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Author Topic: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley  (Read 106067 times)

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BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #31 on: February 17, 2014, 09:42:12 PM »

Thanks guys for all your support!

Choosing my doctor has not been an easy decision.  I've been grappling with many different doctors these past few weeks, weighing all the benefits and costs of each one and the different nails they use.  I can technically afford any doctor, but this makes the deciding process so much more difficult.
  • Birkholtz - His knowledge, ethics, and precaution is everything you need in a good LL doctor.  He also offers PRECICE (with accommodations) at the most competitive price I've seen.
  • Guichet - His patients can ride a bike the day after surgery, how can you compete with that?!  This doctor is also at the top of my list for this reason, I would like to be able to work on my gait from the first day of lengthening, which is something the PRECICE does not allow for.
  • Lee - Offers PRECICE and obviously has a lot of experience with CLL (even has a YouTube channel showing off his patients).  I'll have to see what his updated prices at Severance Hospital are.
  • Jamal - Looks to have a very personal connection with his patients and his prices are very low.  Though, I've decided against going with him because he just doesn't have enough positive results.
  • Paley - His results speak for himself, though his prices are very high.  He's also located in the U.S. which is a bonus for me.
Coming to this decision is difficult, we're not talking about a new play-thing or a car, we're talking about the sake of my legs.  Right now, I've narrowed it down to Birkholtz and Guichet.  I'm afraid I might not meet Dr. Guichet's pre-requisites of training (and I'm not interested in training at the Isokinetic center before my surgery) so that may rule him out right off the bat.  We'll see when he responds to my email.

Dr. Paley is a good choice as well, but Dr. Birkholtz appeals to me more with his own personality and cautionary attitude.  I've grouped them together because they both offer the same nail.  For this reason, I don't think Paley is the most viable option for me.

The PRECICE 2 has been having troubles in some threads on old forum  and this has really turned me off to it.  I don't want an additional surgery due to pre-consolidation (and for 2 people to have this problem is quite concerning).  I understand speeding up the rate of consolidation is the way to counteract this problem, so hopefully Dr. Birkholtz will be keeping a very close eye on our rate of consolidation through x-rays.

God damn, I haven't even had LL yet but I'm grinding my teeth already!
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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #32 on: February 17, 2014, 09:52:09 PM »

(and for 2 people to have this problem is quite concerning).

Amatan and who is the other?
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #33 on: February 17, 2014, 09:54:59 PM »

Amatan and who is the other?

Wolverine on old forum .  It's interesting to note that they're both under Lee's care in South Korea.
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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #34 on: February 17, 2014, 09:57:14 PM »

Wolverine on old forum .  It's interesting to note that they're both under Lee's care in South Korea.

I see. Fortunately for them Dr.Lees surgery price covers complications.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #35 on: February 17, 2014, 10:00:42 PM »

He said he has consolidated already and for surgery. 2nd surgery is over?
My old forum  access is down again.

Amatan and who is the other?
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mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #36 on: February 17, 2014, 10:01:34 PM »

Are you going for 6.5cm under Dr Franz?

Thanks guys for all your support!


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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #37 on: February 17, 2014, 10:06:45 PM »

He said he has consolidated already and for surgery. 2nd surgery is over?
My old forum  access is down again.

since you dont have access.

quote from wolverine
Quote
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
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #38 on: February 17, 2014, 10:15:33 PM »

Thanks kusop but I meant Amatan who's scheduled for 2nd surgery due to consolidation and unequal lengthening.

I've asked Dr Franz about this Precice 2 discrepancy on his (Dr Franz) thread.
I asked the question, with Amatan and Wolverine in mind.

It's interesting what's the response of Dr Donghoon Lee from this development?

since you dont have access.

quote from wolverine
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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #39 on: February 17, 2014, 10:18:18 PM »

Thanks kusop but I meant Amatan who's scheduled for 2nd surgery due to consolidation and unequal lengthening.

I've asked Dr Franz about this Precice 2 discrepancy on his (Dr Franz) thread.
I asked the question, with Amanan and Wolverine in mind.

