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Author Topic: Doctors who are open to higher than recommended lengthening ?  (Read 2036 times)

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nightstar

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Dr. Paley doesn't do more than 13 cm (5.1 inches), but I firmly wish to achieve 15.25 cm (6 inches). Most doctors in the sticky seem to have a similar range. Which doctors are open to the kind of increase I'm looking for?
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Serilium

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #1 on: May 07, 2021, 07:34:24 AM »

Dr. Mahboubian normal standard will let you push tibia to 6.5cm instead of 5cm like paley
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #2 on: May 07, 2021, 11:56:54 AM »

Dr. Donghoon Lee has different lenghening programs, one of them goes up to 16cm
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #3 on: May 07, 2021, 12:01:28 PM »

You can get 16cm with Paley
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #4 on: May 07, 2021, 01:17:49 PM »

You can get 16cm with Paley

True, quadrilateral twice

(4cm+4cm)x2 same as Lee
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Medium Drink Of Water

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #5 on: May 07, 2021, 02:38:52 PM »

He Tao Xia.  Several others too as long as you do external.
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nightstar

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #6 on: May 07, 2021, 04:34:43 PM »

True, quadrilateral twice

(4cm+4cm)x2 same as Lee
This is with two operations per segment? Wouldn't that have worse side effects than one large operation?
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #7 on: May 07, 2021, 04:49:13 PM »

This is with two operations per segment? Wouldn't that have worse side effects than one large operation?

Quadri is usually fking the body quite a lot but since you only do 4+4 it's safe in terms of lengthening amount (you have 3 surgeries, excluding rod removal)
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #8 on: May 07, 2021, 05:48:28 PM »

Quadri is usually fking the body quite a lot but since you only do 4+4 it's safe in terms of lengthening amount (you have 3 surgeries, excluding rod removal)

Yes, 4+4 is okay. There are different ways to do quad, 3 weeks apart (they say it's simultaneous) or 1y-2y apart. I know you can du simultaneous 4+4 3 weeks apart, so you break the femur than 3 weeks later you break tibia and lentgh both 4cm, than 1y later you rebreak both (3 weeks apart) and get 16 total, and yes, you need to remove the rod. So it would be about 5 surgeries. But with the same nail, cause stryde can lentgh up to 8cm maximum (device limit).




I know it sounds confusing, and my english is not the best with CLL topic. So let me show you this:



- Dr Paley: https://limblengthening.org/lengthening-strategies/



- Dr. Donghoon Lee:

"1. Femur lengthening – max. 8cm (3.15in.); lengthening period of 8cm is about 12 weeks

2. Tibia lengthening – max. 6cm (2.36in.); lengthening period of 6cm is about 12 weeks

3. Femur lengthening of 4cm then 6 months after another 4cm lengthening (lengthening period of 4cm (1.57in.) is about 6 weeks)

4. Tibia lengthening of 4cm then 6 months after another 4cm lengthening (lengthening period of 4cm (1.57in.) is about 8 weeks)

5. Femur or Tibia lengthening one leg at a time and lengthening the other leg (max. lengthening length and lengthening period is same as #1 and #2)

6. Simultaneous tibia and femur lengthening (max 8cm (3.15in.) in total; lengthening period of tibia and femur each lengthening up to 4cm is about 12 weeks in total)

7. Tibia lengthening up to 6cm then 1 year after femur lengthening up to 8cm (max 14cm (5.51in.); up to 6cm tibia lengthening and up to 8cm femur lengthening each takes about 12 weeks)

8. Simultaneous tibia and femur lengthening then at least 1 year after additional simultaneous tibia and femur lengthening (max 16cm (6.29in.); lengthening period of tibia and femur each lengthening up to 4cm is about 12 weeks)

*Because of the limitation in lengthening of soft tissue such as muscles and nerves, the maximum lengthening length is restricted to not go overboard. Therefore, excessive lengthening is not recommended for the safe recovery.

*Generally, the first two plans are mostly done. Either lengthening bilateral femur or bilateral tibia.

*If you are looking for the fast recovery, plan #3 and #4 are recommended.

*Another plan for the fast recovery is #5. Undergoing leg lengthening surgery one leg at a time and return back to everyday life using crutches.

*Plan #6 is to lengthen tibia and femur simultaneously. Although the maximum lengthening length is similar to the maximum length of femur lengthening but as lengthening about 4cm on each segment (tibia and femur) gives less burden to the body and you can attain an ideal nice body proportion. Furthermore, you can return back to everyday life faster than lengthening one segment of your leg to the maximum lengthening length.

