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afreed43 created a new topic ' PE Recurrence Opinion, 24M' in the forum. 7 hours 35 minutes ago

I had nuss with one bar when I was 16 and the bar removed at 18 (currently 24). I've recently been experiencing chest pain and a tightness in my chest for the past month. I have been weightlifting for the past year and perhaps the pain is a muscle or ligament injury. However, I have this hopefully irrational fear that my PE has started to re-occur. I also think it's possible the sunkeness to my chest is due to my pec major muscle belly being shifted laterally (i.e., not being close to my sternum).

I've attached some photos of now, so please let me know what you think. I've also included a photo from last year (with my girlfriend cropped out) as a comparison. Thanks.



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Levszan created a new topic ' Possible surgery...' in the forum. yesterday

Hello there! I am going to try and make this post short, thanks for reading and helping it really means a lot!
So, I am 16 years old. I am 192 cm (6"3) tall, and I weigh around 75kg's. I have a mild form of pectus excavatum. I've not done the Haller index text, but I am almost certain that it could turn out to be very low. But, it's still recognizable and it bothers me a lot. So let's get to the point...

I was in Hungary this summer to talk with Dr. Verebély Tibor, a very good surgeon for pectus excavatum. I don't live in Hungary, I'm actually from Sweden. But my family is Hungarian and we also have a house there so we thought we could try and have a visit with him and see what he says. He told me that surely, I can live with my pectus excavatum and that it's not that major. But he told me that he's here to help. (just to add it in if you're curious, I speak hungarian aswell). He's also done over 1000 Nuss procedures accordning to himself. So, the 15 minute visit was very informative. He told me that the vacuum bells don't work, and that they've tried, and that they have couple of vacuum bells laying around the hospital with no use of them. Vacuum bell was actually the option I would prefer, but it turns out that they don't work. Either way, I got a time for surgery for I think 26th of June 2019.

At the same time, we've been in contact with doctors here in Sweden. They are also willing to help obviously. But I'm pretty sceptical with the surgeons here. I think that Verebély is a more reliable choice (if I'm even going to do the procedure, more on that in a bit) than swedish surgeons. I think he's got a lot of experience if he's done more than 1000 procedures. Also, he told me about a new technique that one of his colleagues actually invented. The bar that is placed in your sternum could move around, but he invented a technique where a piece of metal fastens to the sternum, making it less possible to move around and so on. So for me he sounds like the better choice, but I want to know what you guys think about it.

IMPORTANT:

To the surgery. I want to fix my chest, and I know that the best choice is the Nuss procedure. But I'm scared of a couple of things. I've seen an article of a girl dying because of the Nuss procedure. (It's by the Daily mail if you are curious to read about it). And also, my friend who also has pectus excavatum has actually gotten his chest going out instead of in. It's sunken in the lower part of the chest, then it goes out, and back in as you come up higher. I don't really want that happening.... are the chances of getting a bad surgery big? Also is the surgery very dangerous? Is there a chance that the chest will look weird, like my friends'? I would appreciate you guys helping me with this. It's an important topic for me that's going through my mind everytime I see myself in the mirror. If you have any questions about the things I've said, then be sure to ask me and I will answer!

Thank you so much for reading I appreciate it!

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GodsChild created a new topic ' Heart races for no particular reason....anyone else?' in the forum. yesterday

Had anyone else experienced their heart racing for no particular reason. Pectus E is now a big pain in my arse. Parents were told by doctors in UK and Mass General purely cosmetic. Learned to live with the body image issues and eventually got implants which helped tremendously with bathing suits and left me free to just buy a bathing suit without the struggle of inserts to madk the assymetry. Now as I have aged a stiffening chest wall coupled with the weight of the impants I am told are the reason for my shortness of breath with moderate exercise. Also, recently have had tachycardia ( heart races)...a while back just began fainting for reasons no one could determine. I am scheduled for a modified Ravitch next year and the idea of a new life free from the ever present struggle to breath normally is so amazing. Too bad that they did not recognize the value of corrective surgery when I was younger but then again the medical advancements are also a blessing. Positive news for this post 50 pectus warrior from anyone as I mentally prepare would be welcome.

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Billy replied to the topic '28yr old male from UK - Post Surgery (Custom Made Implant)' in the forum. yesterday

Im currently going through the process, had my ct scan and waiting for them to receive it!

