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Author Topic: Limb lengthening with Fitbone  (Read 3600 times)

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notimportant

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Re: Limb lengthening with Fitbone
« Reply #62 on: January 03, 2017, 10:58:39 PM »

Three 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.

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. 

So good you got better! Be careful with exercising too hard during PT. It can be harmful for your legs.
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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #63 on: January 03, 2017, 11:13:23 PM »

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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helloworld

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Re: Limb lengthening with Fitbone
« Reply #64 on: January 04, 2017, 11:24:37 PM »

Thanks for your kind wishes!
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #65 on: January 05, 2017, 08:01:31 PM »

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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helloworld

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Re: Limb lengthening with Fitbone
« Reply #66 on: January 07, 2017, 05:29:54 PM »

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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notimportant

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Re: Limb lengthening with Fitbone
« Reply #67 on: January 08, 2017, 11:55:51 PM »

If he is one of the most experienced and has so many bad cases, the other Fitbone surgeons must be terrible.
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BiTo4

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Re: Limb lengthening with Fitbone
« Reply #68 on: January 09, 2017, 02:08:51 PM »

@notimportant have you something against Fitbone? You wrote only negativ comments.
I have the feeling you are an employee of Nuvasive / Precice.
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zantac20

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Re: Limb lengthening with Fitbone
« Reply #69 on: January 09, 2017, 02:39:35 PM »

How is it going @helloword ? I'm really looking forward to your videoblog :)

@notimportant have you something against Fitbone? You wrote only negativ comments.
I have the feeling you are an employee of Nuvasive / Precice.

Don't feed the troll, that's all I'm gonna say.
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #70 on: January 10, 2017, 07:40:38 PM »

Thanks for your message!
Going well!
I am lengthening at 0.55 - 0.65 mm per day, and that reduces that pain level a lot.
For example, today I have taken only half a Paracetamol and feel no pain.

I have heared that this actually does not slow down the process, "process" being the total time of:
1. operation and hospital
2. lengthening
3. recovery
What I mean is that if you do lengthening in 1 month then recovery will take 5 months and if you do lengthening in 3 months recoveru will take only 3 month, with the total time depending on many factors but not the rate of clicking.

I will post the videos, but I have to get my face blurred first. Hope to get this done soon.
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zantac20

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Re: Limb lengthening with Fitbone
« Reply #71 on: January 10, 2017, 07:44:55 PM »

Thanks for your message!
Going well!
I am lengthening at 0.55 - 0.65 mm per day, and that reduces that pain level a lot.
For example, today I have taken only half a Paracetamol and feel no pain.

I have heared that this actually does not slow down the process, "process" being the total time of:
1. operation and hospital
2. lengthening
3. recovery
What I mean is that if you do lengthening in 1 month then recovery will take 5 months and if you do lengthening in 3 months recoveru will take only 3 month, with the total time depending on many factors but not the rate of clicking.

I will post the videos, but I have to get my face blurred first. Hope to get this done soon.
Sounds great. I also think that when I have my surgery (most probably with fitbone too) I will lengthen slowly and not force my body.

Nice to hear your are doing fine :)
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #72 on: January 10, 2017, 11:25:21 PM »

I'm not attacking Fitbone. I'm stating the obvious. Fitbone nails fail much more than they say. We have Helloworld, Musicmaker, the American guy...
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zantac20

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Re: Limb lengthening with Fitbone
« Reply #73 on: January 11, 2017, 11:03:27 AM »

I'm not attacking Fitbone. I'm stating the obvious. Fitbone nails fail much more than they say. We have Helloworld, Musicmaker, the American guy...

You may be right, but I wouldnt asume MM had a nail failure, as far as I know she had an accident.

And Cooper's case seems more like he lost his trust on the doctor.

anyway, dr. Monegal seems very caring and friendly. There is no perfect doctor (I'm sure even Paley had bad cases) but as long as the doctor really cares about the patient and is willing to fix the possible issues, he will have my approval.

Fitbone is a german nail right? German people usually only make high quality products
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #74 on: January 11, 2017, 02:58:18 PM »

Wittenstein has been around for over 60 years, is valued at almost 1 billion USD, is a European company (SE) with headquarters in Germany and has several thousand employees around the globe.
Fitbone is only a small division within Wittenstein, that as far as I understand resulted from the medical doctor/engineer Baumgart and Wittenstein.

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helloworld

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Re: Limb lengthening with Fitbone
« Reply #75 on: January 11, 2017, 03:04:32 PM »

Here are my x-rays from today:
http://imgur.com/a/fd5Bo
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Auron

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Re: Limb lengthening with Fitbone
« Reply #76 on: January 11, 2017, 03:52:22 PM »

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notimportant

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Re: Limb lengthening with Fitbone
« Reply #77 on: January 11, 2017, 08:57:31 PM »

There were several implant malfunctions in Musicmaker's case like in Helloworld's. It's well documented in the forum. Accident was another complication but implants failed without any accident. I don't know the details about the failure of the American guy but this guy had many complications too.
Helloworld's cloud is very good IMHO
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #78 on: January 11, 2017, 09:17:30 PM »

Notimportant: thanks for your positive opinion :-)

There are 4 forces at play in determining success:
1. Patient
2. Surgeon
3. Implant
4. Luck

In my particular case I would assume doctor and patient (me) did everything correct and it was mainly bad luck and implant.
I think in many cases it is patient fault, like lengthening too fast, not following recovery program, smoking, wrong nutrition, putting too much weight on implant too quickly.

But no surgeon nor implant is perfect, so combined with bad luck, we can all have complications. I had one, but I would say a small one, as I am now doing very well.

I decided that Internal LL, Monegal, Barcelona and Fitbone was the best combination at the time and would still take that decision today.
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #79 on: January 16, 2017, 02:34:04 PM »

When I say bad luck and implant, were the cause for me to have to get a replacement implant, I actually would not say that the implant manufacturer was at fault. In fact, I think the company has done everything correctly to assure the best quality and 100% functioning. But there is always the element of luck and nothing is 100%.
So I would not say that the implant manufacturer was at fault, but I would say that in my cases the failure falls within their area of responsibility.
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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #80 on: Today at 01:25:31 AM »

Does Monegal recommends you to walk with a walker too or you are just in wheelchair??? Which would be the protocol if the patient is overweighted?
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