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TOPIC: Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5517

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Hi,

This is my journey. It may help other patients similar to me to decide/prepare for surgery.

I had PE since childhood. I am now 45. Last July, a CT scan revealed a deep PE (Haller: 12), roughly symmetrical, with a distance between the verterbra and the sternum at 2.5 cm, heart completely located in the left hemithorax, prolapsus of the mitral valve.

Years ago I was diagnosed with Chronic Fatigue Syndrome. For the last 15 years I've been homebound and mostly bedbound. I decided to do this operation because in my view without it, I would have spent the rest of my life in my bed. I thought I had relatively little to loose.

Once I had the CT scan images, I contacted Dr J, Pr Schaarschmidt, Dr Pilegaard and Dr Lutzenberg to have their opinion. Dr J said that she would prefer to see me in person before making an opinion. As I am based in Europe, It would have meant a 14+ hour flight each way, plus costs of probably around $80-100,000 for the surgery plus further costs in case of complications (the sky is the limit). So I quickly abandoned that route. Dr Lutzenberg and Dr Pilegaard said they felt uncomfortable operating on me as my general state of health did not seem too good. Prof. Schaarschmidt agreed to do the operation. He is not sure I have CFS in the first place. I tend to share his opinion, hence my decision to request a CT scan earlier this year. I personally believe that PE is probably not the entire picture, but certainly a good part of it. The goal is to improve my quality of life.

I arrived at Berlin on 20th Sept. I have to say that people here are extremely nice and helpful. Even if you know just "goetentag" (hello), "dankesheun" (thank you) and "bitte" (please) and you smile, you'll have no problem finding help.

I had the operation on 22nd. Two titanium bars were placed. This operation is no picnic. If your experience of surgery is mole removal and you think the Nuss procedure is just a variant, then you need to educate yourself much much more and keep reading people's journies. This is major. It is a deep anesthesia without your body being able to breathe by itself (a machine will do it for you). Essentially they bend your entire rib cage to remodel it and leave more space for your heart. In my case, now the distance between the sternum and the verterbra is 11.1 cm (from 2.5!). Prof Schaarschmidt estimates that I now have an extra 1.5 litres of volume in my chest.

I had arrythmia shortly after the operation, but that is now resolved. After the operation, you do not really feel pain so much, more like general incomfort, nausea (throwing up is very painful), dizziness. ICU are very noisy places with alarms beeping everywhere and people rushing from one bed to the other, and you just cannot expect to sleep more than a couple of hours in a row. Being in an unfamiliar environment among people who speak another language makes the situation even tougher. I am very lucky that I've had my mother with me full time and that she can speak a bit of German.

They will strongly encourage you to walk and do some breathing exercices. If you do'nt, thick mucus will accumulate in your lungs and you'll develop pneumonia. So even if you throw up because of the pain/dizziness/... you still have to walk and move. It is really tough. Even just going downstairs for an X-ray is a whole expedition. You are also connceted to drains. I think I lost about 1.5 litres.

I have to go now. I'll continue my post later.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5518

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After 4 days, the drains were removed. Then after 5 days, I left the Intermediate Care Unit to get back to a normal room. I believe that your ability to walk is a major factor to leave ICU. So walk, walk and walk. Even like a zombie. Nobody cares what you look like with all your bags of fluids. What matters is the number of times you cross the corridor. Because going back to a normal room means being able to sleep without being interrupted, being able to have a shower, to wear your own clothes, etc. By that stage you'll have only one single thought in your mind: to get out of that hell. So do whatever it takes.

Already in ICU, they'll give you 3 breathing devices to expand your lungs. Again this is essential to avoid pneumonia. When the mucus is thick, it is very favourable to microbes to thrive and as you are in a hospital, there are plenty waiting for a cosy nest. Once in a normal room, a physiotherapist will show you excercices that help for the breathing, for the stretching, to turn in bed at night without causing pain. This is what I like in Berlin, it is a full programme, not just the surgery.

