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Author Topic: On the fence, Coming to terms with potential complications~ realist approach  (Read 1505 times)

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billsmafia

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I am on the border to getting it done. Everything is in place and ready to move forward. The one thing holding me back is fear of serious complications. Most journals and surgeon sites make the procedure seem low risk but the published data says otherwise. Keep in mind that this is for precise internal femur.

(1) Largest sample size. Study with 782 patients: 34% complication rate. Type I (minimal intervention) in 11% of segments; Type II (substantial change in treatment plan) in 15% of segments; Type IIIA (failure to achieve goal) in 5% of segments; and Type IIIB (new pathology or permanent sequelae) in 3% of segments. Device and bone complications were the most frequent. https://www.tandfonline.com/doi/full/10.1080/17453674.2020.1835321

(2) Excerpt from Dr. Rozbruch's website: Overall, limb lengthening surgeries have a high success rate (about 95%). Scarring is usually minimal since only small incisions are required in most procedures. Although minor problems may occur with pins and stiffening in the joints, serious complications from limb lengthening surgery are rare. Those that do occur are usually in seen in patients who are already considered to be high risk, such as those who are being treated for limb salvage.
https://www.hss.edu/conditions_limb-lengthening-overview.asp

(3) Smaller study of 10 patients. High rates of postoperative complications were seen in seven out of 10 patients (70%). Nevertheless, limb lengthening goals and satisfaction were achieved in all patients.
https://www.sciencedirect.com/science/article/pii/S1877056816300883

(4) Smaller study of 25 limbs. 4% complication rate. Study co-authored by Dr. Rozbruch, potential COI.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4397804/pdf/11999_2014_Article_3575.pdf

(5) Smaller study of 26 procedures. 17% complication rate.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4062798/pdf/ORT-85-293.pdf
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ilovescience

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I am on the border to getting it done. Everything is in place and ready to move forward. The one thing holding me back is fear of serious complications. Most journals and surgeon sites make the procedure seem low risk but the published data says otherwise. Keep in mind that this is for precise internal femur.

(1) Largest sample size. Study with 782 patients: 34% complication rate. Type I (minimal intervention) in 11% of segments; Type II (substantial change in treatment plan) in 15% of segments; Type IIIA (failure to achieve goal) in 5% of segments; and Type IIIB (new pathology or permanent sequelae) in 3% of segments. Device and bone complications were the most frequent. https://www.tandfonline.com/doi/full/10.1080/17453674.2020.1835321

(2) Excerpt from Dr. Rozbruch's website: Overall, limb lengthening surgeries have a high success rate (about 95%). Scarring is usually minimal since only small incisions are required in most procedures. Although minor problems may occur with pins and stiffening in the joints, serious complications from limb lengthening surgery are rare. Those that do occur are usually in seen in patients who are already considered to be high risk, such as those who are being treated for limb salvage.
https://www.hss.edu/conditions_limb-lengthening-overview.asp

(3) Smaller study of 10 patients. High rates of postoperative complications were seen in seven out of 10 patients (70%). Nevertheless, limb lengthening goals and satisfaction were achieved in all patients.
https://www.sciencedirect.com/science/article/pii/S1877056816300883

(4) Smaller study of 25 limbs. 4% complication rate. Study co-authored by Dr. Rozbruch, potential COI.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4397804/pdf/11999_2014_Article_3575.pdf

(5) Smaller study of 26 procedures. 17% complication rate.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4062798/pdf/ORT-85-293.pdf

Have you experienced any discomfort caused by the complications so far?
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billsmafia

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I haven't gotten the procedure done yet.
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Hello,

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I don't have sources with me but from talking to surgeons, risk of losing a limb is around 1 in 2500 and risk of death is around 1 in 7000 if you do it in the US with a good surgeon. I don't have numbers for other outcomes like chronic pain, altered gait, inability to run and so on. They are not easy to find. You can schedule a consultation with someone like Rozbruch and tell him you are solely interested in these numbers and nothing else at this point.
Donghoon Lee also has a paper which would be worth reading.

Other than this, if you're this close to doing it and want to give it more thought, it is worth thinking about how you will be perceived if others find out about it. At the end of the day this is a big no-no in the eyes of the general public and will be so with whoever you will come across in life.
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zaozari

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There are already several studies, some general about LL, other about specifIc methods. I will try to reference some later on altough some I have only in PDF.

Creating this topic is important and it can be a very useful and rigorous compilation with quotes for further individual research.
However this was already tried at least exactly for Precice (the author may want to search for, it's in the last 3 months, altough I don't have the link now). Even more useful (because it centralizes the issue of complications, ways to minimize them, and biology of the bone is the same), he/you can use the "sticky topic" that follows, indicating "Precice" at the beginning of the post (or any other method: externals, LON, Stryde, LATN, etc.). Link:
http://www.limblengtheningforum.com/index.php?topic=680.0
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zaozari

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It's strange comparing 5% of Rozbruch with the 0% claimmed by Palley both with thousands of surgeries. And number of amputations seems strange also, and astonishing (in a certain way let's "hope" it includes very bad surgeons).
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HateLAPELoveSTEM

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I don't think if you are intimiated by complications of LL, you deserve LL if you don't mind me to say that.
Your being ambivalent between stepping back from LL and running the risks of complications to do LL is already explicitly indicating that you are not a good candidate for LL and you are very likely to regret doing this surgery during the procedures but just my 2 cents if I offended you I'd say sorry.
As for me, I don't care about complications except disabilities and even deaths are a resolution for me to get rid of height dysphoria. Not long time ago I weighed height higher than health and I thought Parkinson and Leukemia were better than being short so why I am writing you off not as a good candidate is already pretty self-explained.

