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Author: Subject: My Pectus Carinatum Helios Dr Schaar Reverse Nuss Adventure
figjamjoe
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no.gif posted on 8-23-2016 at 06:02 AM
My Pectus Carinatum Helios Dr Schaar Reverse Nuss Adventure


This is a post that's a bit overdue (5 months in fact!), but I have finally gotten around to it seeing as how there are not enough reverse nuss stories on here, and how helpful I found the stories posted by other users before I went through with my operation. I hope this story is accurate and that I don't remember it wrong since it all happened a while ago, but I think it will be mostly accurate.

I have also posted this story on the pectus subreddit (link: https://www.reddit.com/r/PectusExcavatum/comments/4z6cp1/my_...) so if you have questions you'd rather ask on there, then feel free!

I can't remember when I first noticed my chest being different. It was probably around 11-12. It never bothered me growing up, people would say stuff about how my chest looked funny but I really didn't care and it never stopped me taking my shirt off. I always felt like I had breathing problems though, but I just put it down to lack of fitness, even though I played a lot of sport growing up. It would always feel like any time I ran, I was unable to really catch my breath. Kind of hard to explain to people who don't have the symptom, but I describe it as trying to get all the air out of a plastic bag, I always felt like I couldn't empty my lungs properly. I was always a very skinny guy, especially after I had a massive growth spurt from 17-20 (going from around 5'5" to 6'2"). My pigeon chest was massive, probably bigger than any i've seen on this forum so far. Around 21 I decided to hit the gym, and slowly put on about 25-30kg. This didn't make my chest less obvious, it actually did the opposite because of the way my pec muscles attached to my sternum. This actually made me more self-conscious, and more people began to say things. Not outright bullying, but enough comments to make me self conscious. I also developed terrible posture (kyphoscoliosis). The spinal Dr in my city told me I needed to work harder to fix my posture, but I did try as hard as I could. Later with Dr Schaar I found out that it was my sternum pulling my spine down and making it almost impossible for me to straighten my back. My terrible posture also gave me a lot of thoracic back pain which made it hard to sit or stand in one spot for a long time. Also I began to get a lot of chest infections, which would last for a long time. And because I work in a hospital, this was making it hard for me to keep working without taking too many sick days. So overall, my chest made me feel a little self-conscious, but my major concerns were the symptoms it was causing.

Over the last 2 years, I saw around 4 GP's (family medicine) asking if there was any reason behind my breathing problems and recurrent infections. I did a few spirometry tests, and they all showed varying results. Some said maybe asthma, some said vocal cord dysfunction, some said it was in my head. But importantly (!) none ever ordered a chest X-ray. Every Dr I saw however said that none of the symptoms I was describing could possibly be caused by my sternum. So I decided to do some googling to see if my chest could be responsible, and I found this forum along with some others where users were telling similar stories to mine. So I asked my main GP to refer me to a Cardiothoracic surgeon in my City. I went and saw the surgeon and he said that my chest was probably causing my breathing troubles (wasn't sure about the chest infections and sore back), but he thought my case was so severe that he was not comfortable operating. Also he did not do the Reverse Nuss (only the brutal Ravitich) and he didn't really know if anyone in Australia does.

So I messaged Dr Schaar after reading about him on this forum. And sent him photos and he said he was happy to do the operation! He had me get some tests done, including my first chest X-ray since I was a kid which showed my lungs and spine were actually being damaged (which made me a bit mad that all the Dr's I saw before that told me I was crazy) and he booked me in for about 6 weeks down the track. He was very helpful with my questions before the operation, and gave me the email of a former patient of his who answered all of my questions. I was a bit stupid and only made the payment a few days before I left for Germany, and I'm not sure if it all arrived before my actual operation, but everyone at the hospital was understanding and didn't delay my surgery.

