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Author Topic: Compendium of Outcomes  (Read 56093 times)

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Knik

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Re: Compendium of Outcomes
« Reply #31 on: February 19, 2016, 08:03:26 PM »

i think death case is more a myth than a reality
but there must surely be some cases
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ub40

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Re: Compendium of Outcomes
« Reply #32 on: February 19, 2016, 08:14:19 PM »

Thanks, this is a great resource
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crimsontide

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Re: Compendium of Outcomes
« Reply #33 on: March 12, 2016, 10:17:31 PM »

awww


people don't like the truth

Sweden is another one that  says how it really is. He doesn't post much, but he clearly says his life has been  pretty much ruined

Could go on and on.

There's 1 major difference between  me, and the majority of other posters that have gotten this surgery

I tell it like it is. I'm not the only one, but I say what's on my mind, while most of the others say how they wished it were.

big difference

Sweden is another.. The guy can't even use his foot!!!     Will it ever be better? Perhaps, perhaps not

will bluebarbie ever recover? Perhaps, perhaps not

will kirkp1? perhaps,perhaps not

Let's see some of these videos from patients doing wonderfully

People  don't like that I'm crushing their dream. 

Oh well,   tough  
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crimsontide

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Re: Compendium of Outcomes
« Reply #34 on: March 12, 2016, 10:25:36 PM »

:)))

obviously I hurt someone's feelings

GOOD

we should start a thread which goes through EVERY ll patient thread on this site, and see if it ended well

i'd like to see how many patients are both   done with recovery, and had a good final outcome... and have videos to prove it

I think the % will be less than 1%

but let's do it.
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crimsontide

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Re: Compendium of Outcomes
« Reply #35 on: March 12, 2016, 10:27:40 PM »

let;s go through some diaries now

rgkey

mine

swden

bluebarbie

disobedient

copper

yellowspike

doingitforme

inmylife


at ths moment,how many of those can be called a success?
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crimsontide

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Re: Compendium of Outcomes
« Reply #36 on: March 12, 2016, 10:29:39 PM »

kilokahn

yagen

musicmaker

krkp1

 how many are  done and fully recovered?

 think the answer is 0
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crimsontide

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Re: Compendium of Outcomes
« Reply #37 on: March 12, 2016, 11:37:24 PM »

Let's see some actual evidence that even 10% of LL patients have a successful outcome

Actual video evidence

I've seen    2 users post multiple videos

1- sweden

2- rgkey

neither of them has what what I'd consider  a positive outcome

Where's the evidence? 

Any video purporting to show a positive outcome needs to show at the minimum

1- walking up and downstairs fairly normally

2- leg exercises, such as    squatting to parallel

3-   normal jogging or running

that's the minimum.  No video can show more than a few minutes, so we really can't know how well someone is doing throughout a full day, but  if they can't perform the 3 activities listed above, we can safely conclude  that the outcome is not positive

Any video should also show evidence of the surgery... being in an external fixator is an obvious   method of verification... A little less obvious would be scars consistent with one having had the surgery

I already know we won't have these videos, and that's the point

There's very little evidence of   patients having  great outcomes

Anyone that disagrees... Fine, prove me wrong

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crimsontide

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Re: Compendium of Outcomes
« Reply #38 on: March 12, 2016, 11:49:30 PM »



My standards are so high...
 
walking downstairs normally

quasi normal jogging or running

ability to   to do basic leg exercises

If these activities are considered too extreme for LL patients, that proves my point



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asfastaslight

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Re: Compendium of Outcomes
« Reply #39 on: March 19, 2016, 07:16:25 PM »


My standards are so high...
 
walking downstairs normally

quasi normal jogging or running

ability to   to do basic leg exercises

If these activities are considered too extreme for LL patients, that proves my point
Given the obesity rate in the united states and the amount of men willing to shoot up steroids to look better, or even self injecting melataonon to get a better tan.  Or how people really are fake in general let's face it going to the club no one cares about anything woman want a tall guy. They don't care how he looks as long as you hide the LL your gonna do better.  If that is what people want to get better at those sort of situations as they don't want to get married or have kids let them.

