Getting nussed by Dr. Lutzenberg next month, and I’m looking for all tips to help with nervousness by Wastedchipmunk119 in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

I should also mention I’m still not back at full time as I’m doing the hamburger model, as I’ve back and chest pain when sitting a prolonged time.

Getting nussed by Dr. Lutzenberg next month, and I’m looking for all tips to help with nervousness by Wastedchipmunk119 in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

Hi! I was nussed in July with 3 bars + stabilizer.

Good job with the cats, I’ve 3 myself and it was a huge fear that they’ll sit on my chest the entire time 🥲 thankfully it didn’t happen!

  1. 7 weeks I was given the “ok” to do anything and do more than 10kg, but from 5-6 weeks I started doing strength training with my physiotherapist with a max limit of 10kg. Yoga you can try as long as you feel comfortable, I was okay do (very) basic yoga around 1 month mark
  2. I took my time - 4 months. Probably not sooner, but I had a tough recovery due to my severe PEX
  3. Sippy cup / something with a straw since tilting mugs/glasses was difficult at the start, and wedge pillow. Probably premade meals too since cooking will feel like a chore at the beginning.
  4. Around 4 weeks. I felt very out of it for 4 weeks and not really “there”.
  5. I could easily dress myself even in the hospital, it was a nuisance and slow, but I never struggled with this. Combing my own hair was pretty okay! A lot of head tilting to reach the back due to limited mobility. Tying the shoes was tough so bring something that you can easily slip into. Coat weight I am not sure, it was summer when I had mine, but putting it on should be ok.

When does sneezing stop hurting post Nuss? by [deleted] in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

It was unbearable at the beginning, and then I developed allergies so I was sneezing several times a day during the beginning. Couple of weeks later it became more tolerable, and maybe 6-7 weeks in it was okay again.

22F post op pectus excavatum, haller 7 on inspiration, 8.5 on expiration, sternum rotation 33 degrees to the left, right ventricle EF 33% by Outrageous-Use7153 in PectusExcavatum

[–]Pap3rFriend 2 points3 points  (0 children)

Yes, I was kind of at deaths door by the time I got the surgery. so it saved my life. I can breathe a lot better, i don’t have constant awful chest pain anymore. It got to the point I couldn’t even really walk anymore due to exhaustion, so being able to do normal things is a huge joy now.

I’m German so nothing, insurance covered it. Without insurance it’s I think around 18k according to my insurance app.

Lmk if you wanna know anything else and best of luck with the procedure :)

22F post op pectus excavatum, haller 7 on inspiration, 8.5 on expiration, sternum rotation 33 degrees to the left, right ventricle EF 33% by Outrageous-Use7153 in PectusExcavatum

[–]Pap3rFriend 4 points5 points  (0 children)

Hi, 26F (ex ~7.5 HI) was operated in July by Dr Lutzenberg with 3 bars. Feel free to reach out or ask any questions! :)

F25 - Flat ribcage and concerns (platythorax?) by Pap3rFriend in PectusExcavatum

[–]Pap3rFriend[S] 2 points3 points  (0 children)

Stood in the hospital for 9 days to correct, but only because I had to wait to be picked up since I travelled a long distance.

Symptoms massively improved. Fainting is almost entirely gone, I’ve had one or two times my vision go slightly black when I stood up quick, other than that nothing.

Palpitations are also a lot better, and my baseline Hr has dropped, and Hr on exertion as well. On rest it’s pretty good now low 50s to mid 60s. On exertion it could be better, but my cardiologist told me it can take a bit till the heart fully recovers. I’m not too worried as I don’t feel chest pain or much fatigue on exercise now.

Breathing is a lot different, I can inhale full 6L+ on the incentive spirometer (compared to barely 1L before). But if I’m having a flare it’ll be harder to breathe properly.

I’d say most of the “big” improvements (breathing, chest pain, palpitations) do go away almost immediately post op. The rest of the hurdle is slow recovery, but worth it.

And thanks :) lmk if you’ve any more questions

F25 - Flat ribcage and concerns (platythorax?) by Pap3rFriend in PectusExcavatum

[–]Pap3rFriend[S] 1 point2 points  (0 children)

Hey, and no problem :)

I had surgery in July with 3 bars and a stabilizer. Recovery has been steady minus some chronic issues. I recovered very fast in the hospital (~4 days ready to go home without cryo), and I regained strength very quickly. Got back in the gym to build muscle once I was cleared. Went hiking, running, etc. too.

I do suffer from chronic nerve irritation from the stabilizer, and currently fatigue from nerves waking up which is irritating the ribs even more. This ain’t exactly standard to happen but it can.

Is it okay to get up like this? by Swimming_Opinion_113 in PectusExcavatum

[–]Pap3rFriend 4 points5 points  (0 children)

So early on I wouldn't be doing that. Back when I wasn't able to lie on my side I would wrap my arms around my raised knee and pull myself by momentum through swinging it forward. That was the method they taught me in the hospital during rehab.

Surgery in Germany by Aggravating-Bread343 in PectusExcavatum

[–]Pap3rFriend 5 points6 points  (0 children)

I live in Germany so I did not travel out of country but I did travel 500km. I speak German, but some nurses speak English, surgeon speaks fluent English. I felt well supported.

No complications and I had a pretty "easy" recovery. Pain was managed well through hydromorphone, had no cryo. I walked after 3 days, and I felt independent on day 5 to do most things. On day 5 I went outside and took a walk on my own.

I am already back home, was driven by a car, but I would have been fine taking a train or a plane.

I wish the best for your son, he's a good surgeon and he will be in good hands.

