Pectus Message Boards

Failed Ravitch and Nuss with Dr. J

PandorasChest - 2-20-2017 at 05:33 PM

Hi fellow pectus people. This is my first post so I'm just gonna go all out and try to give an accurate description of my experience with pectus excavatum and two corrective surgeries.


I've haven't always had such a difficult time with my chest. It looked okay for a long time when I was kid; there was a dent but it wasn't that noticeable. As I went through puberty it got progressively worse, but I was still basically cool with it. However, in my late teens and early 20s it grew a lot more pronounced. I had no idea what pectus excavatum was or that there were thousands of people with chests like mine, but after doing some research I realized I wasn't alone, and there were surgical options.

Having reviewed some personal stories on this website, I thought the Nuss would be the way to go. Pectusinfo is very pro-Nuss and anti-Ravitch, and my naive 21 year old self thought that the medical community would feel the same way. Obviously that was a mistake; the couple of surgeons I spoke to strongly advised that I have a Ravitch procedure.

Brian Kogon at Emory University agreed to operate on me. In the pre-op consultation, we barely spoke and he only looked at my chest for two seconds without feeling the cartilage or discussing much about the surgery. But he promised me that my chest would look normal, and I believed him. I was just happy to put this whole pectus thing behind me as soon as possible (I thought). In hindsight, I should have trusted myself and pursued the Nuss, but unfortunately experience is something you don't get until just after you need it.

I had the operation a few months later in 2015. I'll never forget waking up in the post-op room to the sickening sensation of sinking into my chest. Within a couple of hours of the surgery, my chest began to fold into itself, with a ridge on the left side of my sternum and a trough on the other side. The doctor had told me that a support strut or internal dissolvable mesh would not be necessary because my ab muscles would hold my chest in place as it healed. Obviously he was wrong. My chest only got worse over the next few months as my sternum twisted off level. It looked pretty gnarly.

I would advise anyone reading this to not have a Ravitch procedure. But if you do, do not have it with Dr. Kogon. He was arrogant before my surgery, and after it became obvious my chest wasn't going to heal well, he was self serving and dismissive. In the end I had an uglier chest with a higher Haller index than I went in with (3.3 to 3.7).

Anyway, I did a lot more research after that and decided that Dr. Jaroszewski was the person I needed to see. So, about a year after my Ravitch, I flew out to Arizona to talk with her. She told me that a revision was possible, but she would not cut any cartilage. I thought that given how badly I'd healed I would need a hybrid technique, but apparently there was no malunion present.

She performed the Nuss revision in November 2016. I feel so much better now than I did just a few months ago. I can breathe so much more deeply now, and my chest looks a look better than it did.

Nonetheless, I am still pretty unhappy with the cosmetic results. Dr. J got me a cosmetically superior result to the ugly failed Ravitch I had with Kogon, but it's still far from perfect. My sternum is pretty much in the right place, and the lower ribs look decent, but ribs 2-5 are still really deformed (the ribs from which cartilage was removed during the Ravitch). I can feel an obvious crest on the left where they meet my sternum and a dip on the right. Dr. Kogon did something to my lower ribs too (I think he sliced into them without excising cartilage) and they healed badly, and the revision didn't do much to improve them.

As a rule, Dr. J cuts as little as possible when doing revisions. As I understand it, this reduces damage done to the patients cartilage at the expense of a potentially better cosmetic result. I am thinking that maybe another surgery could improve the appearance of my chest. The ridge and trough thing that my chest is doing looks pretty bad.

Additionally, I'm convinced that posture and mental and emotional wellbeing are linked. It's hard to achieve peace of mind when you're uncomfortable in your own body, and I'm still uncomfortable in mine. No matter how I sit or stand, I always feel somewhat uneven and asymmetric; it's really unsettling. For me, the possibility of feeling more at home in my own body is enough to consider another operation.

