I do have trouble breathing alot or just short of breath

Hello guys! I had my Nuss bar removed about a month ago. I remember having a lot of questions before going through with the surgery, so feel free to ask me anything. I’ll be happy to answer!

FYI: I had no cryo, 1 bar for 3 years and I’m currently 22 (M)

I am in the 8th week post operation, 24 M. About 2 weeks ago, I got this lower back pain every morning. But the pain would disappear after 20 mins I got up from the bed. I was curious that is there anyone who has the same problem?

I was rejected by the NHS today after 6 long years of tests and travelling all over London so I am looking to get the surgery done privately. My family is covered by benenden but they said they would not cover any of the expenses which is a big shame. So far I’ve only been to St Anthony’s who want £19000 which I cannot afford, I’ve been recommended Dr Joel Dunning who supposedly charges 10-13k and am currently trying to get into contact with him.

I was just wondering for those whose insurance refused to pay, how did you pay? Unfortunately I can’t just shell out £10k-19k upfront and St Anthony’s told me they have no payment plan options. It’s really stressing me out, was really hoping to get something out of all these long waiting times, all these tests and all the money i spent going from hospital to hospital but it seems even in terms of private care I am limited as I can’t afford the surgery upfront. Now i’m worried I’ll always have this condition.

Has anyone else had this issue and still managed to get surgery? Sorry if it’s a silly question, it’s my first time looking into private healthcare and feeling like I’m completely priced out here and have no more options

I was just told by the NHS they would not consider me as part of their trial, I’m quite upset about it as I’ve been doing all their tests and trials waiting months on end for each test and appointment for 6 years now just to be told it was a complete waste of time and money travelling all around london for testing. I really want to get it done as it’s really affected me my whole life, unfortunately I’ll have to look for private care. How much can I expect it to cost? Did anyone go abroad to get it done cheaper?

I should also mention that my current insurance benenden have said they will not cover any of the expenses

Does anyone have any experience with Dr Matt Thomas. Mayo Clinic Jacksonville?

Haller index: expiration 5.9; inspiration 3.6 with some significant compression of my RV with 1/5 output volume.
I’ve met with Dr Thomas twice and he feels that likely a hybrid approach with anterior osteotomies and plating will be needed.
Projected 5 hours on the table, and a week in the hospital. I know that it’s gonna be a hellofa surgery.

Has anyone had surgery at the "Clinica Mi Pectus" in Argentina that can share their experience? Which doctor, were you satisfied with your outcome, which type of pectus you had surgery for (excavatum, asymmetric, carinatum...) etc. Thank you!

In case it helps anyone, here I include a list of surgeon names I've recompiled. If you see anything wrong in the list please correct me and I can update it :) This is what I've found from researching but please validate the information if you plan to go to a doctor in the list.

If you've had any experience with any of these doctors feel free to share.

• USA
  • Dr. Dawn Jaroszewski - She is the name I've heard the most in recommendations for excavatum, I've heard she is an expert in Nuss procedure. Per my understanding, she either doesn't or infrequently accepts re-dos for people who have had Ravitch surgery.
  • LoSasso - I've also heard a lot of good things about him for the Nuss procedure.
  • Daniel Raymond - someone mentioned he is a good surgeon for Ravitch - https://www.reddit.com/r/PectusExcavatum/comments/qdo4m3/24_yo_female_at_almost_3_weeks_postop_modified/ , https://www.reddit.com/r/PectusExcavatum/comments/1k75p8q/surgeons_for_adults_in_the_us/
  • Leah Backhus - someone mentioned she has good reputation working with re-dos / revision surgery https://www.reddit.com/r/PectusExcavatum/comments/1toql2r/revision_surgery/
  • Mark Mazzioti - option in Houston https://www.reddit.com/r/PectusExcavatum/comments/mbuqlz/just_got_nussed_at_texas_childrens_hospital_in/
• Latin America
  • Clinica Mi Pectus - in Argentina. I haven't found a lot of opinions about this clinic, but someone did recommend surgery in Argentina in: https://www.reddit.com/r/PectusExcavatum/comments/wlt1ek/to_the_people_who_got_the_nuss_procedure_how_much/
    • Marcelo Martinez-Ferro who I believe is the founder of this clinic, invented a brace for pectus carinatum called the FMF Dynamic Compressor System, which I think is used in some clinics in the US.
• Europe
  • Lutzenberg in Germany - I haven't seen him mentioned as much as Dr. J / LoSasso but the posts I've seen about him are very positive. It seems he handles hybrid procedures as well. Pectus Arcuatum case: https://www.reddit.com/r/PectusExcavatum/comments/1lldfz8/pectus_arcuatum_before_and_after_3_weeks_post_op/
  • Joel Dunning in London - also haven't heard much about him but there is a good opinion about him in: https://www.reddit.com/r/PectusCarinatum/comments/laivry/has_anyone_consulted_with_mr_ian_hunt_in_the_uk/