'Once you hesitate on LL, you don't deserve LL'.

Regards and no offenses.
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HateLAPELoveSTEM

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It's strange comparing 5% of Rozbruch with the 0% claimmed by Palley both with thousands of surgeries. And number of amputations seems strange also, and astonishing (in a certain way let's "hope" it includes very bad surgeons).
I think they may be just their propagandas. It's very intelligible and understandable to boast about the good outcomes to their studies that can reveal the success rate of their surgeries.
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thaw1010

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Fixing your (probably) serious height dysphoria vs. accepting a 5% complication that comes along with it. Take your pick
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Medium Drink Of Water

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I think you don't need LL if your height dysphoria isn't bad enough that those numbers make you hesitant.
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zaozari

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It's strange comparing 5% of Rozbruch with the 0% claimmed by Palley both with thousands of surgeries. And number of amputations seems strange also, and astonishing (in a certain way let's "hope" it includes very bad surgeons).
Altough I don't believe in 0% complications either, but a more "true"/"accurate" number would still be far from those in the initial post.

Nevertheless I think we shouldn't hostilize people more fearful. They anyhow sometime, maybe still now, consider LL. They can bring useful information and no matter how unpleasant some things are for others  "more resolute" like me, to read, it's also a test to our resilience, to our decision making, which is not in the same level for everybody. We should stick to facts on this. For example, imagine 50% of people got crippled with LL: I would cry for a week and would be screwed maybe  forever but still would want to know. And I don't believe even 1% of people come here just to play and try to screw LLers or candidates.
So let's be courageous, as we already are, and accept these posts with objectivity and not frustration. But demanding references, not "heard of" and pure fear mongering for any hidden reason, from lack of money to religious fundamentalisms, moralists, hate sick people, etc.
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Masteryourlife

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Altough I don't believe in 0% complications either, but a more "true"/"accurate" number would still be far from those in the initial post.

Nevertheless I think we shouldn't hostilize people more fearful. They anyhow sometime, maybe still now, consider LL. They can bring useful information and no matter how unpleasant some things are for others  "more resolute" like me, to read, it's also a test to our resilience, to our decision making, which is not in the same level for everybody. We should stick to facts on this. For example, imagine 50% of people got crippled with LL: I would cry for a week and would be screwed maybe  forever but still would want to know. And I don't believe even 1% of people come here just to play and try to screw LLers or candidates.
So let's be courageous, as we already are, and accept these posts with objectivity and not frustration. But demanding references, not "heard of" and pure fear mongering for any hidden reason, from lack of money to religious fundamentalisms, moralists, hate sick people, etc.
I think other users tried to say that if he is still wondering if it is the right decision , he is not ready .
Few years ago I thought about this surgery day n night but the idea of it scared me SO MUCH that if someone said "I pay for it , u get Stryde , u want to do it next week?" I would have thought about it ,cried day n night because I would have been aware that I would have rejected that offer but still desiring to be taller .
Sometimes you need time to be ready , it's not lile some users who hoped on because of covid in a matter of weeks .
So ig the point here is...if you are this much anxious about it ...take your time and go for it only when you are sure that when you will wake up after the surgery ,you will know that even if hard..that was the only way you could live this life happy/happier .
If the fear is currently bigger then that ,avoid it for now n if it keeps being that way , just let this surgery go because if done for the wrong reasons ...can't imagine what a disaster this surgery would be .
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BelowTheMean

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I think you don't need LL if your height dysphoria isn't bad enough that those numbers make you hesitant.

So true. The problems that actually kept me from doing surgery were how I was going to pay for it, who would take care of me while I was crippled, and how I was going to put my career on hold. Once those issues were addressed, complications were just an afterthought. I was briefly worried about going under general anesthesia or getting an embolism of some sort, but I was never really concerned about losing a limb or dying from LL. Needing a rebreak would be a costly complication, but I don't think it would be dangerous.

LL is such a personal decision, I don't see how research papers would actually influence someone who truly wanted to do it.
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Stryde Femurs - Debiparshad - Nov 2020
Nail Removal - Downey - Apr 2022
Journal (169cm -> 177cm) http://www.limblengtheningforum.com/index.php?topic=65617

Current Status: Recovered, moving on

billsmafia

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why we need to gatekeep this procedure? I am impacted from a degree of height dysphoria and am in the position to fix that. It's normal to consider any serious complications before making the choice especially since the data points more perspective on this. Why should i need to be have HD to the point of wanting to do it without any consideration of any real consequence to be a legitimate candidate.?
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BelowTheMean

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why we need to gatekeep this procedure? I am impacted from a degree of height dysphoria and am in the position to fix that. It's normal to consider any serious complications before making the choice especially since the data points more perspective on this. Why should i need to be have HD to the point of wanting to do it without any consideration of any real consequence to be a legitimate candidate.?

