I'm a 24 year old guy with PE who had a previous ravitch surgery done when I was 17 in St. Louis. Result was pretty good at first but after having the metal strut removed 6 months later regression set in pretty fast. Decided to look into having a second go around at surgery last year and came across the team at Phoenix Children's Hospital. After a year of starting a new job and having various tests done I have a surgery date of 12/12/18 with Dr. Notrica & Co at Pheonix. Figured I'd start this topic to share my journey and hopefully help anybody in a similar situation.
Had surgery yesterday with both Dr. Notrica & Dr. McMahon. It went very well, result looks fantastic and I heard both Notrica & McMahon were very happy with how it turned out. They had talked about it potentially being a nuss/ravitch hybrid depending on how my chest had healed from my prior surgery but ended up only needing a nuss with 2 bars.
I had the cryo done and as far as pain goes it is a night and day difference between now and what I remember feeling from my last surgery. Jackie (the pectus coordinator at PCH) has told me it made a huge difference in all the patients they've done it on so far (~80 I think), I definitely recommend it to anyone here who has the option of doing it at their hospital.
I think today they want me to try standing up and talking a walk which I'm excited for because I hate being stuck in the hospital bed haha. I'll keep this topic updated with how everything goes and feel free to ask any questions.
Sounds good to me, glad everything went well. Thank you for posting this journey. I am going to root for you
I am also 24 and never had surgery on my Pectus. I am thinking about it because I am very slim and athletic and having this whole makes me look like I have a stomach, frustrating. I also have idiopathic scoliosis which is not helping at all. I would like to say I don't care but It just isn't so. Fuck it...
Stayed in the hospital for 6 days post surgery and was released yesterday. The lower of the my 2 bars slipped a little on my second day there but Dr. Notrica said since my upper bar was doing the majority of the work the bar moving wouldn't make much of an impact, to his point my chest looked the same after the bar moved. Outside of that my pain wasn't too bad for most of my stay but I had so much fluid in my chest they couldn't take me off my chest tube out until Monday. After that it was out they found that some air was built up in my chest and they kept me untill Tuesday morning to take another x-ray and make sure it wouldn't increase. It was confirmed it didn't increase and they discharged me from the hospital, but I have to get an X-ray tomorrow morning to confirm that all the air has left my chest before I can fly back home (I'm from the midwest) early Friday morning.
Thanks for the support Mat3a. If PE is something that bothers you physically or emotionally and you want to get surgery for it I urge you to go for it, especially while you are still relatively young. The only thing I would stress is to go to an expert, having a failed surgery sucks, and with your condition it seems like it would be doubly important to go to someone who really knows what they are doing.
Thank you for your posts! I am very nervous about my son getting the procedure (with Dr Notrica in June) because my son has some psychological issues. He has severe PE (3.7 Haler) and mitral valve prolapse, so I am having such a hard time deciding if I should put him through the pain of surgery. He is 14, but mentally/emotionally much younger and has ODD (oppositional and anger-like issues). Any advice on your surgery recovery?
Don't really have any advice specific to your son's situation but I will say the PCH staff (assuming if you're seeing Notrica he's having it there) are very attentive and good at dealing with patients during the recovery. Their pain control was also excellent and outside of when my bar moved the pain never went beyond mild discomfort. I'm sure the staff there has worked with many kids who have similar psychological conditions in the past and I imagine if you talked with them about it before hand they would accommodate him properly. Sounds like this surgery could really benefit your son in the long run so I think it would be worth it to get it.
As far as recovering after being released from the hospital the main issue for me was getting to sleep and getting up after sleeping. Once I was up and walking around I didn't have too much issues but it was hard to get comfortable to fall asleep and once I woke up it I would feel very stiff and it would take a few hours to get rid of that feeling. Having recliner at home (or renting one which I did for my hotel stay in phoenix) is a big help, I would also recommend a wedge pillow which was the only way I could lay in bed comfortably for a while. I would say those problems lasted about 3-4 weeks after surgery. Now I'm about 7 weeks post surgery and I have no issue laying in bed and getting up anymore.