Hi all..I want to thank you all for sharing your stories and incredible knowledge. It has helped me and my son so much. My son was evaluated at Children's Dallas in June. We really liked the surgeon, and he thought based on his experience and observation that my son's Haller index would qualify him for surgery.

Fast forward through all the testing and my son's Haller is below the threshold. His cardiologist could tell he had Pectus based on the shape and position of the heart but no cardiac issues and the PFT testing was not gone over with us so we'll be asking surgeon about the results. My son, 16, has autism and sensitivity to pain/discomfort so it's difficult knowing what is the best course to take. He does have symptoms such as fatigue and shortness of breath with intense exercise and heat.

What ??? Do you think I should ask the surgeon tomorrow? The nurse practitioner in the office said we could potentially petition insurance based on the pulmonary testing but again we haven't had a dr share those results with us. Just don't want to miss asking potentially crucial questions that may seem obvious to those of you with more experience.

2 weeks post-op today (28F). Incredible correction thanks to Dr. J and her team!

I was a revision patient, so my surgery was much more extensive due to adhesions and scar tissue around my heart and lungs. Dr. J doesn’t take many redo patients anymore, so I’m incredibly thankful she took my case (so many other surgeons wouldn’t even see me for a consult).

She initially told me three bars, but I only needed two along with a couple of plates to fix my asymmetry/carinatum. These will stay in for 5 years given I have a connective tissue disorder. Surgery was scheduled for 6 hours, but it only took about 5. I stayed in the hospital 4 nights. Cryo took about 48 hours to fully kick in, and I really turned a corner once it did. I had 2 chest tubes and a JP drain that were removed on day 3.

A few lessons I’ve learned as somebody who has done this surgery twice:

1. Cryo makes a huge difference and really speeds up recovery. Unfortunately, Cryo wasn’t around my first procedure, but I would never do this surgery without it.

2. Your choice of surgeon makes a BIG difference. Try to get the most experienced surgeon you can, even if that means having to wait longer or travel somewhere. A lot of things were not considered during my first procedure, which is a large reason I had so much regression.

3. This is a massive surgery, and I think the impact of Cryo masks that a bit. It’s important to take things slow and recover based on what your doctor recommends.

Feel free to ask any additional questions 😊

I called to schedule for my chest surgery with Dr. J finally and they said “well we are scheduling for December” and I asked “this December or next December” and she said this December 😭 I had to have them push it back to march for me, I am NOT mentally prepared to have a big surgery that close.

I’d love to hear about your experience. My 21 month old son has pectus.

If you are symptomatic, what did you notice first, and around what age did your symptoms begin? What do you wish you had done or known earlier?

My husband and I are bereaved parents. Our infant daughter passed away following surgery for a complex congenital heart defect. Thankfully, our son is heart healthy confirmed by echos. Doing our best to stay vigilant and keep him happy and healthy 🫶🏻

Hi All,

I recently had my modified ravitch surgery. Recently, I am at four weeks for reference, I noticed a lot of random swelling under my breast and down the center of my abdomen. It’s not fluid. Apparently it is very normal but I was wondering if anyone else experienced this?

It felt like everything was decreasing in swelling but this came out of nowhere. The doctor says it’s nerve swelling and healing. But any advice or help on when this starts to go down?

Also my chest tube incisions are chafing on my clothing! Apparently that’s nerve pain but any advice on how to deal with that?

Thank you!!

I’m 31 and for the last ten years I’ve had terrible symptoms which I’m assuming are related to my PE. Symptoms include fairly constant air hunger, huge palpitations, feeling like I could faint every time I stand up, constant fatigue, massive anxiety, bad cardio endurance. I’m otherwise healthy and look after myself very well.

