Pectus Message Boards
Not logged in [Login ]
Go To Bottom

Printable Version  
Author: Subject: M, 20 - upcoming Nuss Procedure (01.09) at Berlin-Buch
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 8-24-2011 at 01:13 PM
M, 20 - upcoming Nuss Procedure (01.09) at Berlin-Buch


Hey everyone,
i got aware of this board 2 months ago and since then, it really helped me with my decision to go for the surgery. I have PE since ever, it's a pretty severe, asymmetric one (as you can see on the pictures). I thought about going for the surgery many times over the last 3-4 years but what probably kept me from doing it was that I didn't want to admit to myself that my life with PE is different from what it will be without. It effects me both in a psychological and physical way, but i guess i dont have to tell you guys about that since you all perfectly know what i mean. ;)

However, a couple months ago I contacted the Helios-Clinic. I got an appointment for 22.08 to talk to the Prof. Well, that was two days ago and now i find myself pretty amazed by the fact that i already will have surgery next week. Im really looking forward to it but at the same time im kinda nervous. Prof. Schaarschmidt told me that he will probably use two, maybe three bars. He also seemed quite optimistic about the correction of the asymmetry since he said it's just a question of experience. I know i wont get a 100% perfect result but i truly believe that noone would attain a better result than Prof. Schaarschmidt. Thats why im pretty glad to live only a few hundred kilometres away from Berlin.

Anyways, since this board helped me so much during the last months, the least i can do is to share my experiences too. I will keep you guys updated during my stay in Berlin and of course I'm gonna post post-op pictures.

For now, here are three pictures of my PE.

Peace

pectusvorne.jpg - 143kB pectuslinks.jpg - 145kB pectusrechts.jpg - 118kB
View user's profile View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 8-24-2011 at 02:01 PM


Welcome to the forum Lxnnxrt!

Your PE looks just as screwed up as mine. :) Almost identical I must say! I am having my surgery in Charité hospital september 15. Can´t wait to get rid of this dent!

Congratulations to your decision.

I am very interrested in your case as our PE is so similar. :)
All the best with your surgery and keep us updated as your journey developes.




View user's profile View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 8-24-2011 at 02:18 PM


thanks, peter! you're right, my PE looks quite similar to yours! I guess the battle between Charité and Helios is on! :D

edit: and of course congratulations that you finally got the approval for the surgery! :) Charité is a great hospital and im sure Dr. Lützenberg will do a great job!
View user's profile View All Posts By User
Skiddy
Contributing Member
*****




Posts: 1084
Registered: 7-30-2009
Location: Nottingham.UK
Member Is Offline

Mood: Wooppppeee all finished!!!!!

[*] posted on 8-29-2011 at 09:20 AM


HI lxnnxrt

Just want to say good luck. You are in good hands. Dr Schaar is a nice bloke. He really does care.
I had my Nuss in Oct 09 at Helios. Really glad I did. Its been life changing for me. Although tough at times, worth every sleepless night, every ounce of pain.
I too have 2 bars. A bit more rigid, but better in my opinion. 2 to share the weight!
Stay with it in the early days. The pain does go completely. You will wake up and the first thing you will do is look down. That moment will be priceless. Enjoy..

Before and After:
before.jpg - 5kB new.jpg - 11kB




View user's profile Visit user's homepage View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 8-30-2011 at 01:49 AM


Thank you, Skiddy! Its nice how people care on this site. Just read your story. Knowing what you've all been through will surely help me with my post-op-time. I'm still at home right now. Checking in at the Helios tomorrow at early noontime and Prof. Schaarschmidt then will take care of my dent on thursday! I think i have realistic expectations regarding what to expect the first days and weeks after surgery, so i had the chance to mentally prepare to that over the last days. I know what it all will be for. I'm just looking forward to get rid of that enormous dent! :)



View user's profile View All Posts By User
adamjr4
Contributing Member
***




Posts: 67
Registered: 8-28-2011
Location: Wisconsin
Member Is Offline

Mood: taking things slow but steady

[*] posted on 8-30-2011 at 02:59 AM


That's really a great mentality to have going into it. I went in with zero expectations, I had no clue what to expect pain wise, and I wish I had taken the time to prepare myself of what was to come. Just take solace in the fact that everything is manageable, the pain teams really do their best to keep the edge off, and pain is temporary. That new spanking chest of yours won't be.

