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Posted on Dec 19, 2016, 6:40 am
#51
From what I have heared many patients get to almost 100% functionality in terms of strenght and flexibility.
But what I also heared is the less you do the more likely you will get there without any complications, so I would only want to do 5,5 cm.
But I never heared of anybody who has done less than 5 cm.
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Posted on Dec 19, 2016, 7:10 am
#52
Let me be completely transparent and honest:
I had talked to Wittenstein even before I got the surgery done. I had in fact an email exchange with the director of Wittenstein (helps that I speak the same language). At the time it was mainly about the question if EMS (electro muscular stimulation) is save with Fitbone.
After analysing the technical specs of the EMS system he said that it was indeed save.

When my fitbone failed, their first suspicion was that I had used the EMS system. However, that systems, had not even arrived here yet!

So I met with two reps from Wittenstein few days after my second operation. We had a nice discussion for around 90 minutes. As they were sales rep, and I am expert on sales and marketing (actually wrote two books in the field) I asked some questions about their clients and marketing strategy and immediatly prepared some marketing advice, part of which they have already implemented.

Then we discussed the savity of Fitbone, and they said "Fitbone" is absolutely save and you case is something that never happened before. They then mentioned that only in case they remembered a Viking like Swede did a high jump and the fitbone broke. But appart from such unreasonable behavior fitbone is totally save.

However, then we talked about compensation, and it seemed that they thought by giving me a free replacement that was enough. However, my arguments of pain, lost work time, and potential future negative consequences, did seem to convince them to consider a compensation.

However, I do think that my writing about compensation in this forum, my letting them know that I was trainer as a German lawyer, and that my father had worked in product liability cases, it seemed to scare them off. Becasue the next mail I got said basically "do not use the EMS device you bought and do not put more than 20 kg on the ftibone, otherwise we cannot take any guarantees!"

Not putting more thna 20 kg on a fitbone pretty much means you can not stand up at all! So I immediatly contact Dr. Monegal, who had given me a recovery program like this:
1. one week hospital in bed
2. stand up as soon as come out of hospital
3. 1 week after hospital you can start walking in between parallel bars
4. shortly after you can start using the bike
5. after taking out your stiches and having wounds healed you can use the pool
6. you can do any exercise that does not put full weight on your bones
7. stand up as much possible but NEVER walk

The doctor confirmed that protocoll. So when I told them about the 20 kg limitation by Wittenstein, he said this was unreasonable and that I should listen to him, which of course I was very happy to do.

The recovery protocoll of Dr. Monegal does not limit you too much, there are so many things you can do even with fitbone implants.

But then I had another call with the marekting rep and with the director of Fitbone. Again they were friendly and appreciative of my marketing advice. But then again, they wanted to tell me that they would not be liable if I put more than 20 kg on one bone, apparently being afraid of any liability suits. So I told them listen: what you are saying is totally different from what Dr. Monegal is saying and it is also different from eveything you told me before (nothing can happen to Fitbone if you use it reasonably and only 0.3% failure rate)!
They finally agreed, that I was allowed to follow the recovery protocol of Dr. Monegal, which I am very happy about.