*Plan #7 and #8 are for the people who wants to gain the maximum length

*Plan #7 is which you undergo either plan #1 or #2 initially then one year after undergoing lengthening surgery on the remaining segment.

*Plan #8 is which you undergo plan #6 twice within at least one year apart from the initial surgery. Lengthening for the second time, change in intramedullary lengthening nail is unnecessary as lengthening can be done by re-osteotomy while the intramedullary nails are remained.

*Most importantly, please be aware that above plans with the maximum lengthening length and the lengthening period are based on the average data. It varies by each person as everyone’s condition and rehabilitation is all different."


From my reasearches: Doing 4+4 is better than doing just 8 at one segment, beacause of proportions and complications. And since you want the maximum ammount, you can reach 16 only doing simulteneous quadrilateral twice. You don't pay that much for the second quadrilateral with palley, because the most expensive thing is the device. So one quad would be around 200K dollars, and if you do it twice he only charges 80K more, beacause the device is the same. Just don't forget that stryde has been recalled, so we don't know what to expect, but i highly recommend doing this with stryde, cause it will takes 2 whole years of surgery, so stryde is better, in view of the fact that stryde has a weight bearing tolerrence.

Leghening 8+8 at once is  suicide. The only other option would be lenghening femur up to 8 and tibia up to 5-6 (or tibia first, depends at the doctor, Dr. Lee says that tibia takes more time to rehab, so he prefers doing it before, but Dr. Plaey prefer femur first, I think), 1 years apart, but only a total of 13-14, not 15-16.

Said that, it's not a rule, you should email your doctor and ask about all the possible ways and each coplications, risks and costs. Every case is a case. Hope that helped you.

(The information about Dr. Lee came by his email that his secretary sent me, with prices and etc.)
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #9 on: May 07, 2021, 07:34:00 PM »


Yes, 4+4 is okay. There are different ways to do quad, 3 weeks apart (they say it's simultaneous) or 1y-2y apart. I know you can du simultaneous 4+4 3 weeks apart, so you break the femur than 3 weeks later you break tibia and lentgh both 4cm, than 1y later you rebreak both (3 weeks apart) and get 16 total, and yes, you need to remove the rod. So it would be about 5 surgeries. But with the same nail, cause stryde can lentgh up to 8cm maximum (device limit).




I know it sounds confusing, and my english is not the best with CLL topic. So let me show you this:



- Dr Paley: https://limblengthening.org/lengthening-strategies/



- Dr. Donghoon Lee:

"1. Femur lengthening – max. 8cm (3.15in.); lengthening period of 8cm is about 12 weeks

2. Tibia lengthening – max. 6cm (2.36in.); lengthening period of 6cm is about 12 weeks

3. Femur lengthening of 4cm then 6 months after another 4cm lengthening (lengthening period of 4cm (1.57in.) is about 6 weeks)

4. Tibia lengthening of 4cm then 6 months after another 4cm lengthening (lengthening period of 4cm (1.57in.) is about 8 weeks)

5. Femur or Tibia lengthening one leg at a time and lengthening the other leg (max. lengthening length and lengthening period is same as #1 and #2)

6. Simultaneous tibia and femur lengthening (max 8cm (3.15in.) in total; lengthening period of tibia and femur each lengthening up to 4cm is about 12 weeks in total)

7. Tibia lengthening up to 6cm then 1 year after femur lengthening up to 8cm (max 14cm (5.51in.); up to 6cm tibia lengthening and up to 8cm femur lengthening each takes about 12 weeks)

8. Simultaneous tibia and femur lengthening then at least 1 year after additional simultaneous tibia and femur lengthening (max 16cm (6.29in.); lengthening period of tibia and femur each lengthening up to 4cm is about 12 weeks)

*Because of the limitation in lengthening of soft tissue such as muscles and nerves, the maximum lengthening length is restricted to not go overboard. Therefore, excessive lengthening is not recommended for the safe recovery.

*Generally, the first two plans are mostly done. Either lengthening bilateral femur or bilateral tibia.

*If you are looking for the fast recovery, plan #3 and #4 are recommended.

*Another plan for the fast recovery is #5. Undergoing leg lengthening surgery one leg at a time and return back to everyday life using crutches.

*Plan #6 is to lengthen tibia and femur simultaneously. Although the maximum lengthening length is similar to the maximum length of femur lengthening but as lengthening about 4cm on each segment (tibia and femur) gives less burden to the body and you can attain an ideal nice body proportion. Furthermore, you can return back to everyday life faster than lengthening one segment of your leg to the maximum lengthening length.