I emailed Dr. Schaarschmidt last month and he got back to me quickly. He is asking for good pictures taken by another person, CT scans, documents and tests, etc. so I'll see what he says after I send him what he needs (there's no one around I would be okay asking to take pictures of me so that will have to wait a little while). Dr. Schaar is the only surgeon I would consider going to. He's the best in the world at fixing broken chests.

However, he might be unwilling to open me up and start slicing for the same reasons Dr. J was. I really hope not.

Here's a few pictures. Some pics paint my chest in a great light; others....not so much.


IMG_0244.JPG - 105kB

IMG_0246.JPG - 87kB IMG_0252.JPG - 84kB

IMG_0249.JPG - 85kB

IMG_0254.JPG - 93kB

IMG_0264.JPG - 98kB IMG_0266.JPG - 89kB

Friskyseal - 2-21-2017 at 12:33 AM

PandorasChest,

Thank you for sharing your story. I can certainly relate to some aspects of it. The board is "anti-Ravitch" as you say for good reason. The consequences of a failed Ravitch can be extremely devastating and it is unfortunate that there are still surgeons who are performing it irresponsibly. Sadly as you illustrate, the reason it still happens is that patients, young ones in particular are impatient and overly trusting. They want their chests fixed as soon as possible and aren't able to fully appreciate the potential consequences. I feel sad that despite our efforts to educate potential patients that this continues to happen.

Here's the thing though, in your case. It seems that you were able to avoid the more destructive aspects of the Ravitch in that you don't describe any sensations of sternal instability or maljoined ribs. These problems can lead to serious symptoms of chronic pain, discomfort, and difficulty breathing. Correct me if I'm wrong, but your concerns seem to be primarily cosmetic. And I have to say, based on your pictures, Dr. J did a great job with the revision and the structure of your chest looks normal. I do not see any pectus present at all; your chest looks great! It's only the scar that is the issue. If this is indeed the case, I don't think any further surgery beyond a scar revision is indicated or advisable. As you know, messing with the skeleton can be very consequential and risky and unless there is a clear benefit to be derived it can easily do more harm than good. Things can get better, but they can also certainly get worse.

I would be surprised if Dr. Schaar offered you surgery unless you had physical complaints as opposed to cosmetic. Although, you are correct in that he is really your only option at this point. As I said, pectus-wise your chest looks corrected to me and with what you have been through, messing with it again is much riskier than usual. I can empathize with your feelings of mental bodily discomfort and not feeling at home in your own body. The issue is that you don't again want to fall into the trap that it will only ever be the case with surgery, because as you have learned, it can take away your body just as easily as it can give it back. What can make this better without any risk are things that are truly healing like exercise, weightlifting, yoga, therapy, friendship, direction, etc. Moreover, I noticed that you have moved rather quickly, with your first surgery being only in 2015. I can relate to this too, but do not discount the healing effect of time. Your mental discomfort will subside over time as you slowly become more comfortable with what you have. It's only been 4 months since your revision, that is no time at all. Schaar made me wait two years between surgeries.

Best of luck to you and let us know how you proceed.

Fresh - 2-21-2017 at 05:19 AM

Welcome. I'll be following and responding, as I can sympathize with your hardship. So sorry you've had to go through this. I too have had two failed procedures and am seeking a thirds, check out my thread:

http://www.pectusinfo.com/board/viewthread.php?tid=9767

PandorasChest - 2-21-2017 at 07:03 PM

Friskyseal,

Thank you for your kind response. I agree that my experience has been much better than many others who were less fortunate. I feel a little guilty bemoaning my problems when so many on this site are in much worse situations. Dr. Jaroszewski said that while my cartilage healed in an awkward position following the Ravitch, the cartilage had healed and fused with the ribs and sternum. This is why she refused to cut (except for a small amount of shaving down she did on the ridge where the cartilage meets the left side of my sternum). I understand why she didn't perform a hybrid, and I recognize that my chest doesn't look all that bad, considering what happened. Nonetheless, if Dr. Schaar is willing to operate that is something I will pursue. Partly my reasons are cosmetic, of course. But I also want to improve my posture in a way that is impossible right now. I have been running two miles every other day, which is great for posture. But my body still constantly reminds me that it is asymmetric and lopsided.