So far, I think I was very fortunate not to have major complications. I plan to leave on Tuesday.

For the ladies : they give you each night an anti-thrombosis injection (probably heparin). It may cause heavy vaginal bleeding. So tell the nurse immediately, don't assume it is just your period, it is not. The bleeding can be quite heavy, and unnecessary loss of blood at this critical time should be avoided.

I'll keep posting with more progress later.

Anna

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5519

Well congratulations on getting repaired - sounds like you are going through on heck of a recovery. With a Haller of 12 at 45, it is expected though. Thank you so much for sharing your story. Others will find it very helpful! Keep your head up! There is light at the end of the tunnel.
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Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5520

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Further details:

In Berlin, I was positively surprised by how well informed you are about risks. Informed consent seems to be taken extremely seriously. Even for a MRI scan, you receive several pages of documents explaining everything in a language the lay man can understand. They have these forms in English and will provided you spontanuously with the English version. In case they give you a document in German, don't hesitate to ask for the English version.

In Berlin, they encourage patients to have peridural anesthesia. After reading the whole consent form, I thought I did not want all these risks. So I opted for opioids instead. In any event, if at a later stage you feel opioids are not enough you still can have a peridural. Please be aware that with opioids, muscles tend to move less than with peridural anesthesia. It means that the risk of developing pneumonia is higher. In my case, I never had a chest infection, so I made the reasonable assumption that there is probably no pockets of microbes in my lungs just waiting for the right conditions to thrive again. I remember that the anesthesiologist said that a study showed that vegans had higher risks of complications for peridural anesthesia, but the reason was unknown. So if you are vegan, you need to ask more questions.
The downside of opioids is that you have more nausea. I believe that my days in ICU would have been easier with peridural. But I felt the higher risks just for some extra comfort were not worth it. This is entirely personal of course. My state of mind was: will I be able to forgive myself if I become paralysed just for a bit of comfort? Everybody is different, and everybody make their own decisions.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5521

I don'pt think there's any way to avoid opiates, but they are making strides in being able to get away with giving patients less and less. Some people do not get nausea and I envy them. The nausea was by far worse than the pain for me.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5541

Anna, thank you for posting. I am a 44 year old female considering going to Berlin for a redo. I have had two failed ravitch procedure in the US. My situation is a little different than yours but would love to keep informed on your experience there so I can make a final decision. Hang in there. I think you made the right decision.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5542

Way to go Anna, you are making progress and congrats on the repair! Best wishes for a smooth recovery!
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Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5547

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Thanks for the good wishes :-)

I'm now back home. The journey back home was tough. I started to reduce my painkillers when I was still in hospital and it was okay. But sitting in a car (taxi to the airport) and feeling each bump in the road is really uncomfortable. Travelling by plane or train is fine though. So make sure that you slightly increase your dosage of painkillers the day you travel back, otherwise you'll end up like me trying to play catch up with pain, which never really works.

Being home is nice and at the same time a bit depressing. You are glad you no longer are in hospital (no obligation to wake up at 6am any longer!) so that you can go with your day the way you want, eat what you want. etc. But once at home there is just the wait of getting better, while when you are in hospital the big next step is to be discharged. Once at home there is no discernible goal. I guess this is how I feel right now because I have not set new goals yet.

I have to say that since the operation I've felt very emotional, which is very unusual for me. But it is getting better. I guess the ordeal, the fact that at some stage I felt very scared for myself, the fact that I no longer recognise my body, the fact that a big part of my torso is numb, the fact that I'll have to wait about a year to see whether my quality of life improves and to know whether this was really the right decision, all these factors probably tend to make me feel different from my usual self.