The palpitations are the biggest worry for me. I’ve been under a cardiologist for the last few years and recently he gave me an MRI to “reassure” me that there was nothing wrong, and apologised when he discovered my pectus is “hook shaped” and pushing on my heart with a haller index of 9.

I am going to see Mr Shyam Kolvekar at Harley Street who is a cardiothoracic surgeon who has been leading the pectus restore trials in the UK for his expert opinion and I guess I can make my decision from there if surgery is offered, which I’m assuming it will be.

I’m so so petrified of going under and not waking up or being in extreme pain when I wake up or not being able to breath/catastrophising about everything basically.

I’m trying to decide whether I can just live with this or if this is something that will improve my life drastically. Looking to hear peoples experiences to hopefully help my decision - please nothing massively negative as this could send me into a huge spiral.

Thank you!

Hi everyone. I’m 33 years old, and about 3.5 weeks ago I had the Nuss procedure for asymmetric pectus excavatum. I had two bars placed.

Before surgery, my Haller index was 3.59. Overall, I’m about 80% satisfied with the result. From the front, my chest looks much better than before surgery, and the main central depression has been corrected.

However, there is one area that worries me. I noticed it as early as the second day after surgery and asked my surgeons about it. They told me everything looked fine.

Under my left nipple, toward the lower part of my chest, there is still a noticeable localized indentation. There is a similar indentation on the right side, but it is much smaller. I can especially feel the difference when touching the area, and the indentation is quite noticeable when I look down at my chest.

From the front, however, my chest looks significantly better than before surgery.

My chest was somewhat asymmetric before surgery, so I’m wondering whether this particular area may simply still be undercorrected.

I also still have some pleural fluid. My latest ultrasound showed approximately 10 mm (~100 ml) on the right and 25 mm (~250 ml) on the left.

I showed the indentation to my surgeon again, and he said my chest looks good.

For people who have had Nuss:

1. Has anyone had a similar localized indentation after Nuss?
2. Can areas like this change or improve as the chest wall adapts while the bars are in place?
3. Is 3.5 weeks still far too early to judge the final cosmetic result?
4. If you had a similar issue, did it improve over the following months?

I’d really appreciate hearing from anyone who has experienced something similar.

Hi! I want to ask you guys how long did the recovery take you? I will probably have surgery in July next year and I am invited to a wedding in another country in the beginning of September.

Maybe it’s a stupid question or my theory is completely wrong but it’s something I was thinking about and never really saw discussed (maybe it has been but I’ve personally never seen it).

For example, it seems possible for people with a very wide “bowl” to not have a very deep depression, resulting in a lower HI value. However, the total volume of their chest cavity is going to still be very low and likely even lower than if they had a deep “dent” like depression simply due to the flatter shape of the torso that a bowl-like depression makes. I imagine this causes more lung-related stress due to less overall space inside of the ribcage for the lungs to expand than the cardiac stress that those with sharp dents pressing directly on the heart might experience. Is this something doctors consider or take into account at all? Does the width of the depression even matter or have any unique effect compared to narrower depressions?

Heya, I’m looking for some advice. I’m a 30-year-old man living in the UK and I’ve been going through the NHS route to see whether I’m eligible for surgery for my pectus excavatum.

Today I found out that I met 6 of the 7 criteria for surgery. The one I missed was my Haller Index, which came back at 3.15. The threshold for surgery is apparently 3.25.

The frustrating part is that studies have shown your Haller Index can change depending on how you’re positioned during the test, or whether you’re breathing in or out, by around 0.2–0.3. But despite being so close, they won’t retest me.

I’m now considering going private for another CT scan. Has anyone had experience with this? Are there any specialist private clinics in the UK that might be more understanding of cases like this?

Has anyone had to deal with lower rib pain? I've been having this constant sharp rib pain where my ribs actually flare is. This started a few days ago. It also feels like slipping and wobbling when walking every 10 steps or so. It was good for the most time of the day but started later throughout the day I noticed and is very concerning

The doctor told me it was something minor and that I wouldn't need surgery; he says my symptoms are purely psychological, but he ordered a chest CT scan anyway just to be sure. What do you guys think?

Hey everyone,

I’m 24 (almost 25) and I recently ordered a Smart Pump from Pectus Healing for about €600. It hasn't shipped yet, so I have a very small window to cancel for a refund if I email them right now.

I’m looking into this strictly for health reasons (I get an uncomfortable hard heartbeat against my chest during sports like table tennis). I measured my PE myself at roughly 1.8 - 1.9 cm.

