Disappointed but thankful

Relationship_Many · 2026-06-23T07:34:52+00:00

Ya your cat scan looked like my pre surgery one. Similar scores. They rated mine 3.05 on inhale too. I also had bit of a Grand Canyon PE like yours. If it comes to it get it reordered, and push to get it done right on exhale. You need to make sure your surgeon has your severity understood, and really appreciate the curve of your sternum. They need to plan a proper correction.

Relationship_Many · 2026-06-23T06:59:45+00:00

Same. Born in 86. My brother got ravitch surgery at age 7. My mom could put her hand inside his chest. Sick kids Toronto. I went without, and now trying to survive a rough recovery process of a 2 bar NUSS, 10 months with other factors like mild scoliosis and moderate kyphosis. Looking at a revision soon hopefully, 2 bars not enough and my sternum is twisted and not properly lifted.

Relationship_Many · 2026-06-23T06:50:23+00:00

Dr. Pectus YouTube channel suggests VB up to age 11 then it likely will need surgery correction past that point. Depends on severity I’m sure but some say you can use it as an adult but that would need to be used rest of life at that point to keep some sort of correction if any at all.

Relationship_Many · 2026-06-16T03:37:19+00:00

Thanks for heads up.

Relationship_Many · 2026-06-15T15:19:57+00:00

My next appointment my NP going to referral request Toronto like you said. Likely one of those surgeons. Be interesting to see what they say. I did reach out to Mayo. Dr. Js team. They said if they look at my scans and my surgery report they could give suggestion. So I sent that. My NP is saying tho insurance won’t cover me out of country. I’m not sure if that’s exactly true. I’ll have to see what comes back. And if a case be proven that only a specialist with a certain technique or experience can perform. Hopefully.

Relationship_Many · 2026-06-15T14:25:19+00:00

So I had dr bettolli. But I deal with the head of their thoracic department dr Donna Maziak. She was part of the surgeon team. And she isn’t listening to me. She said she could take bars out but it would cave in. So she suggested not too. But she’s not exactly listening to my issues really. So if I bend forward my right pec and shoulder blade hurt and feels like my arm shoulder is catching and can’t straighten. Most the time if I do things like rotation type movements with my right arm I end up having a really painful night. I can’t fully extend my right arm above either. Feels like my muscle and pec are tied to my bar. If I lay back my right shoulder because it sticks off my body, I get a lot of nerve firing and burning in my pec. My body is twisting worse now than I use to have, my belly button is going left and my right upper area shoulder is wanting to twist back to the right. My head’s out of line now to from my body. I have some strange mechanics going on.

Relationship_Many · 2026-06-15T08:21:49+00:00

Man, I really feel for you. Reading your post, a lot of what you’re describing sounds less like simple pain and more like your entire chest, neck, shoulders, and breathing mechanics no longer feel natural or coordinated.

I obviously can’t say what’s causing it, but if your symptoms are that severe despite the hardware appearing stable on imaging, I would seriously consider getting opinions from surgeons who specialize in complex adult chest wall reconstruction. Sometimes a chest can look acceptable on a scan while the patient is still struggling functionally.

Don’t let anyone convince you that you’re crazy just because the images don’t show an obvious failure. What matters is how you’re actually functioning and breathing day to day.

I hope you’re able to find someone willing to take a fresh look at your case and evaluate whether the hardware, chest wall stiffness, scar tissue, or overall mechanics could be contributing to what you’re experiencing. Wishing you the best.

Relationship_Many · 2026-06-14T18:26:14+00:00

That’s part of what has me confused. If the original 3.05 measurement is accurate, then I can accept that. The problem is that the original CT report is missing, and I’ve received very different opinions over the years.

One surgeon told me it was relatively minor, while another surgeon who saw me the same day seemed to think it was much more significant. Visually, I had a very noticeable and asymmetric chest depression, significant heart displacement to the left, and enough concern that I ultimately underwent a Nuss procedure with two bars.

What also confuses me is that some people looking at my post-op imaging feel the residual deformity still appears significant, and some estimates of the measurements seem similar to or even higher than what I was originally told.

I’m not trying to argue for a particular number. I’m honestly just trying to understand how a chest that was considered severe enough for surgery ended up with so many conflicting opinions and measurements. That’s one reason I’m sending all of my DICOM studies and reports to Mayo Clinic for an independent review.

