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[arnoldhams10]

What price can we expect for the Precise Max nail within the US?

My budget is going to be about 80,000 (not considering nail removal).

Will this be possible within the US, or should I just consider planning to go abroad?

[TheDream]

I’m assuming Paley institute will be the first ones to get them and they charge about 100,000 US.

Maybe the others will be cheaper but it will take a bit longer before they get them.

[arnoldhams10]

100k lol

[Acemace86]

Or you can do precice 2.2 for $70k and get on with it now.

[CLLvet]

What is the advantage of the new Precice Max over Precice 2.2?

Is Precise Max fully weight-bearing? I have heard that it is not.

[babygirl]

Apparently it is weight bearing practically, just not licensed to be weight bearing by the FDA.

A doctor called Assayag said so in this forum a few days ago.

[DanishViking]

The difference is huge. So basically for most patients your're forced to walk with an walker or for heavier patients a wheelchair for usually 5-6 months!! With the Precice Max like the old stryde nail you can weightbear technically right after surgery however most patients can walk without any support while they're lengthening. It's technically also going to be more safe since nail breakage is most likely going to happen less and the risk of blood cloths is much lower since you will be allowed to move much more. So it's definitly in my opinion worth paying a little exstra for and waiting a couple of months if you're in the us.

[TheDream]

The difference is huge. So basically for most patients your're forced to walk with an walker or for heavier patients a wheelchair for usually 5-6 months!! With the Precice Max like the old stryde nail you can weightbear technically right after surgery however most patients can walk without any support while they're lengthening. It's technically also going to be more safe since nail breakage is most likely going to happen less and the risk of blood cloths is much lower since you will be allowed to move much more. So it's definitly in my opinion worth paying a little exstra for and waiting a couple of months if you're in the us.

I wonder like when you walk up and down stairs, as you put all the weight on one leg, if this puts the pressure beyond the weight bearing limit?

[CLLvet]

The difference is huge. So basically for most patients your're forced to walk with an walker or for heavier patients a wheelchair for usually 5-6 months!! With the Precice Max like the old stryde nail you can weightbear technically right after surgery however most patients can walk without any support while they're lengthening. It's technically also going to be more safe since nail breakage is most likely going to happen less and the risk of blood cloths is much lower since you will be allowed to move much more. So it's definitly in my opinion worth paying a little exstra for and waiting a couple of months if you're in the us.

Seems as though Precice Max is only "partial weight bearing" and will only be considered partial weight bearing in the future. This is according to this post from Dr. Assayag. Seems as though they will need to conduct many more clinical trials, perhaps for years to come, in order to decide whether to give it a designation of more than 50 lbs partial weight bearing.

http://www.limblengtheningforum.com/index.php?topic=84911.0;topicseen

[Kintaeryos]

100k lol

Is there a particular reason why LL is so expensive, especially the internal methods?

[JustineCollins]

safe, less pain and less complications ofc

[Kintaeryos]

safe, less pain and less complications ofc

Yeah, but the price of a sports car or apartment? What is it about LL specifically that necessitates such a price?

[DanishViking]

According to Paley the most experienced surgeon in the world who has helped developed it, it has already been tested to withstand much more force and proved to be fully weightbearing. The FDA are only giving those guidelines to save their unnecessarily careful, So yeah worth the wait of a couple of months in the US and 1-2 years in Europe. You will most likely be able to walk after days instead of months with a lower complication risk. Only downside is 10% exstra cost however for that price small increase its a nobrainer!!

[Temoc]

Yeah, but the price of a sports car or apartment? What is it about LL specifically that necessitates such a price?

It's a niche surgery, companies do not produce hundreds of thousands of nails every year. So to make a profit they need to make it expensive. The same goes for the doctors, Paley do not do hundreds of CLL surgeries every year and he wants to make at least a couple million a year to make his time going through medical school, residency and decades of experience worth it.

Internal LL will only get considerably cheaper if they start a mass production of a good quality internal nail in a cheaper country.

[CLLvet]

According to Paley the most experienced surgeon in the world who has helped developed it, it has already been tested to withstand much more force and proved to be fully weightbearing. The FDA are only giving those guidelines to save their unnecessarily careful, So yeah worth the wait of a couple of months in the US and 1-2 years in Europe. You will most likely be able to walk after days instead of months with a lower complication risk. Only downside is 10% exstra cost however for that price small increase its a nobrainer!!

Perhaps you are correct. But I also wouldn't get my hopes up too high until this nail has been adequately tested. It is important to remember that Precice Max is made of titanium. Stryde's durability and ability to allow full-weight bearing was due to it being made of stainless steel alloy. Precice Max is still made of titanium, just like its non weight-bearing counterpart Precice 2.2.