I wonder if slicing into the cartilage without removing any of it, then overcorrecting with a Nuss could keep additional damage to my cartilage to a minimum while providing some extra malleability to coax my chest into a more even shape.

At any rate, the results of the Nuss did look better the day after surgery than they do now. Some of that was the swelling hiding my chest wall. But some of that is due to poor posture since the Nuss. I had pretty terrible posture before the Ravitch, worse posture after the Ravitch, and I never did much exercise to try to change that. Those bad habits worsened the result during those important couple of months after the Nuss as the cartilage is healing. The difference is slight, but even so much as another Nuss could offer me some improvement, since my posture is so much better now than it was in November. Dr. J even mentioned that I might need another Nuss, since bars can shift into a less desirable position after surgery.

A lot of people on pectusinfo have talked about Dr. Schaar's ability to address rib flare. I have no idea what his technique for that is, and how it might differ from what Dr. J does. Any ideas?

This is just something that weighs heavily on me. I'm sure my concerns will fade over time and once I start weightlifting. But, again, if Dr. Schaarschmidt will operate, you can bet I'm getting another surgery.

I've got a lot to say so sorry this is getting so long. Anyway, as for my scar, I forgot to mention that Dr. J cut it in November so it's still healing. The scar from my Ravitch formed some really think keloid, so she removed it for me in the hope it would heal better this time. I got some steroids injected into it as it healed so fortunately the keloid isn't that bad, just a couple inches at the bottom. Apart from that bit of keloid, the redness is slowly starting to fade.

I'll try to post some pre-Nuss pics so you can see my Ravitched (i.e. ravaged) chest and fat scar.

Fresh,

I just spent the past half hour reading your story. I'm so sorry to see that you've been denied coverage again and again. You're a strong person and I hope you get the care you need and deserve. Keep us updated with your progress. Good luck!

PandorasChest - 2-21-2017 at 07:18 PM

Also, I'm curious whether anyone has heard of someone having a hybrid technique from Dr. Schaar or Dr. J that didn't heal or healed badly. Everyone talks of the risks. Dr. J talked about how risky the hybrid is when I saw her. But I've never heard of anyone not healing. There was a podcast Dr. J did on the Pectus Awareness and Support Foundation where she said that although the risk is there when she operates, she's never made anyone worse. If Dr. Schaar operated and my chest ended up worse, I'm thinking I'd probably have to be extremely unlucky.

PandorasChest - 2-21-2017 at 10:43 PM

Post-Ravitch, pre-Nuss:

ravitch1.png - 117kB

ravitch2.png - 71kB

ravitch3.png - 81kB

Fresh - 2-24-2017 at 04:25 PM

Just based on my past experiences reading journals and hearing stories from fellow members, you'll probably achieve great results if you opt for another surgery. Your chest looks great and close to perfect already in my honest opinion. :)

It almost looks as if you don't have PE, but pec muscle insertions that look spread slightly.

dcebob - 2-27-2017 at 10:11 AM

I think your chest is looking great! No rib flare and flat from the sides. It looks really good. If you are concerned about its appearance, I know there are some things Dr. J can do at bar removal that work for some patients such as rib shaving and post surgery bracing that can help make it look even better without having to go through an extra surgery.

Sometimes the structure of our bones limits what the Nuss and hybrid can accomplish on their own. I have some issues with this as the PE caused my ribs to grow uneven before I had them fixed. This affected my outcome. Happily, I have a very good repair, just not perfect. Dr. J and I talked at my year check-up about how there was only so much she could do with my ribs in my original surgeries. She also discussed with me the things she would like to do make my chest aesthetically look better when I get my bars out. I think she would like to see everyone of her patients look the best they are capable. So I'm looking forward to see what she does when I get my bars out.

I wish you the best on your journey!