I had my surgery 3 weeks ago, and I'm down to taking ibuprofen twice a day! It's amazing how quickly things go. You'll get some bizarre pains. You'll probably make a few calls in once your home to make sure what you're experiencing is "normal."(ie, you're not dying.) It definitely gets better though.

You'll be in my prayers!


-Adam. :D
View user's profile View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 8-31-2011 at 05:49 AM


Hey lxnnxrt,

All the best to your surgery tomorrow. What a feeling it must be waking up as a free man, liberated from the dent.

Keep us updated when you have strength!




View user's profile View All Posts By User
pectusmonkey
Contributing Member
*****




Posts: 133
Registered: 11-19-2010
Member Is Offline


[*] posted on 8-31-2011 at 09:50 AM


Good luck lxnnxrt

Quite a fine dent you have there. Glad you made the decision to repair. I bet your lungs and heart will thank you too. There is not a lot of space in there, everything is squished to the max.

Looking forward to hearing how it all went and seeing the after photos. Hearing how its all gone. Dr Scaar is one of those really good Docs, an artist, and the hospital is excellent.

See you on the undented side

cheers

Pectusmonkey
View user's profile View All Posts By User
nightg
Contributing Member
*****




Posts: 654
Registered: 4-24-2008
Location: New Zealand
Member Is Offline

Mood: Nervous

[*] posted on 8-31-2011 at 10:35 AM


good luck. yes looks a little like mine. I hope prof uses 3 bars on you. my results were good but still beleive 3 would have been better.
View user's profile View All Posts By User
Randy
Contibuting Member
*****


Avatar


Posts: 5281
Registered: 12-22-2005
Location: St. Louis MO
Member Is Offline

Mood: Always Pushing Limits

[*] posted on 8-31-2011 at 09:21 PM


your in great hands with Schaar, he fixed me 12/07. He is a fantastic human being, the best of the best. Im sure you have already found this to be true.
please post your pix, I would love to view them.
Randy




View user's profile View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 9-3-2011 at 02:44 PM


hey guys!
thank you for all the kind words. unfortunately, i didnt get surgery, yet. they did some checks at the clinic and unfortunately my blood pressure was (is) so high, that they didnt want to take unnecessary risks. now i have to take some pills to control the blood pressure and when my bp is normal i will go back to berlin and get the surgery.
bad thing is... they did an mri to check my heart just to have some before/after nuss data and coincidentally found out that my kidneys are full of cysts. that explains the high blood pressure. this diagnose really brought me down to earth with a big bang. being healthy (except for PE) is such a privilege, i think i never esteemed that enough. anyways, i will definitely go back to berlin! i'll keep you updated!

p.s: special sorry to peter: i would have loved to share my story with you, since our cases are so similar.. i know it would have made the job a little easier for you.




View user's profile View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 9-3-2011 at 03:58 PM


Hey Lxnnxrt,

That was bad news about the cysts and your blood preasure. I hope you can fix the cysts and that they are not getting bigger. Do your best to recover so you can get rid of the dent. I was thinking of you these days.

/Peter




View user's profile View All Posts By User
Skiddy
Contributing Member
*****




Posts: 1084
Registered: 7-30-2009
Location: Nottingham.UK
Member Is Offline

Mood: Wooppppeee all finished!!!!!

[*] posted on 9-4-2011 at 03:39 AM


Quote: Originally posted by lxnnxrt  
hey guys!
thank you for all the kind words. unfortunately, i didnt get surgery, yet. they did some checks at the clinic and unfortunately my blood pressure was (is) so high, that they didnt want to take unnecessary risks. now i have to take some pills to control the blood pressure and when my bp is normal i will go back to berlin and get the surgery.
bad thing is... they did an mri to check my heart just to have some before/after nuss data and coincidentally found out that my kidneys are full of cysts. that explains the high blood pressure. this diagnose really brought me down to earth with a big bang. being healthy (except for PE) is such a privilege, i think i never esteemed that enough. anyways, i will definitely go back to berlin! i'll keep you updated!

p.s: special sorry to peter: i would have loved to share my story with you, since our cases are so similar.. i know it would have made the job a little easier for you.


Thats sad news. Did they say how long it would take to go? Really hope it clears up for you so you can make the surgery. All the best.




View user's profile Visit user's homepage View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 10-11-2011 at 11:09 AM


Hey lxnnxrt! How are things going with your blood pressure and cysts that stopped you from being nussed? Any news?



View user's profile View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 1-10-2012 at 04:28 PM


Hey everyone, hey Peter!

