Topic: Femurs & Tibias with Dr Paley (Read 128201 times)

MyEvolution · « **Reply #465 on:** January 05, 2020, 03:32:16 PM »

Quote from: MirinHeight on January 05, 2020, 08:04:45 AM

any x ray pictures?

Yes, waiting to get to at least 7cm before taking xrays, i’ll b hitting 7cm in 10 days
Once i hit 8 i’ll also b posting a walking/standing video to show you guys no ballerina

Futureller · « **Reply #466 on:** January 05, 2020, 07:24:50 PM »

Happy to hear that your LL experience is going well. So the key to not getting caught up in issues basically is to make sure you stretch often and not slack. I'm 5'7.5" and want to do femurs with Paley in about 2 years to take me to 5'10.5" at least then no one can call me short and I won't be turned down dating wise for my height. I've been told I'm good looking so even though I won't be considered "tall" I should be able to get away with that height and live a more fulfilling life.

Basically I gotta put away 90k for femurs with Paley correct? I would love to do tibias as well but I'm already gonna have trouble putting away 90k in the next 2 years including living expenses for 1+ years while I recover. My job is physical so I'll be out of work the whole year I'm recovering so no income. Gotta put money aside for that.

When I'm done lengthening basically I go back home right? Any x-rays I can get done at home and send to Paley? Would I ever have to fly back to Florida to see Paley personally for check ups at all after my lengthening?

FormerKidd · « **Reply #467 on:** January 06, 2020, 02:11:08 AM »

Quote from: Futureller on January 05, 2020, 07:24:50 PM

Basically I gotta put away 90k for femurs with Paley correct? I would love to do tibias as well but I'm already gonna have trouble putting away 90k in the next 2 years including living expenses for 1+ years while I recover. My job is physical so I'll be out of work the whole year I'm recovering so no income. Gotta put money aside for that.

The price may change in two years, but that 90k does not inlclude living expenses. Also, I don't know what kind of job you have, but you might be able to go back before 1 year.

I don't recommend doing tibias at the same time -- if the femurs don't give you enough, go back for tibias later. It's easier on the body and you'll get more length that way.

Quote from: Futureller on January 05, 2020, 07:24:50 PM

When I'm done lengthening basically I go back home right? Any x-rays I can get done at home and send to Paley? Would I ever have to fly back to Florida to see Paley personally for check ups at all after my lengthening?

You can return home after lengthening, yes.

MyEvolution · « **Reply #468 on:** January 06, 2020, 03:06:56 AM »

I agree with former
If you do both femurs + tibs same time max you can gain is 10cm
Femurs alone if you stretch you gain 8cm
2cm is not justified
Furthermore if you wait a year and have good work ethic you can do 5-8cm
For a total of 13-16cm

But yes it all comes down to work ethic and staying on top of your goals
The truth is MOST femur patients dont even stretch once a day, sometimes go a week without stretching its a shame that most of them fail because they didnt work hard enough

Futureller · « **Reply #469 on:** January 06, 2020, 03:44:13 AM »

It makes me feel better to hear that as long as I do my stretching all should go well. I have a very physicsl job in construction. Hoping to be able to go back a year after surgery, need my strength and normal walk back if I want to get back to my job. Hopefully I can if I keep on top of my nutrition and stretching.

MyEvolution · « **Reply #470 on:** January 06, 2020, 05:12:02 PM »

Alright guys so since i’ve been super transparent with you guys this whole journey i gotta let u guys know how this meeting went; terrible

Apparently my right leg has NOT been lengthening in a month. There’s too much bone in my right leg it has stopped at 4.5cm while my left leg is at 6.5cm
This is crazy rediculous cant believe two weeks ago they didnt notice. I didnt have robbins 2 weeks ago i had some new dr shannon i’ve very devestated right now thinking i was ready to leave her in 3 weeks, this is a big punch in the face because not only do i have to wait now for my right leg to catch up, my left leg will NOT be at 8cm on the 30th anymore cause i gotta wait

Idk whats the next move. Robbins says hes gonna email paley, he said either I shorten my left (YA RIGHT) or re break my right (sadly probably gonna have to do that

Ughhhhhhh i feel so bad rn

looks like the road ahead just got a lot longer. This is really testing me in ways i didnt want to be tested right now
FML

PinkStarburst · « **Reply #471 on:** January 06, 2020, 05:46:25 PM »

This is so unfortunate to hear. We all have been inspired by your drive to do what others thought wasn't possible by being consistent and putting in effort. I know you got this. We are all here for you!