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rjmcbride created a new topic ' Bar displacement?' in the forum. yesterday

I recently had the nuss procedure done on me about 3 months ago, one bar with a stabilizer on the left side of my chest. A few days ago I woke up and the left side of my chest was hurting when I was in certain positions or when I touched near the insertion and all the way up to my armpit. I also noticed that where the insertion is ,and the stabilizer on the end of the bar , it was sticking out further then it was before the pain, or it may be swollen.
I was concerned that maybe the bar had shifted while I was maybe sleeping a wrong way or turning in my sleep. So I was just wondering if the bar got moved, or just swollen up and in pain, and if I should go in for x-rays.

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GillyxThexKid replied to the topic 'What exactly to expect after Nuss procedure?' in the forum. 2 days ago

notballing wrote:

GillyxThexKid wrote: Looks great. How is your pain? Did you go through with cryo?


Thanks! My pain was not bad while I was in the hospital, I think the highest it was while in the hospital was a 6. I did do the cryo and I think it has definitely helped. Last night was my first night back and while I was asleep I woke up in the worst pain. Probably a 8. It has been progressing quickly to being a lot better today. I walked around a lot in the hospital and went grocery shopping with my girlfriend today. I am very happy with it.


That’s great news and I know it has to be great to be free finally. I walk by the mirror and still can’t believe sometimes that it’s gone. So great to here the cryo helped as well.

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Simba has a new avatar. 2 days ago

Hi :)
Do you have any pre-op photos to share?
How many bars do you have in your body?
Is it painful?

:)

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notballing replied to the topic 'What exactly to expect after Nuss procedure?' in the forum. 2 days ago

GillyxThexKid wrote: Looks great. How is your pain? Did you go through with cryo?


Thanks! My pain was not bad while I was in the hospital, I think the highest it was while in the hospital was a 6. I did do the cryo and I think it has definitely helped. Last night was my first night back and while I was asleep I woke up in the worst pain. Probably a 8. It has been progressing quickly to being a lot better today. I walked around a lot in the hospital and went grocery shopping with my girlfriend today. I am very happy with it.

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GillyxThexKid replied to the topic 'What exactly to expect after Nuss procedure?' in the forum. 2 days ago

Looks great. How is your pain? Did you go through with cryo?

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notballing replied to the topic 'What exactly to expect after Nuss procedure?' in the forum. 2 days ago

UPDATE! I wanna share with you guys my results. Here’s a side by side



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Spit78 replied to the topic '28yr old male from UK - Post Surgery (Custom Made Implant)' in the forum. 3 days ago

This is great I go, thanks for sharing. I've been through loads of trouble try to correct my PE. NHS sent me to a surgeon in Exeter re nuss only to be told it would be 20-25k. Found the surgeon to be pretty rude too so wasn't interested.

Read up about Anatomik and contacted a surgeon in Nottingham but they want 16k which I don't have and gave me no info on his experience. I'm going to try your surgeon in Truro.

Thanks again. Great pics btw, looks like a great result.

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nolij replied to the topic 'Nolij's journey' in the forum. 3 days ago

Its now a little over 4 months.

Twisting my torso is getting easier but I still don't sleep on my side and honestly try not to twist my torso very much. Sneezing is still no fun and I try to avoid it at all costs but it at least doesn't feel like getting murdered (still hurts though). Coughing isn't as bad as sneezing but still not fun.

I went shotgun shooting over Thanksgiving and the recoil didn't hurt my chest but I did rest the gun high up against my armpit/shoulder area out of paranoia. That made me pretty confident about my recovery so I unfortunately overdid it the next day and thought I might have to go to the doctor. I was helping move some heavy pieces of furniture and twisted/lifted/pushed all at the same time as hard as I could which was a terrible idea. My chest didn't change but my incisions hurt like crazy. When resting my arms at my side, the incisions felt a little puffy like they were after surgery (but not nearly as puffy) and it hurt to rest my left arm against my left incision. If I wasn't out of town, I would've tried going to the doctor but it hurt less by the time I got home and feels basically normal again.

Still happy with surgery. Remember that even when you're feeling fine, don't overdo it.

