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Author Topic: Compendium of Outcomes  (Read 57493 times)

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KiloKAHN

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Re: Compendium of Outcomes
« Reply #93 on: August 22, 2018, 11:45:23 PM »

Moderators, this is serious. Neither are you commenting neither taking action on the above points. This is like you are playing with the lives of future LLers by making them unable to make the most out of the information posted here. Please comment(and if possible take actions or tell why the following is not possible):
-upgradation of the form as provided by OYG
-why spreadsheet kind of data of of former and current LLers can't be uploaded.
-why are you not commenting on any suggestions to improve the forum?
-are their any financial or technical constraints? If yes please share with us so that we can crowdsource the solutions for the same.
Hoping to get a fast reply this time.

The site admin/owner is the only one who can make any forum upgrades. That's outside the realm of moderator capabilities.

Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.
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Surgery performed by Dr Mangal Parihar at Mangal Anand Center for Limb Lengthening & Reconstruction. http://www.limblengtheningforum.com/index.php?topic=634.0
Pre-surgery height:  164 cm (Surgery on 6/25/2014)
Post-surgery height: 170 cm (Frames removed 6/29/2015)

totallyred

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Re: Compendium of Outcomes
« Reply #94 on: August 27, 2018, 12:49:11 PM »

The site admin/owner is the only one who can make any forum upgrades. That's outside the realm of moderator capabilities.

Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.

Yes, then ask admin/owner to do the same.
Also if a minor change can bring positive change to lives of millions of users, don't you think it should be taken up? I can very well search and dig the data, but if the data is put in a more accessible/ readable format shouldn't it save my time/energy which I can put to another good uses?
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hotty

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Re: Compendium of Outcomes
« Reply #95 on: August 27, 2018, 07:33:31 PM »

Yes, then ask admin/owner to do the same.
Also if a minor change can bring positive change to lives of millions of users, don't you think it should be taken up? I can very well search and dig the data, but if the data is put in a more accessible/ readable format shouldn't it save my time/energy which I can put to another good uses?

Nobody owes you anything. If you want, start your own forum. At least be polite if you asking for help from someone.

No one cares about your time. If you want to make good use of your time, go earn money and go to a good LL doctor.
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OverrideYourGenetics

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Admin, come out!
« Reply #96 on: October 07, 2018, 08:42:43 AM »

Aside from that, if you can't take the time to search the forums for answers to your questions or look through a patient experience in enough detail for yourself, then maybe you shouldn't be jumping into cosmetic lengthening in the first place.

I'd agree with that. However, there's so much irrelevant information in this forum, that a new LL candidate just doesn't need to go through. And this forum doesn't allow updating posts older than a few hours, which forces EVERY SINGLE READER to pointlessly go through an entire thread, when the OP would be perfectly willing to volunteer updating the first post with the summary of the topic. (I know I would).

Admin, I understand you no longer care about LL (I'm far less often on here now that I'm done with it, than before), but please realize that once you've created this forum for people to share their journeys and questions, you do have a moral responsibility to them. It's fine if you want to step away, but please enable others to carry the torch.

Nobody owes you anything. If you want, start your own forum. At least be polite if you asking for help from someone.

I offered to upgrade the forum (see my post above), because I've done this before, and I have the knowledge, will and means to keep a forum up to date indefinitely. But my hands are tied without the collaboration of whoever is administrating this forum.
« Last Edit: October 07, 2018, 10:48:01 AM by OverrideYourGenetics »
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

totallyred

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Re: Admin, come out!
« Reply #97 on: October 07, 2018, 10:01:40 AM »

I'd agree with that. However, there's so much irrelevant information in this forum, that a new LL candidate just doesn't need to go through. And this forum doesn't allow updating posts older than a few hours, which forces EVERY SINGLE READER to pointlessly go through an entire thread, when the OP would be perfectly willing to volunteer updating the first post with the summary of the topic. (I know I would). So yea, f*** you admin for starting this and dropping the ball.

I offered to upgrade the forum (see my post above), because I've done this before, and I have the knowledge, will and means to keep a forum up to date indefinitely. But my hands are tied without the collaboration of whoever is administrating this forum.

Yup, if someone is an admin, he should be providing ways to improve, facilitate the improvement by working in collaboration with the ones who are willing to do it, rather than saying go fk yourself and create a new forum. Why are you admin then, don't you think with power comes responsibility?
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PANDA:BEAR..

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Re: Compendium of Outcomes
« Reply #98 on: July 05, 2019, 08:26:05 PM »

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)

... Hey .. Thatdude950,  great job ... when can we have a update?
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programdude

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Re: Compendium of Outcomes
« Reply #99 on: September 15, 2019, 09:24:53 AM »

Just posting back here since I see the post was never updated but I firmly put myself in the positive outcome section but that was despite a fracture and a long recovery in general.

While I definitely want to point out that my experience did NOT play out the way I envisioned, and I think my case is a lesson that no matter how prepared you are for LL, that things can still go awry- But my surgery completely cured my dysphoria, so lumping me in with the negative experience crowd is disingenuous because I haven't regretted LL and am a proponent of it for people in similar head spaces as I was pre LL, albeit a cautious one that doesn't think its right for everyone, especially those who need to recover quickly for work or care about sports.
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Dr. Paley Patient- Surgery completed successfully on July 22nd
My Diary for those who want a real play by play to know what to expect:http://www.limblengtheningforum.com/index.php?topic=733.0

Starting height: 5 8
End Height-:5 11 +

Tupac

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Re: Compendium of Outcomes
« Reply #100 on: November 22, 2019, 08:08:02 PM »

Hello everyone !

Do you think this topic is now obsolete with new techniques like the STRYDE nail? If I understood correctly,  the negative effects came mainly with external nails, no ?

Also thank's to programdude who did this huge work !
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Medium Drink Of Water

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Re: Compendium of Outcomes
« Reply #101 on: November 23, 2019, 05:37:10 AM »

No, it is far from obsolete.  Anyone can have problems with LL and not everyone can afford STRYDE even if it were a solution to every LL issue.
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Gained 3 inches on tibias (LON) in 2007 at the Beijing Institute of External Skeletal Fixation Technology with Dr. Hetao Xia.

I only reply to very personal or moderation-related PMs. If you have LL questions please ask them in this thread: http://www.limblengtheningforum.com/index.php?topic=64544

Tupac

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Re: Compendium of Outcomes
« Reply #102 on: November 23, 2019, 02:58:31 PM »

No, it is far from obsolete.  Anyone can have problems with LL and not everyone can afford STRYDE even if it were a solution to every LL issue.

Yes you're right, i forgot that STRYDE is still too expensive for many people.
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SuperV1234

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Re: Compendium of Outcomes
« Reply #103 on: February 26, 2021, 09:56:51 PM »

I'm very short and I've been obsessing over LL... I think it would improve my quality of life a lot. But this thread makes me think it's not worth the risk. Is this really how dangerous it is? Or are we seeing only the perspective of people who were bothered to report complications? Are there better statistics?
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Realistic

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Re: Compendium of Outcomes
« Reply #104 on: February 28, 2021, 07:07:24 AM »

There are no better statistics...The risks are real..Say, I tell you that 97% chance that you will not have any problems, would you do it?There is always a risk of 3% but for you it is 100% if it happens..So, you should be prepared..Do it if you are adventurous or if your height is causing you so much problem that there is no way out..
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"Where the willingness is great, the difficulties cannot be great" - Machiavelli
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