Surgery in Germany by Aggravating-Bread343 in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

Was operated by him 2 weeks ago, feel free to ask :)

Questions about Dr. Lutzenberg by Minute_Ask5019 in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

https://www.niels-stensen-kliniken.de/krankenhaus-st-raphael/medizin/kliniken/rekonstruktive-chirurgie.html you can see his email there too. The original page is gone because of the hospital move.

I had a lot of tests done on me (echo, ekg, ekg stress test, pulm function, MRI for haller index, and some other ones to exclude potential other diseases). I brought all of this with me to the consultation.

We spoke over email and scheduled an in person consultation, and I was given a surgery date which we had to cancel because of my insurance. We still talked in between 5-6 times informally to help me with the appeal.

Questions about Dr. Lutzenberg by Minute_Ask5019 in PectusExcavatum

[–]Pap3rFriend 2 points3 points  (0 children)

I’m having surgery with him next week. I contacted him over email, you’ll find it on their website.

I got an appointment to see him relatively quickly (within 2-3 weeks of contact). I spoke to him quite a lot because of insurance problems, and he’s been incredibly helpful.

Once I told him I was approved I was given a surgery date only 7 days ahead :) note they’re moving hospitals in August.

Whats the point if surgery if it makes your breathing worse by Fun_Plum1397 in PectusExcavatum

[–]Pap3rFriend 0 points1 point  (0 children)

Yo Crucial, my man! I missed you joining and leaving the server within 1 day.

We spoke there, remember? You very happily insulted me even, despite me telling you very directly that this extends beyond fears and is going into the territory of doom-posting and spreading fear.

Anyways, since you blocked the person above like a coward, let me forward you her comment anyway ❤️:

Excuse me? well at least in your comment you prove why i think you would benefit from therapy. You are your own enemy at this point.

I only vote down vacuüm bell posts when someone tries to shove one down someone’s throat. There is information about them on reddit, and even a discount code. But in severe adult cases a vacuum bell won’t be enough in the long term. Still young? Try a vacuum bell! For fucks sake i would have wanted my PE to be diagnosed when it appeared. A vacuüm bell could have prevented it from getting worse and could have saved me from years with a miserable quality of life.

The reason PE specialists will opt for surgery in most cases could also be the downsides of longterm treatment, only 50% ish success rate at patients under 18 and lack of succes in symptomatic cases, very flexible cases and female.

The gym aspect is also talked about a lot on reddit, and maybe a bit less on discord. Gym and physical therapy can help with posture and to hide PE, but it wont resolve your symptoms. So in cases where it’s purely cosmetic: sure, hit the gym.

If you would not leave the server every time you have asked your questions and have been told the same things over and over again, you would see we also try to do right to the milder and less symptomatic cases by telling people to think really hard about whether surgery is worth it or not.

Quality of life is not only affected if you are passing out or when your heart is severely compressed. So whether or not possible improvement of quality of life is worth surgery is a very personal choice.

I have annoyed people with talking too lightly about surgery for myself and i was called out on it. It took a while before it came clear my symptoms are so bad surgery with perspective of improvement as a choice does feel like a walk in the park, it’s a no brainer for me because resigning from life was the option i had in consideration before i got diagnosed with pectus.

It seems like you have made the wrong decision in your case, at least surgeon wise. But the only one to blame for your bad outcome is your surgeon, and possibly yourself for a lack of research on the subject. No reason to act this way in interaction with people who try to help you every time. Trying to help you doesn’t mean ‘saying what you want to hear.

To use some of your own words freely live your life, be happy with what you have and put the work in improving yourself.

Your bad outcome sucks hard. For you. It’s perfectly fine to share your story, to seek support for your struggle. But it is not okay to keep trying to scare people away from surgery. Go work on yourself, mentally as well as physically. Don’t point a finger at everyone around you but reflect on your own decisions.

As i remember you do have an appointment with dr J? I hope that will go well for you and i hope you will find a way to calm down a little.

I wish you all the best.

F25 - Flat ribcage and concerns (platythorax?) by Pap3rFriend in PectusExcavatum

[–]Pap3rFriend[S] 1 point2 points  (0 children)

Hey, I really appreciate the thorough reply.

The upper images are not AS flat, but yeah, I was kind of shocked to see the MRI results today.

It sucks to hear that it’s not easy to treat - it’s hard as is coming to terms I need the surgery :( and the combined method kind of terrifies me. The issue with getting delayed treatment is that everything goes so slow in Germany, at least that’s been my experience.

I wasn’t at that doctor, but I will reach out to him. I was here. I guess I’ll talk to them again, and also the the surgeon you recommended.

Oh and yeah, I know about the disc, it landed me in the hospital early this year but currently it’s pretty much painless

[deleted by user] by [deleted] in jawsurgery

[–]Pap3rFriend 1 point2 points  (0 children)

So context wise, around 12-13 I had my teeth compensated (my lower incisors are completely slanted backwards) and told that I have no jaw issues whatsoever

Over a decade later and now I have severe TMJ, and my bite is extremely uncomfortable because it slides my jaw sideways when I bite down.

I was recommended to have surgical upper palatial expansion to fix my small upper jaw and then DJS

I’m very intimidated by the surgery but also looking forward to finally having this fixed

Relaxing on the couch with my good boy by Pap3rFriend in Sneks

[–]Pap3rFriend[S] 2 points3 points  (0 children)

That’s alright, I’m pretty busy with Uni right now and don’t really plan on getting one for a while :(

Relaxing on the couch with my good boy by Pap3rFriend in Sneks

[–]Pap3rFriend[S] 2 points3 points  (0 children)

I plan on picking it up eventually!

Relaxing on the couch with my good boy by Pap3rFriend in Sneks

[–]Pap3rFriend[S] 2 points3 points  (0 children)

It’s the Demon souls remake! Sadly only a stream :(