Compendium of Outcomes

Verified Member

Posts: 359

Joined: Oct 2015

Posted on Jan 5, 2016, 11:19 am

#1

A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.

Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)

Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Yellowspike - Continued height neurosis, looking at further surgery
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.
OldieButGoldie - Unhappy with post LL functionality. Updated: I saw a post by OldiebutGoodie (see reply #99 in OldieButGoldie's Patient's Experience Topic) - 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

Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Cooper - "Serious complications, corrective surgery(s) required, 100k+ in additional costs.
musicmaker - "multiple corrective surgeries required"
BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union

Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.

Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
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.

Edited: For Thatdude950 to include updates/additions to original post (May 2016)

Edit Post

A lot of diaries have ambiguous endings under or around a year after lengthening. I've added the ones that stand out - clear positives, clear negatives, or outcomes that were at least updated signifantly after lengthening. There are so many diaries to read. This is probably 10% or so of them, if not less. Hopefully this is useful. Feel free to add others. If you're here & not happy with what I've said, I will add in your response.

Good outcomes:
ShyShy - Happy with result, no further surgery.
Medium Drink of Water - Happy with result, no further surgery.
badboy - Happy with result
Apo - Happy with result (my opinion - good aesthetics, very slow running)
Hannah84 - Happy with result
stillyoung - Happy with result
Lara - Happy with result
upinthesky - Happy with result
stillyoung - happy with outcome, claims ~200+ pound deadlift and squat for reps (video evidence pending)

Neutral outcomes:
Smallguy - Required further corrective surgery but seems happy with the overall result.
Tdot - Decided to have further surgery
The_Rock - Happy with outcome, but running is ~70% of pre LL ability, explosiveness 40 - 50% (unacceptable in my opinion)
Growing - Happy with result, but has not recovered athletically after ~3 years.
Ocean - Required further corrective surgery but seems happy with the overall result.
Body Builder - Happy with outcome, but says his athletic ability was significantly diminished.
Dryani - Seems happy, but has not done more than walk +2 years after LL. Athletic ability also seems significantly diminished.
Yellowspike - Continued height neurosis, looking at further surgery
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.
OldieButGoldie - Unhappy with post LL functionality. Updated: I saw a post by OldiebutGoodie (see reply #99 in OldieButGoldie's Patient's Experience Topic) - 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

Poor outcomes:
Walk6 - Unhappy with post LL functionality
RGKEY - Moderate deformation, loss of functionality, further surgery planned (I believe?)
Greekster - Unacceptable recovery after 3 years, multiple lengthenings.
daigoro - Serious complications - corrective surgery required (callus fracture), loss of functionality
Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
Master Hy- Serious complications - multiple corrective surgeries ($250,000 + financial loss), loss of function
Crimsontide - Serious complications - multiple corrective surgeries, loss of functionality
programdude - Serious complications - Leg snapped post lengthening, corrective surgery required.
Polycrates - Regret, continuance (worsening?) of BDD symptoms re: proportions
Sweden - Unhappy with post LL function, continuance (worsening?) of BDD symptoms re: proportions, considering further surgery
blackbear - Serious complications - multiple corrective surgeries, loss of functionality
crazy+6 - Serious complications, corrective surgeries, multiple lengthenings, loss of functionality
Strugglinghard - Serious complications, loss of functionality
Cooper - "Serious complications, corrective surgery(s) required, 100k+ in additional costs.
musicmaker - "multiple corrective surgeries required"
BigFaker. 3+ years later and cannot run. Multiple corrective surgeries. Right leg only 65 - 70% healed, left leg had a non Union

Unknown outcomes of note
Leechlet - Dissapeared abruptly.
Big D - stopped posting after 6 months, but on a positive note.

Other outcomes
mmm_native - multiple corrective surgeries & loss of function. Initially lengthened with an uknown doctor in Iran.
prince2 - 1.5 years post lengthening he still is not allowed (able?) to run, but seems to be happy & getting better.
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.

