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Author: Subject: Finally accepting PE and nuss procedure questions
Skiddy
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[*] posted on 10-21-2010 at 11:23 AM


Hi, Firstly welcome to the forum and please dont be anonymous to us we are all here to help.
Secondly I am a 40 year old male living in Nottingham who had the Nuss last October, but went private to Berlin Helios for it.
Please also bear in mind you are 18 and should recover a lot quicker. Us oldies have a harder time.
Pain is managed for the first few days with a catheter and morphine inserted either through IV or in the spine. After that tablets are used to control it. Generally a good few weeks is when you will get the pain.
Pain will come and go, sometimes lying wrongly or twisting brings it on. You should be able to go straight into your studying after about 4 weeks. I think you should tell your parents, it is a major operation. It is nice to have someone there to help you through the worse moments.
Inexperience in a surgeon is not good. 30 is also not a lot.There are places in this country that will do it but that is the reason I went to Helios, because they have done 900+ Nusses. Please do your homework on the experience side, beleive me it is worth it. This operation is quite a big one!
Sorry if I may have scared you but just want to be honest.
Best of luck.




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[*] posted on 10-21-2010 at 11:40 AM


Thanks for the quick replies :)

runs: I think it's pretty severe, I might upload a picture later but comparing it to others which have been described as severe it's pretty similar. However I have seen pictures of ones which are worse

skiddy: The problem is I have limited choice if I want to do it on the NHS. My parents are by no means poor, but this is something I want to do for myself and I don't want be a burden and go private. Paying for myself is an option but as a student it wouldn't be ideal (I do have about a grand saved up in a bank account though - which I presume is not enough). I would like to get in contact with previous people he's done work on, but unfortunately I'm sure there's privacy issues with that!

Also about the anonymous thing...I'll probably open up a bit in a while, but it wasn't untill a week ago that I had opened up about my PE to ANYONE, so I'm still pretty private about it I guess
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Skiddy
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[*] posted on 10-21-2010 at 11:49 AM


Hi mate. Dont feel bad, We have all been there. Feeling secret about it is normal. It's something we have all had to endure. Dont feel bad.
Do you have any health issues with it? Fatigue, chest palps, shakes, tiredness, chest pain or aches.
Is it severe?
You have found a good forum. This place has helped me so much. I have come to terms with this more now than my whole life. It will help you.
Please bear in mind the experience is needed because of the insertion of the bars. They need to be positioned corrected to give the best repair possible.
Also sorry but my Nuss was 24,000Euros which was very expensive. My brother luckily helped me with it. Thank god!




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[*] posted on 10-21-2010 at 11:55 AM


Welcome to the forum. Remember that we're here to support you through this whole process. I feel like I know the people on here even though I've never seen them and don't know much about anyone's real lives.

I completely understand about being private. I feel like PE has emotionally brutalized me. I have told NO ONE ever about my problems except for a few doctors. I've never discussed it with my parents or even my wife. I pretend like it doesn't even exist except when I visit the doctor. I told my wife that I was having chest pains and needed to see the doctor about it. The day is coming, however, that I'll have to fess up and tell her everything. I'm just waiting to get approved for surgery before that happens. The LAST thing I want is to draw attention to it unless I'm sure I can get it fixed. So, yeah, I get you on the whole privacy thing.

This board has been a breath of fresh air for me. I can say anything I want about PE without strange stares or people cracking jokes about me. Hopefully, you'll find the same support that I have.
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Skiddy
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[*] posted on 10-21-2010 at 11:58 AM



Hi, This is my before pic. It was taken Aug 2009.
before.jpg - 5kB

Here is now after my Nuss. Feb 2010

new2.jpg - 9kB

This is the xray and CT taken from City. Notice the bar in the xray. This bar was left. Notice the bar has come away through growth. My lack of trust on the NHS started at this point. This bar should have come out after 3 years. But should have been done at 15,16 not 6 years old. Also notice where my heart is in the xray. The heart should lie center just a little left. P.E does this. And regarding health issues, you may still get them even if your dad never has.




xray.jpg - 6kB ct.jpg - 8kB

This wasnt a push for you to show your pics. Just want to help you a bit.