Many American also cannot do those things, and actually most people can't do a single pull up or chin up correctly.
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TIBIKE200

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Re: Compendium of Outcomes
« Reply #40 on: March 19, 2016, 07:24:02 PM »

Given the obesity rate in the united states and the amount of men willing to shoot up steroids to look better, or even self injecting melataonon to get a better tan.  Or how people really are fake in general let's face it going to the club no one cares about anything woman want a tall guy. They don't care how he looks as long as you hide the LL your gonna do better.  If that is what people want to get better at those sort of situations as they don't want to get married or have kids let them.

Many American also cannot do those things, and actually most people can't do a single pull up or chin up correctly.

Women in clubs only want a tall guy while completely disregarding facial aesthetics? That is the most absurd thing I have ever read or heard in my life. Just like we wanna bang a hot chick in a club without investigating her personality, the girls in the clubs only wanna bang a hot guy. And a hot guy is not only a guy who is tall....
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Alittletooshort

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Re: Compendium of Outcomes
« Reply #41 on: March 19, 2016, 11:47:23 PM »

The biggest problem in clubs is that soo many hot girls wear high heels that make them 1,80+. Being taller simply offers you more possibilities, and it also increases your overall attractiveness. Facial aestethics are more important than height but I doubt that an attractive 170 guy has good chances of getting a lot of hot girls in clubs were most of them are 175+ in their heels.
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Thatdude950

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Re: Compendium of Outcomes
« Reply #42 on: March 20, 2016, 05:55:32 AM »


Wow thatdude. Good work you've done here lol.

I actually AM happy with my result. I made it to my initial realistic goal of 5'8". And, aside from the my left screw issue (hope to get it fixed soon), my recovery is very good (though not perfect). Soft tissue recovery takes a while, but stretching has been helping me so much. I'm just happy I was complication-free (unless you count the left screw issue). I'm just not satisfied. But I guess we're saying the same thing.

Also, even though I use a machine (makes it easier/safer, since squatting is harder with long femurs) and not a free barbell, I can squat 285 lbs right now ;)

I would more say my outcome was good physically (would have been closer to ShyShy if not for the left screw and the fact that I had to sit/work a lot during clicking), but didn't solve the height neuroris.

Cool - good that you're recovering fairly well. When I put you in the poor category my thinking was, if a reasonable person was told before doing LL that the result would do nothing for their height neurosis and they would still feel short - would they consider that a good outcome? Would they still do the surgery? Probably not. I'd edit you into the neutral category (or even positive of your height neurosis does end up resolving itself without further surgery and you're happy with your athletic abilities) but I can't seem to edit the post.

You use the smith machine? And do you think the reason is long femurs, or poor ankle flexibility that's stopping you squatting? I'd guess the latter. Video?
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alps

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Re: Compendium of Outcomes
« Reply #43 on: March 20, 2016, 06:00:07 AM »

how much did BD gain, Kilo?
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Thatdude950

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Re: Compendium of Outcomes
« Reply #44 on: March 20, 2016, 06:03:10 AM »

Let's see some actual evidence that even 10% of LL patients have a successful outcome

Actual video evidence

I've seen    2 users post multiple videos

1- sweden

2- rgkey

neither of them has what what I'd consider  a positive outcome

Where's the evidence? 

Any video purporting to show a positive outcome needs to show at the minimum

1- walking up and downstairs fairly normally

2- leg exercises, such as    squatting to parallel

3-   normal jogging or running

that's the minimum.  No video can show more than a few minutes, so we really can't know how well someone is doing throughout a full day, but  if they can't perform the 3 activities listed above, we can safely conclude  that the outcome is not positive

Any video should also show evidence of the surgery... being in an external fixator is an obvious   method of verification... A little less obvious would be scars consistent with one having had the surgery

I already know we won't have these videos, and that's the point

There's very little evidence of   patients having  great outcomes

Anyone that disagrees... Fine, prove me wrong

I agree. Until there's better evidence of recoveries (rather than just 1, questionable example [ShyShy] from 100's of diaries) you guys are having your desperation exploited. You're getting butchered by doctors and making them rich - and often yourself poor - in the process.
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TIBIKE200

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Re: Compendium of Outcomes
« Reply #45 on: March 20, 2016, 06:10:45 AM »

I agree. Until there's better evidence of recoveries (rather than just 1, questionable example [ShyShy] from 100's of diaries) you guys are having your desperation exploited. You're getting butchered by doctors and making them rich - and often yourself poor - in the process.

