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Author: Subject: Tim’s journal – Nuss procedure with Prof Schaarschmidt, Berlin, Weds 11-Feb-2015
LondonTim
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[*] posted on 1-20-2015 at 07:42 AM
Tim’s journal – Nuss procedure with Prof Schaarschmidt, Berlin, Weds 11-Feb-2015



Basic facts:

Age: 35
Sex: Male
Condition: Pectus Excavatum (PE)
Symmetry: Symmetrical
Development: Had it from an early age. Not sure if from birth?
Haller Index: No idea!
Surgery Procedure: Nuss
Status of surgery: Operation date of Weds 11th Feb 2015 booked at Helios Clinic, Berlin, with Prof. Schaarschmidt

Story:

Hi guys,

My name is Tim & I live in the UK.

I think I have had PE for pretty much all of my life, but first really became aware of it when I was about 10 or so. I remember playing in the garden & my sister’s then boyfriend commented that I had a ‘sunken chest’. It stung me. I hadn’t thought about it at all until that point. Suddenly I was aware of it.

A couple of years later I was playing football in the park with some of my friends on a hot summer’s day & I took my shirt off. I noticed a couple of my friends commenting about something, and I guessed it was my chest.

Since then I have been a lot more reserved about exposing my chest. Sunbathing with my t-shirt on, etc. All terribly frustrating really.

It hasn’t stopped me getting on in life, as I have a beautiful wife & all is good to be honest.

Interestingly my sister had exactly the same PE before she had a Ravitch procedure in her late teens. We also have the same optician’s prescription & both needed the same 2 teeth veneered in adulthood. So there must be some genetic issues in there.

Also interesting that we have never spoken about it. We are close, but it is almost so taboo to speak of PE, that it is best ignored. When she went for her Ravitch my Dad simply said “she has something needing doing with her chest, but nothing to worry about”. And nothing more was said. Clearly I wanted to know as I was in the same boat, but it didn’t seem the thing to do to talk further.

I have finally taken the plunge to get my PE ‘fixed’, if that is the right word.

I have never in my life spoken to a single soul about my PE and just got on with it. However, on a recent holiday I decided to take my shirt off & got so many looks, that I decided I’m going to get it fixed.

So in October (2 months ago) I looked to Google for the answer. I searched for ‘sunken chest’ and found the mysterious term ‘Pectus Excavatum’. Wikipedia took me a step further, and then I found this and a couple of other forums. Wow. A gold mine of information, and what a relief to know that it wasn’t just me (and my sister of course!)

I have to thank everyone who runs & contributes to this site. You have all been a huge help to me – without even knowing it. Thanks a lot guys. Reading your stories has given me great courage & hope. The stories and comments from guys like Randy are so supportive. You guys really are great.

Anyway, back to the story… armed with this new information I wanted to work out what was best to do about this wretched condition.

I am a man who generally plays the percentages in things, always aiming to give myself the best chance of success where I can. So I have concluded:

- There is no ‘perfect’ solution. Some results look great, but often there are a few things you’ll have to live with, no matter what. But as long as things have significantly improved, then that’s great.
- There is no such thing as a single best procedure for everyone, but it seems like the Nuss procedure gives the best chance of limited scarring.
- There are a small number of doctors who have lots of experience in the Nuss procedure, and generally experience is a good thing to have, especially if results have been generally pretty good, so if you can, go for a more experienced person if the pennies allow.
- The Nuss procedure will hurt. Some have more pain than others, but generally the first week is pretty hard going, and then it eases off quite a lot.
- You will need to work quite hard at your recovery, but hey, the best things in life generally require a bit of hard work & that doesn’t faze me at all.
- There are risks with everything, but generally the risks of a really bad outcome are fairly small. The worst scenario you’d generally encounter is that the procedure gave a really bad visual result & had to be done again.

So, with these ideas in mind I spoke to 3 people: Dr Hans Pilegaard, Mr Kolvekar & Prof Schaarschmidt.

Really on the basis of experience I went with Prof Schaarschmidt. I have heard mainly good things. Ok there are some negative stories, but if you had done over 1,000 of these things, then I guess you’d find it quite tricky to get every one of them spot on. Especially as some of the PE conditions I have seen are fairly asymmetric & quite deep.

So I have booked an appointment to go to the Helios Hospital in Berlin Buch in February 2015, which is now not too far away.

