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[TRS]

After reading Wolverines and Amatans diary, there may be malfunctions with the Precice 2 nail.
Here is a quote from Wolverines diary

"Ok, I just spoke with Dr. Lee and am sad to say there maybe a problem with the Precice 2. The results of my last x-ray showed my right leg had only lengthened 3 mm and the left 0. Dr. Lee has instructed me to speed up lengthening to 10 times each day and has prescribed an oral steroid for me to take twice a day to keep the bones from consolidating. It's fair to say I'm very upset about the news. The only thing I can think of is that there must be some sort of defect or mechanical problem with the Precice 2. Dr. Lee's assistant checked the x-ray and has remarked my femurs which were off by a few centimeters so maybe that will help but they say it doesn't really make that much difference . There are 3 patients here that are using the Precice 2. Two of which are doing femurs and 1 tibia patient. Of the 2 femur patients both are having almost the exact same problems. I feel like there's really not much I can do now except lengthen and wait for the inevitable result of my bones consolidating or having to go through another surgery. Dr. Lee said he's treated about 30 patients with the Precice nail and none experienced any of the problems we are with the nail lengthening. Yet the Precice 1 and the Precice 2 are suppose to have the exact same mechanics. So what could the problem be?  As of now things are definitely not looking well for me at all. There's really nothing else to say."

Reading this has got me really concerned and I am wondering if it would be a better option to stick with the original Precice nail rather than Precice 2 for 5-6 cm femur lengthening.

[mediocre]

I think the answer to this question would be speculative. P2 is supposed to be an improvement over P1. And Dr Franz was hinting that the original Precice would be phased out and replaced by P2 once the current stocks run out.

It's interesting that both of the cases happened under Dr Lee. I'd be very curious what would be the statement directly coming from Dr Lee regarding P2. If indeed P2 has defect, is it all the devices (unlikely), or a batch of the devices?

The company would have a liability if indeed there is mechanical defect.

[TRS]

I think the answer to this question would be speculative. P2 is supposed to be an improvement over P1. And Dr Franz was hinting that the original Precice would be phased out and replaced by P2 once the current stocks run out.

It's interesting that both of the cases happened under Dr Lee. I'd be very curious what would be the statement directly coming from Dr Lee regarding P2. If indeed P2 has defect, is it all the devices (unlikely), or a batch of the devices?

The company would have a liability if indeed there is mechanical defect.

Another patient of Dr Lee has started experiencing lengthening problems with Precice 2.
Here is the quote from amatan today

" bad news:  I suspect (will see what x-rays say in a few days) that my right leg is still not actually lengthening.  I don't feel like it is feeling the strain that it should if it was lengthening at the ~4.5 cm mark, and I am concerned.  Also, yet ANOTHER PRECICE2 patient has started experiencing lengthening problems on one of his legs (only lengthening about half as much as it should).  At this point this marks roughly HALF of PRECICE2 cases here having lengthening issues that have put their lengthening goals in jeopardy and left us all without any solution. I strongly suggest no one to go ahead and use the PRECICE2 with any doctor and to stick with nails that have been proven to actually work."

One could question Dr Lee's competency with the use of PRECICE 2 nail as no one in America have experienced problems with the new nail. Or probably, as mediocre stated, could be a batch of devices in Korea they may have a defect.

It is indeed speculative and just have to wait and see.

[mediocre]

Still nobody from the US has reported problems with P2.
I'd be closely following would-be-patients by Dr Franz later this year.
I hope they're isolated cases.

Another patient of Dr Lee has started experiencing lengthening problems with Precice 2.
Here is the quote from amatan today

" bad news:  I suspect (will see what x-rays say in a few days) that my right leg is still not actually lengthening.  I don't feel like it is feeling the strain that it should if it was lengthening at the ~4.5 cm mark, and I am concerned.  Also, yet ANOTHER PRECICE2 patient has started experiencing lengthening problems on one of his legs (only lengthening about half as much as it should).  At this point this marks roughly HALF of PRECICE2 cases here having lengthening issues that have put their lengthening goals in jeopardy and left us all without any solution. I strongly suggest no one to go ahead and use the PRECICE2 with any doctor and to stick with nails that have been proven to actually work."

One could question Dr Lee's competency with the use of PRECICE 2 nail as no one in America have experienced problems with the new nail. Or probably, as mediocre stated, could be a batch of devices in Korea they may have a defect.

It is indeed speculative and just have to wait and see.