*Plan #7 and #8 are for the people who wants to gain the maximum length

*Plan #7 is which you undergo either plan #1 or #2 initially then one year after undergoing lengthening surgery on the remaining segment.

*Plan #8 is which you undergo plan #6 twice within at least one year apart from the initial surgery. Lengthening for the second time, change in intramedullary lengthening nail is unnecessary as lengthening can be done by re-osteotomy while the intramedullary nails are remained.

*Most importantly, please be aware that above plans with the maximum lengthening length and the lengthening period are based on the average data. It varies by each person as everyone’s condition and rehabilitation is all different."


From my reasearches: Doing 4+4 is better than doing just 8 at one segment, beacause of proportions and complications. And since you want the maximum ammount, you can reach 16 only doing simulteneous quadrilateral twice. You don't pay that much for the second quadrilateral with palley, because the most expensive thing is the device. So one quad would be around 200K dollars, and if you do it twice he only charges 80K more, beacause the device is the same. Just don't forget that stryde has been recalled, so we don't know what to expect, but i highly recommend doing this with stryde, cause it will takes 2 whole years of surgery, so stryde is better, in view of the fact that stryde has a weight bearing tolerrence.

Leghening 8+8 at once is  suicide. The only other option would be lenghening femur up to 8 and tibia up to 5-6 (or tibia first, depends at the doctor, Dr. Lee says that tibia takes more time to rehab, so he prefers doing it before, but Dr. Plaey prefer femur first, I think), 1 years apart, but only a total of 13-14, not 15-16.

Said that, it's not a rule, you should email your doctor and ask about all the possible ways and each coplications, risks and costs. Every case is a case. Hope that helped you.

(The information about Dr. Lee came by his email that his secretary sent me, with prices and etc.)

You have to keep in mind though that despite the fact that you are lengthening the soft tissue a lot with simultaneous lengthening (nerves over a mm/day) you are as well doing 2 major surgeries in a short time which is very taxing both mentally as well as physically. Plus you are paying a lot more. Almost 300k of which you have to pay 200k in advance (with Paley). So the only two upsides to quadri options is you lengthen less at once and it‘s better for proportions.

Also, if you chose to do quadri now you are stuck with precise. Once you return for rebreaking you will have to do it with precice while ppl around you will be getting stryde.

So what are my recommendations: don‘t do quadri, especially now. If you want to go with nuvasive‘s internals start with femurs. Don‘t start with tibias ever, unless you choose externals. 8cm in femurs is a goal almost everyone should be able to achieve. Then after a year you can choose internal tibias when stryde is back with which you can try to gain around 6cm. So int total around 14cm which is quite a lot. And if you want to max out both nails I am sure you can ask your doctor to rebreak later (for example lets say you had to stop at 7cm femurs and 5cm tibia. It won‘t be too much of a problem to rebreaken some time later to get to 8 in both leading to 16cm. You will have the same amount of surgeries as with quadri but you don‘t endure the insane stretching of soft tissue and two surgeries (with a combined duration of almost 10 hours btw) within 2-3 weeks.

I am very sure though that most people who want this stop either after femur surgery or they are satisfied with 14cm and don‘t want to do this all over again for 2 more cm. But who knows, some are very dedicated.
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Stretch

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #10 on: May 07, 2021, 08:32:33 PM »

So what are my recommendations: don‘t do quadri, especially now. If you want to go with nuvasive‘s internals start with femurs. Don‘t start with tibias ever, unless you choose externals.
[/quote]

@RLS

Can you elaborate more as to why you recommend femurs as the first choice rather then Tibias?

Thanks
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Thorfinnn

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #11 on: May 07, 2021, 09:42:18 PM »

You shouldn't do quadrilateral now because there is no stryde nail which has weight bearing. As for recommending femur over tibias. Pros of doing femurs first is the max of 8cm is easier and more attainable on femurs than trying to get the max length for tibias.
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #12 on: May 07, 2021, 10:10:16 PM »

So what are my recommendations: don‘t do quadri, especially now. If you want to go with nuvasive‘s internals start with femurs. Don‘t start with tibias ever, unless you choose externals.


@RLS

Can you elaborate more as to why you recommend femurs as the first choice rather then Tibias?

Thanks

I explained it in my post. You do this to become taller, not because of proportions, so why do tibias first. It's harder, a bit more expensive, recovery takes longer, you gain less height, looks bad if you still want to wear shoes that are a bit higher. Plus the "risk of knee pain" element is there too. No reason to start with tibias unless you do externals because externals on femur is a very, very bad idea.

