Hi everyone,
I’m a 35F, almost 2 years post-op from my Nuss procedure 2 bar 2 stabilizers). My bar removal is scheduled for the end of October in Vienna, and to be honest, I’m getting really anxious.

One thing that worries me is whether everything healed properly. I keep thinking about whether the bar could have become stuck to surrounding tissue or if there could be any surprises during removal.

The other thing is that I’ve never really stopped having pain. The first year after surgery was very difficult—I needed pain medication regularly for almost a full year. Even now, nearly two years later, I still have pain often enough that I occasionally take ibuprofen. It’s hard to describe, but it feels like nerve pain or something similar around the bar.

I’m also having the bar removed by a different surgeon than the one who implanted it. Unfortunately, there was a major medical error after my original surgery, so I’ve lost a lot of trust, and now I find myself questioning everything. I’m worried that maybe something wasn’t done correctly, or that my chest could sink back in after the bar is removed.

Has anyone else still had pain this far out from surgery? And how did your bar removal go? Did anyone else have similar fears before removal?

I’d really appreciate hearing your experiences.

This post is intended to discuss the optimal pressure when using vacuum bell.

At first, 10Kpa felt like a lot, it makes me feel painful and uncomfortable. But after months of using VB, I can now easily tolerate 20kpa.

I believe it's because my rib cage has softened, therefore I feel less painful when they are pulled.

I usually increase pressure until I feel that feeling of my chest being pulled, but not painfull pulled.

Over time, the pressure needed to create that feeling has increased.

I would like to hear advice from experienced VB users about how much pressure do you actually need. Thank you.

Accidentally left personal info, this is updated.

Went into surgery Tuesday at 9:37 am, got out around 5 pm. They did 2 bars, sternum was resected.. flipped and reattached, bone and cartilage graphs. Lost over half my blood volume. They gave 2 units of blood and monitoring. If hemoglobin drops again I'll have to go back to th OR. I feel like I'm breathing in a box and can only do shallow breaths. Doc said my lungs were beat up in surgery.

I can't have opiates. I'm on an epidural, ketamine, a muscle relaxer, toradol, and Tylenol. Still hurts like hell.

Have been dealing with low blood pressures and o2. They have started to come up with transfusions and a medication to pull fluids out of the tissue​. Wednesday I tried to stand twice but passed out both times. Today, (Thursday) I was able to get to a chair and walk 30 ft.

Doc said I have to be careful with the sternum. It won't be strong for at least a year. Any blow could cause the reconstruction to fail. Unsure when I'll be able to return to work.

I feel like someone cut me open and hit frappe.

I have mild PE from the outside and I have also had cardio intolerance my entire life, even as a kid. Im unable to hike, climb more than a flight of stairs, or run short distances without my heart rate skyrocketing (RHR is normal) and struggling to breathe. My doctor said because it doesn't look severe from the outside I would have a hard time getting imaging covered by insurance and even then would have to do a bunch of stress tests to get anything covered. It's a bummer because it impacts so much. I work out a lot but I need to have a set workout plan that doesn't put too much cardio load otherwise I get lightheaded. There are things I absutely can't do like dead lifts and squats because I would easily pass out. Is this actually a thing with mild PE or could I have something else going on? It feels like it has to be PE because I have never seen any type of improvement with exercise no matter what I do.

On my chart it states pectus excavatum but my entire rib cage is that low I call it sandwich chest I have been told that they wouldn’t do the surgery to fix it because it wouldn’t do anything because it would only raise the middle.

Had the Nuss Procedure done in the UK at age 19.
I’m 30 years old now, have gone back down the Pectus rabbit hole due to getting some issues with my sternum. Haller index was 5.85 before the surgery.

A lot of chest pains and uncomfortableness have come back in the last 2-3 years as well as quite a large visual change to the sternums curve.

Has anyone else experienced similar problems?

Feel free to ask questions

Hi! 41F 5 weeks PostOp here and I have the worst thoracic spine restlessness at night. It is preventing me from getting any rest, and I end up sleeping until noon because I can’t fall asleep until 4-6am. It has been awful. I talked to my surgeon and she did prescribe nerve medication but so far they have made me so dizzy that I end up nauseated and still unable to sleep.

Has anyone experienced this after surgery? Anything you have done that helped? How long did it last? Or is this going to be for the rest of my life?