It's interesting what's the response of Dr Donghoon Lee from this development?

oh.. amatans had his surgery to rebreak the osteonomy site. He also wrote that his leg is now lengthening again but hes knee has swollen and its severely numb to the point he's afraid he wont walk again. He regretted LL.

I believe he is just freaking out or having some kind of mood swing.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #40 on: February 17, 2014, 10:21:22 PM »

F**k a duck! Hope he recovers well.

When a bone has prematurely consolidated, is this mostly the fault of the doctor for not monitoring properly or it's just each patient's uniqueness (unforeseen)?

oh.. amatans had his surgery to rebreak the osteonomy site. He also wrote that his leg is now lengthening again but hes knee has swollen and its severely numb to the point he's afraid he wont walk again. He regretted LL.

I believe he is just freaking out or having some kind of mood swing.
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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #41 on: February 17, 2014, 10:26:19 PM »

F**k a duck! Hope he recovers well.

When a bone has prematurely consolidated, is this mostly the fault of the doctor for not monitoring properly or it's just each patient's uniqueness (unforeseen)?
I think its both.
In this case Dr.Lee actually spotted upcoming premature consolidation and told him to distract faster. Maybe he should have seen in earlier with more frequent x-rays.

I am sure I read somewhere that the reason girls usually have higher success ration than men in LL is because of their lack of muscle mass in the tigh. Having flexible muslces are good for LL, but having packed too much muscles will cause greater force against distraction meaning internal patients have harder time clicking/precice lengthening.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #42 on: February 17, 2014, 10:31:40 PM »

Did he actually spotted premature consolidation or unequal distraction?

Yeah, it makes sense about the girls' higher success.

I think its both.
In this case Dr.Lee actually spotted upcoming premature consolidation and told him to distract faster. Maybe he should have seen in earlier with more frequent x-rays.

I am sure I read somewhere that the reason girls usually have higher success ration than men in LL is because of their lack of muscle mass in the tigh. Having flexible muslces are good for LL, but having packed too much muscles will cause greater force against distraction meaning internal patients have harder time clicking/precice lengthening.
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Cooper

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #43 on: February 19, 2014, 08:23:11 AM »

Bd,
On your doctors comparison I agree on most part except on dr. Jamal. I do think he has good results. Alihan and one before him are doing well. Emanuel has weak callus formation but that is hardly a surgeon fault. The callus formation are independent to patients variant. He is walking good and I am sure he will do well. Ocean is doing great so far.

In addition he has done over 50, I think 57 to be accurate CLL. Went to same university and practices on same hospital where two late pioneer CLL doctors (bliskunov & dragon) used to work. They both invented IM nails and dr. Jamal upgraded to his own version call jamalov nail. The nail is full weight bearing made of titanium and only requires two nails instead of four. He also did his PhD thesis in internal tibia. I think professor jamal is a great caring doctor and works in institution where they have done over 500 CLL surgeries. Sometime I think he is not getting enough credit he deserves.

His 15 years of experience also speaks for itself. He and dr. Birkholtz are top two up and coming CLL doctors. This is my opinion and wanted to share with you all. I welcome any comments and criticism.

FYI- these are the two doctors I am thinking to go with but still undecided.

Best,
Cooper
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Starting Height: 160
Gained Femur: 6.9cm (Dr. Paley)
Right Tibia Goal: 5.5/6CM

BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #44 on: February 19, 2014, 07:57:40 PM »

Cooper, I agree wholeheartedly with you.  My major concern is the nail he uses.  He's had a problem twice with the clicker not working properly, which is why emanuel needed a second surgery to correct this issue.  emanuel may have not needed to be in a wheelchair for so long if it wasn't for this second surgery.

Also, Ocean posted recently that his clicker wasn't activating properly which Dr. Jamal has said he will correct in his second surgery.  Those two cases are mostly concerning to me.  I am rooting for Ocean to do really well, because that might make Dr. Jamal a viable option again to me.
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kneehowguys

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #45 on: February 22, 2014, 12:04:43 PM »

Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?

I think Leechlet originally wanted Guichet because of the potential for 10cm.