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[*] posted on 10-21-2010 at 12:44 PM


Thanks for all the support in only being here for a few hours!

Skiddy your comment about experience needed for insertion of the bars worries me a bit, although I'm unsure on what to do now because I felt quite comortable today with it all seeming to fall into place! I'm thinking about perhaps still going through with it and then if I was unhappy with the results looking into private treatment, however I think it would really put me down going through the surgery and having poor results. This really is a difficult situation :puzz:
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BullyBulldog
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[*] posted on 10-21-2010 at 12:58 PM


Who is your surgeon in the uk?



Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.

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[*] posted on 10-21-2010 at 01:00 PM


Bully is your man. He has had surgery in the UK. He may know and perhaps share a different view on your situation. :)



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[*] posted on 10-21-2010 at 01:26 PM


Quote: Originally posted by BullyBulldog  
Who is your surgeon in the uk?

As awful as it may sound I've stupidly forgotten the name of the surgeon I spoke to today and I've been kicking myself all night for it. However on looking at the list of thoracic surgeons at the hospital, I believe it may be Mr Majewski (although I might just be tempted to think this because he wasn't English!), I may ring up the hospital tomorrow and see if I can find out
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[*] posted on 10-21-2010 at 11:24 PM


The fewer nuss surgeries a doctor has performed, the higher the risk for a variety of complications. With the nuss procedure, complications can be a very, very big deal.
A few months ago I was approved for surgery with a doctor who had only 30 Nusses under his belt, but I canceled it when I learned of his inexperience. It was a difficult decision, but I was fearful of complications.
I know that you are in a tough spot right now and don't have many options, but I strongly encourage you to seek other, more qualified, surgeons. I have been told by a Nuss surgeon here in the US that unless a doctor has 75 or more Nuss procedures under his belt, you are essentially a guinea pig. That was all I needed to hear to pull out and cancel surgery.
I wish you the very best in your quest for PE correction. Good luck!
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[*] posted on 10-22-2010 at 12:06 AM


Get some details together and let me know. Hospital and surgeon would be a good start and then you can evaluate your options.



Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.

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[*] posted on 10-22-2010 at 04:11 AM


Hi bully, confirmed it is Mr Majewski I spoke too,

The address is:

Mr A.M Majewski
Cardiothoracic surgery
Nottingham City Hospital
NHS Trust
Hucknall Road
Nottingham
NG5 1PB

I read that you had your treatment in Exeter on the NHS successfully, makes me almost wish I picked Exeter University as that was one of my choices! You also said you have a blog, where can I read this?

I'm currently trying to contact a few people who had the NUSS procedure done by him, to see how the results turned out.
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Skiddy
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[*] posted on 10-22-2010 at 06:19 AM


Hi, found a thread on someone going for a Nuss with your doctor.
http://www.pectusinfo.com/board/viewthread.php?tid=4569

Have you googled him too. May ease your mind or make your mind up...
Hope it helps.

But after reading the thread, was a bit worried about couple of things. I know that the bars should be in for around 3 years. 1 year is ridiculous. Also there should be only side incisions with a Nuss not centre. Dont know why centre cuts should be made??




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[*] posted on 10-22-2010 at 06:33 AM


Have you considered the ravitch procedure? A surgeon I had spoken with had about 450 success, He is completely Anti-Nuss tho but it is a very long way journey from london to blackpool?



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[*] posted on 10-22-2010 at 06:52 AM


Quote: Originally posted by Skiddy  
Hi, found a thread on someone going for a Nuss with your doctor.
http://www.pectusinfo.com/board/viewthread.php?tid=4569

Have you googled him too. May ease your mind or make your mind up...
Hope it helps.

