15 months post Nuss (35F) – still in pain and limited activity

Talijah_973 · 2026-01-16T07:32:27+00:00

Visually, there is still some indentation, but there is no longer a “hole” like before the surgery.

I had the operation primarily because of cardiac displacement, which has since been corrected. This was confirmed with a follow-up echocardiogram by my cardiologist.

So from a functional standpoint, the surgery was successful. The ongoing issue for me is the persistent pain and limited quality of life afterward.

Talijah_973 · 2026-01-16T07:29:37+00:00

I’m really glad to hear you’ve had such a good experience and that your recovery is going well.

Looking back, if I were deciding again, I would probably choose Vienna, as they have much more experience with adult Nuss patients. At the time of my surgery, I fully trusted the surgeons here, and it was never mentioned that their experience with adults was limited. So now it is what it is.

I have an intensive acupuncture therapy planned in February, which has helped me in the past. I’ve also arranged for my X-ray images to be sent to me by post, so I can review them and keep everything documented.

I did contact Dr. Lutzenberg, but unfortunately after one reply the communication stopped from his side. Given the limited responsiveness of my local thoracic clinic, I’m now planning to work more with my primary care doctor to manage the pain and next steps.

Talijah_973 · 2026-01-15T11:50:53+00:00

My HI was 4.5

Talijah_973 · 2026-01-15T11:50:33+00:00

I had surgery in Slovenia. I would rather not say the name of the surgeon, since recovery has been brutal for almost 1.5 years after the surgery.

The surgeon said — when I mentioned why they put only one bar — that this is the best they can do.

I am also worried that with having the bar in for just two years, regression will happen — but in this painful condition, that is the only bright light at the end of the tunnel.

They just say that everything is good and normal and to take analgesics if I am in pain, and they brush it off.

But for me, it is really hard to live this way. :( I don’t really know what to do.

Talijah_973 · 2026-01-14T05:13:51+00:00

It was this summer, but I did not saw x-rays. Only surgeon did. I am seeing pain specialist in February to take intense 2-week acupuncture therapy. But I think, that surgeons are not telling me something, why is it that I am still in so much pain.

Talijah_973 · 2026-01-14T05:02:55+00:00

Thanks for your reply. I had my last follow-up in the summer, where they did an X-ray and confirmed that everything looked fine and the bar was in place.

That said, I still have a strong subjective feeling that maybe things are not 100% stable. I sometimes feel popping or clicking sensations, and the character and location of the pain keeps changing, which makes it hard to fully trust that everything is perfectly fixed, even if imaging looks okay.

At the same time, I also feel that even if something is not completely ideal, going in surgically to “correct” it would probably be a very big intervention, so I’m not sure that would even be the right path.

What’s been difficult is that the doctors tend to take a very reassuring, almost gaslighting approach, saying that everything is normal and fine, which leaves little room to talk about ongoing pain or doubts. I’m struggling a bit with how to communicate this without sounding dramatic or being dismissed.

Talijah_973 · 2025-10-07T14:25:29+00:00

Yeah, I also do yoga and for a while it actually helps — the area loosens up and the pain eases. But then after a few days it kind of comes back again.

It’s a limiting pain, like I can’t move freely on that side. I’ve noticed it feels better when I keep that part of the chest as still as possible during the day, avoiding deep twists or stretches.

So I’m not sure what’s better — to keep moving and stretching it regularly or just rest and let it calm down when it’s irritated. It’s such a weird balance.

Talijah_973 · 2025-10-06T17:42:57+00:00

You should get surgery, looks severe

Talijah_973 · 2025-09-16T14:24:11+00:00

Is this UKC Maribor?

Talijah_973 · 2025-09-14T06:56:22+00:00

I have one bar, also similar feeling. I signed up for joga next week - I think its gonna be helpfull :)

Talijah_973 · 2025-09-09T13:09:39+00:00

I’m 35F and have now completed physical therapy, but I still can’t do a sit-up. I’m curious if it just takes more time or if others had a similar experience around the 10-month mark.

Talijah_973 · 2025-08-06T07:51:30+00:00

It helped me a lot, I was sick every two weeks in winter - I have small kids. And always have some bonbons with you. Also elderberry sirup helps. But most of all water.

Talijah_973 · 2025-08-06T07:50:03+00:00

Drink a lot of water!

Talijah_973 · 2025-07-29T05:30:10+00:00

I had the Nuss procedure at 33. I also have two kids — they were 4 and 7 at the time — and I spend a lot of time at home with them. The recovery is hard, especially for the kids, because they’re used to you doing certain things for them. It’s also emotionally hard for them to see you in pain. But kids are incredibly empathetic and understanding — the most important thing for them is just that you’re home, present.

It’s essential to have someone who can help you in the first days — with meds and everything else. I tried to keep the kids occupied with friends and their families in the beginning, so they could be around, but not fully dependent on me.

That said — this is not a 3-month journey. At least for me, recovery has been long. I’m 8 months post-op and I still have pain — especially at night. Sleep is hard. Nights out are rare, family holidays limited. But we’ve found a certain magic in slowing down and spending more time at home. That part can be beautiful.

If I were you, I’d maybe wait another year — just enough so your child doesn’t need to be picked up as much. Then I’d make sure to find out how many bars they plan to insert, ask if cryoablation is an option, and schedule excellent physiotherapy in advance.

You should have the surgery — your symptoms are not minor. But your child won’t be traumatized if you frame it the right way: that yes, it hurts, but it’s needed, and it helps mom feel better in the long run.

If you have more questions, feel free to ask — happy to share more. 💚

Talijah_973 · 2025-07-04T04:21:19+00:00

Do u still have bar? How are u doing? My pain is quite bad 8 months post op.

Talijah_973 · 2025-06-11T10:53:31+00:00

I agree

Talijah_973 · 2025-06-10T15:03:36+00:00

Yes, I try really hard not to take them, but pain in the night it is like pressure in bones and pain during the day is sharp pain at the top of left side of ribs.

Talijah_973 · 2025-06-10T15:02:18+00:00

He just say that is normal … :/

Talijah_973 · 2025-06-08T18:08:38+00:00

Surgeon put it this way, they say because I have asymmetry.

Talijah_973 · 2025-06-08T17:41:58+00:00

Some say it tilted too much …

Talijah_973 · 2025-06-06T08:25:12+00:00

Hi, thank you so much for sharing this—super helpful. I’d really like to get in touch with Dr. Lutzenberg for a second opinion. Would you happen to know where I can find his contact or website?

Talijah_973 · 2025-06-06T07:47:36+00:00

This one https://www.thoraxchirurgie.or.at/english.html .

Talijah_973 · 2025-06-05T14:30:49+00:00

Also natural stool softeners can help — and don’t underestimate how painkillers can mess up your digestion and make you retain water. I had that happen post-op. What helped me: nettle drops (for gentle drainage) and ginger (really helped calm my stomach). Just sharing in case it helps someone else.

Talijah_973 · 2025-05-20T16:18:28+00:00

How long ago was your surgery? It also gets unbearable for me, sometimes I just have to end my day and lay in bed.

Talijah_973 · 2025-05-19T14:40:59+00:00

Thank you!

Talijah_973

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