Keep fighting!

TheAlchemist · « **Reply #472 on:** January 06, 2020, 08:11:57 PM »

Unbelievable man. So sorry to hear this. You've inspired us all and if there's anyone who can fight through this obstacle it's you.

InFullStryde · « **Reply #473 on:** January 06, 2020, 08:21:51 PM »

So Sorry to hear this, man. You'll power through this.

MyEvolution · « **Reply #474 on:** January 06, 2020, 11:04:34 PM »

Guys idk what to do i need help
My options are to keep my left leg at 6.5 right at 4.5 difference of 2cm and just enjoy life. Will a 2cm discrepency lead to problems? I am doing research but can’t find anything conclusive

My other option is to shorten my left so that it’s 4.5cm but there’s no way i’d ever consider that situation i simply can’t handle that

Any advice is appreciated
Im sorry I couldn’t make it to 8
I really gave this everything i possibly could
This is all I could do
Lowkey im gonna lengthen my left till its 7cm so difference will be 2.5cm and either come re break in a year or just accept 2.5cm and move on w life

Stryde4Success · « **Reply #475 on:** January 06, 2020, 11:49:01 PM »

Hi MyEvolution,

First off, I would like to say you have been an absolute inspiration to the broader LL community, as we have followed your journey since 2018 as the 1st documented world-wide patient diary with STRYDE. Thank you for being honest and transparent in your journey with us.

Although your setback is unfortunate, I do see a silver lining. Even had you not experienced pre-mature consolidation in the right tibia, you still needed 2 additional surgeries before you fully recovered, one in ~6 months to remove rods from your femurs, and another in ~1-1.5 years to remove rods from your tibias.

It shouldn’t be as significant a setback if you re-break your right tibia at the same time you remove your femur rods in under a year. Since you only need to distract 2-2.5cm on your right tibia, the procedure should take ~1 month and it would be quite realistic to distract at home like bgreeneee’s dairy in late 2019. It would be far easier than your last two procedures, and you are the best prepared of anyone on this forum (and likely the world) to do it. You could then just remove the rods on both your tibias around the same time. As you already exhibited above-average bone growth due to pre-consolidation, you shouldn’t have to wait the full year to remove rods on both tibias.

I might have missed something, but if the above scenario is indeed possible, you shouldn’t need any additional surgeries relative to the 2 you would have required for the rod removal.
Hope my thinking helps, and PM me if you have any questions on my line of thinking. Thanks again for your pioneering diaries for both Styde Femurs and Tibias.

jfk · « **Reply #476 on:** January 07, 2020, 12:00:45 AM »

Hi i am very sorry to hear that this happened!
The option that Stryde4success mentioned sounds like a very good one.

I read that you also considered Dr. Betz but in the end decided against. With the mechanical clicking of his nail it is much more unlikely for something like this to happen. Also his nail is weightbearing since a long time. So I do not understand why Stryde is so much hyped here and Dr. Betz nail is seen as crap.

Anyway wish you the best of luck of course! And thank you for sharing your story with us.

Probably the best way to go is as Stryde4success mentioned...

Jim_dabarber · « **Reply #477 on:** January 07, 2020, 01:28:59 AM »

Were you not monitoring your own xrays? I dont see how you didnt notice.

This is why i stressed so much on my diary about not relying so much on your doctors but to always watch and measure your own xrays, doctors arent perfect nomatter how good you think they are.

Anyways, i strongly suggest you to rebreak and keep lengthening or back the long one back. Either way DONT stay with a 2.5cm discrepancy, thats totally ridiculous! You broke your perfect legs to end up with a deformity? Could you really live with that? I doubt it! Even them out man. In my opinion i would just shorten the long one. Stop being greedy.

Its up to you honestly, wish you the best man.

PinkStarburst · « **Reply #478 on:** January 07, 2020, 01:33:15 AM »

You may be able to use insurance for the fix! I figure because of the difference you may stand with your weight more on the shorter leg, might lead to something with your hips or back.

BoneStretching · « **Reply #479 on:** January 07, 2020, 01:37:36 AM »

You would have to wear a small 1 inch lift in one of your shoes. I don't think it is the end of the world, ask your doctor on this one. Either way you look great man, stay positive. Let us know what Paley recommends, maybe the best LL doctor in the world will figure something out here. Keep going strong.

