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Author: Subject: 23/M Nuss With Schaarschmidt August 2016
andrewc92
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[*] posted on 8-19-2016 at 08:00 AM
23/M Nuss With Schaarschmidt August 2016


23/M Nuss With Schaarschmidt August 2016


Location: Massachusetts
Age: 23
Sex: Male
Condition: PC (With a little PE on Cardiac side).
Development: Born with it
Intervention: Sandwich Nuss Surgery (wore brace from 17-18)


Hi guys, I've posted in the PC board, but I had my surgery with Schaarschmidt last Thursday and figured I should tell you guys about my experience. I don't want to drone on about my story, but I had Pectus Carinatum with symptoms including shortness of breath, tachycardia, poor recovery heart rate, etc. I'll fill you in on more of the details as I update my log.

Right now I'm a week ahead, so I'll make a post for each day I've been here.
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andrewc92
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[*] posted on 8-19-2016 at 08:04 AM
Day 1


I arrived into Berlin and the airport managed to lose my clothes bag. After a lot of stressing, I headed over to Berlin-Buch at around 8pm. Wasn't sure exactly what to do when I got there, since they place looked pretty dead. I managed to get to Schaarschmidt's ward where I spoke with some nurses who found me a place to stay.

The professor came in at around 11pm to look at my chest. It's amazing -- he's almost exactly how I pictured he would be. He was very calm and confident about what he could do. He told me not to worry and that I would be in good hands.

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andrewc92
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[*] posted on 8-19-2016 at 09:26 AM
Day 2


The next day was the day before the surgery. That meant getting all my tests done and prepping physically (and mentally) for the big day.

Couple things stood out:
1) It can be a little bit of a pain if you don't speak German (especially to the old East German nurses). Obviously, I can't blame them for not speaking English, but communication can be tricky. I found google translate helpful.

2) in the night I was asked by a nurse to go into the bathroom (wasn't sure why, since she didn't speak english). She then asked me to bend over and put a stick up my butt and then sprayed something. It was one of the most unpleasant experiences ever (I feel even more sorry for her). This was meant to get me to poop.

3) Before I went to bed, Schaar spoke with me a little bit about the procedure and what his plan is. I was a little worried that he was only going to correct my Carinatum side, but he made it clear to me that he planned on doing a sandwich nuss (and correcting both sides).
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andrewc92
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[*] posted on 8-20-2016 at 08:57 AM
Day 3


Today was the big day! Scheduled for the first slot, they took me down to the operating room at 7:30 to make the final preparations. Wasn't nervous much (this could have been the drugs). Last thing I remember before the surgery was two nice nurses inserting my epidural.

Woke up in the ICU afterwards obvious a little dazed. Wasn't able to make much of my chest, but could see the top of it and it looked pretty good. Scholar came in a hour or so later and asked me how I felt/ talked about the importance of breathing exercises/ and asked if I had seen my chest. He opened it up and wow! It did look a lot better. Rest of the day was spent dozing off and doing breathing exercises.
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[*] posted on 8-20-2016 at 09:01 AM
Day 4


The second day after the surgery was a bit tougher than the first day. In the morning, a physiotherapist came in to see how I was doing with the breathing exercises. I did a few lying down. She told me to get up a try some, but my body / blood pressure was not allowing it. Perhaps it was the language barrier, but when I told her I couldn't get up, she seemed pretty frustrated and left.

I did not sleep well the night before and the ICU is loud. If you're like me and are a light sleeper, you might want to get a white noise app on your phone to play in the middle of the night.

Pain wasn't bad today, the main problem was the lightheadedness when sitting or standing.
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[*] posted on 8-20-2016 at 09:07 AM
Day 5


Day 5 (3 days after surgery) was eventful.

I was scheduled to be taken to get an X-ray, but on the way down, I felt light headed and literally threw up when we got to the Xray room. They then took me back to my bed and told me to relax today. After getting some fluids and food in me, I able to walk around the ICU unit.

The most frustrating thing so far has been feeling lightheaded. The pain hasn't been bad at all, but of course, the constant influx of morphine and oxycondone might be able to explain that.
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[*] posted on 8-20-2016 at 05:57 PM


Congrats on having surgery in Berlin! Your plans worked out nicely, in good time too.

I'm guessing the lightheadedness and nausea is side effects of the oral Oxy and whatever dosage you're asking to be pumped from the PCA. Try wean yourself off the meds as soon as you can. In general, just eat as much as possible, drink lots of water and make sure not to over medicate. Incorporate some daily walking and you will be well on your way to recovery!

From what I've heard, the sandwich Nuss is quite a solid feeling repair from the patient's perspective. It's quite a bit of metal and therefore ample support. Just stay away from the twisting, bending etc. for a good few weeks and you should be safe!
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[*] posted on 8-20-2016 at 11:08 PM


Good luck on your recovery!



