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Author Topic: Wolverine's Post on Precice  (Read 4035 times)

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ChrisIsaak

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Wolverine's Post on Precice
« on: April 25, 2014, 03:08:38 AM »

Copying it here from the old forum. I think this is worth reading/discussing.

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Hello, just thought I would give everyone an update on the status of my treatment and the Precice. I arrived home on March 12 from the hospital and have been walking for about 2 weeks now. The results of my last x-ray before discharged showed the left femur being at 4.2 cm and the right 4.5 cm. I still feel some stiffness and pain in my hips especially when I try to walk moderate to long distances. I do feel sometimes when I walk that I may have quite a bit more of a discrepancy than what the x-ray showed due to my left leg wanting to sort of drag and a sharp pain I feel in the right hip/buttock. It's still relatively early though in the recovery so I'm going to give it some more time before I jump to any conclusions and try to continue to stretch more. Other than this everything seems to be ok physically. As for emotionally I'm not quite sure. I'm very disappointed I was so far away from reaching my target gain which was 7.5-8cm. I actually probably would have been ok with 6-6.5 considering what I got. So far I've barely gone out in public at all. I haven't seen or spoken to any of my friends or exes since before I went to South Korea. I fear that the full negative effects of this will not be felt until I recover enough and inevitably start to venture out again into society and attempt to ease back into my social life and other situations that will likely arise. I think that's when it will hit the hardest. I realize there maybe a lot of readers that think I should try to be more positive about this situation and be thankful for what I got and I appreciate that. I do try but ironically that's a very tall order given the circumstances. "It is what it is" in my opinion.

As for the situation with Dr. Lee, the Precice, and Ellipse technology in regard to remedial action no one has contacted me. I was told when I was in the hospital twice that the VP or someone from California was coming to Korea to investigate and attempt to rectify the problem. The day they were suppose to meet with me a rep from the local distributer in Korea showed up with a note pad. He apologized that the guy from California that was suppose to be there was in another country on business and that he would probably come the following Friday or weekend (no one showed up then either) and that he was there to take down any complaints I had to convey them to him. I told him exactly what Dr. Lee told me which was that the device had stopped working and this was most likely due to a mechanical failure or that the distraction force of the device was not strong enough to overcome the muscles surrounding the femurs. Not from premature consolidation. This is also stated on a medical certificate I received that I had requested from Dr. Lee before my discharge as well as copies of all my x-rays which according to Dr. Lee clearly show that premature consolidation was not the cause of the Precice failure to distract. If Sysop is ok with the idea I'll be happy to post copies of the medical certificate as well as the x-rays here in my diary or perhaps another section of the forum. Another thing I recall was that the week before I left ( Dr. Lee had already gone to the Severance hospital well before I left.) another doctor that was assisting the resident in taking care of us by the name of Dr. Ryue had several conversations with me. He told me in one conversation that Dr. Lee was flying to the US a couple days before I was leaving to attend some sort of conference with Ellipse technologies and that my case was going to be discussed and that someone would be in contact with me. This has not happened either. Since then I have attempted to e-mail Dr. Lee weeks ago and have received no response. I have also called Ellipse technologies twice and was told someone would contact me. Again no response.

As for the options I was offered as possible solutions by Dr. Lee were to remove the nail and replace it with a new one or remove the nail and use a monorail fixator to complete the lengthening. Or as he mentioned a possible refund for the nails. At one point he suspected both nails were defective which could have been true since the right nail was lengthening but at a very slow rate towards the end of treatment. At one point it seemed to have almost stopped completely or it had lengthened like 1 mm over the course of a week, but then started to slowly lengthen a bit more in the following weeks. Until I had to stop to avoid a big discrepancy due to the left nail stopping completely. I would have been fine with either of the first 2 options but Dr. Lee said the cost would be about the same as the first surgery to replace the nail and to do the monorail at the Severance hospital they could not say exactly what the cost would have been but It would have been impossible considering most of everything I had went towards the first surgery. I asked Dr. Lee if there was anything he could do to help with the cost of these surgeries and he said no because it was up to the hospital and he had no control of it. Now that I think about it I'm not even sure the first option I was offered would have worked since there was no follow up on if a replacement nail would have even been provided free of charge.

In the past several weeks I have been speaking with several legal experts in California about this matter. I really don't know what else to do now. I was hoping this would not be necessary and Ellipse and possibly some of the doctors here could come up with some sort of solution but things are not exactly looking very well. It would seem in order to continue lengthening again all that would be required would be to re break the right femur and replace the nail in the left femur with a new one and re break it. It would only take maybe a little more than a month to finish lengthening if even that. The only question would be the cost. If I knew Ellipse would consider helping me with this I'd be the happiest guy in the world and gladly sign anything they wanted but thus far they have made no efforts to rectify anything or shown any empathy nor compassion. They have not offered to refund the nail, they have not offered to replace the nail, or anything period. They refuse to even acknowledge my existence. Yet they were notified by Dr. Lee that there was a problem and one of their nails failed after a patient spent his life savings almost and had to borrow money from his father, had both his legs broken, and was disabled for several months. What does that tell you about them? I really hope this doesn't happen to anyone else.