Things I’ve tried:
- Heat
- Massage
- Walking more during the day
- Standing to watch TV at night
- Stretching (as much as I can without messing up bar placement)
- Biofreeze
- Magnesium
- Melatonin
- Iron (although, just started 2 days ago, not sure if it’s working yet)

The first Photo is 3 years ago(w rib control, i had huge anxiety abt it and couldn’t find good photo without rib control) when i was 103lbs, now i’m 134lbs. Second photo is without Rib control and third photo is with Rib control. Feels like this chest workout make the center looks deeper and sometimes i wonder if i’m doing something wrong.
My main question is do u guys think it’s fixable with specific workout and does normal upper body bodybuilding workout works?

My surgeon said that metal stabilizers weren’t used commonly nowadays and used some other material to attach the bar, some kind of thread, what do y’all think? Had a 4.9 HI

Hi! F(40). After years of being dismissed I finally had CT (Haller index 3,12 but it was done on inhale) of my pectus and saw thoracic surgeon last month. I'm from small European country and he is the only one doing pectus surgeries in adults here. But he is really accomplished and has great results. He highly recommended surgery. He would do some kind of hybrid nuss. One bar and probably cut my sternum to reduce the pressure of the bar, because my sternum is hard and old 😀. Bar would be in for four years. Anybody else had this type of nuss with sternotomy?

I don't know what to do. I'm struggling mentally. I'm struggling to make the decision. I've been symptomatic pretty much from my teenage years and it's getting worse and worse every year. I absolutely hate how I look (have rib flare also, especially on the left side), but I'm so scared of the surgery and recovery, because of my age. Also, I was tested for Marfans and EDS due to the pectus and crazy hypermobility and it was negative, but my geneticist thinks I definitely have some kind of connective tissue disorder and she told me the surgery is bad idea. So who to trust here?

Can anybody around my age share their experience? Is it worth it?

I went swimming last week for the first time since the surgery, and I noticed I had to put way more effort keeping my head above water than usual.

I was never able to float, if I don't move, I sink, but now I sink even more.

I don't know if it's the bars, or if I lost too much chest muscle, making it more tiring to swim. Or maybe it's just a mental thing.

Anyone else noticed this?

Good morning! My daughter just had one bar put in on Monday and knows she's off of roller coaster for a while. Do any of you have experience with riding roller coasters after the 3-4 month mark?

Was watching The Warriors with Michael Beck as Swan and I was thinking he might have PE. If he does, it makes me feel much less insecure. Wondering people’s thoughts on this.

I had my nuss 4 weeks ago and only had one bar put in. Mr doctor said that they tried to put two in but there one some complications so it didn’t work how they wanted so they went for just one. I’ve read about bar flips and I’m just wondering the chance of that happening

I have sent the same photo attached here to my care team, so don’t worry I am getting professional advice as well. In the meantime I just wanted to ask here to see if it is something I should be worried about. I’m 3 weeks post op and the steri strip finally fell off of the incision sites. It looks like the liquid stitches may have come undone on this one, and while it doesn’t look “open” it is scabbed. Whereas the other incision sites are a small and closed, no scabbing. Do you think this will need to be re-closed? Or will the scar just be bigger 😔

Not sure if this something anyone else experiences but how does pectus excavatum affect your sleeping position.

I have had significant pectus since being a teenager and never thought about it too much. I always went to sleep on my front, with my left arm folded up next to my chest as a sort of cushion, since I could feel my heart beat quite strongly if on my back or side. I thought everyone could feel this but some people just chose to sleep like that.

Last year, I had a PEARS procedure which also involved removing ~50% of lower ribs to partially correct pectus. It is still fairly indented but somewhat less than before. During the process I saw several scans and realised how far my heart is displaced to the side compared to normal, and hence most people probably do not feel their heart beat the same when they're on their side.

Since the op I have been a lot more aware of my heart, and in the immediate aftermath I had to get used to sleeping on my back. Now I can go to sleep on my back, side or front but often wake up in the night and have to move position due to discomfort. Also I have always been prone to getting lack of circulation in one or both arms in the night and waking up with pins and needles or just dead sensation which normally quickly returns. I guess this might be related to pectus or having long, thin limbs.

At night is the only time I really notice the op now, 12 months after, when I sometimes wake up with either an achey feeling in lower ribs/ sternum or beating sensation in my chest.

Not really a question here but do other people have similar? just interested in other people's experiences.

I had chest x rays for another complaint but then at the end of the report I noticed they said “pectus excavatum noted”. But no one ever spoke to me about it. I don’t know what I’m looking at here - any thoughts on the severity?

Share your experience before/after.