I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..

Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?

What are your thoughts on the civil unrest in Ukraine?

Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?

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Metanoia

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #46 on: February 22, 2014, 01:21:17 PM »

Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?

I think Leechlet originally wanted Guichet because of the potential for 10cm.

I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..

Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?

What are your thoughts on the civil unrest in Ukraine?

Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?
Hi,

Guichet doesn't need titanium replacements. His nail is much superior to the Betzbone. Please don't post misinformation when your don't have actual experience. The titanium nail replacement is a very traumatic surgery. Apart from the cost, patients experience it as more painful than the original LL surgery. With a good nail and a good surgeon nobody needs a titanium replacement.
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Metanoia

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #47 on: February 22, 2014, 01:24:15 PM »

Also i forgot to mention that most of the time patients lose a few mm due to the titanium replacement.
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OverrideYouGenetics

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #48 on: February 22, 2014, 01:56:39 PM »

Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?

I think Leechlet originally wanted Guichet because of the potential for 10cm.

I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..

Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?

What are your thoughts on the civil unrest in Ukraine?

Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?

The distraction mechanism is different. Albizzia nails rotate to distract, precice uses induction or something to distract. Precice is not strong enough to distract against the strength of the muscles when you lengthen 6cm++. Thats the reason.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #49 on: February 23, 2014, 06:28:03 PM »

Why do you think that the more extreme leg lengthenings 8cm+ have all been achieved by albizzia clicking type nails while it seems even with precise 2 getting to 6-8 has been a major struggle for so many patients?

I think Leechlet originally wanted Guichet because of the potential for 10cm.

I may be mistaken but it seems Betz has two things in common: 1) the highest lengthenings in the diaries 2) ... the most titanium nail replacements ..

Why hasn't there been as many titanium nail replacements for precise than as for albizzia type nails (gnail, betzbone)?

What are your thoughts on the civil unrest in Ukraine?

Do you believe that going from 5'6 (or was it 5'5...) to 5'8 will be life changing for you?

Hmm, the other guys seem to have covered most of your questions.  But in regards to going from my current height (5'5.75") to 5'8, yes, it will definitely be life-changing.  The life changing comes not from how others will treat me, but from how I will view myself and reflect that in my personality.  I won't feel short anymore, and I won't be grouchy as result.  I'll feel taller, more confident in myself, and more outgoing and approachable than before.  I want to reach 5' 10" after 2 surgeries, but who knows, maybe I'll be so content with 5' 8" that I won't need the second surgery.  5' 8" is by no means tall or even average where I live, but 5' 8" is leagues better than being 5' 5.75".

As far as the civil unrest in Kiev, it's a real bummer.  No way I would consider lengthening there in its current state.

-----

Wanted to share some info, Dr. B sent me the guesthouse homepage that contains pictures: http://www.natanja.co.za/

It looks beautiful, a huge change of scenery for me (right now, I look out my window and all I see is drab grey and snow).  Dreaming about the plush greens in SA!
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mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #50 on: February 23, 2014, 06:35:05 PM »

I was planning to get personal consultation by April to check out the place, but looking at those pictures, I might not need to. The place looks relaxing.


-----

Wanted to share some info, Dr. B sent me the guesthouse homepage that contains pictures: http://www.natanja.co.za/

It looks beautiful, a huge change of scenery for me (right now, I look out my window and all I see is drab grey and snow).  Dreaming about the plush greens in SA!
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BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #51 on: March 10, 2014, 07:33:44 PM »

Hello everyone!

I'm currently in the waiting room for a certain doctor... Dr. Paley! (what a twist!)

After having a 3 hour long phone call with Arche on this forum (props to him, he's a very fun guy to talk to) he reminded me how stupid I am for not considering Paley with the finances I have.  Well, I took his advice and here I am!  After my consult, I'll update this thread with what I've learned and the options I'm considering.  I have a looong list of questions for him (if you want me to ask him anything in particular, just post here.)

The institute is beautiful, and the hospital is really nice.  Staff I've met so far are super friendly.  I also saw the red car Sweatpants posted in her thread, parked right outside the building. :D
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KiloKAHN

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #52 on: March 10, 2014, 07:44:15 PM »

Hello everyone!