Telling my wife about all of this was petrifying. I was physically shaking. I do a lot of public speaking & lots of business meetings, but nothing was even 5% of this. I had never spoken to ANYONE, not my family, friends, anyone. It was quite a relief actually to verbalise it. She was amazing & said we’d do whatever was needed.

I guess I am a little apprehensive if I give it a lot of thought, so I’m trying not to think about it to be honest.

I’ll keep a journal of my experience & I hope to get to know a few of you & your experiences over the time I’m on here.

Before pics:

http://imgur.com/a/YUDkR
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LondonTim
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[*] posted on 1-20-2015 at 07:43 AM


Sorry guys - realised I was a bit of a muppet & started my journal in the wrong area of the forum.

Doh!
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[*] posted on 1-21-2015 at 06:33 AM


I had my first Nuss-related dream last night. Up until now I had barely thought about it.

I dreamt that I had just woken from the operation & everything was all Ok. I was delighted, but felt very wary of things. Although I went back to work almost immediately & became very tired commuting to the office & couldn't make it.

Then I realised that I had just put on my golf cold-weather compression top. It caused the bar to pop right out of my chest!

Lessons learnt from this:
1) Don't go back to work straight after the Op. Best rest a bit. :)
2) Nor wear tight clothing immediately post op. :puzz:
3) Don't have such stupid dreams!! :D
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[*] posted on 1-21-2015 at 06:50 AM


I haven't had any dreams (yet) but I have had "sympathy" pains when thinking about what I'm about to do to my sternum and rib cage...
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[*] posted on 2-4-2015 at 04:43 AM


One week today, I should (fingers & toes crossed!) be being made dent-free by Prof. Schaarschmidt.

Am keeping very busy at work to try & not think too much about it.

I'm not nervous as I feel I have a lot of facts at hand, but am excited at the prospect!!
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[*] posted on 2-4-2015 at 05:32 AM


Good luck Tim!

I'm sure Prof. Schaarschmidt will fix it :D
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[*] posted on 2-4-2015 at 09:04 AM


Not long to go now, you'll be on the other side of it before you know it!


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[*] posted on 2-4-2015 at 12:26 PM


Hi Tim, good to see the last week countdown has started. The time will go quickly but stay positive and look forward to coming home. You will forget this part of the process quickly and even the week in Helios.

Stay cool and think positive thoughts - spring is coming!
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[*] posted on 2-4-2015 at 12:33 PM


Glad your wife is so supportive...that is awesome! Happy beginning to a new life :)

Gotta love the crazy dreams! I had one where my rib(s) came out...very bizarre...haha. Just stress...I recommend a full body massage before the surgery to relax ;)

I pray everything goes well with the procedure and recovery! Keep us posted!




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[*] posted on 2-5-2015 at 01:55 PM


Thanks guys.

You are all amazing on here. I really can't say how helpful & genuinely life changing reading about your stories & picking your brains has been.

To think that just 3 months ago I had no idea about the ins & outs of PE, other than I had a dent in my chest. I hadn't even heard of the Nuss procedure!

Within a few days the PE chapter of my life should be behind me & I hope & pray that I'll be on the road to recovery.

Really is hard to get your head around.
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[*] posted on 2-5-2015 at 02:02 PM


It really is eye opening and life changing. I stumbled upon this forum via another previous member's website. I always knew something was off with me and only knew a handful of people that had a similar condition. It was awesome to finally put a name to the condition and know that there are so many others like us that know exactly what we have dealt with and have gone through over the years. And to find out there were multiple options to fix the issue was the best news yet! Great site and great group of people. :)



"When I get sad, I stop being sad and be awesome instead. True story." - Barney Stinson
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[*] posted on 2-5-2015 at 05:27 PM


I am so excited for all the wonderful things to come for you!!! It's crazy because in the midst of your recovery, you wonder if things will ever return to normal...and then one day, they just do, but it's even better than it ever was before. Hands down, the best part though is that first moment you run your hand over your chest and there is no more dent. Despite being incredibly drugged up, I still remember that moment clear as day.

PE people take care of their own...that is why this forum is so successful :)




"Man never made any material as resilient as the human spirit."--Bernard Williams
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[*] posted on 2-6-2015 at 03:07 PM


Thanks everyone.