A couple of extra details about Berlin:
The hospital is in the middle of a campus. It is very pretty and relaxing with paths to walk and benches to sit under the trees. Prof Schaarschmidt told me that spring and automn were the best seasons to have surgery. You can really enjoy the weather during your stay which is nice.
The food is okay. It is the German taste of course, but if you do not like the food served in your room, there is still the possibility of using the cafetaria. There the food is quite good.
Durring your stay in ICU, they provide you with clothes (a gown) and towels. I was unable to wear underwear because of the bladder catheter, but a robe is very useful (choose something light, not too long, so that you can walk easily in corridors, and preferably a dark colour so that stains do not show). Essentially you have to pack clothes for the 1-2 days before surgery and then for the days after ICU. Take with you soft clothes (yoga pants, jogging pants) you can sleep in them in case you are too weak to change several times a day. Vests are also a good choice (T-shirts even with small leaves are much more difficult. The best is to try at home and pretend you have a shoulder injury. If it is to difficult to put on, it probably means you won't be able to put it on after surgery.

About Prof Schaarschmidt:
He will brief you about the extensive exercises you'll need after surgery. He is adamant you do your part of the work in making surgery a success and he'll make himself very clear about this :-) . Keep in mind he is used to deal with adolescents, so sometimes you feel like you are treated like a teenager again ;-) It made me smile on several occasions. So if you are still tempted to use the lifts/elevator instead of the stairs in hospital, be aware that the guy probably has a third eye at the back of his head. One day I felt super tempted to use the lift, made sure there was nobody around, but finally decided against it. And a second later Schaarschmidt literally popped up from nowhere :-) and immediately lectured me about the need to use stairs. I think if it was up to him, he would implant in his patients a device that disables lifts :-) Ah yeah, I also forgot that he will tell you to "make your little princess". Absolutely. I guess it is only for femal patients. It consists of a very straight posture while you do your breathing exercises. So now, at 45, I know why I am not a princess (a question that plagued my entire life as you righly assume): I never did the right exercises before!

More later.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5560

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I've been home for 10 days now. I'm in a lot of pain, much more than when I was in hospital. My painkillers were considerably reduced 2 days before I left hospital. With hindsight, travelling without anything was a big, big mistake. It kind of push me into a world of severe pain from which I do not seem to escape. I'm now at 5-8/10. I ordered a new bandage online. The one I have just squeezes my breasts (which make my nipples super painful) and does not wrap around my lower ribs. I found on Amazon a bandage for women, and I hope it will help a bit. I have to say that I start to worry. I cannot imagine staying in that level of pain for several weeks, let alone for 3 years.

I am also puzzled by the fact that eventhough I can breathe easier, I am prevented from breathing deeper as the bars seem to be in the way. I feel I can breathe in more, but at the same time I feel the restriction of what seems to be the bars (or perhaps, it is just pain). So I breathe in, I feel I haven't reach my full lung capacity yet, but I have to stop because of the pain/bars/wathever. If I try to push through then I have that stabbing pain on my right side that can last for hours.

Female/45/ Nuss for PE with Prof. Schaarschmidt - Sept 2016 2 years 6 months ago #5561

Hey Anna! Well done for having surgery, it takes courage, and it is not an easy recovery.

I am enjoying reading your posts, they make me excited to head back to Berlin in July 2017.

You are still very early and you will have many ups and downs. The pain is increasing now as the numbness wears off. The bars are exposed metal in your body, and the only way it will feel better is when the scar tissue grows and thickens to encapsulate your bars. This takes a few months.

In the meantime, I encourage you to walk daily as much as possible. If you have the time and nice streets to walk 10km a day, do it ! It will help you tremendously and your recovery will speed up big time.

My chest shape changed totally from Reverse-nuss and the intercostal muscles were not used to working in the way that they work now. If you work your lungs either by walking or swimming you will feel your breathing improving much faster!

It can get tough, but in time you will feel better than before. Be patient, eat healthy and always maintain a positive attitude.

You are doing great. Don't be shy to take painkillers if you are in pain.
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