I'm currently in the waiting room for a certain doctor... Dr. Paley! (what a twist!)

After having a 3 hour long phone call with Arche on this forum (props to him, he's a very fun guy to talk to) he reminded me how stupid I am for not considering Paley with the finances I have.  Well, I took his advice and here I am!  After my consult, I'll update this thread with what I've learned and the options I'm considering.  I have a looong list of questions for him (if you want me to ask him anything in particular, just post here.)

The institute is beautiful, and the hospital is really nice.  Staff I've met so far are super friendly.  I also saw the red car Sweatpants posted in her thread, parked right outside the building. :D

Based on my e-mail exchange with him it seemed like he no longer does cosmetic lengthening with anything but Precice, but for those considering him for tibias it might be an issue considering the possibility of permanent knee pain from inserting the rod. Would be interesting to know what he has to say about the knee pain issue in general and if he would do externals for lengthening tibs if someone was adamant about not getting an internal device.

Also since you're in the area, it might be worth visiting Dr. Jean Cole.

http://fhorthoinstitute.com/physicians
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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

BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #53 on: March 10, 2014, 08:00:29 PM »

Kilo,

You bet permanent knee pain is on my list of questions to him.  I am very interested in the idea of quadrilateral lengthening but not if there's such a large probability of a permanent complication..

Thanks for the doctor suggestion too :) I'm only in Florida for the day so I won't have enough time to visit that doc though.
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mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #54 on: March 11, 2014, 01:30:20 AM »

I wonder how much is your allotted budget for your LL, if you don't mind. Dr. Paley is on my top list if money is not an issue.

Does he really give old forum  members discount? How about us, LL Forum members? ;)

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Smallguy

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #55 on: March 11, 2014, 02:01:13 AM »

Does he really give old forum  members discount? How about us, LL Forum members? ;)

Mentioning old forum  to Paley is just a marketing gimmick by Sysop to booster the popularity of his website so that doctors would pay more for advertising. Chris and other members said that the price would work out to be the same whether or not you do Sysop a favour mentioning to the prospective doctor about old forum . Don't be tricked please.
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I live in the American Gardens Building on W. 81st Street on the 11th floor. My name is Patrick Bateman. I'm 27 years old. I believe in taking care of myself and a balanced diet and rigorous exercise routine.

BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #56 on: March 11, 2014, 03:09:35 AM »

Wow.  I learned so much.  He seriously knows what he's talking about and I can say that he also evaluated my body much better than Dr. Rozbruch did.  I just got off my flight from Florida and am tired as hell, but I'm going to give a long update on what I've learned tomorrow, while it's still fresh in my brain. The first half of the consult was with one of his fellows (but don't let this deter you, the fellow has assisted Paley on over 100 of his surgeries).

Just from the consult, my big summation point is, if you have the money, go Paley!  You will not be disappointed. As in any surgery, there's no guaranteed results, but Paley is the most respected in this field for a reason.
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Smallguy

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #57 on: March 11, 2014, 03:30:12 AM »

Good for you. Are you going to him for sure? Can't wait for that update 8)
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I live in the American Gardens Building on W. 81st Street on the 11th floor. My name is Patrick Bateman. I'm 27 years old. I believe in taking care of myself and a balanced diet and rigorous exercise routine.

Polycrates.

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #58 on: March 11, 2014, 04:52:48 AM »

So no go for Birkholtz? I agree with everyone else, if you have the money, go with Paley. I was banking on you being Birkholtz's first though.
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Tibial LON for 6cm- Nov 2013, Dr Sringari -177/178cm to 183/184cm
Prospective Femoral Lengthening w/ Precise 3 (if out) Nail for 7cm- Jan 2019, Dr Birkholtz -183/184cm to 190/191cm

And it was here that he professed to his disciples: all of life's bounties lay somewhere upon the dreaded bell curve

mediocre

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #59 on: March 11, 2014, 05:24:07 AM »

I wonder how much would be the difference between Dr Paley and Dr Franz. If not that big, then definitely Paley.

