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Sinister
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sinisters updated journal, nuss by pilegaard
Updated journal
Age -30
Procedure- Nuss
Date- 07/07/2010
Surgeon- Hans Pilegaard
Location- Aarhus, Denmark
My wife and I arrived in Copenhagen on July 3rd, via delta. We stayed two nights in Tiffany Hotel near central station. We both fell in love with
Copenhagen immeditely. It seemed as if everyone walked or rode their bikes everywhere. Weather was perfect, 70's and sunny with a cool breeze. It
was a neat two days.
July 5th- caught a flight from Copenhagen to Aarhus via SAS airlines. It was around 150 dollars round trip and only took about 30 minutes. The
airport in Aarhus is about
30 miles outside of the actual city. We took a bus from the airport to our hotel, cost about $20 each. They also take visa. We stayed at the
Radisson Blu in downtown Aarhus. Good location near the bus station and good restaurants nearby.
July 6th- met with Hans Pilegaard, pronounced pea-la-gard. He was extremely nice. He took a look and told me that he would more th an likely use 2
bars. He told me that I was asymmetrical and that made a "perfect" correction more diffiult. It was hard to hear those words at that time. He told
me that I have moderate rib flare and that he would be unable to correct that. I was mentally prepared for this already. We talked a bit more and
then I met with the anesthsiologist, nurses and phsiotherapist. Nothing worth noting in those meetings, except Hans really, really, really wants all
his patients to have epidural. Fine by me  stayed in the hospital "hotel" this
night. I got nearly no sleep as I was anxious and the bed really quite sucked. Good thing was that there was no suppository/enema.
July 7th- I went up to the ward and met with the night nurses. It was 0630. The gave me a pair of clothes to put on and tucked me into my bed.
Room 209, bed 2. I shared the room with Lars. Around 0830 they came and took me down to the operating theatre. The anesthesiologist started an iv
and epidural. Last thing he said was "think good thoughts"and I was waking up in recovery. It all seemed to happen so fast once the IV went in.
I only have my phone, so when I get home on July 16th, ill repost with the details, bit heres the cliff notes.
July 7th- pilegaard did nuss with one bar. No drains so I only have the two small incisions he uses plus a puncture where the camera was. Walked,
ate two bites, threw up. Initial haller 5.9.
July 8th- good day, Walked alot, ate alot, did get nauseated and threw up once. Pain levels low, epidural decreased.
*July 9th- epidural out, foley cather out, urinated, started oral pain medicine, chest cray looked fine, labs were fine, walked nearly three miles.
ate a lot. Temp normal
July 10th- labs still fine. Ate, walked, temp normal,discharged.
July 11th - flew from Aarhus to Copenhagen where we will be staying until 16th.
There so much more I want to share with you guys but it would take me forever on this phone, including pics.
I can't say enough good things about pilegaard. I would highly recommend him to anyone looking to get nussed. Aarhus is gorgeous, skejby hospital is
huge and getting bigger.
Attachment: before 1 (38kB)
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Attachment: before 2 (35kB)
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Sinister
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Heres the CT slides.
#1 showing the 35 degree rotation of the sternum
#2 showing the distance of the inside of the ribcage (275mm)
#3 showing the distance between sternum and spine (47cm)
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methusela
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Hi Sinister,
All I can say fom my reaserch the Prof is the man and the trip will be worth it.
The Prof will answer lots of questions re travel but you must be patient and wait for his replies (and you have to ask, he isnt a mind reader!)
I will be there shortly after you I guess I am arriving around July 5th
Good Luck
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Chelle
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Hi Sinister,
I was wondering if you're able to feel the 35 degree rotation in your sternum, by touching it? Were you aware it was rotated, before you saw the CT
scan?
I don't see the rotation in your pics where you're lying down. On your second pic, it seems like your 'dent' is quite low down, lower than I would
have expected for a rotated sternum. Do you think that's just the camera angle playing tricks?
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Sinister
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Hi Chelle,
no, I never suspected nor can I feel the rotation. If not for the CT, I would have never known. not sure about the camera angles, I'll try and get
more pics up soon.
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methusela
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Hi Sinister I am arriving on the 5th July so I may see you before you leave
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Sinister
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That would be great. Hopefully I'll be nice and tidy by then. I just wired the money over there today. I went to the bank to have them do it,
mainly for peace of mind. The exchange rate was 1Eu=1.26US with Bank of America. On Xe.com, the exchange rate is 1Eu=1.22US. It was roughly a
difference of $700. Plus the bank fee was $35. I am not familiar with Xe.com, although I've read some good reviews, but I am glad I went to the bank
and left with an actual paper receipt
We'll be flying Delta over there on June 19th and plan on staying in the Park Inn, near the TV tower, for two nights. They have some sort of
controlled base jumping tower set up on top of this hotel, I may have to try this out. Even though I am deathly afraid of heights, I dont plan on
being back in Berlin anytime soon and we dont have anything similar near here.
I've Emailed back and forth with Schaar a few times. He informed me today that he would be the one to do the surgery. He also told me I'd be sharing
a room with someone that speaks English. This is a pleasant surprise. Im very glad that Edgey and Randy, et al... have stayed active on this board
and shared their experiences, good and bad. Its helped me tremdenously to know what to expect and even what to ask.
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Psych_D
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He didn't say it was me did he? 
Still awaiting word from him unfortunately!
"For everything I've done, it's still not enough" - unknown
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Sinister
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Anyone know how to upload pics from phone? It says upload disabled.
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BullyBulldog
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Sinister, looks like you may have been the first of many to head from the states to Denmark to get the modified nuss with pilegaard. Looking forward
to seeing your pictures. Have a safe flight home.
Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.
