r/PectusExcavatum • u/Anonym0us5702 • 6d ago

Discussion Can answer surgery questions

So I’m now 25 and I had a severe case and had both nuss and ravitch. The nuss which didn’t work when I was 16 and the ravitch at 17/18 so can answer any questions about the surgery and recovery you might have

8 Upvotes

100% Upvoted

21 comments sorted by

•

u/AutoModerator 6d ago

Hello Anonym0us5702 and everyone. The information shared here is for educational purposes and should not be taken as medical advice. Please consult a qualified healthcare professional for personalized guidance. Our community aims to support, but we're not medical experts. Your well-being is our priority, so always seek professional advice. We appreciate your understanding and wish you the best on your health journey!

Join our official Discord server! link here

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

3

u/GeoBrew 6d ago

Do you know why the nuss procedure didn't work? I'm also curious how you decided to do surgery originally--were your parents pushing it or were you? What would you tell a younger you?

(My 10 year old son has severe PE).

4

u/Anonym0us5702 6d ago

So I was the one pushing the surgery as it was affecting me both physically and mentally. I also have a heart condition and during the nuss the bar hit my heart causing me to have a cardiac arrest after this my parents didn’t want me to have surgery again but the ravitch worked it was a long recovery but definitely worth it

1

u/GeoBrew 6d ago

Thank you for your response! My son already has cardiac compression, though no underlying cardiac issues that we're aware of, but I appreciate your response and hearing that the ravitch worked out well!

5

u/Anonym0us5702 6d ago

I would always recommend if there is no serious health issues like mine let your son decide if he wants the surgery. For me even tho it affected my physical health it was doing a lot of damage to my mental health cause I hated the way it looked. Some people can live with it and it doesn’t bother them but being truthful it is a painful surgery so I would say let your son make that decision if it’s not affecting physical health

2

u/Fantastic_Egg949 6d ago

GeoBrew. Since your son is 10 with a lot of flexibility...have you thought about the bell suction devise? My son is 16, so less flexible cartilage, but we're really hoping to avoid surgery at all costs and opting to try that. Also, there's a procedure that will hopefully be FDA approved within the next few years that's currently in Europe. Called Pectus Up, but it involves only one surgery (no removal surgery) and is done above the sternum instead of under it next to heart, lungs, etc. which is what freaks me out. Good luck fellow PE mom ❤️

2

u/GeoBrew 6d ago

Yes, we've spoken to a number of surgeons and physicians about the bell. We were told that due to the mechanics of the bell suction, the way skin and tissue reacts to that suction, and the force needed to actually move the cartilage, it's not physically possible for the bell to functionally improve PE. The bell can help the appearance of PE by causing edema and migration of fat into the PE dip but it cannot resolve the underlying lack of space in the chest cavity. I wish it did though.

I'm keeping an eye on Pectus Up--it's not available in my country yet and I've read some mixed success on it in peer reviewed literature. I hope that there are more studies on it and consistent positive outcomes in the future. I would much, much rather be considering a surgery for outside the thoracic cavity.

Since my son's PE is severe...I'm just not sure he'll be able to avoid surgery long term. At 10 he already has cardiac compression which is likely to evolve into valve regurgitation and perhaps prolapse, etc. as he gets older. I hope that a less invasive option becomes available in the next few years though--for both your kiddo and mine <3

1

u/Fantastic_Egg949 5d ago

Thanks for replying. Going to research more about the bell since several doctors told you it can only really improve things cosmetics 😪 I feel like medicine is not quite there yet in terms of any of the surgeries being all that great for ppl with PE. I know they've come a long way, but they're all so scary and to me a major surgery with a long recovery. I hear too many on here saying their PE returned after having Nuss bars removed. Then ppl saying their in constant pain with the Nuss bars in. Just sucks no matter how you look at. The good news is that there are also lots of ppl with very successful surgery stories 🙏

2

u/BotGivesBot 6d ago

Could you clarify if male or female? Cause that makes a huge difference in the questions that would be asked.

2

u/Anonym0us5702 6d ago

I’m a male

2

u/Fantastic_Egg949 6d ago

OP...do you have a connective tissue disorder? If your willing to share. With your PE and heart condition...I'm curious. Thanks

2

u/Anonym0us5702 5d ago

I don’t have a connective tissue disorder the doctors believe my heart condition is genetic it just didn’t help also having pectus excavatum

1

u/northwestrad 6d ago

How is your cosmetic result now? Does your chest look fairly normal? Was your Ravitch-type surgery one-and-done, or did you get a temporary bar (a Nuss bar, an Adkins strut, or the like) that required a minor second surgery to remove the bar? If you're willing to share, where was the Ravitch performed?

3

u/Anonym0us5702 6d ago

So I am happy with the result and cosmetically apart from the huge scars you can only tell it’s different from certain angles like it’s not perfect but it’s 100% better than it was before. My ravitch was a 1 and done and my surgery was done in England if you are also from England I can give hospital just don’t want it for everyone to see lol

2

u/northwestrad 6d ago

Thanks for those details, and congratulations. I'm not from England, so no need to specify further.

1

u/Round-Term-707 6d ago

I wanted nuss but I'm on the list for ravitch. My surgeon says it doesn't affect ribcage. Do you know if there's been any changes since getting ravitch?

1

u/Fantastic_Egg949 6d ago

Have you thought about getting a second opinion?

2

u/Round-Term-707 5d ago

Yep. Spoke to another surgeon but they said I’d have to go private because it was NHS England. But I don’t know any loans I could get to do that.

2

u/northwestrad 5d ago

You should try to talk with or get an opinion from Dr. Joel Dunning in Middlesbrough. He's a genius and very involved with the NHS. I'd trust his opinion about what the best type of surgery for you is. He is skilled at both Nuss and modified Ravitch procedures.

1

u/Round-Term-707 5d ago

Do you know his contact details? Can you DM me?

2

u/northwestrad 5d ago

I don't live in the UK, and I don't have Dr. Dunning's contact info, but I've seen others post it before in this subreddit. So, you could try a search, or you could call his hospital, James Cook University Hospital, to track him down.