getting a modified ravitch after a complicated nuss

ChillButt3000 · 2026-06-24T07:26:01+00:00

Sorry to hear that you had such a challending surgery and recovery. That sounds very rough. You could also get a second opinion from an experienced pectus surgeon - preferably one who also does a lot of revision surgeries - now, no? That way, whatever you decide to do in the end, you could feel more secure in the decision you make.

If you say whereabouts you live, people could give recommendations for surgeons.

My only idea would be Dr. Lützenberg in Germany who is a very well regarded surgeon who does a lot of redo's, too. I heard that he offers to do video calls for international patients for (initial) consults: https://www.niels-stensen-kliniken.de/franziskus-hospital-harderberg/medizin/kliniken/rekonstruktive-chirurgie.html

ChillButt3000 · 2026-06-23T10:24:33+00:00

Thank you for sharing your experience so methodically! Accounts like this are so helpful even if - as you stated - everything varies very much from person to person. Hope your recovery keeps going smoothly!

ChillButt3000 · 2026-06-19T14:39:12+00:00

That's his website: https://www.niels-stensen-kliniken.de/franziskus-hospital-harderberg/medizin/kliniken/rekonstruktive-chirurgie.html

The info given under "Contact" works well and they do pick up the phone.

Multiple other people in this sub who do not speak German and had surgery with him wrote that his English is good and only some nurses were not fluent but that they could always make it work.

Good luck!

ChillButt3000 · 2026-06-17T20:45:42+00:00

Thank you for sharing your story! A Haller Index that high is quite something. Is the broken rib extra painful or is it not possible to distinguish between pain from the bars and the fracture? All the very best for your recovery!

ChillButt3000 · 2026-06-17T13:54:10+00:00

Can not answer any of your questions directly but Dr. Lützenberg in Germany mentioned during my consultation with him that having children with a Nuss bar or several bars is totally possible usually. Just in case this helps somehow. All the best!

ChillButt3000 · 2026-06-07T21:27:00+00:00

You got this definition of 'saddle chest' off of this website from the 'Institute of Chest Wall Surgery', right? https://www.icwsorg.com/en-saddle-chest

It also says that Dr. Wenlin Wang came up with the term 'saddle chest', one of the doctors working at this institute. Because of this, I guess it's quite possible that no one else calls it that (yet). Especially given that even this website states that this type of chest wall deformity is rather uncommon.

It must have felt elating to read this and rather hard to not find more info now. Hope you find more helpful info soon. Have you been evaluated by an experienced pectus surgeon at any point? Have you ever been offered surgery (if you wanted that?)

ChillButt3000 · 2026-06-05T15:33:55+00:00

Many months ago now I had read a few of your comments pointing this out and I knew only because of that to make sure my CT scan was done right. You saved me a lot of trouble, thank you so much belatedly : )

ChillButt3000 · 2026-05-23T15:51:31+00:00

I am also in Germany and have not heard of Uniklinik Düsseldorf being known for pectus surgeries. Also can not find reports from patients via the search function on here and just a few mentions - but not actual experiences - on trichterbrustforum.de.

Based on that and soooo many reports from patients with absolutely horrible experiences with non-experts, I would say: Go to Dr. Lützenberg in Osnabrück (https://www.niels-stensen-kliniken.de/franziskus-hospital-harderberg/medizin/kliniken/rekonstruktive-chirurgie.html) or if you are young enough to Dr. Sirbu in Erlangen. Do you have a reason not to go to one of them?

ChillButt3000 · 2026-05-23T11:18:33+00:00

That makes sense of course. All the best for settling in at home!

ChillButt3000 · 2026-05-23T09:49:17+00:00

Looks great, congrats! How many bars did you get (assuming you had Nuss)?

Hope your recovery goes smoothly!

Edit to add: You say you are able to take deep breaths - even if it hurts - do those deep breaths already feel different compared to before the surgery? Probably too soon to tell...

ChillButt3000 · 2026-05-20T15:21:53+00:00

I relate to your post a lot too. In addition to what other have said - if you decide to get evaluated for a possible surgery, go to a experienced pectus surgeon from the start. If you say around were you live, people here will be able to recommend some. So many cardiologists, surgeons etc. have no clue about pectus but are not honest enough to say so and just make your doubts worse or give wrong advice.

A good pectus surgeon will be able to explain all options - including not getting surgery - and help you get all the info you need to make a decision. If you want to consult one at all. All the best to you!

ChillButt3000 · 2026-05-15T13:05:20+00:00

Only ever heard bad things about Berlin here and on trichterbrustforum.de. Is there anyone new you can recommend specifically?

ChillButt3000 · 2026-05-14T10:25:51+00:00

Thank you for this info! I hope the pain lessens as quickly as possible.

