Quote from: SpeedDialer on February 14, 2023, 01:12:18 PM
B+ Tier: Maybe Dr. Koehne should be here too, but not sure what nails he has access to, not too many recent diaries.
Koehne does precise 2. He mainly does medically required lengthening cases (mostly discrepancy cases)
Quote from: stretched on February 13, 2023, 04:31:21 PMRozbruch is great too. TBH I don't really know much about him, but all diaries I've read about him have been really good, and he is an obviously a very skilled orthopedic surgeon. The only thing is his price, which I've heard are way more expensive than everyone else, but If you live near NY and can swallow the price, you can't go wrong with him
Rozbruch has been doing this surgery for decades as well, not just Paley. He's the Chief of the Limb Lengthening and Complex Reconstruction at HSS, which is the number 1 (!!!) orthopedic hospital in the US. Putting him below anyone on this list, including Paley, is ridiculous.
Beyond the surgery itself (which is obviously important), the advantage with Rozbruch is that he's your actual Doctor. He's checking up on you pre / post surgery, and you're meeting him on your follow ups. With Paley, from what I can see, you're only meeting him during consultation. He'll do your surgery, but you're never going to see him again, and will communicate with others throughout the process.
I think the big advantage for Paley, is the support system. I think they have housing options where you can socialize with other LL patients, and also their PT center which you go to 5 days a week. That's really convenient, and can really help mentally as well. Rozbruch doesn't have anything like that, so you're more "isolated". Of course it does mean you have to stay there for the entire lengthening process, which isn't possible / convenient for some people.
Quote from: hippo60 on February 14, 2023, 06:21:32 PM
I think the big advantage for Paley, is the support system. I think they have housing options where you can socialize with other LL patients, and also their PT center which you go to 5 days a week. That's really convenient, and can really help mentally as well
Yeah it's interesting. I asked in Athens if I could pay to do a 5th day (patients do only 4 days a week) and the doctor in Athens was against it, saying we need a break (we usually do MonTues break ThursFriday and then the PT center is closed on the weekends in Athens). I'm not sure what to make of it, I guess this is also an advantage of Paley to have the option to do 5 times a week.
I've usually used the no-PT day (wednesday) to go swimming for femurs (feels pretty good/easy to stretch thighs in the water). I don't think swimming/walking in the water is that useful for tibias in the early stages, like it helps with strength but I don't think stretching the calves in the water is that good. The water just holds your body up and you don't end up putting that much force on the calves (not that we'd even want to for precise 2) though bending the upper body down while doing it can help slightly (but it stretches hamstrings too).
I wonder if Paley Institute PT center is open on the weekends (?), which could allow for more flexible scheduling or like 2 days PT, 1 day off kind of thing (for 66.6% of days having PT?). Not sure how they do it
After seeing the ballerina foot on one patient in real life, I would have been willing to pay to do a 5th day of PT per week in Athens out of fear--- but it seems awkward to sort of do this with the PT center against my doctor's advice (the PT center talks to the doctor alot). And my conclusion from this is that if he doesn't want us to do a 5th day, then I will need to get a better training routine at the hotel.
If I do tibias with precise, it seems like something like this for at home training?
1. I have heard that slant board while sitting is one of the best things to do? since you can't do slant board while standing with precise 2, at least at my weight (too much)
2. Wearing the splints/braces (they are huge in Athens at least, like armor) when awake to stretch calves, maybe being on the computer to distract yourself from the discomfort?
3. Wearing some pair of softer splints when sleeping/resting? Officially I don't think Giotikas talks about this, but other patients I've talked to say that the huge splints/braces are not possible to sleep in?
4. Possibly wearing some kind of drop foot product when using the walker, but we use the walker for such short periods of time with precise 2, I'm not sure this matters. But maybe eventually when there is enough bone growth to use the walker more frequently?
5. On amazon there is some kind of strap that connects or wraps around your sock that someone here in Athens seems to like, maybe I will try this, anyone tried it?: https://www.amazon.com/Stretcher-Stretching-Fasciitis-Achilles-Tendonitis-Hamstring/dp/B08JHZYQ7X/ref=sr_1_7?crid=3RIPPBMX2MTQK&keywords=calves+stretcher&qid=1676408299&sprefix=calves%2Caps%2C1084&sr=8-7
If I had a bit more money dedicated for tibias, I think I would go with Becker for weight bearing instead --but I might just either not do tibias. Or do 4cm tibias precise 2 based on what I've seen of other precise tibia patients.
When you're thinking about internal tibias, I think Guichet and Becker look much better on a tier list than they would initially seem to people. Like the ability to use crutches and do standing stretches during tibias seems great compared to being wheelchair bound for so long and having to do seated/lying down stretches for so long. I could be wrong, but it also seems that clicking for tibias is not that painful.