To summarize: Nice people. Only would have hoped for that they see me as their friend, who wants to help them, and not like a danger and that they trust Dr. Monegal more in his recovery protocol and not seem to be totally focused on limiting their potential liabilities.
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Posted on Dec 22, 2016, 10:58 pm
#53
It's very bad they act like this. I think the manufacturer is to be blamed. In my opinion they should compensate you, Musicmaker and the American guy. Are they scared of you because they see you as a danger? You are! They should be very scared of all patients with bad nails like the that American guy with his external fixator and Musicmaker with her many surgeries, many sequels, many years of life thrown away. You've got them by the balls.
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Posted on Jan 3, 2017, 8:08 pm
#54
Hello world!
Sorry for not updating my diary!
I am doing fine: I have reduced my pain medication to 1/3 of what I was taking shortly after being released from hospital, I sleep almost continously for 8 hours (usually wake up once a night for a short while, which I compensate by an afternoon nap), am gaining speed on the bike, where I went from 10 km/h to a maximum of 39 km/h, and generally feeling happy.
The only thing bothering me is my left leg, which already had to undergo 3 surgeries, while my right leg feels great. Also, it is still a little bit shorter, when I was standing up, which meant that my right longer leg was almost never 100% straight when standing.
So last week I decided to lengthen more in the weaker left leg to even out the length, but the next day, during physiotherapy I got a strong pain in it, which did not go away for several days, and my left leg strength went down even more and I could not bike more than 25 km/h!
So I stopped lengthening, and exercising for one weekend and skipped physio session. My muscle healed, pain levels went down a lot, strength went up and today I was able to get from 39 km/h to 42 km/h on the bike. :-)
From now on, I will lengthen only at 0,66 mm per day, so to give my muscle more time to deal with the distraction. 
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Posted on Jan 3, 2017, 8:16 pm
#55
Three surgeries are too much
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Posted on Jan 3, 2017, 10:58 pm
#56
Quote from: onemorefoot on January 03, 2017, 08:16:25 PMThree surgeries are too much

Are three surgeries too much? Bad joke? Many members here have extra surgeries because LL is full of dangers. Musicmaker had around ten surgeries. I hope Helloworld isn't the second Musicmaker.

Quote from: helloworld on January 03, 2017, 08:08:08 PMHello world!
Sorry for not updating my diary!
I am doing fine: I have reduced my pain medication to 1/3 of what I was taking shortly after being released from hospital, I sleep almost continously for 8 hours (usually wake up once a night for a short while, which I compensate by an afternoon nap), am gaining speed on the bike, where I went from 10 km/h to a maximum of 39 km/h, and generally feeling happy.
The only thing bothering me is my left leg, which already had to undergo 3 surgeries, while my right leg feels great. Also, it is still a little bit shorter, when I was standing up, which meant that my right longer leg was almost never 100% straight when standing.
So last week I decided to lengthen more in the weaker left leg to even out the length, but the next day, during physiotherapy I got a strong pain in it, which did not go away for several days, and my left leg strength went down even more and I could not bike more than 25 km/h!
So I stopped lengthening, and exercising for one weekend and skipped physio session. My muscle healed, pain levels went down a lot, strength went up and today I was able to get from 39 km/h to 42 km/h on the bike. :-)
From now on, I will lengthen only at 0,66 mm per day, so to give my muscle more time to deal with the distraction. 

So good you got better! Be careful with exercising too hard during PT. It can be harmful for your legs.
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Posted on Jan 3, 2017, 11:13 pm
#57
Most of the internal patients have only 2 surgeries( put and remove tha nail), there are exceptions but are not " a lot like you say". I think that can change based on the kind of device and doctor( if you look ISKD patients ,they had like 100 surgeries), with precice or fitbone is not very likely to have 3 or more surgeries( look at Penguin, femurs diary of cooper,bilateral damage, etc.), I am almost sure that 80/100 of the femurs diaries here only report two major surgeries( also the companies say that their failure rate of nails is less than 1/100).
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Posted on Jan 4, 2017, 11:24 pm
#58
Thanks for your kind wishes!
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Posted on Jan 5, 2017, 8:01 pm
#59
Many patients have 3 surgeries. Helloworld will have at least 4. If he becomes the new musicmaker he will have more. Device failures cause unwanted extra surgeries for patients. That happens with Fitbone, Precice.. but I agree there have been more cases with unexperienced doctors. If the device has failed with at least 3 people (all Monegal's) they should investigate why.
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Posted on Jan 7, 2017, 5:29 pm
#60
Monegal told me he had more than 365 surgeries per year, of course not all Fitbone.
And Wittenstein (Fitbone maker) reps told me that he was one of the most experienced doctors for Fitbone nail.
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