The Catagni patients I have spoken to are all happy. And Lumier is a real person
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Thatdude950

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Re: Compendium of Outcomes
« Reply #46 on: March 20, 2016, 07:45:30 AM »

That doesn't really say that much though does it? Feelings count for something, but of course they'll try to be happy. What counts most are empirically verifiable results ... actual proof of recovery and ability rather than just words.
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TIBIKE200

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Re: Compendium of Outcomes
« Reply #47 on: March 20, 2016, 08:05:49 AM »

That doesn't really say that much though does it? Feelings count for something, but of course they'll try to be happy. What counts most are empirically verifiable results ... actual proof of recovery and ability rather than just words.

They dont report any problems with walking.
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Penguinn

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Re: Compendium of Outcomes
« Reply #48 on: March 20, 2016, 01:35:07 PM »

"Continued height neurosis" isn't a negative outcome of the surgery. YellowSpike's considering another LL because his first one went well, why isn't that in positive outcomes?
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Thatdude950

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Re: Compendium of Outcomes
« Reply #49 on: March 20, 2016, 03:03:12 PM »

They dont report any problems with walking.

Most don't, it's the next level and beyond that we're not seeing much of.

Penguin - I can't edit, but I don't think it was unfair. Maybe neutral would have been better ... but if the surgery doesn't cure height neurosis then what was the point?
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TIBIKE200

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Re: Compendium of Outcomes
« Reply #50 on: March 20, 2016, 03:14:32 PM »

Most don't, it's the next level and beyond that we're not seeing much of.

Penguin - I can't edit, but I don't think it was unfair. Maybe neutral would have been better ... but if the surgery doesn't cure height neurosis then what was the point?

What do you want them to report? They all got back to work and do not regret the surgery.
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Thatdude950

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Re: Compendium of Outcomes
« Reply #51 on: March 20, 2016, 03:36:34 PM »

What do you want them to report? They all got back to work and do not regret the surgery.

They don't have to report anything. But if I was considering surgery I'd want some evidence of post surgery athleticism. Not just walking and jogging.

And more information about the patients too. The average person is oberweight and slow. If an overweight slow person who never does anything athletic has the surgery and is back to their life of just walking ... well, that doesn't tell me much because their lifestyle and expectations are nothing like the ones I have for myself.
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theuprising

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Re: Compendium of Outcomes
« Reply #52 on: March 28, 2016, 03:23:38 AM »

3 diaries I'd consider successful are

1) Wannabegiant 4.5cm Tibias

2) Discreteuser 4.1cm Tibias

3) Vetpat initially lengthened 5.5cm ended up approx 5.2-5.1cm
due to taking off fixators a little early leading to compression. Tibias

I am counting as success the ability to return to over 95% athletic
ability from people who were athletic pre LL.
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Thatdude950

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Re: Compendium of Outcomes
« Reply #53 on: April 23, 2016, 08:41:06 AM »

New additions please:

Positive: stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)

Neutral: prince2 "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.

Negative: BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union.
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Bigfaker

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Re: Compendium of Outcomes
« Reply #54 on: May 13, 2016, 11:27:29 AM »

This is really helpful, Thatdude

I have actually been compiling a list of my own, detailing the results from the Sringari House. Still gonna be a while, as I haven't yet tracked everyone down.

Not trying to downplay or put a happy face on anything, but to clarify:
  • I am 25 months post-frame removal. Also, I had a lot of delays in taking corrective actions due to crappy insurance and well...frustration and depression, honestly.
  • Not sure if "multiple corrective surgeries" is entirely accurate. The ankle surgery is a bit of a gray area. I had damaged it years before. Having my leg broken above it definitely did not help it, but I was discussing a surgery with a foot doc back in 2013, a few months pre-LL
  • I am 1 day post-revision nailing/bone graft. That one definitely counts as a corrective. And in case anybody wants to know: the surgery went great. The nerve block is gradually wearing off and I just started bending my knee a few hours ago and am resuming my glute/hip/core exercises...in bed (LOL, sounds like that fortune cookie joke!)
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Prev. Height: 5'-5.25"/165.7cm (Morning)
External LON with Dr. Raj Sringari - Install: 12/17/13 * Lengthened: ~3"/7.6cm * Frame Removal 04/17/14
Diagnosed with Partial Non-Union: 02/09/16
Ankle Debridement Surgery: 02/22/16
Revision Nailing/Bone Graft/Tenotomy - Loma Linda Medical Center: 05/12/16

stillyoung

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Re: Compendium of Outcomes
« Reply #55 on: May 13, 2016, 04:15:34 PM »