I wonder if there any downsides for clicking tibias that I'm not considering though? Since Giotikas doesn't do internal weight bearing tibias, wonder if there is any health risk for doing them? We just don't have that many clicking tibia diaries, which leonzul was talking about earlier and the reasons for why became clear. Maybe an argument to put Becker/Jean-Marc Guichet in S tier if we remove things like problems related to the IT band release (we'll see how Becker's approach goes, I think it may work out great) and the more extreme lengthening cases. I get why no one would put them in S tier though when we have the impression that the Paley says his institute has a better safety record than other places (and I think I and most people would agree that this statement is probably true)
S tier: Paley, Rozbruch
I can't speak to the other doctors, but this is dead to rights accurate. These two are the undisputed heavyweight champions of this procedure. Both have decades of experience with many internal and external devices, with the lowest rates of complication. This is really a coin toss choice and will ultimately depend on which recovery process you're more comfortable with.
One reason you see more Paley diaries is the community aspect of doing the surgery with Dr. Paley. There are patients concentrated around the campus, and they're much more willing to speak about their experience. I met several in person during my visit and they were very forthcoming with questions, etc. Dr. Rozbruch is also a lot more selective of who he takes for this procedure, as you still have to pass psych eval with Dr. Westrich. Dr. Paley no longer uses that filter (he used to use Dr. Westrich as well).
With Dr. Rozbruch, patients usually go back into an environment they can thrive in and PT is on your own, and just kind of hide away. The former part of the process really appealed to me as I have a nice well appointed condo in a warm place and I'm retreating there for the remainder of this process. Even with Dr. Paley's patients, none that I spoke to were keeping an active blog. I suspect 90+% of people that undergo this procedure do it very quietly and with extreme anonymity.
Both are world renowned as limb deformity surgeons. Things that impressed me about Dr. Paley and Dr. Rozbruch's practice were the number of patients there for severe limb disformities and other non-CLL related issues. I saw kids, elderly people, etc. with leg, arm problems, external fixators, etc. They are both also teaching doctors with lots of fellows. Dr. Rozbruch was in the OR every day of the week and still made his rounds to his patients.
During COVID, elective surgeries were not allowed in New York. So for 2+ years, Dr. Rozbruch converted his clinic into an urgent triage center for patients with deformities, etc. who could not get care anywhere else. His practice is just now beginning to get overwhelmed with CLL again. I was scheduled 6 months out.
When I consulted with Dr. Paley, I asked if he would be the one performing the surgery and he said yes. So AFAIK, in both cases, Drs. Paley and Rozbruch would perform the surgery for you.
I should mention that I also consulted with Dr. Franz Birkholz in South Africa for a third opinion. I found him to be incredibly competent, and he is a very well known surgeon with a great reputation. He would essentially be my only overseas option, but overseas was not an option for me. Surprised to see his name is not here.
With Dr Paley straight up burying him as a beginner who doesn't know what he's doing, it's amusing to see Debiparshad getting these opinions on the forum of being a high tier doctor.
@ 1:04:30
"This is very common, but it's a beginner mistake... I'll tell you one thing, if I was gonna be in a big name magazine, I wouldn't send out an x-ray showing that I have no idea how to prevent this from happening. This is a beginner mistake by a surgeon who clearly gets a PR and then shows the whole world that they don't know how to prevent this. That's bad. I mean that's really bad. Not to say I haven't had this, I did in the early days. But then my early days are a long time ago...we all go through our learning curve. You know, on a selfish basis, you'd like to not be someone's learning curve. This should not occur...Problem is that this patient is going to be happy with their length, but they're gonna be very unhappy with their alignment and they'll probably eventually seek surgery to get that done. Anyway, bottom line is be careful that your surgeon knows these things... I think you should move up your learning curve far enough that you're not making these mistakes before you go out there and advertise that you do these type of procedures. It's not fair to the public. This got published. I saw this and just about fell off my chair and thought 'oh my God, seriously?' And you know, of course the lay public reading this doesn't see what's wrong. It's just glaringly obvious to any expert in the field that this is just a beginner mistake." - Dr Dror Paley
Quote from: TheDream on February 13, 2023, 05:20:48 PMWonder how Monegal with fitbone would be rated.
He had a group of successful diaries a while back. But haven’t heard much since.
And many tragic cases too. Also fitbone is the most unreliable nail ever so any doctor that still uses it is a big no for me.
Also I can't understand why some of you rank Guichet anything more than the worst tier.
The money he wants are almost the same as Paley, who is the best LL doctor in the world, and had many terrific cases that we only hear in third world countries.
For me only a fool would give so much money to go Guichet.
And also Becker is a new doctor in LL. Of course he can't be a top tier compared to trauma doctors with much experience like Giotikas, Pili etc.
