OP nach Nuss in Ostercappeln Dr. Lützenberg, August 2023 (english)

[j_swi]

Hello zusammen,

Ich schreibe hier auf Englisch, weil mein Deutsch noch nicht so gut ist. Ich hoffe, es nützt dir trotzdem etwas

I am usually not one to write in forums, but so many other members were generous in sharing their experiences, that I would like to pay it forward for those yet to come.

About me:

Age: 32
Gender: M
Height: 188cm
Haller Index: 5.4


Background:

I developed trichterbrust during puberty when I was around 13 years old. I was very active as a teenager and in my early adult life, and I never really felt that my chest limited me in any way. I could participate in all activities that I wished and having an indentation in my chest didn't really bother me.

I noticed the first signs that something was different in my mid-20s.The changes I noticed at first were subtle - just little things, like not having as much energy, and breathing required more effort. Over time, these small limitations increased more and more until they affected my daily quality of life. The best way I can describe it is that it feels like there's a weight on my chest all the time. I can breathe, but it's not easy for me. I have to be conscious of my breathing, and when I'm not, I often find myself breathing short, shallow breaths or even holding my breath. Sometimes I feel pain in my chest - usually not during exercise, but the day after. The pain is usually in the middle of my sternum and just feels tight, like my heart has nowhere to expand. I was convinced that I just had to accept the limitations and make the most out of my situation. Therefore, over the past 5 years, I have done everything possible to improve my quality of life: stretching, lifting weights, jogging, biking, hiking, yoga, physical therapy, chiropractic, hot sauna, cold showers, meditation, breathing exercises. These activities have certainly helped alleviate some of my symptoms in the short term (some more than others), but I have found that these activities have not resulted in long-term improvement. In short, I feel that all my targeted efforts have become an ongoing rehabilitation process.

I never considered surgery as a possible solution until I stumbled upon a video of someone sharing their surgery experience last year. This piqued my interest and soon after I discovered this forum where I have read through many testimonials of members who shared their own personal experiences. This is how I came across both the Nuss procedure and Dr. Lützenberg.

I first met with Dr. Lützenberg in November 2022. He examined me and told me that I would benefit from surgery. The most validating part was that he confirmed that a lot of my experiences were common with other people with trichterbrust, particularly as they get into their late twenties/early thirties.

I spent the next several months gathering the tests he required to make my case to the insurance:

Radiologie- I received X-rays where they measured that my Haller index was 5.4

Pulmonologie- In my experience, the lung doctors were the least willing to accept that trichterbrust was causing me any limitations. I did the normal lung function test and a spiroergometrie EKG test, and because my lung function was pretty good, the doctor told me and wrote in the Artzbrief that he didn't recommend surgery. Thanks doc... I then went to another lung doctor to receive a 2nd opinion, and he came to a similar conclusion. It frustrated me because I felt they only examined my lungs, but made conclusions about my whole body.

Kardiologie - I was supposed to receive a stress echo test, which is basically where they perform an ultrasound on your heart while biking, but the doctor said it was not possible to get a good reading because of the indentation in my chest. I emailed Dr. Lützenberg and he told me a Stress MRT would also work. But the only problem with a Stress MRT is it is expensive and not covered by most insurances. So I sought a 2nd opinion for a stress echo test, and he said the same thing. So I sought a 3rd opinion, and big surprise, I was told the same thing. However the 3rd doctor told me she knew a loophole with the Stress MRT- it is possible to get it covered by insurance if you stay overnight in the hospital. She arranged for me to stay in a hospital and I was able to get the test without paying (woo hoo!).

After all the tests, I didn't feel that I had a strong case for the insurance company. Yes, my Haller Index is moderate, but my lungs seem fairly normal (70-80% capacity) and my heart looks healthy. However, I submitted my application to my insurance company (TK) and after about 6 weeks, they fortunately accepted!



So now, the time has finally come. I was admitted into Niels-Stensen this morning and tomorrow, 31 August I will have surgery at 10am. I will try and give updates about my experience as soon as I feel fit to do so.

Thank you to the community for your sharing your stories and experiences. I never would have considered surgery without them.

[jan97]

Hello,
I went through the surgery on 08.08.23 in Ostercappeln by Dr. Lützenberg. He is certainly one of the best in the field and the team on ward 5 is also very good. I wish you a complication-free operation and a quick recovery. The beginning is very painful - don't let that discourage you, because it gets better day by day.

Eating despite the lack of appetite helped me being able to walk on the fourth day.

Kind regards

Jan

[j_swi]

Hi again,

Here's an update of the last days:

Day of Surgery (31 Aug) - Around 9:30 I was transported down to the surgery area where they put an IV catheter in my arm and then I waited for my turn. Eventually 2 doctors brought me back to a new room where they began prepping me. Everyone was very friendly and I felt very comfortable small talking with them until they were ready. Then a doctor said "Now you sleep" and I started to feel this warm drowsiness spread through my body. I had enough time to thank them and say goodbye and then I was out.

I woke up some time later feeling disoriented but began to slowly process everything happening. I immediately felt some pain and stiffness in the chest, but for the most part the next few hours were blur. At some point Dr Lützenberg came by to tell me everything was a success and the surgery has taken one hour and five minutes. I was transferred to intensive care unit for that first night. I slept off and on for the next twelve hours with requests for pain meds and anti-nausea medicine in between.

Day 1
This was probably the hardest day of the recovery. Sometime late morning they transferred me back to Station 5. It got off to a rough start because somehow my bed broke so they had to pick me up and transfer me to a new bed, which didn't but feel so good after being freshly operated. It was also very uncomfortable on my back and the pain meds didn't seem to help with that particular discomfort. Still time passed and eventually things got better.

Day 2-3
The big highlight of day 2 was that I could have the drainage tubes and pee catheter removed which helped with the comfort some. I was also able to sit up in bed for lunch and dinner. It was difficult but it made eating much easier. On day 3 the physical therapist visited and with her help I was able to take a few steps around the room.

Day 4 - One thing I overlooked before surgery was how important pooping is! After 4 days of pain meds with no bowel movements, it began to get really uncomfortable in the mid-section. It was tough because I knew I needed to poop, but I was constipated and didn't think I could physically manage sitting in the toilet so soon after surgery. The nurses did a good job of giving a stool-softener powder every morning and I also received Plaumensaft to loosen things up. Finally in the afternoon I was able to make it happen and felt great relief afterwards.

Day 5 - today has been my best day yet. I am still very sore and stiff in my chest (I think that will be the case for awhile still) but I can sit up and walk around with relative ease now, although I still feel tired after too much exertion. Dr Lützenberg has told me everything is going as expected and I will be able to leave on Thursday.


In summary, I feel in good hands here at the hospital. They have done this so many times that all the nurses and doctors are aware of all the issues, complications, etc. related to this surgery and it feels very routine (in a good way). Also Dr Lützenberg stops by every day (except the weekend) to check in and he listens to any questions or concerns I have. Even though I know it is still a long road to recovery, I feel very good with my decision and look forward to this new chapter ahead.

[j_swi]

Thank you for your words of encouragement @Jan.

How are you feeling almost a month post-surgery?

[jan97]

Hi,
it's getting better day by day. Last night was the best one so far.

The nights are better with 1x Tilidin and 1x Novalgin. Through the day i take 1-2x Novalgin.
Today I had my first physiotherapist session and it went well.

How are you nearly 2 weeks post-surgery?