Quadri is very draining... physically, mentally, financially. The only good thing is your proportions will not be off (at least until you would have done the other segment with bilateral anyways) which tbh is a joke, especially at small lengthening amounts like <8cm. Honestly, proportions are way too overrated here. You wanna have mathematically optimal proportions? Don't do LL. You wanna grow taller? Do LL. Will anyone irl notice? No. Does it matter? No.
I am very certain that once you do LL the least important thing should be "proportions". What's important is will you come back to life (recover)? And will I reach my goal? That's it.


ps You can always cover long femurs/short tibias with lift boots but not the other way around
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nightstar

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #13 on: May 07, 2021, 10:49:29 PM »

Is 8 cm a hard or soft maximum for femurs? With a goal of 15-16 cm total, I was imagining something like 6 cm tibia and 10 cm femur (I'm trying to get a picture of the landscape before doing consultations).

If 8 cm is the hard max for femur, are quadrilaterals the only option for reaching that 15-16 cm goal?
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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #14 on: May 07, 2021, 10:50:34 PM »

Exactly. After tibial lengthening, if you ever use lifts/high heel shoes = you are fked.

With the lengthening of femur, you can always put 1-2 cm lifts on your shoes and NOTHING will look even "slightly" obvious.
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #15 on: May 07, 2021, 11:23:55 PM »

Is 8 cm a hard or soft maximum for femurs? With a goal of 15-16 cm total, I was imagining something like 6 cm tibia and 10 cm femur (I'm trying to get a picture of the landscape before doing consultations).

If 8 cm is the hard max for femur, are quadrilaterals the only option for reaching that 15-16 cm goal?

With Stryde and precise, yes 8 it is (because the nail can‘t extend further). If you go with externals or guichet nail or Betzbone you may get 9 or 10 cm but it‘s rather risky (some did it successfully though).
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Serilium

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #16 on: May 08, 2021, 12:06:28 AM »

U don't need to do quadrilaterals for 16cm Paley. You do 8cm Femurs. Come back after a year do 5cm tibia. Come back after a year and rebreak tibia for 3cm. No quadrilaterals. This is much much more tolerable than quadrilaterals
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #17 on: May 08, 2021, 02:23:44 AM »

U don't need to do quadrilaterals for 16cm Paley. You do 8cm Femurs. Come back after a year do 5cm tibia. Come back after a year and rebreak tibia for 3cm. No quadrilaterals. This is much much more tolerable than quadrilaterals

This is a good option.
But you and your doctor are going to decide the best option for you.

It also depends at your money, if you want to save the maximum as possible, quad is cheaper beacause you will pay only 1 time for flights, accomodations, pt, medicines, etc. But if you don't have that huge amount ready, do it 1-2y apart. And if money and time is not and issue, don't do quad, do what Sirilium said.

In my case, I will do with stryde (when it comes back) quad (once) beacause of accomodation and flight prices.

I think the choice of device, doctor and method is really personal and different for everyone.

Keep searching and asking until you feel comfortable with a plan
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Serilium

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #18 on: May 08, 2021, 02:56:51 AM »

And if money and time is not and issue, don't do quad, do what Sirilium said.

And if you don't want to go through torture
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #19 on: May 08, 2021, 03:10:44 AM »

I'm trying to turn myself into masoquist, so that I can do quad peacefully
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nightstar

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #20 on: May 08, 2021, 05:36:28 AM »

Quadri can't be healthy.. And having bad proportions for a year doesn't matter much. You can wear shoe lifts during that time. Better to stretch it out over 3 bilateral surgeries.

I'll also look into the options for doing it in just two surgeries. Betz and Guichet look credible although the broken English on Guichet's website isn't confidence-inspiring.
Certainly don't want to use externals.
Also don't want to use a non load bearing method like Precice. Being wheelchair bound would be gruesome.
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Stretch

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #21 on: May 08, 2021, 06:11:34 AM »

@RLS ok thanks for that.
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Serilium

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #22 on: May 08, 2021, 06:20:54 AM »

Anyone who thinks they can handle quadrilaterals 3weeks apart is an idiot and think LL is a game. One LL is already gruesome enough, two at the same time is being silly.

Stryde will probably be back next year @nightstar. If you have to do it then Betz but Betzbone racheting is painful and you must learn the method to relax the muscle while twisting your leg
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Thorfinnn

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #23 on: May 08, 2021, 06:32:09 AM »

Anyone who thinks they can handle quadrilaterals 3weeks apart is an idiot and think LL is a game. One LL is already gruesome enough, two at the same time is being silly.