Edited: For Thatdude950 to include updates/additions to original post (May 2016)

Like (0)

T

Thatdude950

Verified Member

Posts: 57

Joined: Oct 2015

Posted on Jan 6, 2016, 7:28 am

#2

Although there's plenty of examples of patients needing corrective surgery, the most common negative theme is poor athletic recovery. If a patient genuinely does not care about being fit & mobile, & is happy with no activity outside of walking/jogging/basic movement, a number of diaries could be placed in the "good" category. Walk6, Oldiebutgoodie, dryani, bodybuilder ... they (I think) had had no complications, and for some this would be acceptable. (To me though, this kind of trade off is totally unacceptable...)

Also, as mentioned, some had no complications but were left with the same insecurities. These guys have massive balls for being honest about how they feel. (In fact, everyone keeping a diary & putting themselves out there has massive balls) But I think this does still constitute a poor result. What's the point of doing this if it doesn't actually help your height neurosis? I know people like to dismiss this "Oh, I *know* I won't feel that way" ... all I can say it look at the results. You aren't special. This is something that happens across the board with ALL cosmetic surgery, and is something you should take seriously.

Yes Alu, I'm still lurking

. Honestly, I think the data speaks for itself. I hope it is useful.

Like (0)

T

Thatdude950

Verified Member

Posts: 207

Joined: Oct 2015

Posted on Feb 5, 2016, 7:37 am

#3

Here's another post I found by Hanshi - he did something similar in 2014, going through each Betz diary.

QuoteI have read all the Dr.Betz diaries on old forum and would like to share my findings:

There are currently 38 topics under the "Dr.Betz diaries" folder. 5 of them can't be used for this analysis: David-internal femurs, S-internal tiabias, Measurements, Nctham1, and Iwill. David cancelled his surgery, Nctham is not doing cosmetic LL and the other 3 don't contain enough information.
This leaves 33 cases, which is not a small sample and quite representative since these cases cover a long time span(over 8 years).

within this sample there are 12 patients with confirrmed complications that required additional surgery:
1. Romegas (titanium replacement in 1 leg, reason unknown)
2. Tallix (titanium replacement in 1 leg due to delayed bone healing)
3. TibAndFemur (Nail bending)
4. Stillyoung (Nail bending/breaking)
5. Geheimes (Nail malfunction, bone rebroken and nail taken out and repaired)
6. Tall (Nail bending)
7. Badboy (Nail malfunction, nail exchanged, broken screw)
8. MasterHY ( wound opened and got infected, infected tissue removed surgically)
9. T.dot (nail malfunction twice. Twice nail replacement)
10. OldieButGoldie (2 broken screws)
11. Andrewshizzles (broken nail)
12. Apotheosis tibia (broken nail and delayed/non-union)

Further there are 5 diaries which end abruptly and have a high probability that the patient got a complication:

a. Timone (complains in his last post about bad bone consolidation)
b. Torontonian (vanishes very early during his lengthening)
c. Aymahano (has a lot of problems and vanishes)
d. NoSleep (vanishes just after finished clicking, was the 1st patient to use the new 11mm Betzbone)
e. DcLongFemurs (vanishes after finishing clicking, also has the 11mm Betzbone)

Are the others without complication? For my calculation i will assume so, but of course we cannot be 100% sure since we know that Other patients have tried to hide their complications. What's worth mentioning is that Lucky did have a nail malfunction. However she chose to stop lengthening at that point and therefore didn't undergo additional surgery. But she didn't reach her goal.
Also important is the vanishing of MasterHY. He had already a complication, but from his diary it is obvious that he has had a lot more problems. In my opinion he could very well have a dangerous bone infection.

Anyhow, due to the analysis we come to the following result:

Complication rate for Dr. Betz patients in our sample is between 36% and 52%. 36% is the best case scenario, 52% is the scenario where the 5 abruptly ending diaries all have had complications.
The real figure probably lies between both numbers in case some of those 5 didn't have complications.

I would recommend to read those diaries with open eyes. I have found some interesting information which seems to characterize Dr. Betz quite well. I will write about this at a later time.

I had listed "badboy" as having a good outcome, but only glanced through his diary. Looks like he had some complications along the way that I missed.

Edit Post

Here's another post I found by Hanshi - he did something similar in 2014, going through each Betz diary.

