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Permanent effects of LL

L
LLL
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Posts: 426
Joined: Sep 2013
Posted on Dec 20, 2013, 1:52 pm
#31
Quote from: speaknuh on December 20, 2013, 12:44:17 PMFor example, in the recent discussion of the long term effects of CLL and the possibility that one might sustain knee problems from doing internal tibial surgery, we have little basis to confirm any of this is true besides the word of doctor Franz Birkholtz.  Which is not to say that I wish to scrutinize the doctor here since it's got more to do with the nature of internet anonymity in the end.  I suggest cross referencing with another doctor would definitely prove useful here, but that hasn't been done yet. 

Actually that particular issue is confirmed through recent research on non-cosmetic patients and not just the word of one doctor:

http://www.limblengtheningforum.com/index.php?topic=99.msg2672#msg2672

And I bet many of them didn't even lengthen much, they simply had a rod implanted to help correct their injuries.
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S
speaknuh
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Posts: 372
Joined: Sep 2013
Posted on Dec 21, 2013, 7:08 am
#32
Quote from: old forum PartyLeaks on December 20, 2013, 01:52:56 PMActually that particular issue is confirmed through recent research on non-cosmetic patients and not just the word of one doctor:

http://www.limblengtheningforum.com/index.php?topic=99.msg2672#msg2672

And I bet many of them didn't even lengthen much, they simply had a rod implanted to help correct their injuries.

I see... does this issue occur in both internal tibia and internal femur patients, or just tibia patients as the study suggests?  What do we know about the long term effects on patients who undergo internal femoral lengthening?
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L
LLL
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Posts: 45
Joined: Sep 2013
Posted on Dec 21, 2013, 12:25 pm
#33
Quote from: speaknuh on December 21, 2013, 07:08:54 AMI see... does this issue occur in both internal tibia and internal femur patients, or just tibia patients as the study suggests?  What do we know about the long term effects on patients who undergo internal femoral lengthening?

Wondering about that myself.
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S
speaknuh
Verified Member
Posts: 165
Joined: Sep 2013
Posted on Dec 24, 2013, 10:34 am
#34
Going to just bump this thread since I don't think we've reached any definitive answer on the long term effects of LL.  To me, there's absolutely no reason for me to sacrifice a pair of otherwise healthy legs just for some slight height gain.

Concerning internals:

If arthritis is a common occurrence among patients who undergo internal tibial lengthening, why have I not seen this discussed well enough in the past (on old forum /LL Forum)?  What do we know about the long term experience of patients who've undergone internal femoral lengthening?  How many years are we looking at before we can get a good evaluation of whether a patient sustains long term consequences from CLL? 

I recall various sources stating CLL contains no long term side effects so long as the procedure is done correctly, so it's come as a bit of a shock to me that the internal tibial method has proven to have complications years down the line.  Sure everyone on the forum is as concerned about the short and long term risk factor as I am...?
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S
speaknuh
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Posts: 97
Joined: Sep 2013
Posted on Dec 25, 2013, 10:09 am
#35
It look like my replies (as well as old forum PartyLeaks's) on the "Site feels dead..." post were moved on over to this one, probably to consolidate relevant information to this one post.  Though I didn't request this, I believe it will help keep all the information in one compact thread.  Just to clear up the confusion as one of my replies starts with "this forum is far from dead" or something along the lines, which was in response to that original post.

Just wanted to bring this thing up as well: on the makemetaller post, there is a very clear statement on the site's must-read post that purports that LL has posed no long-term complications 50 years since its inception:

18. Are there any long-term complications from having LL?
LL has been practised for over 50 years and there are no reports of any long-term complications, and no reason or logic to suggest that there should be.
[source: old forum  Topic: Leg Lengthening FAQs (Frequently Asked Questions)]  http/www link edit

The reason this is strange to me is that it was written in 2011, three years after this pubmed article was published, clearly articulating the long-term issues of LL http://www.ncbi.nlm.nih.gov/pubmed/18758282

Ever since limblengtheningforum.com opened, I've had to completely re-evaluate my understanding of LL.  There's so much misinformation out there on the subject of limb lengthening, it's incredibly discouraging... we need to understand exactly what LL is, and clarify the level of risk we are getting ourselves into.  I'm glad we're now on what I think is a more open/free channel for communication through this forum, but I constantly wonder if this is enough. 