First of all, im glad to read you are doing good, peter! how is your dent-free life back in sweden? :)

Second thing is, i made an appointment in berlin for another try on February 16th :) I take medications for my blood pressure and my doc says surgery won't be a problem for me. i have a final test on friday where my bp will be recorded for 24h and if the results are ok, nothing should stand between me and surgery. Can't tell you something new about the kidney-thing though... except that, retrospectively, im glad they found out about it. Of course it was a shocking diagnosis but i would have had to deal with it some day, anyways. I get my kidneys controlled 2 times a year and hopefully, they will work just as fine as they do right now for many, many more years. Who knows, maybe the Surgery will have a positive effect on my blood pressure and thus, on my kidneys :)

Anyways... I'm really looking forward to the surgery! I will keep you updated, if there is any news.

Cheers!




View user's profile View All Posts By User
Randy
Contibuting Member
*****


Avatar


Posts: 5281
Registered: 12-22-2005
Location: St. Louis MO
Member Is Offline

Mood: Always Pushing Limits

[*] posted on 1-10-2012 at 10:34 PM


lx

What type Kidney Cysts were found, what is the name?

Randy




View user's profile View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 1-11-2012 at 01:45 AM


Quote: Originally posted by Randy  
lx

What type Kidney Cysts were found, what is the name?

Randy


hey randy, i dont really know what types of cysts i have or if there even exist different forms of cysts. the thing is, that on both of my kidneys multiple cysts can be seen on mri / ultrasound. it's called polycystic kidney disease.




View user's profile View All Posts By User
Randy
Contibuting Member
*****


Avatar


Posts: 5281
Registered: 12-22-2005
Location: St. Louis MO
Member Is Offline

Mood: Always Pushing Limits

[*] posted on 1-11-2012 at 08:30 PM


lxnnxrt

PKD is one large field of study, that has no cure at this time. I read quite a bit of technical history, studies and current clinical trials on this disease. Here is the link
I was reading.

http://www.pkdcure.org/

Has Schaar given any indication that a Nuss repair with PKD is possible?

Randy




View user's profile View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 1-12-2012 at 12:59 AM


Hi lxnnxrt, nice to hear from you. Great you have a new appointment!

I also read a little about the PKD. Have you been to a specialist doctor about that issue and asked about Nuss surgery? Maybe it can be good to have different opinions than just from a PE surgeon? Just in case of kidney surgery with the bars in? I guess you have it all sorted out.

Yes life without PE is awsome. I can definitely recommend it :] It is now 4 months since my surgery. It took about 3 months of recovery for me to function near normal. I am still struggeling with pain after training but the only way is forward! I must get some meat over my bones again. Nights are still quite difficult after training with pain and sweatings but over all everything is getting better and better. I do not regret surgery in any way. In march i will travel back to Berlin for a 6 months check-up. 2012 will be a good year without PE! :)

Good luck with everything lxnnxrt! I am looking forward to read your posts.




View user's profile View All Posts By User
lxnnxrt
Contributing Member
***




Posts: 44
Registered: 8-23-2011
Member Is Offline

Mood: optimistic!

[*] posted on 1-12-2012 at 03:54 AM


Hey!
I talked about the surgery with my nephrologist and she doesnt see a problem with surgery and pkd. dr. schaarschmidt thinks the same way. the only thing that kept me from the surgery last september was the high blood pressure. the anesthetists didnt want to take unneccessary risks. noone ever talked about possible complications regarding kidney-surgery with the bars still in. first of all, i think the docs have considered that point, since pkd was diagnosed in berlin and dr. schaarschmidt knew about it and still wanted to operate on me (he actually wanted to do it even back then in september) and secondly, lets all hope i wont need kidney surgery in the near future. of course, there is always a risk, but right now, my kidneys still work ok (of course i had to do a lot of tests) and there are no signs for kidney-failure in the very near future.. usually pkd starts making problems between the 40th-60th year of age... and up to that point, i just want to live my life dent-free!




View user's profile View All Posts By User
peter_sweden
Contributing Member
***




Posts: 57
Registered: 12-28-2010
Member Is Offline

Mood: Nussed 15 sept. 2011

[*] posted on 1-12-2012 at 05:38 AM


Great! Lets hope february 16th will be the point towards your new dent free life!!! :)



View user's profile View All Posts By User

  Go To Top


Powered by XMB 1.9.11
XMB Forum Software © 2001-2011 The XMB Group
[Queries: 17] [PHP: 66.3% - SQL: 33.7%]