[Cooper]

Amatan comments made me even worried about precise nail. I personally felt just can't trust this nail anymore and avoid using if possible. Unless the manufacturer, Ellipse technology, improves and success rate is over 99.99% or similar. That will be few years from now and I simply do not have patience to wait that longer.

I am thinking of non-precise method. Super sad to say after all the research so close to using this technology for LL. Now have to go back and find alternatives.

Dr. Lee is very competent doctor have done more than 30 precise1 and zero issues. It is the defective nail not his techniques IMO.

[ChrisIsaak]

Well the alternatives are simple;

- Precice I
- Fitbone
- Jamal Nail
- Albizzia equivalents (Betzbone, Guichet Nail)
- HLN

The first three and Guichet nail seem to be the most reliable options.

[Cooper]

Remember with precise1 you will wheel chair bound for long time. That can be depressing. Going from able to disable even if temporary can take a toll.

[rickybobby]

Dr. Paley's patient that is currently lengthening with precice 2 has release surgery on some if their muscles. Not sure if this is on purpose because he is one of the consultants of the precice systems and know the limitations of lengthening with precice on femurs compared to Tibias where there is less muscle strain.

If that is the case he has to disclose this and not just release muscles and lower their athletic ability!

[TRS]

Update from Junkim021789 dairy regarding the PRECICE 2 device.

"Update: X-ray showed that i grew 4mm and 3mm out of 5.25mm. This means the device isn't lengthening as well as it should. I asked dr.lee and he said there isnt enough callus to cause any resistance against distraction. His theory is that my muscles are tenser from the lengthening and that is slowing down the device. This sounds about right, because when I was lengthening my femur with precice1, it used to not lengthen as well starting 3cm ish. It didn't really cause any problem for me cause my target for femur was 3.5 and it still is not that big of an issue cuz my target for tibia is 4-4.5. Right now, Im at 3cm and I think the device will hold up at least one more cm before my muscle completely overpowers the force of distraction. However, if u plan to do like 6 or higher using precice, be prepared to deal with unforseen circumstances. But most patients with target of less than 5 came out very satisfied.
This issue seems to be very common among precice patients, both 1 and 2. People who have reached 6 or higher (there were 3 on femur that i know personally) were either super flexible naturally or had months of preparation stretching the crap outta their muscles before the surgery and of course during the lengthening phase.
Precice definitely has its upside. Scars very small and the process is nearly pain free, though some patients may disagree. However, it seems to have some flaws especially in the later stages of lengthening. "

[BilateralDamage]

^ Man, what a nightmare this is.  I haven't even lengthened yet and I'm beyond stressed over this decision!

I'm guessing Paley's patients turn out better with PRECICE because he does ITB releases, which allows for a lot less restriction by the muscles.

[Cooper]

^ Man, what a nightmare this is.  I haven't even lengthened yet and I'm beyond stressed over this decision!

Tell me about it. I am pulling my hair out and grinding my teeth. It's been about a year thinking about this...should have done last year. Waited for precise2 for longgggggggg time and now can't trust the damn nail.

I have lost motivation because could not make the right decision. I am doing LL in May/June no matter what. Now have some good idea where to go. Stress is dwindling down lately.

Bd, I can totally relate to your situation.

[BilateralDamage]

If you can't trust the nail, which doctors are on your list to go with Cooper?

[Franz]

Hey guys,

I've been in contact with Ellipse, the company that makes precice, at a high level (vp).
They say that they are not aware of any problems as yet and that nothing has been brought to their attention yet. They quote the successes that dr Paley has had. They do not seem to be worried.
I am of the opinion that we probably have to consider increasing the number of follow-ups and consider adding itb releases routinely. 
I still maintain that tight follow up should prevent permanent problems.
Personally, I would still go for the advantages of the precice 2 and make sure I choose a surgeon that will communicate properly and manage the process intensively.

[BilateralDamage]

Hey guys,

I've been in contact with Ellipse, the company that makes precice, at a high level (vp).
They say that they are not aware of any problems as yet and that nothing has been brought to their attention yet. They quote the successes that dr Paley has had. They do not seem to be worried.
I am of the opinion that we probably have to consider increasing the number of follow-ups and consider adding itb releases routinely. 
I still maintain that tight follow up should prevent permanent problems.
Personally, I would still go for the advantages of the precice 2 and make sure I choose a surgeon that will communicate properly and manage the process intensively.

I really appreciate you doing that for us Dr. Birkholtz.  While PRECICE 2 is having problems with Dr. Lee's patients, I have total faith that you'd make the proper decisions while keeping a close on your patients.