And finally, merchants like Derbipashad can't be top tier for that and only, even if they are good doctors which I doubt because top.doctors don't need merchandise.
In a few words, I completely disagree with most of the lists above.
KiloKahn, what a spot-on post and reminder that this procedure should not be taken lightly or undergone with suboptimal Doctors and/or in unsafe environments. I remember a Jeff Bezos quote:
"There is no algorithm for experience"
And that rang true to me with considering options.
I did due diligence on this for 5 years before pulling the trigger, and missed the Stryde window, maybe fortunately. Throughout my assessments, Dr. due diligence, etc., my #1 overall goal remained safety.
Dr. Paley mentioned the numbers stated on the video in my consult with him. Same with Dr. Rozbruch. I asked how many Precice nails he had implanted and he said "thousands". Both also said "we have the facilities and experience to get you out of any bump in the road should you encounter one."
My two cents, at any rate. Everyone has different reasons, goals, resources etc., but IMO this is not a procedure you leave to chance and in inexperienced hands.
Quote from: uponly on February 14, 2023, 11:09:10 PMMy two cents, at any rate. Everyone has different reasons, goals, resources etc., but IMO this is not a procedure you leave to chance and in inexperienced hands.
Facts, NEVER cut corners and try to save money and go with a sketchy Dr. Your ability to walk is not something you want in the hands of chance
Quote from: Body Builder on February 14, 2023, 11:08:38 PMAnd many tragic cases too. Also fitbone is the most unreliable nail ever so any doctor that still uses it is a big no for me.
Also I can't understand why some of you rank Guichet anything more than the worst tier.
The money he wants are almost the same as Paley, who is the best LL doctor in the world, and had many terrific cases that we only hear in third world countries.
For me only a fool would give so much money to go Guichet.
And also Becker is a new doctor in LL. Of course he can't be a top tier compared to trauma doctors with much experience like Giotikas, Pili etc.
And finally, merchants like Derbipashad can't be top tier for that and only, even if they are good doctors which I doubt because top.doctors don't need merchandise.
In a few words, I completely disagree with most of the lists above.
Becker learned from Betz for many many years, he's new in being the one running the practice but as far as I remember he's been there like 6-10 years? Which yeah, he's not paley/rozbruch level, but im sure he's still good enough.
The more I learn about giotikas it seems like he's the best option for those of us who aren't rich. He offers a weight bearing nail and his price is not ridiculous. Obviously its smarter to go with paley or rozbruch, but for some people including me we cant bear to continue living our lives like this, so ill get one lengthening with him in the next few years.
It feels like Becker still has a big advantage over Giotikas for tibias because Becker has a weight bearing internal tibia nail option. Ex: someone could do betzbone 2.0 femurs, wait 1.5 years, fly back to Germany, and have them removed + have the betzbone 2.0 tibias put in. Same with Guichet, they could do something similar and have weight bearing the entire time/be able to go back to work earlier because they can get on crutches earlier. Dr. Betz claimed in his cyborg4life interview that patients who go back to work seem to do well (? not sure why? because they are forced to walk a bit more? Is betz wrong?)
I don't know anyone who has done this: Giotikas gnail femurs -> fly back to Greece gnail femur removal -> fly to Germany -> Betzbone 2.0 tibias. I think once someone goes with Giotikas once, they are pretty likely to go with Giotikas again (get used to Athens, the PT center, getting used to interacting with Dr. Giotikas) instead of going to Guichet or Becker for weight bearing tibias. That's just a guess though. If someone did this (two LL's with Dr. Giotikas), they would probably do precise tibias and miss out on weight bearing clicking tibias
Clicking tibias vs precise tibias. How long do each stay in a wheelchair on average and how much length do each get on average? We don't have stats but I think we may have a hunch. Height Journey did 3.5 cm precise tibias. I know two people who did 4 cm precise tibias. There should be some cases of 5 cm and 6 cm around in this forum for precise tibias. Some rarer cases of people trying to go for 7cm precise tibias, but I don't know the final outcomes
What about for clicking tibias? How much length did they do and how long did they stay in a wheelchair on average?
There are some questions to ask oneself- how long can you personally tolerate being in a wheelchair? When do you need to get back to work or walk around school? How much length on tibias are you trying to get? If you want externals, how will you respond after they are put on? If you still have your external frames on after leaving your doctor's area, what will you do if the externals are damaged after you have left your doctor's area? (a former Athens patient is going through that now and will fly back to Athens) Different answers for different people.
But in a few years this may all change if new nails come out and maybe so maybe this will all become moot if everyone gets access to weight bearing internal femur and weight bearing internal tibia options eventually. In that scenario, I wonder if Parihar would become very popular if that happened. He would have good training from Paley and access to potentially a great device someday.
You must be logged in to post a reply.