So it is unclear if a titanium nail will ever be designated fully weight-bearing (like Stryde) was. I can understand why the FDA is hesitant to label it as such. Of course, patients and surgeons can proceed with caution and allow their patients to fully weight bear (at their own risk). However, there is risk of nail bending in those cases. Nail bending should be avoided because it could carry all sorts of poor consequences (and extra costs) for the patient.

So yes, I am curious what the studies will show, but Precice Max doesn't seem like it is currently equivalent/ superior to Stryde (which I used in 2019 for my femur lengthening and I thought Stryde was a terrific nail).

 Hopefully, with time, we can feel safe/ secure knowing that Precice Max has been proven to be a fully weight-bearing solution, despite it being made of titanium.

[EndGame]

Pmax is not fully weight bearing unless you can fit the 13mm or 14mm nails. The 11.5mm and the smallest (10.7mm?) are about the same weight bearing as p2.2 12.5mm. Paley had a good slide in his presentation comparing pMax and p2.2 at various diameters. Anyway, no one should get their hopes up until their consult and they find out based on EOS X-rays what diameter nail will fit their bones.

[DanishViking]

Its not true in the live episode with Cyborg4life, he is telling in detail how it's only guidelines and how even the 10 mm nail will be able to weightbear probably around 150 lbs pr nail. See here at 28:00 - 32:30 / the test that already been done and 36:50 his telling what he will most likely end up recommending in the future. Please don't spread misinformation...

[EndGame]

Look around 35:47 in the video and you'll see the weight bearing test results. P2.2 12.5mm about the same as pMax 10 and 11.5mm. You've never done LL, likely never will, and you post things that are often wrong or misleading. Perhaps take your own advice and stop posting misinformation? I posted in this thread primarily because your misinformation and prevent your confusion spreading lol.  Since I'm going back for another LL I followed up with Paley Institute right after that interview. Dr. Robbins was very clear that patients around my weight with 10 or 11.5mm pMax will not be allowed to walk without using their arms and walker to de weight. Yes, the FDA 50lbs max weight bearing is only a guideline and safe per Paley to do more but that's a far cry from fully weight bearing at 10mm nail for all or even most patients. There's also a difference between fully weight bearing as in you can stand balanced weight equal across both legs and fully weight bearing as in you can safely walk around with just a cane. Please stop spreading misinformation...

[CLLvet]

Look around 35:47 in the video and you'll see the weight bearing test results. P2.2 12.5mm about the same as pMax 10 and 11.5mm. You've never done LL, likely never will, and you post things that are often wrong or misleading. Perhaps take your own advice and stop posting misinformation? I posted in this thread primarily because your misinformation and prevent your confusion spreading lol.  Since I'm going back for another LL I followed up with Paley Institute right after that interview. Dr. Robbins was very clear that patients around my weight with 10 or 11.5mm pMax will not be allowed to walk without using their arms and walker to de weight. Yes, the FDA 50lbs max weight bearing is only a guideline and safe per Paley to do more but that's a far cry from fully weight bearing at 10mm nail for all or even most patients. There's also a difference between fully weight bearing as in you can stand balanced weight equal across both legs and fully weight bearing as in you can safely walk around with just a cane. Please stop spreading misinformation...

Terrific post, EndGame. Good clarification and level of detail

[TheDream]

Look around 35:47 in the video and you'll see the weight bearing test results. P2.2 12.5mm about the same as pMax 10 and 11.5mm.

But why are you comparing the 12.5 mm from P2.2 with the 10 mm from Pmax? Isn’t that the entire point?

That most short people won’t be able to fit a 12.5 mm precise 2.2 rod so now with the Pmax they get 190 lbs (86 kg) fatigue load per rod at 10 mm instead of the current Precise 2.2 84 lbs (38 kg) fatigue load per 8.5 mm rod or 118 lbs (53 kg) fatigue load per 10.7 mm rod?

For the 12.5 mm precise 2.2 rod the fatigue load was 191 lbs (87 kg) while for the Precise max at 13 mm which is the comparable size it is now 320 lbs (145 kg) fatigue load.

[EndGame]

But why are you comparing the 12.5 mm from P2.2 with the 10 mm from Pmax? Isn’t that the entire point?

That most short people won’t be able to fit a 12.5 mm precise 2.2 rod so now with the Pmax they get 190 lbs (86 kg) fatigue load per rod at 10 mm instead of the current Precise 2.2 84 lbs (38 kg) fatigue load per 8.5 mm rod or 118 lbs (53 kg) fatigue load per 10.7 mm rod?

For the 12.5 mm precise 2.2 rod the fatigue load was 191 lbs (87 kg) while for the Precise max at 13 mm which is the comparable size it is now 320 lbs (145 kg) fatigue load.