I emailed with Prof Schaarschmidt & he hopes to maybe put me first up on Wednesday morning. Possibly 8am.

Starting to feel very real now.

Interestingly my abs have been cramping all day, probably a last ditch attempt by my PE to say "I'm not going without a fight!" But I'm afraid PE, your days are numbered!
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[*] posted on 2-9-2015 at 10:19 AM


Arrived in Berlin today.

Off to Helios tomorrow for testing & pre-op discussion with Prof Schaarschmidt.

Trying not to think about things, but a little tricky.

Off to the gym!!
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[*] posted on 2-9-2015 at 05:04 PM


Tim! 2 more days! I am thinking that once you are done with your tests tomorrow, you will be so excited you cannot contain it. We are all here to carry you through. So excited for you and will keep you in my thoughts and prayers in the next few days. You will do amazing :D



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[*] posted on 2-9-2015 at 08:38 PM


Tim

Where do you live? You have 1 day to enjoy your dent, then it's gone for ever! Schaar is top in the world for a PE repair and other fixes. I'm praying your recovery is easy and swift. I want you to remember these words should you read them Pre-surgery. The post surgery stay in MCU is a bit tough as is the following few days at the pain meds are balanced for you. Recovery comes in stages that are not clearly marked as they pass. You must look hard for these imporvements, they will be there. In 91 days you will be close to normal with some weird thing remaining. With that said, Best to your surgical process along with your short stay in MCU.

Randy
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[*] posted on 2-10-2015 at 03:44 AM


Well I've not posted on - nor indeed looked at - the forum for some time, but somehow found myself here today. I just wanted to say Tim, as a fellow Londoner who took the road you're on now (seven years ago!), GOOD LUCK!!!!!

Cheers, and see you on the other side...!
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[*] posted on 2-10-2015 at 05:34 AM


Best wishes for tomorrow Tim!! Not long to go now! Let us know how you get on once you're on the other side of it.
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[*] posted on 2-10-2015 at 06:02 AM


I just read they you're already over there already! Best wishes for tomorrow, you'll be on the other side of it before you know it.

The first couple of days after the surgery might feel rough, but it'll surprise you just how quickly you'll feel better. Take all the medication you need to feel comfortable and to get you through the first week.

I found walking really helped me feel better (at the time it didn't feel great but keep at it.)
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[*] posted on 2-10-2015 at 07:52 AM


For those who have been to Helios in the past...

Horse.png.jpg - 26kB
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[*] posted on 2-10-2015 at 07:54 AM


Thanks guys.

Really, really appreciate the thoughts.

I've been here for a few hours.

All a bit confusing at first. Told to go to all different manner of places, but testing has begun.

Looks like I'm up for tomorrow PM, rather than AM, due to needing to do more testing.

I haven't met the great man just yet, but hopefully I will do soon.

Once again, thanks everyone.
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[*] posted on 2-10-2015 at 12:42 PM


Have a great evening Tim. You have the PE community thinking of you.

Wake up tomorrow and smile - it's a big day that will change your life. Think powerful and strong when you wake up and power through the day. Pain meds will take care of you when you wake up from the op and as Chris said, sitting up and walking are the goals that you are aiming to achieve in the first few days to indicate you are over the worst part and on the road to recovery.
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[*] posted on 2-10-2015 at 01:36 PM


Thanks Neil. Really appreciated.

Some notes...

Just had an enema. Wasn't expecting that! But guess all part of the process.

Also, just had to shave my chest. No fun for a bloke with a lot of hair on his chest like me! Interestingly the hardest part to do, by a mile, was my dent. Just couldn't get in there! Took ages.

Also, bring your own towel! Will need to buy one...
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[*] posted on 2-10-2015 at 02:01 PM


An enema? No fun...but I guess it is good to clean you thoroughly ;)

Good luck tomorrow! You will be dent-free shortly! :like:




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[*] posted on 2-10-2015 at 02:25 PM


Thanks Will. Means a lot my friend.

Just met Prof Schaarschmidt. Wow. What that man knows about the Nuss Procedure!! He has so much experience.

I asked all sorts of questions, and he was able to make me feel really at ease.

I am buzzing now. Feeling so positive about a dent-free future. Got to try & get some sleep now!! Won't be too easy.

Thanks again to everyone on here. I feel very humble to be one of your number.
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