MyEvolution · « **Reply #480 on:** January 07, 2020, 01:50:23 AM »

Although it sucks i think im gonna re break next year even them out
Maybe re break the left too get 8 on both but i mean we will see
I guess for now my journey here is done
I’ll b posting a walking video soon

Thank you for all your support means everything

limewalk · « **Reply #481 on:** January 07, 2020, 01:56:07 AM »

This is sad to hear MyEvolution. Especially knowing of how motivated and optimistic in reaching your goal you were and something like this happens.

It's quite bad that after spending $100k on what is supposed to be the "best" place to get LL, an issue like this goes unnoticed. First of all, I would hope that Paley can "predict" a preconsolidation BEFORE it happens. But in this case, they didn't "detect" it one month AFTER it happened. That's quite poor on them.

And are you using the old ERC or the new ERC? One member "Ascending" also had preconsolidation and he said the new ERC can detect inability to engage the nail but old ERC is stupid and cannot do so. It would again be very poor on Nuvasive and Paley institute if they gave you an old ERC to save cost.

I think it's a good idea for LL patients to share x-rays every 2 weeks with the forum so that they hear opinions from others. There have been so many cases on lengthening failure and deformities that it would help to have more eyes on them. There will be some freaking out about non-issues also because none of us are experts, but I think it's still preferable to issues going unnoticed. Just my opinion. Obviously one needs to remove his or her name from the x-ray.

I think you should definitely even out your legs man! 2 and + cm discrepancy needs to be solved. Whatever you decide, be positive mate!

Good luck !

hello321 · « **Reply #482 on:** January 07, 2020, 02:45:53 AM »

keep it up bro. i believe in you and your persistence. One question: how much calcium do you take everyday? 2000 mg?

hello321 · « **Reply #483 on:** January 07, 2020, 02:51:10 AM »

i think you have done a lot and helped lots of people on this forum and we will support you regardless of what

Ascending · « **Reply #484 on:** January 07, 2020, 01:15:43 PM »

Hi MyEvolution,

I would suggest you re-break and equalize. Leg length discrepancies can create hip problems later in life. I am not sure if that applies at 2cm but I think it is better if you equalize in any case. As per my advice earlier - I think everyone doing LL should watch their xrays like a hawk and measure the distraction from the xrays themselves and don't rely too much on the ERC to tell you how much you have distracted. However, this does require Xrays are done in a very consistent manner so that the results are comparable. Ideally you should also use a template ball - typically a metal ball of known exact diameter (usually 25mm) that is positioned near your leg so that you can calibrate your measurements - see https://blog.peekmed.com/x-ray-calibration/.

You are in good hands and I am sure everything will be resolved well. Good luck!

Dreamer57 · « **Reply #485 on:** January 07, 2020, 02:47:03 PM »

Quote from: MyEvolution on January 06, 2020, 11:04:34 PM

Guys idk what to do i need help
My options are to keep my left leg at 6.5 right at 4.5 difference of 2cm and just enjoy life. Will a 2cm discrepency lead to problems? I am doing research but can’t find anything conclusive

My other option is to shorten my left so that it’s 4.5cm but there’s no way i’d ever consider that situation i simply can’t handle that

Any advice is appreciated
Im sorry I couldn’t make it to 8
I really gave this everything i possibly could
This is all I could do
Lowkey im gonna lengthen my left till its 7cm so difference will be 2.5cm and either come re break in a year or just accept 2.5cm and move on w life

Hey LL legend,
Don't worry man, it's gonna be all good in the end...my opinion is you either shorten or stop at 7, don't go for 8...this strydeforsuccess guy has got a pretty good suggestion...also afterall it's Dr. Paley! You and him will figure something out I am sure....don't feel low, we all r with you....Just don't stop posting yet....
Power to you!

tiggy · « **Reply #486 on:** January 07, 2020, 07:29:59 PM »

Hey man,
Sorry to hear of this setback. The way I see it is you have 2 decent options here. One is to rebreak and equalize or given that the diacrepancy is 2cm right now, another option would be to lower the left by 1 cm and keep things as is without re breaking. I doubt the 1 cm discrepancy by itself will be noticeable. However you got 2cm right now, which is almost an inch and living with that kind of discrepancy would be more challenging. You can reassess in 6 months or so to see whether living with 1 cm discrepancy is significant at which time you can rebreak. Whatever you decide try not to fret, setbacks happen with this surgery but you got the strength to resolve it in due course. Once you speak to Paley about what he recommends please keep us posted here. I rarely comment on your diary entries but I am an avid reader, like so many others. Chin up man and congrats on an incredible progress thus far. You have gained over 2 inches and that is truly worthy of a celebration!