QuoteI have read all the Dr.Betz diaries on old forum and would like to share my findings:

There are currently 38 topics under the "Dr.Betz diaries" folder. 5 of them can't be used for this analysis: David-internal femurs, S-internal tiabias, Measurements, Nctham1, and Iwill. David cancelled his surgery, Nctham is not doing cosmetic LL and the other 3 don't contain enough information.
This leaves 33 cases, which is not a small sample and quite representative since these cases cover a long time span(over 8 years).

within this sample there are 12 patients with confirrmed complications that required additional surgery:
1. Romegas (titanium replacement in 1 leg, reason unknown)
2. Tallix (titanium replacement in 1 leg due to delayed bone healing)
3. TibAndFemur (Nail bending)
4. Stillyoung (Nail bending/breaking)
5. Geheimes (Nail malfunction, bone rebroken and nail taken out and repaired)
6. Tall (Nail bending)
7. Badboy (Nail malfunction, nail exchanged, broken screw)
8. MasterHY ( wound opened and got infected, infected tissue removed surgically)
9. T.dot (nail malfunction twice. Twice nail replacement)
10. OldieButGoldie (2 broken screws)
11. Andrewshizzles (broken nail)
12. Apotheosis tibia (broken nail and delayed/non-union)

Further there are 5 diaries which end abruptly and have a high probability that the patient got a complication:

a. Timone (complains in his last post about bad bone consolidation)
b. Torontonian (vanishes very early during his lengthening)
c. Aymahano (has a lot of problems and vanishes)
d. NoSleep (vanishes just after finished clicking, was the 1st patient to use the new 11mm Betzbone)
e. DcLongFemurs (vanishes after finishing clicking, also has the 11mm Betzbone)

Are the others without complication? For my calculation i will assume so, but of course we cannot be 100% sure since we know that Other patients have tried to hide their complications. What's worth mentioning is that Lucky did have a nail malfunction. However she chose to stop lengthening at that point and therefore didn't undergo additional surgery. But she didn't reach her goal.
Also important is the vanishing of MasterHY. He had already a complication, but from his diary it is obvious that he has had a lot more problems. In my opinion he could very well have a dangerous bone infection.

Anyhow, due to the analysis we come to the following result:

Complication rate for Dr. Betz patients in our sample is between 36% and 52%. 36% is the best case scenario, 52% is the scenario where the 5 abruptly ending diaries all have had complications.
The real figure probably lies between both numbers in case some of those 5 didn't have complications.

I would recommend to read those diaries with open eyes. I have found some interesting information which seems to characterize Dr. Betz quite well. I will write about this at a later time.

I had listed "badboy" as having a good outcome, but only glanced through his diary. Looks like he had some complications along the way that I missed.

Like (0)

T

Thatdude950

Verified Member

Posts: 18

Joined: Oct 2015

Posted on Mar 20, 2016, 5:55 am

#4

Quote from: YellowSpike on February 19, 2016, 07:53:08 PM
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?

Like (0)

T

Thatdude950

Verified Member

Posts: 242

Joined: Oct 2015

Posted on Mar 20, 2016, 6:03 am

#5

Quote from: crimsontide on March 12, 2016, 11:37:24 PMLet'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.

Like (0)

T

Thatdude950

Verified Member

Posts: 480

Joined: Oct 2015

Posted on Mar 20, 2016, 7:45 am

#6

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.

Like (0)

T

Thatdude950

Verified Member

Posts: 60

Joined: Oct 2015

Posted on Mar 20, 2016, 3:03 pm

#7

Quote from: TIBIKE200 on March 20, 2016, 08:05:49 AMThey 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?

Like (0)

T

Thatdude950

Verified Member

Posts: 128

Joined: Oct 2015

Posted on Mar 20, 2016, 3:36 pm

#8

Quote from: TIBIKE200 on March 20, 2016, 03:14:32 PMWhat 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.

Like (0)

T

Thatdude950

Verified Member

Posts: 123

Joined: Oct 2015

Posted on Apr 23, 2016, 8:41 am

#9

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.

Like (0)

T

Thatdude950

Verified Member

Posts: 372

Joined: Oct 2015

Posted on May 28, 2016, 9:40 am

#10

Quote from: Bigfaker on May 13, 2016, 11:27:29 AMThis 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.

Like (0)

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Edit Post

Related Topics