My Surgery at Helios was on the Wednesday. I arrived in Berlin on the Monday with my Dad, and we went to the hospital where we were sent to the Paedeatric wards where I would be staying. I spoke to the nurses, who had me fill out a bunch of forms and told me I would see Dr Schaar that afternoon. I waited around with my dad, then in the afternoon I saw the anaesthetist who asked me more questions about my general health, and who gave me the all clear for the operation. Then I went back to the wards and was examined by 2 junior doctors who work with Dr Schaar. They took some measurements, explained the operation and the risks to me and I signed the form to go ahead with the operation. Then I met Dr Schaar. He took me to the office and had a look, and I think he was amazed! He said it was a lot more prominent than it looked in the photos. He took some measurements and drew a picture of my chest and said it was one of the bigger ones he had seen, but he was still confident the surgery would be worthwhile.

I stayed overnight in the ward Monday and Tuesday night, but spent the rest of the time before exploring the city. Tuesday night they put something in my bum to make me poop out everything which was terrible, and I couldn't eat after midnight. Wednesday morning I woke up. I was the 2nd on the list, at about 10-11am. They put me in the nursing gown, and the nurse gave me a tablet to relax me. Then they called for me, and wheeled me into the waiting bay. The nurses and anaesthetists came and spoke to me, and they tried to put in a spinal needle for pain relief after the operation. They failed twice (I think because my crap posture made it really hard) and decided just to put a needle in my arm vein instead. Then they gave me something and I went to sleep.

I woke up in the waiting bay and my pain in my chest was really really bad. A rude lady came over (I think it was a nurse? not sure) and told me that nobody is really in pain after they wake up and she walked away. But my pain was really bad, like 9/10 so I yelled out and some nice people came over and gave me something which helped. Then they took me to the ICU (not really ICU - high care unit, kind of in between normal ward and ICU). I was on IV morphine but it made me throw up so they changed it to oxycodone. I had a regular dose running and I had a button to press to give me more, so the pain was not too bad (maybe 4/10 max). My dad was there to see me which was good. Dr Schaar came over and told me the operation was a success and I got to have a look at my chest. The difference was huge! One small thing however was that there was a little lump in the middle of my chest that stuck out a fair way. He explained that one of my ribs didn't attach to my sternum properly because after the operation my posture changed so much that it swung the rib out a long way. He said that it was not a big deal and that I should probably wait and get it fixed when I got the bars out (I had 2) in 2 years. I wasn't allowed to walk the first day.

The day after the operation, I began doing the breathing exercises that the physios had taught me before the operation. I was determined to recover quickly so I did them a lot, almost every hour. Over the 7 days in ICU i reached 4200ml lung capacity (compared to 5000 before the surgery). Doing the exercises helped a lot and I recommend to anyone who has the operation to make sure they do them as much as possible. The nurses let me walk around on the day after the operation, just up and down the hallway once. Over the next 7 days, I was walking more and more, still in the hallway with my 2 chest drains attached so it was pretty boring. I couldn't have a shower, I had to use a wet cloth so I felt pretty dirty. Most of the nurses were really nice and helpful, but 2 basically ignored me when I needed help. One time my oxygen dropped to around 85% (normal is around 99) and a big alarm went off, and I yelled out but the nurse looked at me and walked off. That was scary. Another time the guy in the bed beside me had his drip fall out and blood started going everywhere and even though I literally jumped out of bed and told the nurse she took about 2 minutes to come help. Overall though, the rest of them were awesome.

I felt ready to leave the ICU after 4-5 days but my lungs were taking a while to drain, so I couldnt leave until the drains were ready to come out which was after 7 days. They took the drains out, and took me back to the childrens ward. Now I was able to shower, and walk a lot more. Which I did a lot of both. I made a friend who told me to download an app which measures how far you walk, and we both made a deal to walk at least 10km every day. That helped me a lot.