New additions please:

Positive: stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)

Neutral: prince2 "Getting back to where I was before is impossible if you ask me. That will never happen. If I get back 70 % I would be very happy." despite this he seems satisfied.

Negative: BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union.

Thatdude950, Video evidence is not pending. I'd never post a video of myself on any forum. If you find yourself on the West coast ever, I'll gladly invite you to a workout ;)
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crimsontide

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Re: Compendium of Outcomes
« Reply #56 on: May 14, 2016, 03:10:21 AM »

bigfaker,

why can't you run? Bone issues?
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Bigfaker

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Re: Compendium of Outcomes
« Reply #57 on: May 14, 2016, 03:25:56 AM »

Hey crimson,

I have (partial) non-union in the L anterior tib. I had a bone graft and revision nailing yesterday. I have jogged a tiny bit, but only in the Alter-G treadmill, at maybe 30% weight. I have videos I'll post eventually, but it's not very impressive...actually all my Alter-G videos are just walking so far...I do have some footage of Patient 6 running when he came to visit CA last year.

How are you doing lately?
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Prev. Height: 5'-5.25"/165.7cm (Morning)
External LON with Dr. Raj Sringari - Install: 12/17/13 * Lengthened: ~3"/7.6cm * Frame Removal 04/17/14
Diagnosed with Partial Non-Union: 02/09/16
Ankle Debridement Surgery: 02/22/16
Revision Nailing/Bone Graft/Tenotomy - Loma Linda Medical Center: 05/12/16

Thatdude950

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Re: Compendium of Outcomes
« Reply #58 on: May 28, 2016, 09:40:01 AM »

This is really helpful, Thatdude

I have actually been compiling a list of my own, detailing the results from the Sringari House. Still gonna be a while, as I haven't yet tracked everyone down.

Not trying to downplay or put a happy face on anything, but to clarify:
  • I am 25 months post-frame removal. Also, I had a lot of delays in taking corrective actions due to crappy insurance and well...frustration and depression, honestly.
  • Not sure if "multiple corrective surgeries" is entirely accurate. The ankle surgery is a bit of a gray area. I had damaged it years before. Having my leg broken above it definitely did not help it, but I was discussing a surgery with a foot doc back in 2013, a few months pre-LL
  • I am 1 day post-revision nailing/bone graft. That one definitely counts as a corrective. And in case anybody wants to know: the surgery went great. The nerve block is gradually wearing off and I just started bending my knee a few hours ago and am resuming my glute/hip/core exercises...in bed (LOL, sounds like that fortune cookie joke!)

Thanks for the clarification.

I saw a post by OldiebutGoodie - he wasn't happy with my assessment. He didn't think the surgery was worth it, but had no complications and doesn't consider it a poor outcome. I'd like him moved to neutral and his reply to be added next to his name, I'll try find it.
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Thatdude950

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Re: Compendium of Outcomes
« Reply #59 on: May 28, 2016, 09:46:39 AM »

Another one - andrewshizzles. He's an interesting one. He's able to run and move around OK. He runs a 30 minute 5k which is very very average but not awful, can shoot hoops OK etc. But he had a serious complication - his nail broke post recovery, his leg snapped in half and he had to fly half way around the world for emergency surgery. Please add him to "other outcomes".

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jaymorgan712

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Re: Compendium of Outcomes
« Reply #60 on: June 08, 2016, 10:28:56 PM »

This surgery definitely is 50/50. I remember looking at this topic a while back and thinking just how risky this surgery is.

Also, a lot of the people that had poor outcomes were the people who went with bad doctors.
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Anna21

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Re: Compendium of Outcomes
« Reply #61 on: June 08, 2016, 11:08:36 PM »

@Thatdude - Do you know who his doctor was and how much he lengthened? That sounds really scary. How's he now?
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