Stryde will probably be back next year @nightstar. If you have to do it then Betz but Betzbone racheting is painful and you must learn the method to relax the muscle while twisting your leg

Completely agree the earliest I would do the other surgery is when I’m done distracting from the first one
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #24 on: May 08, 2021, 02:59:12 PM »

That's a point. But it gives less burden to the body, furthermore, you can return back to everyday life faster than lengthening one segment of your leg to the maximum lengthening length.

But it's just my opinion trhough what I've searched and what I've talked with doctors. We're here to discuss and I understand that I can be totally wrong. We're all here to know the best option
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nightstar

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #25 on: May 08, 2021, 04:10:15 PM »

Found out Betz is the subject of lawsuits so that is off the table.

That's a point. But it gives less burden to the body, furthermore, you can return back to everyday life faster than lengthening one segment of your leg to the maximum lengthening length.
Do you have a reason to think doing four segments at once is less burden to the body than two at a time?
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nightstar

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #26 on: May 08, 2021, 04:15:06 PM »

It also seems Guichet has a poor track record, example: http://www.limblengtheningforum.com/index.php?topic=64405.0

Has Paley ever had a death?

In any case, it looks like I'm down to only US surgeons. Which means the only options for the 6 inch range are 2 quadrilateral procedures or 3 bilateral procedures. That's unfortunate. I was hoping 2 bilaterals would be enough.
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RealLostSoul

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #27 on: May 08, 2021, 06:22:31 PM »

Found out Betz is the subject of lawsuits so that is off the table.
Do you have a reason to think doing four segments at once is less burden to the body than two at a time?

Doing four segments at once is a lot more burden. That is for sure.

Also, can you provide any source for the lawsuit? If you refer to anold forum user who just claims that there is a lawsuit since many many years... I would suggest you don't immediately believe that without any proof in that regards. (If you can provide a proof it'd be nice if you share because I'd be interested in that too, as for now I am skeptical).

It also seems Guichet has a poor track record, example: http://www.limblengtheningforum.com/index.php?topic=64405.0

Has Paley ever had a death?

In any case, it looks like I'm down to only US surgeons. Which means the only options for the 6 inch range are 2 quadrilateral procedures or 3 bilateral procedures. That's unfortunate. I was hoping 2 bilaterals would be enough.

Paley has had bad cases too, even an unsuccessfull lawsuit if I remember correctly lol. Most of them however seem to be a product of just LL risks instead of questionable actions from the Doctor, like Guichet for example has shown very bizarre reactions when facing Unicorn's problems which for sure existed.
However, I wouldn't make it up to one post you linked as this is a big selection bias, I am sure Guichet had many successfull cases too but generally, the way he treated Unicorn, for me at least is a big BIG red flag.

The difference between "2 quadrilateral and 3 bilateral procedures" surgery wise is the same: 3 surgeries, 4 if you include nail removal.
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #28 on: May 08, 2021, 06:38:41 PM »

Do you have a reason to think doing four segments at once is less burden to the body than two at a time?

Doctor said that 4cm both is less burden than 8cm in one segment, cause each soft tissue like muscles will be less streached. You will be streaching more soft tissue but only 4cm, with one segment you will streatch 8cm.

But if you do 4cm tibia than 4cm femur another year, it's way better than four segments at a time, for sure.

I think I didn't wrote that clear before, does it makes sense now?

(I'm not comparing 4cm tibia and 4cm femur at once to 4cm tibia and 4cm femur 1-2y apart, I was comapring 4cm tibia and 4cm femur once to 8cm at one segment.
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #29 on: May 08, 2021, 06:43:37 PM »

Do you have a reason to think doing four segments at once is less burden to the body than two at a time?

I didn't make myself clear before. I was comparing what I said above, of course that two at a time is better than 4 at a time, if it's the same amount. But 8cm at once in one segment is more burden than 4cm in two segments.
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Future Skycraper

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Re: Doctors who are open to higher than recommended lengthening ?
« Reply #30 on: May 08, 2021, 06:46:34 PM »

The difference between "2 quadrilateral and 3 bilateral procedures" surgery wise is the same: 3 surgeries, 4 if you include nail removal.

Try emailing them and asking if you can do bilateral femur 8cm and later bilateral tibia 7-8cm. But don't forget to ask the risks and possible complications. And also the difference to quadrilateral twice and 3 bilateral
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