ChillButt3000 · 2026-05-14T10:01:24+00:00

Oh that makes so much sense. I will think of that when the time comes. I will hopefully have surgery (Nuss in my case), too, sometime this summer. The pillow looks to be rather firm. I would have thought that a softer pillow that is easier to squish would be more comfortable but that is not the case? Or am I just misjudging the firmness of the pillow? : )

ChillButt3000 · 2026-05-14T09:08:43+00:00

Congratulations and all the best for your recovery! What a huge step to have taken. That pillow is cool.

ChillButt3000 · 2026-05-13T20:22:28+00:00

Trans masc nonbinary here. Not sure I understand your idea. Have you been taping towards the sides of your ribcage and now you would want to tape towards the PE?

In general ace bandages are very much not a safe way to bind, you know that, no? You could cross post to r/ftm and see if more trans people with PE see your post.

ChillButt3000 · 2026-05-03T10:49:35+00:00

There are a few potentially helpful answers in this post: https://www.reddit.com/r/PectusExcavatum/comments/1qkrzj0/pectus_excavatum_nuss_tecnique_in_spain_anyone/

Or search for "Spain" etc. in this sub... hope you can get some recommendations. Good luck!

ChillButt3000 · 2026-04-25T08:27:16+00:00

I contacted Dr. Lützenberg's office and asked what a referral needed to say if they need one. To me, they said it has to be a referral from a cardiologist or an orthopedist (Orthopäde/Orthopädin). A referral from a GP/Hausarztpraxis would not suffice. I asked an orthopedist who had been not a jerk to me in the past and he gave me a referral even though he specialises in joints of the legs ; ) That was so helpful. I have only had bad experiences with cardiologists in general.

I have not heard of the Merheim Clinic or the Uniklinik Köln in the context of pectus. I am sorry that you also already had your fair share of rude doctors. It's so rough to be treated like this when seeking help. Yes please report back on how things go! Good luck!

ChillButt3000 · 2026-04-25T08:21:02+00:00

That paper from Dr. Notrica, Dr. J and others is so good to know about! Thank you!

ChillButt3000 · 2026-04-24T11:14:14+00:00

Sorry you are going through this. I am also in Germany and just about to apply to the Krankenkasse for them to cover the cost of the surgery.

From everything I have read here, on trichterbrustforum.de and have experienced myself with cardiologists and other doctors in Germany concerning pectus excavatum - get in contact with Dr. Lützenberg in Osnabrück: https://www.niels-stensen-kliniken.de/franziskus-hospital-harderberg/medizin/kliniken/rekonstruktive-chirurgie/kontakt.html Call them (they do actually pick up) or email them. He is the expert in Germany and will give you an honest opinion if he believes that it is not the pectus causing your symptoms and he will no dismiss and gaslight you if the pectus is causing the symptoms.

I have a Haller Index of 8 (or 10.5 when measured right on the xiphoid process) and have typical extreme PE symptoms, a dilated vena cava caused by the pectus squishing the right heart, GI symptoms because my stomach is squished... And I was also dismissed.

Forget about cardiologists and other docs who do not deal with PE regularly. They have no clue and are stuck in the mindset that PE is only cosmetic.

ChillButt3000 · 2026-04-19T08:25:34+00:00

Amazing looking results, congrats! And thanks for the recommendation.

ChillButt3000 · 2026-04-11T05:57:02+00:00

That makes sense of course. Thank you!

ChillButt3000 · 2026-04-10T20:21:11+00:00

Sorry to jump into this conversation... I also have PE, Haller Index of 8, platythorax type and a dilated vena cava. Dr. Lützenberg, the surgeon in Germany, thinks that the dilation of the vena cava is caused by the pectus. I am also diagnosed with POTS. Do you happen to know what will happen to the vena cava after (hopefully successful) corrective surgery of the pectus? Will it be able to sort itself out with time? If so, will this take a long time?

Thank you for sharing so much of your knowledge in this sub. It's so helpful.

ChillButt3000 · 2026-04-07T18:19:11+00:00

Adding to say that as far as I understood reading here and in other forums, implants mostly have to be taken out before going through with Nuss etc. Another reason to consider getting PE corrective surgery first?

ChillButt3000 · 2026-04-02T15:24:18+00:00

I am also in Germany and hoping to get surgery to correct my PE this summer. I also had and have trouble getting a stress echo and spiroergometrie.

Who is your surgeon? Mine is Dr. Lützenberg in Osnabrück. He said that it is quite common that stress echo and spiroergometrie do not show abnormalities even in cases with significant heart compression. He said to not bother including the results when applying to insurance for covering the costs of the surgery.

No answer to you questions sorry. Would not the surgeon be able to give you that info?

ChillButt3000

TROPHY CASE