So no go for Birkholtz? I agree with everyone else, if you have the money, go with Paley. I was banking on you being Birkholtz's first though.
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BilateralDamage

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #60 on: March 11, 2014, 05:07:12 PM »

I wrote up a big summary of key points from our consult, which I'll elaborate on in an FAQ-style post.  But first I should mention that I was very interested in doing quadrilateral lengthening.  There's 2 types, one is simultaneous (meaning you have both surgeries on the same day) and then there's staggered (have tibiae surgery first, and then femurs done 3 weeks later, what Sweatpants is doing).  My consult jumped straight into quadrilateral lengthening with Paley.  I'll get into lots of other interesting things I've learned too after our quadrilateral discussion.

What are the costs of quadrilateral lengthening for simultaneous vs. staggered?
The pricing for simultaneous is $150,000 and the cost for staggered is $170,000.  Keep in mind, the increased price is not going into my (Dr. Paley's) pocket.  It's entirely to the hospital for its OR time costs.

Do you recommend simultaneous quadrilateral lengthening?
No.  I don't know if it's because I'm getting older, but I've been taking a lot less risks lately laughs. (he continues to elaborate on this point, but I'm breaking everything up for organization)

What are the risks associated with simultaneous quadrilateral lengthening?
There's a lot.  You have a very increased chance of fat embolism,  definite need for a blood transfusion, and an increased risk to your life.  We've only done 1 case of simultaneous limb quadrilateral lengthening and thank god he didn't have any serious issues.  The way I look at it is this- you're young, healthy, and fit.  Most likely you wouldn't have any severe complications, but the price differential is really not that hefty ($20,000) and risk to your life is not worth any amount of money.  You're going to be in a lot of pain and suffering too.  It's a lot of trauma for a body to endure, and I don't want you to have to go through that kind of pain.

We recently had a case of fat embolism with one of our patients.  It was scary, and he came out with only an increased heart rate for 2 days, but it could have been worse.  These are things that you cannot predict will or won't happen.

Misc. on quadrilateral lengthening.
Chances are, with quadrilateral limb lengthening, you will not be able to lengthen as much as you'd like.  The reason is the intense strain your soft tissue is going under simultaneously, and for this reason, you will only be able to lengthen at max 10 cm.  The man who did simultaneous surgery only went up to 8 cm because he was very concerned about his proportions.

Lengthening is initially done .75 mm/day on the tibiae initially and 1 mm/day on the femurs.  Because you're 21, you'll be allowed to begin lengthening the day after surgery.  If you were over 30, you would be required to wait at least 1 week before you were allowed to lengthen.  Keep in mind, these lengthening rates are very subject to change, and we will be monitoring your rate of progress to see which segments need adjustments based on the complications you're incurring.  ROM is key, and if your ROM is affected, we'll have to act accordingly by reducing your lengthening (for some patients, we have stopped lengthening entirely).

For staggered surgeries, you will want someone with you the first 2 weeks of both surgeries.  That means for 2 weeks after your first surgery and for at least 2 weeks after your second surgery.

Have you had any complications with your PRECICE/PRECICE 2 nails?
Yes, we've had two PRECICE (first generation) nails break.  Ironically, it was at the end of their lengthening period too.  One of them said he wasn't even aware that he was lengthening anymore since he didn't have any pain, and as a result performed over-strenuous physical activity which resulted in a broken nail.

Have you heard about the PRECICE 2 lengthening complications in South Korea and have you this yourself?
No, we haven't had any of our PRECICE 2 nails break or stop lengthening knocks on wood out of already over 40 nail insertions.  We had 2 cases of the first generation PRECICE nails that didn't lengthen, but that was out of over 100 nail insertions.  We check to make sure that the nail lengthens properly when we insert the nail and lengthen your leg 1 mm.

What drugs will I be on after surgery?
Pain medication and blood thinners.  You will be required to stay on a blood thinner the day after surgery until when I say you can stop.  This will most likely be 1-2 months after you're done lengthening, so you will be on blood thinners for a while.  You have an increased risk of blood clots (which can result in heart attacks) while undergoing LL and we make sure to take all necessary precautions for your livelihood.