Because the procedure is purely elective. 99.9%+ short people don't do it because it won't help them. The only people it helps are those who have major height dysphoria. If you don't have major height dysphoria then you really shouldn't do it because any amount of complications is too much to be worth it (even 1%). If you do have major height dysphoria then you are probably willing to accept a 5%, 10%, maybe even a 20-30% complication rate to fix your dysphoria. In that case, you'll be happy doing it with any of the major surgeons in the US using a modern nail because the complication rates aren't going to be that high.
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Stryde Femurs - Debiparshad - Nov 2020
Nail Removal - Downey - Apr 2022
Journal (169cm -> 177cm) http://www.limblengtheningforum.com/index.php?topic=65617

Current Status: Recovered, moving on

thaw1010

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Because the procedure is purely elective. 99.9%+ short people don't do it because it won't help them. The only people it helps are those who have major height dysphoria. If you don't have major height dysphoria then you really shouldn't do it because any amount of complications is too much to be worth it (even 1%). If you do have major height dysphoria then you are probably willing to accept a 5%, 10%, maybe even a 20-30% complication rate to fix your dysphoria. In that case, you'll be happy doing it with any of the major surgeons in the US using a modern nail because the complication rates aren't going to be that high.

100% agree. Just think, would you rather be dysphoric (depending on the extent) all your life or accept some risk and get the procedure done. Chances are if you're really, really worried about a ~5% complication risk, your height dysphoria may not be serious enough to warrant getting it.
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LifeMastery

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So true. The problems that actually kept me from doing surgery were how I was going to pay for it, who would take care of me while I was crippled, and how I was going to put my career on hold. Once those issues were addressed, complications were just an afterthought. I was briefly worried about going under general anesthesia or getting an embolism of some sort, but I was never really concerned about losing a limb or dying from LL. Needing a rebreak would be a costly complication, but I don't think it would be dangerous.

LL is such a personal decision, I don't see how research papers would actually influence someone who truly wanted to do it.

"How can I put career on hold?" - OK reason
"What I get embolism"? - Invalid reason?

hmmmm  What is the big deal with taking a career break?
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ReadRothbard

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It's important to understand that *most* complications aren't major and can be solved rather easily. Actually major, dangerous complications like pulmonary embolism, amputation, or death are incredibly rare (if not almost non-existent) in the hands of a competent surgeon.
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“If you're afraid - don't do it, - if you're doing it - don't be afraid!” ― Genghis Khan

172 cm in the morning (67.8"); 170 cm (67”) at night; Sitting Height: 96 cm (37.8”); Goal: 184.5 cm (6'0.7"); Ultimate Goal: 192 cm (6’3.5) morning height, 190 cm (6’3) “night” height
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Sambollio

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I don't think if you are intimiated by complications of LL, you deserve LL if you don't mind me to say that.
Your being ambivalent between stepping back from LL and running the risks of complications to do LL is already explicitly indicating that you are not a good candidate for LL and you are very likely to regret doing this surgery during the procedures but just my 2 cents if I offended you I'd say sorry.
As for me, I don't care about complications except disabilities and even deaths are a resolution for me to get rid of height dysphoria. Not long time ago I weighed height higher than health and I thought Parkinson and Leukemia were better than being short so why I am writing you off not as a good candidate is already pretty self-explained.

'Once you hesitate on LL, you don't deserve LL'.

Regards and no offenses.

This is absolute nonsense. Nobody deserves or doesn’t deserve LL. It’s something you pay for with your money. I think not being concerned about complications is more of a sign that you aren’t in a mentally healthy enough place to be deciding to get this surgery done. You just sound like you are trying to be profound by saying this stuff, and even quoting yourself. It just comes off as a cringey 14 year old edge-posting after he learned about nihilism.
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HateLAPELoveSTEM

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This is absolute nonsense. Nobody deserves or doesn’t deserve LL. It’s something you pay for with your money. I think not being concerned about complications is more of a sign that you aren’t in a mentally healthy enough place to be deciding to get this surgery done. You just sound like you are trying to be profound by saying this stuff, and even quoting yourself. It just comes off as a cringey 14 year old edge-posting after he learned about nihilism.
Or 'is not a good candidate for LL' or whatever you can look up the dictionary to put into my original statements cuz I am not a native English speaker so I am kinda ignorant of volcabulary but we should not reach to such degree where you think me as a 14 y.o nihilism follower who is attempting to make others delusional of me being profound, all of which are self-conjectured by you should we? Whether I am for real a mentally illness like you said or a follower of a nihilism, I am not 'selecting' who should be passed on doing LL and who should not be, instead, I am just kinda assured since he is worried about complications of LL and intimidated back off this LL, he is not willing to do LL enough. I rest my case. Mr.Sambolio it's your turn to speak in defense of OP.
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