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edgey
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I thought you were going to Berlin? What changed your mind? In any event it all seems to have gone well and your recovery seems very fast. We look
forward to hearing more about it. Well done!
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Sinister
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Edgey,
I was scheduled to go to Berlin but ended up not going for a few reasons. psychD picked up my spot.
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edgey
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Well we all look forward to hearing more about your experience. The speed of recovery from Pilegaard's method seems amazing. Your left the hospital in
Copenhagen at around the same time you'd maybe be getting out of intensive care in Berlin!
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Pecribz
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That is really a speedy recovery! Looking forward to seeing your results.
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Sinister
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I agree, edgey. I asked one of the nurses while I was there how many pectus repairs she had taken care of and her answer was "alot" lol. I then
asked out of curiosity how I was doing comparatively and she said that I was about like the average recovery. She said Pilegaard discharges most of
his patients on day 3, BUT she has seen some younger go home on day 2. I was amazed.
So a little more why I chose to go to Aarhus, since it goes hand in hand with that. It was very tough to decide a place. I knew a lot about Berlin
from all of you that had been there. I actually felt very comfortable going there and initially made a decision to to there. But there was always
one thing that made me very nervous about Berlin and was ultimately the main reason I switched. It is that Schaar keeps all of patients in the
hospital for 2 weeks. There were other factors involved, like the size of the scars and price, but nothing was as important to me as getting out of
the hospital as soon as I was ready. When I found out, through bully, then confirmed by pilegaard via email, that almost all of his 30+ y/o patients
go home on day 3, and seeing that through bully he was capable of producing Good results, I knew that Aarhus was a better fit for me.
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Sinister
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Also pecr, Pilegaard was always good about getting back to me via email in a decent time but I was his last case until the first week of August.
He's going on vacation. He did tell me that if I had any problems to email him, so I assume he'll be checking his emails some during that time.
Few things about the hospital. It's called skejby hospital, which is part of Aarhus university hospital system, which includes 5 other hospitals
there in Aarhus. skejby is a very large hospital. They do organ transplants and bypass surgeries there as well. They plan on doubling the size in
the next 20 years making it the largest hospital in Europe. There nurses, minus one night crew were all very capable and nice. Everyone of them
spoke good English. And they all know the "routine" for us pectus recoveries, which is pain meds, eat, shower, walk and sleep. Over and over again.
Food was quality. Breakfast usually had yogurt and oats with fruit. Lunch and dinner usually was a meat choice, soup, bread and cheese.
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BullyBulldog
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Sinister I'm glad my journal has been of help to you. I cannot praise pilegaard enough too. I truly believe that his procedure will be the norm in
8-10 years, he is truly leading the field in nuss repair. The days of long hospital stays with chest drains and getting getting fluid drained out via
puncture will become a thing of the past. When I first looked into the nuss it was the horror stories of plural effusion and pneumothorax with long
hospital stay and recovery that put me off, thanks to pilegaard that didn't happen. That said I was the unlucky b@@@ard that caught a crp infection
so had a rougher ride than I should have but I'd do it again tomorrow for my dent free chest. Just loving what honestly feels like a new life!!
Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.
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edgey
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Well, seeing as I was in the hospital in Berlin longer for my bar removal than you were for your bar installation, I think we have to agree with Bully
that Pilegaard's method may some day become the standard. I think anyone considering going to Berlin should give some serious thought to Aarhus.
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Sinister
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And Im not sure he realizes how good he is. He was almost in shock that I, being from the US, had seeked him out and was willing to pay up front for
his services. He must have asked me 3-4 times "how did you year about us?" Each time I told him I found his number on a toilet stall wall, lol. And
I never got him to laugh with it bit I thought it was funny.c But I told him I had been in contact with you, bully, and I was impressed with how you
looked and you reccommended him. You could almost see the pride on his face he
was genuinely a nice guy.
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Pecribz
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Thanks Sinister. Short time and fast recovery is really a great thing for every patient having nuss. Is his modified technique is different from
Schaar's ?
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Sinister
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Pecribz,
He uses shorter bars than Schaar uses. He also uses a stabilizer. And then at the end of the case, he doesnt leave in any chest tubes or anything.
His incisions arec usually in slightly different area as well.
Edgey,
I think so as well. He's done around 750 nusses with over 50 being in the 30+ year old category. Youngest was 8 year old, oldest was 53. He also
said that he uses 2 bars 70% of the time on his 30+ group and uses 1 bar 70% of the time on those younger than 30. Just some bathroom reader material
for ya.
Bully,
Ya, I can't thank you enough for posting your journal and how informative it was. We have really enjoyed our stay here in Denmark. this is truly a
great lace, both Copenhagen and Aarhus. Pilegaard told me that I could have the bars taken out in the states in three years, but the wifes already
decided that we are coming back here for that as well. Hard to argue with that. She was so nervous before the surgery that I felt bad for putting
her through it. But everyone here has been so accommodating to us that she now feels comfortable here and she really liked pilegaard as well, so
we'll be coming back.
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Pecribz
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Really looking forward to your photos Sinister, when you get back of course enjoy Denmark i am sure it's a nice place
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BullyBulldog
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Great stuff, it sounds like you're having a bit of a holiday too!
I was pre warned before I met with Hans pilegaard that he was very straight and to the point, I must have caught him on a good day as he was a true
gent. Both my wife and myself were put at ease instantly with him and I knew straight away I'd made the right decision.
I was speaking to dr Sydney haje the other week who attended the world nuss conference in turkey and he said everyone was very impressed with mr
pilegaard, I think you're right in saying he really doesn't know how good he is. Maybe that's a good thing so he is always looking to improve things
to make things better for the patient.
Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.
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Sinister
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pre-op pics
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Sinister
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Location: Oklahoma
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post op pics
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