What's physio like?
One hour a day, 6 days a week.  We notice the guys who do the most physical therapy breeze by leg lengthening.  That means taking the exercises you learn here, and continuing to do them for hours back at your home.  One guy even brought his own physical therapist and he really breezed by here, lengthening his femurs 8 cm.  We think it's because his PT was so hot though, kept him motivated. everyone laughs, fellow nods his head in agreement

What is weight-bearing on the PRECICE 2 like?
We only allow our patients to bear 75 lbs of weight per leg on the 12.5 mm diameter nails.  This means that you can never have your full weight on one leg.  The fellow then proceeds to show me what walking with a walker looks like, and while I should have already known this, it surprised me because then I realized just what the extent of what your mobility is reduced to.  Every second, he had to be mindful that his weight was on the walker when he lifted a foot to make a step.  Any mistep and displacement of weight, and you could risk your entire lengthening procedure (and additional costs).  Physio will train you thoroughly so you can become good at walking.

The 12.5 mm nail is generally used for your femurs.  For your tibiae; however, we'd most likely end up using the 10.7 mm nail which only allows up to 50 lbs of weight-bearing. We then proceed to look at my x-rays, and I point out that my tibial canals are actually wider than my femoral canals, which interested him.  Yes, you may be able to fit 12.5 mm diameter nails in your tibiae, but the decision is really made during surgery and best judged by how the nails fit in your canals.

Would I be confined to a wheelchair? (I weigh 140 lbs, and obviously a 50 lb weightbearing nail wouldn't support my weight)
No, but you would be expected to put a lot more weight on your walker.  (I didn't really get too clear of an answer on this, so I want to follow up with an email to ask about it).

I had a consultation with another doctor who recommended that I insert the nails into my femurs retrograde (via the knees) as opposed to antegrade (via the hips) due to the narrowing of my femoral canals closer to the top part of my femurs.  Would you agree with this?
No, I wouldn't.  First of all, I would argue that it wouldn't make much of a difference because the narrowing occurs in the middle of your femurs, which would require us to ream your canals regardless of which way we insert it.  Secondly, retrograde insertion would damage cartilage in your knees.  That's something we'd want to avoid.

At this point, we move onto the physical examination of my body.  Like I said in my last post, Paley evaluated my body 100x better than Rozbruch did, and Paley knew exactly what needed to be done in regards to my inflexibility and tightness.  I don't want to crap on Rozbruch because he's a nice guy, but I don't think he's as well-suited for cosmetic leg lengthening.  He was previously a fellow of Dr. Paley and has a lot less expertise in the cosmetic side of the field (mostly because the prices in the NYC hospital he operates out of are astronomical when uninsured).  Rozbruch also spent a lot less time with me, and didn't have much experience to refer to when answering my questions.  Paley also confirmed things that I had already learned from my orthopedist, which meant he wasn't fudging facts.
Wow, BD, you are incredibly tight.  In many different areas.  First of all, we would do an ITB release on you.  We do this on practically all our patients, and it's a really easy and safe procedure.  It's neither a muscle or ligament, it's just thick tissue that runs along the side of your thigh, which due to its tightness, will make your lengthening process extremely difficult.  Once released, it can always be regenerated.  The price of this release is included in the surgery.  (I'd like to mention that I fully agree with his take on the necessity of ITB releases.  One: because I notice patients that don't have an ITB release, have a much more difficult time with their recovery due to muscle tightness and two: because his patients have very good outcomes).

However, we have some other problems that need to be released as well.  The biceps in your thighs, otherwise known as the Biceps femoris, will need a very small release as well.  It will be a small incision right here, which will improve your flexibility as well.  This is easily rebuilt as well, people commonly have their ACL rebuilt from using the muscle in this area.  (to imagine where the incision would be, bend your right knee, grab your right thigh closest to your knee, and feel underneath it.  Feel those two muscles?  The muscle on the left will be where he makes a small incision.  Also, your ITB release will occur near your knee as well, to imagine where just touch the outer part of your thigh closest to your knees.  It's very tough and strong to the touch.)  Unfortunately the biceps femoris release is not included in the surgery price.  This will cost an additional $5,000.