The reason to compare to p2.2 12.5mm nail is because it's not deemed fully weight bearing and has about the same tests results on weight bearing as pMax 10 and 11.5 which highlights how for many pMax 10 will not be fully weight bearing as in you can walk around with just a cane. My posting was never intended as a criticism of pMax. If DanishClown hadn't posted misleadingly about pMax being fully weight bearing for all even at 10mm I'd never have posted in this thread.

Yes, pMax is much better than  p2.2. That's why I waited for it. I'll be doing Tibias this year with Paley/Robbins. Yes, I'll be much happier with pMax 10 (or maybe 11.5 if I'm lucky will fit) instead of weaker p2.2

Feels like your pretending I criticized pMax or said it wasn't a big improvement. I didn't do that. I was REALLY wanting to just use a cane after being stuck mostly in a wheelchair when I did Femurs with p2.2 but after emailing with Dr. Robbins I learned I'd still be using a walker. I shouldn't have much needed for a wheelchair after the first week or two.

PMax is great. A huge improvement. However, there will still be many patients needing much more than just a cane to walk around with, myself included

[DanishViking]

I agree with dream, that is the huge difference for people like me with small bone canals that can't even fit a 10,7 precice nail.

Well Endgame if I constanly spread misinformation please give some examples besides this according to you?  I almost always link sources to everything I spit out. Walking around fully weightbearing and with a cane is in my opinion pretty similiar and still regardless a huge improvement. If the precice 2.2. nail 10,7 was going to fit inside of me, I would have been doing LL right now so please stop your insults for no reason lmao. I still highly doubt that Paley is lying and most people wouldn't able to only use a cane while using the smaller Pmax nails. What is your weight btw? Sounds like your're on the heavier side and is an outlier compared to your bone size... Many people who use the smaller nail sizes also whey less since their bones are smaller... I as an example only whey about 54 KG, mainly because of my smaller size bones... And do you have any kind of proof yourself that your're doing LL with dr Robbins? You could just be talking out of your...

[EndGame]

I agree with dream, that is the huge difference for people like me with small bone canals that can't even fit a 10,7 precice nail.

Well Endgame if I constanly spread misinformation please give some examples besides this according to you?  I almost always link sources to everything I spit out. Walking around fully weightbearing and with a cane is in my opinion pretty similiar and still regardless a huge improvement. If the precice 2.2. nail 10,7 was going to fit inside of me, I would have been doing LL right now so please stop your insults for no reason lmao. I still highly doubt that Paley is lying and most people wouldn't able to only use a cane while using the smaller Pmax nails. What is your weight btw? Sounds like your're on the heavier side and is an outlier compared to your bone size... Many people who use the smaller nail sizes also whey less since their bones are smaller... I as an example only whey about 54 KG, mainly because of my smaller size bones... And do you have any kind of proof yourself that your're doing LL with dr Robbins? You could just be talking out of your...

At 54kg that's 119lbs which would make you an outlier on the lighter side. You're a troll trying to get me to dox myself, no thanks lol. Your earlier post didn't qualify the fully weight bearing claim to only for most people. Thank you for correcting your claims in that regard. Maybe over half will be, but as I noted lots of people won't be. Not super likely a 10mm nail fits you fine but 10.7 too big, and there's a 8.5mm p2.2 nail you could've used that's almost as strong as the 10.7, so you didn't need to wait. But if you're actually going to do LL good luck and you'll have a much easier time with the stronger pMax. Which doctor you going with? If it's this summer with Paley we can meet in person and you can get the proof you want.

[DanishViking]

You didn't answer my question about your weight XD From the research I have done the 8,5 precice nail isn't recommended since it will break way to easily and your're forced in wheelchair for 5 months at least, which is unacceptable to me. The doctor at AFA which also has decades of experience told me that they don't use the 8,5 mm nail ever since he had a tiny 150 cm girl wheying less than me, bending the nail even tho she followed the weightbearing protocol. I would definitly choose Paley if I had the money, however I don't so after visiting AFA i'm thinking about either dr Giotikas, Dr Birkholtz or maybe still AFA, since they where very professional. Which one get's the new nail quickest, so most likely dr Giotikas I think since his operating in the European Union.

[wantingtobetaller]

Is there a particular reason why LL is so expensive, especially the internal methods?

Less likely to get complications, and much less scarring.

The latter part is very important to me as I do not want to advertise that I got limb lengthening surgery done.

I am an honest person. I will not lie but I don't want people to think right away when they see me

 "oh this guy definitely got limb lengthening surgery done."

That is why I plan to get precice over LON.

[DanishViking]

Precice is superior in every way. It offers a solution which has way less complications, is much more comfortable, but comes at a greater cost. But when we're talking about ones legs cheaping out on them is stupid af.

[Kintaeryos]

Precice is superior in every way. It offers a solution which has way less complications, is much more comfortable, but comes at a greater cost. But when we're talking about ones legs cheaping out on them is stupid af.