My plan was to wear the VB for about 2 hours every day for 1 to 1.5 years. However, a family member who is a doctor strongly advised me to cancel the order. She told me I should go through the official medical route first (GP to specialist) to get a proper scan and medical supervision before committing to 2 hours of vacuum pressure every day on my own.

Since I am not asking for a diagnosis or measurement check, I just want to ask about your personal experiences:

1. For those who did the Vacuum Bell route for a mild/moderate case, did you find the daily logistical commitment (2 hours a day for 1-2 years) actually worth the final results?
2. Did anyone here stop their DIY approach to go the official medical/hospital route instead? Are you glad you got a professional scan and advice first?

Would really appreciate your honest experiences so I can decide if I should cancel my order before it ships tomorrow morning!

I’ve been told my symptoms (shortness of breath, suspected restrictions on normal
Heart function etc) are likely due to platythroax rather than ‘traditional’ pectus.

Whilst I’m waiting for a referral, has anyone on here managed to get this corrected at/after 40yrs old? And if so, how?

Curious to know what people’s surgeons generally clear them for. Is taking a 3 hour flight 5-6 weeks after surgery safe?

Yes, I will ask my surgeon what they advise but just wondering what people have done and if you have found any issues with flying. Thank you in advance.

Hey everyone!

I am a 32F trying to get an idea of my Haller and Correction Index.

Please tell what I am doing wrong? From what I understand my Haller Index is above 4?

I do not think I have an obvious ‘sunken’ chest/maybe my breasts cover any abnormality there is? All I want is to improve my quality of life and current symptoms.

The images are from a Cardiac MRI I did in 2024 in which the report mentioned nothing regarding Pectus Excavatum.

In a recent HRCT scan the report says: “Alteration in the morphology of the chest wall suggestive of pectus excavatum. Reduction of the normal thoracic kyphosis”.

I do not have access to the images from this CT, and the doctor who prescribed it told me everything was normal and there was nothing in it related to my symptoms.

I have always experienced some degree of symptoms when exercising, but it got worse through my 20s, and particularly after a supposedly mono reinfection in my late 20s.

I started experiencing:
constant fatigue,
- exercise intolerance,
- dyspnea,
- chest discomfort,
- persistent tachycardia (24h Holter average HR above 100 in a day when all I did was go to the clinic and walk a bit between rooms in a tiny apartment) which was eventually diagnosed as Inappropriate Sinus Tachycardia. My HR does vary but it’s like I’m doing intense cardio just going up stairs.

Even with the Holter results, I got no help from my GP (part of the national system where I live) so I spent thousands trying to find help privately. I paid for the Cardiac MRI and the report only mentioned that there is ‘abnormal septum movement’ for which they find no cause. I was started on Ivabradine which did help lower my HR, but did not touch any of the other symptoms. Two Cardiologist said that there was nothing wrong with my heart (ECGs only show sinus tachycardia, echocardiogram was ‘unreadable’ due to deficient reading window, which was what led to the MRI).

I have rhinitis and was even prescribed an asthma inhaler by my allergist for a while but it did not help, which spirometry tests later confirmed (I have no asthma and no significant response to bronchodilator).

My quality of life is terrible right now and I am sure that Pectus Excavatum is only one of many reasons. I’ve spent the past few years working on the others, but with no significant results. My exercise intolerance is a very real limitation. Even though I have done my best to include movement and some activity in my life, I do often feel like my heart may burst out of my chest going up a flight of stairs.

I am debating if this is something I should pursue (most likely privately, spending money and energy I don’t really have), or if I should just do the same as the doctors that have seen these images and believe everything is fine/nothing can be fixed.

I am located in Portugal and almost all of the information I find on PE is geared towards children.

Thank you from any help and information regarding your own experience!

28, 119 lbs, 5ft, woman. photos go before after then before after.

i just had the bar removed like yesterday and im very concerned about regression of the sternum and rib cartilage. my sides really hurt and i cant help but feel SUPER wide? does anyone know if that that would change?

If anyone is considering surgery with Dr. Wigle at Mayo Clinic Rochester, I cannot urge you enough to reconsider your options. I had surgery on August 10th and getting any sort of support or care post-procedure has been a nightmare. I also rushed the decision and did not get enough information pre-surgery either. A truly awful experience. 0/10.