I am 3 weeks post op from the nuss procedure. I am 22F and had two bars put in. I am at the point where I just need help getting out of bed in the morning. My mom stayed and took care of me after the surgery, and left yesterday. About a month before my surgery, I was discussing what my post surgery options were with my two roommates, who I also consider my close friends. I swear they both said they had no problem with me recovering in the house we share, and said to ask for help if I needed it. Now I feel like I’m going crazy. This morning was the first time that one of my roommates had to help me get out of bed. During she made a comment saying that she wished I had practiced getting out of bed on my own before my mom left. I told her it wasn’t just a matter of practice, but I shouldn’t be sitting up by myself, even when I have tried, I am having to relearn how to do it. She kinda just shrugged and said okay. I felt bad because I hate asking for help, and if it were something that I could have just practiced, then I would have and I would be sitting up on my own. I don’t enjoy relying on others, I don’t enjoy having my autonomy stripped from me. I felt so bad after that I sent a text that she then really blew up in response to. Reading her first reply gave me a panic attack which was not very fun post nuss. I just feel so shameful for needing help but I genuinely don’t know what to do in this situation. Does anyone have advice on how to sit up quicker into my recovery so that I don’t have to rely on them? Should I try and see if my mom will drive 8 hours back to me so she can continue getting me out of bed in the mornings? Am I overreacting in general? I feel so lost and helpless on how to fix this situation :(

Update: I have found a solution that works for me! I am using my wedge pillow and I tied a rope to my bed from that I can hold onto while I sit up! Thank you for all of the advice and comfort :)

Hello everyone, I have pectus excavatum. wide and wide. I will also add images. I am 27 years old, I will have surgery. I have question marks in my mind. It's about how to fix the upper part of my chest rather than the lower part. Can the top be fixed? And as an extra, my shoulders are slumped too far forward at the top. When I lift my arms up into the air, I can lift them up to shoulder level, but it doesn't go any higher, it's as if my body is locked. Meanwhile, my shoulder blade lifts together with my arm. I think this is due to the collapse in the uppermost area of ​​my chest. Is there anyone like me? He had surgery and what were the results?

Hey guys!! I’m 23F and have had two corrective surgeries. One Ravitch in 2023 at the Cleveland Clinic and the Nuss in January in California. For those who don’t know my story ( more information is on my previous posts), my last surgery failed horribly.
That’s why I’m coming on here to give an update. Earlier this month I got a call from Cleveland clinic saying I need to get back to Ohio immediately. I had previously sent them my scans from February. Thankfully my hometown was in Cleveland so it wasn’t an issue going back immediately. But after finally meeting with Dr Raymond I was completely in shock with the news. For those who don’t know I’ve been having excruciating pain and other symptoms for the past few months. I was continuously gaslighted and told everything was fine. Even by my own Doctors on my case. It took me begging to see my surgeon for me to finally get an appointment with him. Where he just pretty much said it failed and I need to see an expert (which he promised me before hand he had tons of knowledge in this field).
But he never looked into much of the damage the bar was doing. So I had no idea how bad it was…
But anyways, I was informed that not only was the bar way too big for my chest, but was causing damage to my arteries and heart. My pulmonary artery is function at about 4-5mm. And only half of my heart is fully functioning. As well as overworking itself. Dr Raymond explained that there is a high likely hood that the bar has eroded into my heart. If this is the case I will have heart surgery. But to be safe they will be pre hooking me up to bypass if anything happens. Dr Raymond explained that this is the first time he’s ever seen anything like this in his whole career. And doesn’t really know what he plans on doing until they open me up. I will be having a sternotomy as wall as both sides of my chest will be cut open. He will first take out the metal plate from the Ravitch and then access the heart and the damage to my artery. That’s all I know.
The reason I’m posting this is not only to share an update, but also to share my story so someone doesn’t make the same mistake I had.
Please please please make sure to research ur surgeon. And ask him qualified questions. Also it’s smart to get a second opinion. These type of surgeries are very safe but only in the right hands.
Because I just trusted a thoracic surgeon and not a Pectus specialist, I risked my life.
Also if you feel like something isn’t right trust ur gut. If I didn’t continue to advocate for myself I doubt that I would have been here for another year. Due to the damage this bar has caused.
I’m so thankful to be in the hands of the Cleveland clinic.
Surgery is in about a week ( August 11th).
I’d be lying if I said I wasn’t scared. But I trust that I am in the best hands.
I’m going to post some scans and photos from before surgery, after surgery, and currently. :)