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Author Topic: Limb lengthening with Fitbone  (Read 18362 times)

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helloworld

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Re: Limb lengthening with Fitbone
« Reply #31 on: December 12, 2016, 05:47:42 PM »

Let's keep our heads cool! At least I do not want to try to get anything unreasonable from anybody. To some extend we as patient do assume certain risks.
Also, three points:
1. Dr. Monegal explained very convincingly to me why he is using Fitbone and not Precise, even though Precise, would pay him a nice commission. He knows that Fitbone is better for the patients.
2. I have talked to many patients of Monegal (about 8) and they are all very happy. Musimaker is an exception but even she does not put the fault on the doctor.
3. I do think Wittenstein, the maker of Fitbone is very precise in their engineering and have not been negligent in any of the cases where fitbone failed, which according to them is only 0.3%.
I am in continuous discussion with them about my case and will let you know more about how these discussions go.
Stay tuned :-)
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #32 on: December 12, 2016, 07:34:48 PM »

To notimportant:
I also went to a consultation of Dr. Monegal and I also met patients that just came buy or that he connected to me.
However, he DID mention that there was the case of Musicmaker and that there were complications.
I then went on my own, without letting anyone know to Mic residence to talk to patients myself.
THere were two patients that, I talked to one guy who was very happy with the procedure. And then I was offered to meet a girl that apparently had, had complications, which I now know is "musicmaker".
As I had already met many patients and as I did not want to be scared of any complications, I declined the offer to meet her.

So it seems to me know after talking to musicmaker that "yes" things went wrong, but Dr. Monegal did not try to hide that case and I know that Dr. Monegal and her are actually now good friends.
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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #33 on: December 12, 2016, 08:38:41 PM »

I am still confused, Musicmaker case was due to doctor or other factors. The comp.ications he had were due to bad surgery or the body of the patient itself?
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Auron

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Re: Limb lengthening with Fitbone
« Reply #34 on: December 12, 2016, 10:33:53 PM »

I am still confused, Musicmaker case was due to doctor or other factors. The comp.ications he had were due to bad surgery or the body of the patient itself?
She was unlucky. What happened to her could have happened to anyone and the doctor is not at fault. But it really saddens me that people keep bringing her name up to only talk about complications.

Anyways and besides all the setbacks she went through, she managed to stay more active than most LLers and is headed in the right direction. I take my hat off to her.
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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #35 on: December 13, 2016, 12:43:01 AM »

I give my congratulations to her, too, just was a doubt I had becuase people say different things and I dont know who is telling the truth and who is lying.
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musicmaker

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Re: Limb lengthening with Fitbone
« Reply #36 on: December 16, 2016, 02:36:19 AM »

Thanks, Auron and Onemorefoot. It's true I try to keep as much active as I can in order to avoid sadness, but feeling bad and even devastated is sometimes unavoidable.

I don't want to talk about my case because information is being constantly manipulated by some trolls here to do harm to people I appreciate a lot. Yes, I DO care about my doctor and I don't want his name to be bashed because he's a good friend of mine and I firmly believe he is a highly skilled surgeon. That's why this forum makes me feel sad.

However, I'm still here because I need the support of some of you, guys and girls. Please, put yourself in my place and be good to me. I'm in a very difficult situation. Don't send me anonymous hate emails and don't try to hack my accounts because this scares me a lot. Please, I need you to be there to support me, as much as I have supported some of you in the past. Don't let me down. 
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applesandoranges

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Re: Limb lengthening with Fitbone
« Reply #37 on: December 16, 2016, 04:28:10 AM »

in retrospect would you have done it with precice?
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JP

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Re: Limb lengthening with Fitbone
« Reply #38 on: December 16, 2016, 05:45:36 AM »

Besides being friendly outside the hospital did Dr. Mongal fix your leg problems? ... how much more did you pay your complication?

Thanks, Auron and Onemorefoot. It's true I try to keep as much active as I can in order to avoid sadness, but feeling bad and even devastated is sometimes unavoidable.

I don't want to talk about my case because information is being constantly manipulated by some trolls here to do harm to people I appreciate a lot. Yes, I DO care about my doctor and I don't want his name to be bashed because he's a good friend of mine and I firmly believe he is a highly skilled surgeon. That's why this forum makes me feel sad.

However, I'm still here because I need the support of some of you, guys and girls. Please, put yourself in my place and be good to me. I'm in a very difficult situation. Don't send me anonymous hate emails and don't try to hack my accounts because this scares me a lot. Please, I need you to be there to support me, as much as I have supported some of you in the past. Don't let me down.
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hype88

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Re: Limb lengthening with Fitbone
« Reply #39 on: December 16, 2016, 06:09:50 AM »

Hey mate,

Thanks for posting your diary it's very inspirational!

Like yourself I've been thinking of doing this for sometime now. But I think I've come to the point where I just need to get it done to move on with my life. I've also been thinking of lengthening two segments 5cm with Dr Monegal. My only real concern is recovery time and being away from my business. However I did read that you've managed to keep working through, which give me hope that I might be able to do the same thing.

I'm roughly 172 and my aim it to get close as possibly to 183cm without losing athletic ability/ I've attached a photo to give show you my body proportion!
http://imgur.com/a/ogh3M
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IwannaBeTaller

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Re: Limb lengthening with Fitbone
« Reply #40 on: December 16, 2016, 10:58:25 AM »

I'm roughly 172 and my aim it to get close as possibly to 183cm without losing athletic ability

Forget it.
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zantac20

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Re: Limb lengthening with Fitbone
« Reply #41 on: December 16, 2016, 04:46:47 PM »

I think 11cm is too much. But is there any safe cm range that will let you safe, lets say, 85% athletic ability?
Forget it.
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musicmaker

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Re: Limb lengthening with Fitbone
« Reply #42 on: December 16, 2016, 06:44:10 PM »


Yes, I have already said he is technically good. He fixed my leg problems.