Modified ravitch with permanent titanium plates (on top of sternum).
My images:
Before http://imgur.com/a/ZfqYA
After: http://imgur.com/a/QXyWN
My journal: http://www.pectusinfo.com/board/viewthread.php?tid=10194
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[*] posted on 8-21-2016 at 04:57 AM
Day 6


Day 6 was far more successful. I was able to get down the X-ray room and get my fluid levels examined. After a little bit of talk between schaar and the doctors, they decided that I had removed enough fluid to get out of the ICU.

In general, felt less lightheaded today -- was able to move around the ICU. I am also very much looking forward to getting my catheter removed :p
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[*] posted on 8-21-2016 at 04:59 AM
Day 7


I'm back in the ward feeling pretty good. I still have the epidural and am on quite a bit of pain medication - but it's definitely less than before. Breathing exercises have been going well -- but of course, more is always better.
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[*] posted on 8-21-2016 at 05:02 AM
Blood loss


I spoke with Dr. Schaar and he said it is normal to feel lightheaded. Something that I didn't know coming into this operation is that, at least for sandwich nuss patients, you lose over a liter of blood! That is like donating blood twice -- quite a bit of blood. Anyone out there who is going home after having surgery done should definitely be taking some iron to help your red blood cells mature. It's a long process (I believe over 30 days) for complete maturation.
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[*] posted on 8-21-2016 at 08:25 AM
Days 8 - 12


Notes from Days 8 - 12

Each day I did progressively more exercise (In addition to the physiotherapy). On day 8 I walked around the hospital a couple times and did a loop around campus. On day 10 I walked to the center and back. On day 11, I started doing stair climbs and on day 12 I did more stair climbs. The point is, exercise gets better each time you do it.

I also had build up of 800ml of fluid on my left side that had to be removed on Day 9.


Things that are tough:
Weaning off painkillers. When I first went off the morphine, I felt kind of crappy. Mentally more so than physically. On day 9 when they lowered my oxycondon prescription, I had bouts of 8-9 levels of pain. That was more physical obviously. I would really recommend not trying to tough out the pain, especially when you're trying to sleep and recover.
Staying level headed
I have no doubt surgery was the right decision, but you go through a lot of ups and downs, especially when you're on all these drugs and oscillating through all these awful levels of pain. Having someone to talk to can be very helpful.

Almost there! Hoping to leave here soon!
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[*] posted on 8-21-2016 at 01:07 PM
POTS


Before surgery, I was loosely diagnosed with something called POTS. Some of you might have heard about it -- it stands for Postural Orthstatic Tachycardia syndrome. I was diagnosed with it, but the doctor who I saw said that I didn't really have it. Mainly I just had a fast heart rate all the time. Today, when walking to the center of town I noticed that I didn't have any POTS symptoms at all. I didn't feel lightheaded or particularly crappy when standing up -- even in the heat.

It is still too early to tell, but signs are looking good.
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[*] posted on 8-22-2016 at 01:13 PM
Day 13


Today, I was able to do a lot. I finally got above 4L on the spirometer after being stuck at 3.5 - 3.75 for a couple days. I also walked around town for leisure, as opposed to for a workout. In addition I managed to climb the building 6 times in a row.

Schaarschmidt came in and spoke with me in the morning. As my days as Helios are numbered and they can't "kick my ass anymore", he told me that my breathing exercises, physiotherapy, and keeping positive attitude will be even more important when I get home. He encouraged me to message him updates, as well. He is a great guy.

Today I got a look at my chest. To be honest, at the moment, it doesn't look great, but I know I have to take into consideration that I literally have no muscle in my chest whatsoever right now ,parts are still swollen, and I've lost probably 15 pounds. There is no doubt it is flat though and in the long run thats all what really matters.
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[*] posted on 8-22-2016 at 06:59 PM


Thanks for keeping us updated. It sounds like your recovery is going well. Your exercise ability 2 weeks after surgery is impressive! In the long run, you will be able to regain the weight and muscle. I'm cheering for you! Keep us posted.

J
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[*] posted on 8-25-2016 at 06:59 AM
Day 14 and Day 15


Day 14:
My last day in the ward!! Got taken down to get an Xray to check where my fluid levels were and, unfortunately, had to get them drained again. Wasn't a big deal and afterwards I was able to hit 4250 on the spirometer! Before bed, the nurse asked me if I had another X-ray yet and I told her that I not. They told me that after getting your lung drained, it's required you get a follow up Xray. Ok. So I got another X-ray. However, this one showed I had a little pneumonia at the top of my lung. I spoke with a doctor who told me that technically I wasn't supposed to fly out the next day. Big scare. After speaking with my parents I decided to stay another couple of days. However at 12 am, the doctor came in and told me that I was free to go on my flight the next morning. What a relief.