On the 9th day I was still getting better every day and I felt like I would be out by the 11th day. But on the 9th night, I started to sweat and shiver like crazy. They gave me paracetamol which helped a bit, but i woke up the next morning very tired and covered in sweat. This happened again on the 10th night. When I saw the medical doctors on the 11th day I asked them about this and they took some blood tests which showed my white cell count and inflammatory markers (CRP) were very high. My CRP was about 400, and normal is less than 8. But they weren't sure what exactly was causing it, but most likely an infection of some kind. They put me on IV antibiotics on the 10th day, and changed them on the 11th(maybe 12th) because the first type weren't doing anything. I started to get better very very slowly. During the day I felt completely fine and was ready to go home, but every night I would sweat and shiver like crazy.Also, I started to get more fluids in my lungs. On about the 15th day they decided to drain this fluid by sticking a big needle in and testing if that was causing the infection (they never ended up finding the source). That hurt like hell but it made my breathing better. Around the 13-14th day, I had to have a small 2nd operation to fix the little rib sticking out that I mentioned earlier. But Dr Schaar was awesome because he booked me in straight away and didn't make me pay for the 2nd operation. I was very happy with this because the little lump was getting worse and sticking out a lot. After the 2nd operation it looked a lot better.

During my time in hospital I lost about 8kg, so I recommend taking in some high-calorie food (chocolate, peanut butter) to help prevent this.

On the 17th day, I finished my IV antibiotics. I left the hospital with some oral antibiotics to take as well as some painkillers (Similar to aspirin and paracetmaol). And a note telling me when to take those tablets. I had to take the antibiotics for about a week. I took the aspirin for about another 4 days, and then just took paracetamol until about 3-4 weeks after the operation. I had about 5 days after I got out of hospital so I explored Berlin with my dad. I was walking a lot, sometimes 15km+ in a day and not having much trouble. Still doing my breathing exercises. And sleep was fine. I could only sleep on my back for around 4 weeks after the operation (because of pain), then for about a month I could lie on my side for 30 minutes then back onto my back. After that I could sleep on my side again. This took a lot of getting used to but eventually it didn't bother me. I saw Dr Schaar as an outpatient once before I flew home. He measured me again and the difference was huge. It is still obvious that I have a pigeon chest when my shirt is off, but I think it was reduced by about 80-90%. My chest went from 30cm front to back to around 20cm.

I flew home, and had to inject myself in the stomach with a needle to prevent clots before my longest flight. I was walking on the plane every hour or so, and didn't find it hard to sleep.

When I got home, I had about 6 weeks before I had to go back to study. So every day I would go to the beach and swim for around half an hour, then walk for about 30 minutes. I was still doing my breathing exercises, and I would walk again in the afternoon. I still had fluid on my lungs, and my lung capacity was back to ~3800ml but this slowly improved over the next month.

After about 7 weeks, I started going to the gym again. I could only lift very small weights (bench press ~40kg), but after about 3 more weeks I was lifting ~80% of what I was before the operation. I think I was trying to recover too fast though, because after one session I felt really sore on my side, I think where one of the bars attaches to my ribs. For about a week I could hardly do anything, like open a door or lift my arms above my head. But that went away.

After about a month, I was only taking paracetamol before going to bed and when waking up in the morning. And after about 6 weeks I stopped completely, unless I randomly felt sore.

Now it is about 5 months after the operation. I am pain-free 95% of the time. I think the only time I get pain is when I do too much at the gym, or if I have a big weekend (I like to go to the beach, mountain climbing, hiking etc). I can do everything I was doing before the operation, except not playing rugby. My breathing is lot better compared to before the operation, I have only had one tiny chest infection which was because of a stupid sick guy on the plane, and my posture is a million times better. Everyone keeps telling me how much I've grown since the operation, because I can stand up straight now :)

The whole operation and recovery was a big ordeal, but I am definitely glad I did it and I am glad I went with the experience of Dr Schaar. He was friendly, professional, and I could tell he's passionate about his job. Even if he pushes you very hard in the recovery process haha. Now I suppose I will wait until I have the bars removed in 2018. I'm sure I forgot to talk about a lot, so any questions please let me know!

PS - I know everyone wants to see photos. I will get around to it. But like I said it was hard to show the severity of my condition before the operation, so photos may be deceiving. I will try to find the sketches Dr Schaar made as well as some X-rays, but you can trust me when I say it is a big difference.
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withPC
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[*] posted on 4-30-2017 at 04:24 PM


Hi figjamjoe,

Looks like a lot of infections going on at Helios. Most of your story is like I would read my own story :) Keep strong. It's worth it.
I'm 5 years post bar removal at Helios and very happy :)
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