dreamBig · « **Reply #487 on:** January 08, 2020, 04:59:03 AM »

Hey man, sorry to hear about that.
Since this is just discovered, is there a possibility your right tibia has not fully consolidated yet, so you don't have to break it again, and continue lengthening?
I was reading VerticalPush's femur lengthening diary, and he run into similar situation at the end of lengthening journey, one leg is about 1cm shorter (possibly due to some machine issue). Fortunately for him, the bone was not fully consolidated, he is able to continue lengthening the shorter femur to fill the 1cm gap.
http://www.limblengtheningforum.com/index.php?topic=64009.124
From what I have read so far, tibia bone consolidation tends to be slower than femur, your right tibia might not be fully consolidated yet even after a month. If this is the case, I think Dr. Paley can come up with a plan to test it out.

MyEvolution · « **Reply #488 on:** January 08, 2020, 03:15:44 PM »

Update: a grim of hope
After going back nd forth, Paley himself said he will be testing my motion on monday. If i pass I can keep my 6.5cm for now nd discuss re break options
If i can at least keep my 6.5 ill be happy thats not too far from 8 so ill at least be able to enjoy my new height till the re break

I guess we’ll see what happens monday! In the meantime ill b stretching
Pray for me

hello321 · « **Reply #489 on:** January 08, 2020, 06:24:33 PM »

good luck bro. how much calcium did you take every day i wonder? 2000 mg?

MyEvolution · « **Reply #490 on:** January 08, 2020, 06:25:20 PM »

Quote from: hello321 on January 08, 2020, 06:24:33 PM

good luck bro. how much calcium did you take every day i wonder? 2000 mg?

None!
Sometimes vitamin d
Sometimes omega 3 but thats it

TheAlchemist · « **Reply #491 on:** January 08, 2020, 06:34:48 PM »

Quote from: MyEvolution on January 08, 2020, 03:15:44 PM

Update: a grim of hope
After going back nd forth, Paley himself said he will be testing my motion on monday. If i pass I can keep my 6.5cm for now nd discuss re break options
If i can at least keep my 6.5 ill be happy thats not too far from 8 so ill at least be able to enjoy my new height till the re break

I guess we’ll see what happens monday! In the meantime ill b stretching
Pray for me

Rooting for you bro! You are a stretch machine I'm sure you'll push through and succeed with the motion test. Keep pushing!

FormerKidd · « **Reply #492 on:** January 08, 2020, 11:20:35 PM »

Quote from: MyEvolution on January 08, 2020, 06:25:20 PM

None!
Sometimes vitamin d
Sometimes omega 3 but thats it

Generally, I think Paley recommends Vitamin D3 to a lot of patients.

MyEvolution · « **Reply #493 on:** January 08, 2020, 11:22:21 PM »

Quote from: TheAlchemist on January 08, 2020, 06:34:48 PM

Rooting for you bro! You are a stretch machine I'm sure you'll push through and succeed with the motion test. Keep pushing!

Thanks bro means a lot
At this point im hoping for dr paley to agree to re break my right as early as next week
That way i can take a small 3 week break on my left let it loosen up,
Right can catch up
At this point my right is completely back to normal lol that 1 month break made my dorsiflextion amazing on my riight like fully recovered so i can no doubt push for another 3.5cm to 8
And another 1.5cm on my left
And hit 8 around march
And go HOME

cena · « **Reply #494 on:** January 11, 2020, 06:21:12 PM »

What is the cost of rebreaking both sides?

MyEvolution · « **Reply #495 on:** January 12, 2020, 12:26:52 AM »

Quote from: cena on January 11, 2020, 06:21:12 PM

What is the cost of rebreaking both sides?

I’m not sure honestly i’ll know on monday but
As of now only one leg requires re breaking
It would take my right 26 days to catch up
In that time i’d be still lengtining my left for another 1.5cm - 3 weeks
Hopefully by then they’ll be like oh ur left is at 8 might as well keep going

Thank you for all your supporting messages guys if they let me re break WE R GOING TO 8 BABYYYYY

Limb Lengthening Forum

Author Topic: Femurs & Tibias with Dr Paley (Read 128201 times)