And lastly, you will most likely need a Gastrocnemius soleus release surgery.  The reason for this is because your dorsiflexion is very, very tight.  About 10 degrees ROM.  (Your dorsiflexion is where your feet bend upwards at your ankles, I have an unnaturally tight achilles tendon which has been confirmed by my orthopedist).  For this release, we would need to perform a gastrocnemius soleus release surgery, which I do quite rarely.  I don't like doing them as well because it can result in a weaker "push-off" in your calves, which is why sprinters would be negatively affected by this surgery.  You will likely rebuild the strength though.  The cost of this release is also an additional $5,000.

So that would mean the cost of my surgery would be...
Yes, so your surgery for same-day procedure would be $160K and for staggered it would be $180K.  (I was pretty much sweating bullets from that answer, that's a lot of money!!   :o.  I'll talk more about my finances after this post).

Out of order, misc. questions.

I notice some patients underwent hypertrophy in their calves after this surgery.  Have you ever had this happen and why does it happen?
That's because of a procedure called Facsiotomy.  It's done to relieve tension in the tibiae when performing the surgery.  Think of it like cutting a piece of chicken meat- first you have the membrane that surrounds the chicken meat.  Once you cut that membrane, the chicken starts expanding and falling out of it, as if it were being trapped in there.  That's kind of what this procedure does, and causes your calves to look girthier.  Eventually the membrane heals and prevent your calves from getting any thicker, but the girthiness will stay permanently.  We have no problem doing this on guys (which made me excited, I really want to have thicker calves!)  But we do not do this procedure on women ever, since they really do not want to have thicker calves (good news for you ladies out there!)

Here, I'm talking about when I first discovered LL and how I thought it was a pipedream when I first saw it in the movie Gattaca.
Paley scoffs and while smiling says yea, I know, I was the consulting doctor on that scene in the movie.
What!!!! Mind=blown.  ;D  I sat there with a stupid grin on my face when I heard that.  The man is seriously Hollywood.

I've read reported studies of over 70% persistent/permanent knee pain in patients after insertion of the IM nail into their tibias.  Have you seen this with your patients?
No, I have never seen close to that figure with my patients.  Probably less than 10% have this issue.  Fellow nods and adds that he's only seen it in less than 10-15% of his patients from their case studies.  What causes it? That's the thing, no one knows what causes it.  My decreased rates for persistent knee pain could be coming from from the way I insert the nails into the tibiae, which is higher up the patellar starts talking with a lot of scientific terminology with his Fellow that I couldn't quite follow.


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And that's about the rundown on my consultation!  I wish I could have recorded it, since an actual recording would do a lot more justice to what was said rather than just trying to remember everything.  But you get the gist.  That was the longest post I've written here, and I'm wiped out, so I'll come back later today and respond to everyone's questions (and PMs!)  I hope this really helps for your future decision, and gives you better insight into what you should find out from your doctors.  I know if I had the money and time to do it right now with Paley, I would do it 110%.  He really knows his stuff, has decades of experience, and clearly upholds precaution, three of the most important factors when considering a doctor.  I recommend that you still do your own consultation with him, because his answers vary from whom he's speaking to.  His price for a consultation is $750 and also $350 for the x-rays taken.  My flight was about $500 and for considering such an expensive surgery, getting to know your doctor and their facilities is well worth it.
« Last Edit: March 11, 2014, 05:26:39 PM by BilateralDamage »
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Franz

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Re: Big D is Growing - PRECICE 2 Internal Femurs - Dr. Paley
« Reply #61 on: March 11, 2014, 06:02:22 PM »

Hey BD!

This is an awesome post that is extremely valuable.
Gives you a lot to think about. I think it is evident that Paley is certainly the best option out there. What I love is his vast experience, honesty and focus on safety. Most of us have been influenced by him in some way.
If you can afford it, go for it, but be careful about quad.
Good luck with your decision.
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