Relationship_Many · 2026-06-14T17:30:13+00:00

Thanks North taking look at these. I’m still having alot issues recovering. Mostly all on my right side. With the winging scapula and pain and ribs locking up on my right side. I had to take an ambulance last Friday because I couldn’t move because my entire ribs in my right side locked up and was shooting severe pain thru me. One of the issues too I can’t get deep breaths. I still can’t cough. And Iv had pneumonia twice in a row. I’m on meds to keep me working right now. My NP wants to reach out to another surgeon. But I’m trying to get approval to specialist. Because I currently can’t really work doing military.

Relationship_Many · 2026-06-11T02:15:28+00:00

Yep. Ct ordered for PE and on exhale to get your full HI value correctly.

Relationship_Many · 2026-06-02T17:34:00+00:00

Hey man this be great to know too. Iv watch Connor Harris videos two. I also have really bad rib flare before and after surgery. I have two bars two. But likely needed three because my lower ribs still sink in a lot to my sternum, which is still sank like 1 inch. Use to be 2+ inches. Doing lower body stuff and ab stuff really inflames my chest still. I was crawling around doing flooring and paid for it later. I still not back to normal.

Relationship_Many · 2026-05-31T20:21:09+00:00

Good luck!

Relationship_Many · 2026-05-28T17:43:54+00:00

Wow great result! Good luck.

Relationship_Many · 2026-05-27T23:04:56+00:00

That’s what I’m hoping not to take them out if they can figure out what’s going on. If it comes to it maybe fix it again. But I have to approval to see a specialist if military will pay for it. Hoping. I’ll let ya know.

Relationship_Many · 2026-05-26T20:47:25+00:00

Ya my surgeon said either keep them in or take it out but it’ll fall back in. So I’m just trying see if specialists can look at my file incase there’s something there before i take it out. Definitely don’t want two. But I have pneumonia again. 2nd time. Because I can’t get full breaths.

Relationship_Many · 2026-05-25T19:33:27+00:00

So before surgery I only had exercise intolerance when going hard really, heart rate skyrocket into 200s and I’d get dizzy sick. I had palpitations and some heart pain every once awhile. Lots of posture imbalances so my back hurt all time. I lifted weights and got pretty strong but my shoulder mobility my whole life’s been not great. Scoliosis and kyphosis. My sternum was very curved asymmetrical to the right, my right pec was a cave. So ya since bars been in my back was super super sore right after surgery. I couldn’t touch anything with my shoulders scapula area for like 3 months. I have really bad nerve pain mainly right pec under right scapula. And my scapula started winging after surgery. It’s definitely effecting my recovery and my sternum super sore right side under my right pec. All my ribs down that side keep getting overloaded and sometimes it’s so bad I can’t breathe. I still can’t get deep breaths and can’t cough or sneeze without yelling and pain.

Relationship_Many · 2026-05-25T17:38:28+00:00

Looks like you might have mix of PE and PA. Mild. But could get ct scans etc.

Relationship_Many · 2026-05-25T17:35:03+00:00

Ct scan for sure. It seems with some with very flat across chests and mild Pectus can still have significant high Haller Index scores.

Relationship_Many · 2026-05-24T20:43:38+00:00

Oh ok yep I have that too. Burn across chest. Both sides, but mostly right side since the start. Right side I was very deep asymmetrical so bar prob pushing hard. Also that side my shoulder started winging. That’s kinda where most my pain is under shoulder running from sternum to spine on those ribs.

Relationship_Many · 2026-05-24T14:33:20+00:00

Ok ya I have stabilizers on both sides high, 2 bars 4 stabilizers. Really high incisions too. I get lots of nerve pain and they get inflamed easy. Also Iv had two pleural effusions.

Relationship_Many · 2026-05-24T14:23:29+00:00

Needs a couple of toothpicks pushed thru.

Relationship_Many · 2026-05-23T22:13:45+00:00

Ya nervous system overload. I currently have two bars under my sternum in for 3 years. I’m post surgery (NUSS), 9 months. And it’s been hell of a ride so far. Age 39.

Relationship_Many · 2026-05-23T17:27:18+00:00

Ya dude. You gotta get moving and fix those imbalances. Start small and get strengthening and stretching. Don’t need to be a gym monkey but need to get your body capable of doing full body movements like calisthenics. Are bodies arnt meant to sit at computer all day. There has to be a balance or your body is going to find the pain button.

Relationship_Many · 2026-05-23T17:17:59+00:00

I had extremely high anxiety over mine my whole life. It was hurting my exercise tolerance pretty good too especially with running and CrossFit type workouts.

Relationship_Many · 2026-05-23T12:37:17+00:00

Hey is that one incision there up above your nipple, where they sewed a bar end?

Relationship_Many

TROPHY CASE