Add full weightbearing too with Precise Max, which eliminates a lot of other problems with post-LL recovery, and it becomes common sense to pursue that for something as serious as LL. I would only consider external methods if I was REALLY struggling with my height, didn't have enough money and needed LL asap.

[Kweku22]

Will the price of other nails go down with the release of precise max?

[TheDream]

PMax is great. A huge improvement. However, there will still be many patients needing much more than just a cane to walk around with, myself included

Yes I wondered about this too. Paley said they divide the max fatigue load by 2 in order to get the weight bearing capability. So for the 10 mm nail that is 86 kg /2 = 43 kg. For the 13 mm nail that is 145 kg / 2 = 72.5 kg.

Now I know you have one rod per leg. But essentially when walking either just normally or up and down the stairs shouldn’t one leg be able to weightbear your entire weight for that rod to be truely weight bearing?

So a person would have to weigh maximum 43 kg for the 10 mm rod to be weight bearing or alternatively be maximum 72.5 of for the 13 mm rod to be weight bearing, no?

I don’t know how often people of about 170 - 172 cm height will be able to use a 13 mm diameter rod. Is this rare or fairly normal?

[bruhh]

Look around 35:47 in the video and you'll see the weight bearing test results. P2.2 12.5mm about the same as pMax 10 and 11.5mm. You've never done LL, likely never will, and you post things that are often wrong or misleading. Perhaps take your own advice and stop posting misinformation? I posted in this thread primarily because your misinformation and prevent your confusion spreading lol.  Since I'm going back for another LL I followed up with Paley Institute right after that interview. Dr. Robbins was very clear that patients around my weight with 10 or 11.5mm pMax will not be allowed to walk without using their arms and walker to de weight. Yes, the FDA 50lbs max weight bearing is only a guideline and safe per Paley to do more but that's a far cry from fully weight bearing at 10mm nail for all or even most patients. There's also a difference between fully weight bearing as in you can stand balanced weight equal across both legs and fully weight bearing as in you can safely walk around with just a cane. Please stop spreading misinformation...

Great post, it's always the ones on here who have never gotten the procedure that are extremely opinionated and spread false information. I could not fathom racking up so many posts on a forum about a procedure one will most likely never get. It's unfortunate and worrisome for people who actually got the procedure, or are serious about getting it and are in a financial and lifestyle situation to do so, coming to the forum for research and reading layman's "mental masturbation" that usually constitutes itself in the form of fear-mongering or copium. For those who haven't gotten the surgery, get multiple consultations, take what you hear from doctor's marketing ploys and media tours with a grain of salt, and take what you read on here from people who haven't had the surgery with an even bigger grain of salt.

[CLLvet]

I want to push back on some of the posts here saying that externals are inferior to Precice. I would disagree when it comes to tibias. Obviously, you DO NOT want to use externals on your femurs. However, when considering tibia surgery options, externals are not necessarily inferior to Precice. I had the option of using Precice or externals. I chose LATN with externals (over Precice) for several reasons-

1). Externals provide you the ability to fully weight bear, whereas Precice does not. This is huge during a lengthening experience. I was weight-bearing throughout my lengthening with LATN on my tibias. Precice patients were in a wheelchairs the whole time.

2). Going off of point 1, you are less likely to develop a ballerina foot (a common complication for tibias) if you use externals (versus Precice). Again, it is the weight bearing factor. Walking helps ward off ballerina foot. A patient who uses externals can walk with crutches (up to about 1 hour per day according to most surgeons), whereas Precice patients can only walk very small distances with their walkers. Even this is dangerous, the Precice nail can bend if you walk too much.

3). As a result of points 1-2, recovery after lenghtening is much quicker with externals. After I finished lengthening and began consolidation, I only used my crutches for about 2.5 months before I began walking unassisted. Precice patients take about twice as long as that to begin walking unassisted. 

4). The scarring issue is over-exaggerated in my opinion. Yes, I have scars from my externals. But they are not really that visible due to me having a lot of hair on my calves. But yes, they are there. Most people probably don't notice my scars and how often do I really wear shorts outside of the swimming pool and/or gym? Honestly not that often. Finally, I can say with nearly 100% certainty that nobody who sees the scars thinks I had limb lengthening surgery done. It just doesn't cross anybody's mind, most people are simply not aware of limb-lengthening surgery and would not jump to that conclusion.

For femur CLL I absolutely agree that internal method is a better option. But based on the other posters in this thread, Precice Max is not fully weight bearing (like Stryde was), so please keep that in mind.

 For tibias, externals are not as bad as some of you guys think. I say this as someone who went through both CLL with externals AND CLL with internals. So I have a reference point for comparison.

 If you have any questions about my experience, feel free to send me a PM.