[BilateralDamage]

I emailed Dr. Paley and he had this to say in regards to the ITB release:

"If you do not perform the ITB you will never be able to do athletics or even walk normally. If the ITB is cut the way I do it it regenerates and never causes a problem or any limitation. All of my patients go back to previous level of activities of daily living and sports function."

I'd have to agree that ITB release is the way to go.  Dr. Paley patients turn out well, and it's clear the patients who haven't had this procedure done are having a lot more issues (not even just patients lengthening w/ PRECICE).

[mediocre]

Does it mean that itb regenerates its own when distracted by twisting the hips (just like Betz and guichet)?

And precice on femur doesn't?

[OverrideYouGenetics]

after reading various athleticism forums with people who had this surgery or considered it, I have come to the conclusion that I rather avoid this ITB release surgery.

its an absolute last resort. People only do this surgery if they must.  you won't be the same again.

[mediocre]

I agree that we should do it as last resort.

after reading various athleticism forums with people who had this surgery or considered it, I have come to the conclusion that I rather avoid this ITB release surgery.

its an absolute last resort. People only do this surgery if they must.  you won't be the same again.

[ChrisIsaak]

Perhaps I'll be able to share my insight about the ITB surgery after my recovery & return to sports.  My right leg had ITB release and my left leg didn't, so I'll be able to compare directly. Nice, eh?

[mediocre]

I hope there would be definitive answers to the Precice 2 problems in South Korea.

Otherwise, the anxiety about P2 is dampening my enthusiasm to do CLL with Dr Franz.

[Taller]

Good luck finding a better internal femur option for that price though

[mediocre]

The first Precice 2 diary (Paley) from the forum that could not be named has just finished with distraction.

After 66 days, 64mm and 65 mm on either femur. Looks so sweet on x-ray!

And those Precice numbers are just, well, precise!

He's now consolidating. I'm curious when can he actually fully weight bear, then walk, then run.

[amatan]

It's just such a shame that a limb lengthening advance that seemed so good on paper turned out so badly for a couple of us here.  All of the time lost and crap that I had to endure because my right leg didn't lengthen properly really just made me want to get this done with ASAP, walk again, and break up my lengthening into 2 procedures rather than to continue using the PRECICE2. 

[TRS]

Amatan,
Sorry to hear about what you had to endure during your LL journey.
It has definitely shocked many of us who are considering LL with PRECICE 2.
Did you get any information about why your PRECICE 2 had malfunctions from Ellipse and Dr.Lee?

[ChrisIsaak]

Good luck finding a better internal femur option for that price though

Why? Fitbone is actually a tad bit cheaper than Precice, I believe.

Does someone know how much the Precice nails cost? (the nail itself). Maybe Dr. Franz could answer this.

A single Fitbone nail is €16,000. So in bilateral lengthening, one has to pay €32,000 for Fitbone (only for acquiring the nails).

[OverrideYouGenetics]

It's just such a shame that a limb lengthening advance that seemed so good on paper turned out so badly for a couple of us here.  All of the time lost and crap that I had to endure because my right leg didn't lengthen properly really just made me want to get this done with ASAP, walk again, and break up my lengthening into 2 procedures rather than to continue using the PRECICE2.

Hey Amatan,

I have followed your diary on old forum  despite being banned. I wish I could reply to your thread over there but:

I am really sorry this happened to you, mate. I cannot comprehend how devastating it must be for you to hear that your leg have prematurely consolidated.
Really hope you get compensation for the cost of the nail from Ellipse tech.

[mediocre]

Welcome to the forum. I only wish all the best will turn out of this for you.

New technology could indeed be very unpredictable, because as it is, the first ones to try can be hit and miss.

I think it's 3 of you there in South Korea having issues (you, junkim021789, wolverine)? I'm just wondering why Rtaller from Dr Paley seems to have no issues at all and actually has just finished with distraction (with near-precise measurements, 66 days and 64mm and 65mm on either femur).

[Franz]

Why? Fitbone is actually a tad bit cheaper than Precice, I believe.

Does someone know how much the Precice nails cost? (the nail itself). Maybe Dr. Franz could answer this.

A single Fitbone nail is €16,000. So in bilateral lengthening, one has to pay €32,000 for Fitbone (only for acquiring the nails).

precice is around the same price depending on where its sold. We get them at a price of 15K USD per nail.

[mediocre]

Interesting to know. Precise is a little cheaper than fitbone.

precice is around the same price depending on where its sold. We get them at a price of 15K USD per nail.

[amatan]

If anyone wants to know the full story of what happened here, pm me.  It's not something I feel comfortable posting in public.