is, if it is causing other issues like scoliosis or if it is effecting her heart and lungs. If it isn't causing any harm and it isn't effecting her self esteem I would consider not doing the surgery since it is so invasive.

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    2. Had the surgery days before my 15th birthday. Pain sucks, and that's normal. I hate laying around, but it's best at my age since I'm not yet calcified, and it surprisingly does affect me on the daily, especially with my body image. Its good to do the nuss procedure so I don't have bad scars(which are surprisingly less uncomfortable to me). It is a really major surgery and I am out of shape, after 5 weeks and my back hurts pretty bad. I don't think I would have been so self conscious in gym class, and I for sure can breathe easier, and Ill be doing things and suddenly clutch my ribs and adore how Flat these fresh ribs are. Depending on the pain tolerance and whether you're afraid of administering narcotics to your teen, I would recommend this procedure. It also helps I had incredible staff tending to me and my mom stayed with me.

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  10. Hi Tara, I literally think finding your blog was God sent. I know this is older but I needed to hear this. I live in Orem literally was in awe that I found someone so close and seeing the salt lake temple in your blog made me filled with calm. I may try to go to the same doctor as you. I'm currently 26 and just found out the I have displacement on my left atrium because of the pex. I am in need of surgery and am devastated because I wanted to start having babies... The whole reason I went in is to make sure my heart is good and apparently not.. God's timing.. not mine obvi. So I am up late unable to sleep because my anxiety never shuts up. I just don't want all the pain and not have it be worth it. I was wondering if you have had back problems from your pex? Also I was wondering if you still in Provo? My Instagram is natnie22

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