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dh66 replied to the topic 'Newly introduced to diagnosis' in the forum. 4 days ago

Excellent news regarding your test results thus far. I get your concern and frustration over being told to watch your form when it's caused by the PE. This knowledge of the cause is new for you and would take some getting used to the idea, but yes, as someone mentioned earlier, there is a fight to be fought, you have goals and determination and I think your competitive experiences would strengthen you and give you the tools to help you work through this.

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Newtonian replied to the topic 'Newtonian's Journey' in the forum. 4 days ago

It's now been about 5 months. I'll have my 6 month xray in January.
One weird thing lately is it's become easier for my body to move around at night and I wake up on my sides or even chest down.
This has caused pain on my sides. Also, the scar tissue has made my chest very tight. I'm afraid I might stretch incorrectly and make things worse.

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CanadianPectus replied to the topic 'Surgeon with no experience. What should I do?' in the forum. 5 days ago

Don't take the risk of allowing a surgeon with no experience operate on you. It could make your situation a lot worse and painful.

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A visitor found a review helpful for Dr. Ellen Reynolds, written by wildwestmom 5 days ago

Dr. Reynolds is the most compassionate, competent, amazing doctor I have ever met. She answered all of my questions, never made me feel rushed, and...

kgregg84 is friends with JDOW94

Sparkleandflex replied to the topic 'Oh, Canada (Calling All Canadians!)' in the forum. 5 days ago

Did you end up finding anyone in Canada? I can't seem to find much about Gelfand either.. i did learn about a surgeon in Brampton who does 20-30 Nuss a year apparently though...

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Sparkleandflex replied to the topic 'Dr Irshad nuss procedure bad decision' in the forum. 5 days ago

Crazy since he is the only guy i can find in Canada who prefers two bars and doesn't even like stabilizers! I don't even know who else has experience doing Nuss on adults other than Gelfand and he seems more concerned with oncology... This makes me sad to hear! How are you doing now???

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Sparkleandflex replied to the topic 'Surgeon with no experience. What should I do?' in the forum. 5 days ago

There is no surgeon in my area that can do this surgery and I have compressed lungs and heart too. I honestly won't risk having a botched surgery. I'd start fundraising and looking for a surgeon who'd offer compassion services. Best of luck! Keep us updated!!

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GillyxThexKid replied to the topic 'Post-op 11/27 Nuss nerve pain' in the forum. 6 days ago

I’m at 1 month post Nuss and this week at mostly at night I have had this exactly as described minus the burn feeling in both sides near my incisions. I see the surgeon tomorrow and will update with any information I get about it.

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GillyxThexKid replied to the topic 'Newly introduced to diagnosis' in the forum. 6 days ago

Sparkleandflex......Nevermind my post earlier I found your post here and see now where you are :)

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GillyxThexKid replied to the topic 'Finally ready to share. Hello and Thank you!' in the forum. 6 days ago

Thanks Sparkleandflex. It’s been great getting to bond with my kids in this time. I wake up and go to work before they awake and like so many others come home after they are asleep so I’m so great full for this time. Ive been cycling with my son and not only has that helped a lot but that time spent with him has been amazing. So where are you with your process at the moment?

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GillyxThexKid replied to the topic 'Cryo-Ablation: Amazing So Far!' in the forum. 6 days ago

BedfordPark wrote: So what's your comment, Gilly?


It looked good when I previewed my post sorry about that guys. My comment took sometime to type up which I’m short on so I’ll do it shorthand this time and see if it post my comment this time. I’m 1 month post Nuss and really wanted to do cryo and didn’t due to not having enough firsthand information on recovery using cryo once the nerves start to regain their senses. I’d love to hear some updates from those who are older and had cryo in the time that they start to regain feeling in the areas they used cryo. If I had had some personal testimonials It would have helped me make an easier decision about using it so I know it will help others out there who are in that decision making stage. So glad to hear all these stories of people successfully freeing themselves from the chain that PE bind many of us in.

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Sparkleandflex replied to the topic 'Finally ready to share. Hello and Thank you!' in the forum. 6 days ago

You look great! And i can imagine how crazy you're feeling. But, you deserve the time off... Better to recover and get some walking in than push yourself too early and end up not healing properly... You'd really regret that. Mu thoughts are with you that you get the news you want though, but hey if you don't... Maybe its a good time to read a book youve always wanted or go for a walk somewhere you've never explored before because you had no reason to :)

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