I don't think Precice is better than Fitbone.
 

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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #43 on: December 16, 2016, 07:41:37 PM »

We support you, sorry for remember you those bad momentos.
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musicmaker

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Re: Limb lengthening with Fitbone
« Reply #44 on: December 16, 2016, 08:16:04 PM »

No problem Onemorefoot. I wasn't talking about you. I was referring to some private emails I have been receiving from people of this forum who managed to get my personal email.
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #45 on: December 16, 2016, 08:29:06 PM »

Musicmaker why do you defend Fitbone if you had several bad implants? Did they compensate you?
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IwannaBeTaller

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Re: Limb lengthening with Fitbone
« Reply #46 on: December 16, 2016, 09:05:10 PM »

I think 11cm is too much. But is there any safe cm range that will let you safe, lets say, 85% athletic ability?

Up to 4 cm would make it possible to still perform decent. But anything can happen. You could get severe leg problems even with a small surgery. Only do this surgery if you are very desperate and care about being taller more than your athleticism.
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JP

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Re: Limb lengthening with Fitbone
« Reply #47 on: December 16, 2016, 10:05:10 PM »

Musicmaker, why are you making up stories that Dr. Monegal is technically good. it's not right it's not true . Cooper said he had complications with Dr. Monegal and i thought you're still in a wheelchair after other surgeries?

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musicmaker

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Re: Limb lengthening with Fitbone
« Reply #48 on: December 17, 2016, 12:34:57 AM »

Man, it's not me who says Dr Monegal is technically good. I am repeating what other doctors and the Wittenstein manager himself said about him leading the top surgical team doing this technique. I am not a doctor, but, from my point of view, it's true he's a highly skilled surgeon and I feel safe in his hands. If it wasn't true, I would have run out of here from minute zero.  He isn't perfect, of course, but I won't allow him be put to shame because it's unfair. I am still under his care because I am confident in him.

I won't answer notimportant and other trolls' questions because I don't want to hijack helloworld's diary. I will just say I have finished my lengthening and I am doing better each day. The End.

Merry christmas for you all.
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #49 on: December 17, 2016, 12:45:10 AM »

I am sorry Musicmaker. I didn't want to make you sad. Just found strange that your implants failed and you defended the implants. I thought perhaps they had compensated you
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musicmaker

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Re: Limb lengthening with Fitbone
« Reply #50 on: December 17, 2016, 05:19:01 PM »

Hi lluser. Thank you for asking.
I do not want to kidnap my fellow helloworld's diary as you always do.
Once we figured out what was the problem with electric devices and me, we managed to finish my lengthening...long time ago. It happens the same with electric stimulators.
Compensation? The thing that compensates me is having finished my lengthening, met all these people and of course Dr Monegal who 'in words of other doctors and the WITTENSTEIN manager himself, he leads the top surgical team doing this technique.

Merry Christmas
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JP

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Re: Limb lengthening with Fitbone
« Reply #51 on: December 18, 2016, 12:23:34 AM »

I do not want to kidnap my fellow helloworld's diary

?
Don't want to fight with you homie but you seem like the type of person that is getting paid to advertise Dr. Monegal.

Merry Christmas
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #52 on: December 18, 2016, 11:32:13 PM »

I don't think she's getting paid but she's manipulated. Cooper said this doctor monitors the forum and manipulates his patients
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YourSpaceBoyfriend

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Re: Limb lengthening with Fitbone
« Reply #53 on: December 18, 2016, 11:59:31 PM »

Another musicmaker/monegal drama
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #54 on: December 19, 2016, 06:37:21 AM »

Thanks for your message and for your picture!

11 cm seems really seems to much, especialy if only doing one segment. If you do both tibia and femur that would be possible.

You look quite proportional, and femur is the method most doctors prefer (I heared Guichet even does not do Tibia). So if where you I would do 7 cm to get to 5'11. I myself am doing 5,5 since it seems that for every ml you increase after 5 especially after 7 you risk of not recovering 100% increase.

You look very fit! So that seems to help a lot in the recovery process!

Not sure about your job, but I would definetly do both femures at the same time, and keep one week as much as possible.
You work time will be less, if you want a fast recovery, because ideally you would go to the gym every day, I go four times a day for around 30 minutes in order to ensure that I keep my flexibility and muscle strengths as much as possible.
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helloworld

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Re: Limb lengthening with Fitbone
« Reply #55 on: December 19, 2016, 06:40:28 AM »

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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helloworld

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Re: Limb lengthening with Fitbone
« Reply #56 on: December 19, 2016, 07:10:54 AM »

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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notimportant

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Re: Limb lengthening with Fitbone
« Reply #57 on: December 22, 2016, 10:58:55 PM »

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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helloworld

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Re: Limb lengthening with Fitbone
« Reply #58 on: January 03, 2017, 08:08:08 PM »

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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onemorefoot

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Re: Limb lengthening with Fitbone
« Reply #59 on: January 03, 2017, 08:16:25 PM »

Three surgeries are too much
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notimportant

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Re: Limb lengthening with Fitbone
« Reply #60 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 #61 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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