But after reading the thread, was a bit worried about couple of things. I know that the bars should be in for around 3 years. 1 year is ridiculous. Also there should be only side incisions with a Nuss not centre. Dont know why centre cuts should be made??

Thanks for the help I've seen this thread and I have in fact been in contact with this person via email today; they should hopefully get back to me soon answering some of my questions. It seems he has told me different things, he told me the bar will be in for 2 1/2 years for me, and he did not mention anything about centre cuts.

Today I've been reading this thread about a respected doctor coming to London next month: http://www.pectusinfo.com/board/viewthread.php?tid=7902#pid7...
I'm trying to get into contact with the person who posted this since chipping in for travelling fees is probably quite affordable, and I would be happy to go to London for the procedure (if I can get referred there? I could perhaps tell my GP that I'd rather do the surgery closer to home)
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Skiddy
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[*] posted on 10-22-2010 at 07:23 AM


Hi, I know they have to refer you. Maybe a little nagging they may make arrangements to aid your requirements.
Good luck.
Plus also I would always have a Nuss over a Ravitch. A ravitch is open chest and a Nuss isnt. Less mess, scars etc. More chance of getting a decent result in my view.
I have had both by the way!!.




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BullyBulldog
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[*] posted on 10-22-2010 at 07:44 AM


i would strongly advise you dont go to Nottingham, they DO NOT have enough experience there to do the nuss IMO.

You have already found the thread about Pilegaard coming to London, he did my surgery in exeter and he is one of the most experienced nuss surgeons on the planet. Its an ideal opportunity to have one of the best operate on you whilst he visits London.

You will need to work very quickly to get a referral to the heart hospital as he could be coming over as soon as next month.

Pilegaard does a modified nuss which offers a quicker recovery over the standard nuss procedure. I highly recommend him from my own personal experience.

just type BULLY into the search tab and you'll find my journal on my whole experience getting my surgery paid for by the NHS.

PM me if you need any advice.

All the best mate.




Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.

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Skiddy
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[*] posted on 10-22-2010 at 08:21 AM


Thx Bull. I was hoping your Nuss Dr would be coming over again.
I would without question look into this Dr as he seems experienced.
My experiences with City have never been good at anytime. I wouldn't trust them.
But solely it is your decision mate. My best wishes to you.
I too am available if you need a chat or advice, I will try and help.




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[*] posted on 10-22-2010 at 08:39 AM


thanks for the PM, i have sent you a pm with my skpe and msn details we can chat in more detail on there.:)



Nussed in the UK (NHS) on May 21st 2010 by Hans Pilegaard at the Royal Devon & Exeter Hospital.

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[*] posted on 10-22-2010 at 08:57 AM


I don't know about the UK, but we were also told by several people to go with someone who has done at least 80 Nusses. My son was lucky to live in Boston where there are several good surgeons. We chose one who ALWAYS works together with another Nuss surgeon, so they had a lot of experience between them. Your best bet, if you go with a lesser experienced surgeon, is to find one that always works with a more experienced one. They do have to learn the procedure somehow. My son's surgeons told us up front they are always modifying and adjusting their technique to reduce patient pain and to make a better formed chest so in some ways all patients are going to be guinea pigs, which makes sense. This is still a relatively new surgery that will continue to get better. I only wish it were around when I was in my teens ;o(

Our son was 19 at the time of the surgery this last summer and he recovered very quickly to an active lifestyle. He had surgery on a Tuesday and left Friday noon for home with very little pain. He was expected to stay until Sunday evening normally. We actually took him shopping for a recliner right after he was discharged, but he did pay a little in pain for overdoing that. But the recliner was a godsend, along with hotpads and ice pads for the first few weeks. That's where he slept most of the time.

We joke that his quick and relatively pain free recovery was either due to great surgeons, Oxycodeine and percocet or TLC from his helpful girlfriend.

He was restricted for about 3 months from certain sports like football, tennis, and golf and he has to be careful about sports with a lot of twisting but he is back to playing soccer and running.

Good luck with your surgery.

Doug

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