Day 15: Day 15 was mainly spent traveling. It was absolutely miserable, but not very painful. After 10 hours of travel I arrived at home and made up for it by sleeping 10 hours.
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[*] posted on 8-25-2016 at 08:57 PM


I hope you settle in well at home! Good luck with the lung!



Modified ravitch with permanent titanium plates (on top of sternum).
My images:
Before http://imgur.com/a/ZfqYA
After: http://imgur.com/a/QXyWN
My journal: http://www.pectusinfo.com/board/viewthread.php?tid=10194
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[*] posted on 8-27-2016 at 08:57 AM
Day 15 and Day 16


Day 15: Went on the bike for 30 minutes. I think my spirometer score has gone down a bit, so I really have to work so I can get it back to 4250. Overall pretty tired, but pain levels are going down.

Day 16. Swam on and off for 35 minutes. It was brutal, but it was a great workout. I am very out of shape. No soreness afterwards, which is a great sign.
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jeddie2
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[*] posted on 8-27-2016 at 09:54 PM


Awesome level of exercise! Way to go!



Modified ravitch with permanent titanium plates (on top of sternum).
My images:
Before http://imgur.com/a/ZfqYA
After: http://imgur.com/a/QXyWN
My journal: http://www.pectusinfo.com/board/viewthread.php?tid=10194
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[*] posted on 8-29-2016 at 10:21 AM
Day 17 + 18


Thanks Jeddie! :)

Day 17 + 18

On Day 17 I biked for 20 minutes and swam for 10 minutes. However I was pretty exhausted afterwards, so I decided to take Day 18 off from exercise. Day 18 was kind rough since I was so exhausted from the previous 3 days, but from my understanding that kind of the nature of this recovery.
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[*] posted on 8-30-2016 at 06:53 PM
Day 19 + 20


I walked around for 30 minutes on Day 19. It was a bit tougher than I would've liked. It almost felt like I regressed a little bit. Of course, the recovery isn't linear, but any set back is a little frustrating.

Day 20 was very good. I was able to work from home and go swimming / biking (20 minute swim / 10 minute bike). I recovered a bit more quickly than a couple days ago when I went swimming and biking. Baby steps!
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[*] posted on 9-2-2016 at 04:25 PM
Days 21 and 22


21+ 22: On day 21 I went swimming again, this time for 20 minutes. It's funny, while I'm exercising, I don't have much fatigue but when I'm walking slowly or even standing up, it is very exhausting. I would attribute this to the fact that when you're exercising, your heart is really working at 100%, while when you're standing, it isn't quite working as hard. Anyways, after swimming I was absolutely wiped. And now writing this (Day 22), I can still feel the effects. As much as I like swimming, it might be best for me to pace myself better. I think I have pushed myself a little too much. The focus now will be getting lighter exercise and more breathing exercises.

Also of note, I spoke with some of my local doctors the other week. They recommended I get off Ibuprofen as soon as possible -- which was just so stupid. God, doctors really suck sometimes don't they? Anyways, because I went off the ibuprofen it made it more difficult to do the breathing exercises and because of that my spirometer score has suffered. Lesson learned, though. Don't get off pain killers too quickly!
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[*] posted on 9-2-2016 at 11:38 PM


Hey Andrew,

I'm so sorry that I have missed this.

I haven't been on here in a while.

I had my NUSS done by the great Prof Schaarschmidt 18 months or so back. He is the best in my opinion.

Loving your effort on the recovery. Keep up the great work!!!!




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[*] posted on 9-9-2016 at 07:12 AM
Weeks 4 update


Weeks 4 update

Hi guys,

Haven't updated in a while. Things have been going well. I've been swimming / biking 2 out of every 3 days. My endurance is slowly coming back. I've also felt progressively better pretty much every day (some exceptions of course). My heart seems to beat a little slower and a bit differently, but it's still very early. In general, I feel far more calm after surgery than before. On Monday, I will get my blood results and my xray results. I will keep you updated on that.

Andrew
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[*] posted on 9-17-2016 at 02:45 PM
Week 5


Updates:

Things I have noticed:

My posture is much better than before surgery. I notice that I stand up straight without any conscious effort.

My fatigue is getting better, but I am still exhausted a good amount of the time. This was one of my main PE symptoms, so it is frustrating that it isn't resolved yet. It has only been 5 weeks though. Need to be more patient.

So far, I am doing well on pain. I have to take 2 x 400mg ibuprofen a day, which isn't terrible at all. I am very grateful that it appears I won't have any long term pain issues.

I have been exercising every day (alternating between walking and biking/ swimming). TO be honest, I think I get more benefit from walking than I do from biking/ swimming at the moment. Whenever I swim, I am exhausted for a day or so, but when I walk it takes a lot less time to recover.

Lastly, the appearance of my chest is looking better every week. I will give before / after photo soon. What schaar did was nothing short of amazing.

Thanks for the support guys, I'm hanging in there!

Andrew
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