Stay safe, people.
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M
Muse
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Posts: 316
Joined: Sep 2013
Posted on Dec 25, 2013, 11:09 am
#36
@speaknuh, 

Yeap, I merged those posts into this topic so it's easier for everyone to not miss out on the information posted.  Also edited http/www links to Make Me Taller, as explained in our forum guidelines. 

So this thread will be the consolidated version for anyone interested in the long term effect of LL, it's definitely a topic worth having more insights and discussion about.  I was personally motivated to start the new forum because of a statement that sum up old forum  nowadays

"pick a cheap Doctor and cross your finger hoping it's safe".

That should not be the way.   Safety and Recovery must come first.   Also it's not healthy when one person is constantly shoving his opinion down people's throat and deleting posts that he disagree with, among other things.   

Since I disagree with how old forum  is run,  I decided to do something about it and hope that this forum will be better than old forum .
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L
longerlegzzz1980
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Posts: 166
Joined: Dec 2013
Posted on Dec 26, 2013, 1:40 am
#37
We should start a compilation of studies on this thread or another one.  This would provide a central location for solid research derived information involving a large number of patients.  We then discuss the conclusions of the studies, have a better assessment of the real risks, and be able to compile questions to ask current LL doctors using this data.

Do you all agree?
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S
somecm
Verified Member
Posts: 100
Joined: Oct 2013
Posted on Dec 26, 2013, 2:20 am
#38
The biggest long term effect I know is height.  Permanent effects of LL Permanent effects of LL
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S
speaknuh
Verified Member
Posts: 70
Joined: Sep 2013
Posted on Jan 10, 2014, 10:46 am
#39
Quote from: longerlegzzz1980 on December 26, 2013, 01:40:45 AMWe should start a compilation of studies on this thread or another one.  This would provide a central location for solid research derived information involving a large number of patients.  We then discuss the conclusions of the studies, have a better assessment of the real risks, and be able to compile questions to ask current LL doctors using this data.

Do you all agree?

I'm all for this, though I wonder how much has been done in the way of studying these long term effects.  If we were to compile a bunch of studies, it would be useful to note what particular surgery was done, when it was performed, what device was used, etc. (though for my interests specifically I want to know more about femoral internal lengthening).

It's strange to me that people out there are still interested in going through CLL when we haven't yet reached a consensus on its long term effects over our legs.  Two new patient diaries for Dr. Paley have sprung up over the last few weeks on the old forum, which I am pretty suspicious of (moreover, why post on a site where your message gets filtered by the admin before it becomes public?).  While I am anticipating the results of the Precice 2 before I jump into CLL myself, I'm pretty concerned about the welfare of the people undertaking CLL without knowing fully its risks and consequences. 
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M
Medium Drink Of Water
Verified Member
Posts: 463
Joined: Oct 2013
Posted on Jan 28, 2014, 8:41 pm
#40
I got a private message about this and wanted to share it with the rest of the forum.

Here's the Universal Pain Assessment Tool:
http://www.docstoc.com/docs/25724858/UNIVERSAL-PAIN-ASSESSMENT-TOOL

When walking it's 0.5 to 1.  I notice it but can ignore it and just keep walking, for hours if necessary.  After using the knees a lot I barely notice it at all.  If my knees were metal, I'd say they get rusty easily and that using them lubricates them.

When kneeling it's 1 to 3.  I always notice it, and sometimes I can ignore it.  But other times it interferes with tasks.  The worst situation would be walking on my knees on a hard surface.  I'd definitely feel it and it would interfere with how I walked.  Working out doesn't help this at all.  I guess I'd better behave myself since apologizing on my knees would hurt.  Permanent effects of LL
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