One of the experts I spoke with gave me this website associated with the FDA. It shows there have been other complaints about the Precice as well.

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/results.cfm
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BilateralDamage

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Re: Wolverine's Post on Precice
« Reply #1 on: April 25, 2014, 04:25:43 AM »

This post is the stuff nightmares are made of.  While he's fortunate to not be suffering any real complications (besides minor leg discrepancies) he spent a   ton of money and time and physical health on a very small height gain.  Ellipse won't answer his requests for help because they don't need to, and I don't think he'll get anywhere with his lawyers sadly.

I'm not religious but I'm praying to every deity out there that this doesn't happen to me.
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KiloKAHN

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Re: Wolverine's Post on Precice
« Reply #2 on: April 25, 2014, 04:54:56 AM »

So how many positive outcomes have we seen with the precice? At this point I'm not sure what makes it so revolutionary compared to Fitbone or ISKD. So far I like the Gnail the most out of the internal options.
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Initial height: 164 cm / ~5'5" (Surgery on 6/25/2014)
Current height: 170 cm / 5'7" (Frames removed 6/29/2015)
External Tibia lengthening performed by Dr Mangal Parihar in Mumbai, India.
My Cosmetic Leg Lengthening Experience

Ronaldo

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Re: Wolverine's Post on Precice
« Reply #3 on: April 25, 2014, 05:43:49 AM »

Sweatpants has  stop updating her diary, I wonder why.  She did Precice with Dr Paley.
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Keep Growing

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Re: Wolverine's Post on Precice
« Reply #4 on: April 25, 2014, 07:32:43 AM »

This seem to happen with Precice 2 only though...
« Last Edit: April 25, 2014, 07:38:15 AM by Keep Growing »
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TRS

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Re: Wolverine's Post on Precice
« Reply #5 on: April 25, 2014, 10:03:40 AM »

So how many positive outcomes have we seen with the precice? At this point I'm not sure what makes it so revolutionary compared to Fitbone or ISKD. So far I like the Gnail the most out of the internal options.

At this moment, I too think that Guichet nail is the best option for internal. From what I have read so far, it seems that the PRECICE nail is not very effective lengthening against the force of the femur muscles and the  PRECICE/PRECICE 2 nail is not really suitable for inflexible people with bulky legs. This is why I believe that  Paley and Roabruch perform prophylactic release surgeries so the PRECICE nail can then actually function and lengthen properly. Therefore people who are considering the PRECICE nail should focus more on stretching and becoming flexible instead of building muscle mass(exactly what Dr.Birkholtz recommended) and should not hesitate in getting release surgeries done.
« Last Edit: April 25, 2014, 10:13:59 AM by TheRisingShorty »
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Blackhawk

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Re: Wolverine's Post on Precice
« Reply #6 on: April 25, 2014, 12:38:30 PM »

I feel bad for these people who spent a ton of money and had to deal with this crap.  But with any new technology you take a big risk by being the ginnea pig.  I think I would have to see many positive results before I put new expensive nails in my legs.
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Cooper

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Re: Wolverine's Post on Precice
« Reply #7 on: April 25, 2014, 12:41:49 PM »

This is really sad. Do you advise going against precise? If you were to redo all over what would you have done differently? May be we can learn from your experience.
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Starting Height: 160
Gained Femur: 6.9cm (Dr. Paley)
Right Tibia Goal: 5.5/6CM

Sweden

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Re: Wolverine's Post on Precice
« Reply #8 on: April 25, 2014, 02:51:45 PM »

Terrible, just maximum awful terrible!!!!
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173cm before LL with Sarin, jan -13. Now 180cm tall. Considering 5cm on femurs.

amatan

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Re: Wolverine's Post on Precice
« Reply #9 on: April 25, 2014, 10:40:39 PM »

I can confirm that everything he said is true.  I was with Wolverine during his three months in South Korea, and it was very unfortunate to see not only it happen, but how they continually jerked him around.  He wanted to find a reasonable solution while he was still there before he consolidated, but they simply ignored him at every turn, making up bull  to delay everything. 
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Did internal femurs using the PRECICE2 with Dr. Donghoon Lee in South Korea on December 27th, 2013, went from 5'7.5" to 5'9.6".  Will probably end up doing tibias in about a year with Dr. Birkholtz to get to 5'11".
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