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[Batu]

Hi all.

I wanted to create this thread as a place where I can collate CLL resources as I edcuate myself on the procedure and ultimately decide whether to undergo the procedure myself.

How I found my way here:

I was not actively searching for LL related content and it's not something I was thinking about doing, however I stumbled upon a youtube video a couple of weeks back () detailing the CLL story of a patient of Dr. Rozbruch. I was pretty shocked when the procedure turned out to be a lot different to how I'd seen it portrayed a few years prior (I wasn't actively searching for it then either but had run into an article somewhere).

After that I watched Dr. Paley's presentation on Precise and the then upcoming Stryde (). When hearing Dr. Paley discuss the statistics on past patients, their post procedure ratings and the possibility of maintaining a high level of functionality and athleticism I decided to dive in further.

I'm been lurking and reading the forum for a little over a week now.

A little about me:

Nationality: British
Age: Early 30s
Height: 166cm

I consider myself reasonably happy in day to day life. I've experienced dissatisfaction with my height and feelings of insecurity around it on and off for a while. I'm far from depressed, though I considered it as an "obstacle" I will always have to deal with and I have found it reducing my quality + enjoyment of life.

I have an above average income and some decent savings so if I do decide to pursue the procedure I'm in a position to do so. From the available options I've seen so far I think Dr. Giotikas is probably the best fit for me, he has a good resume and is in a good location.

My thoughts so far:

The procedure sounds extremely challenging, reading the diaries it also seems like it can be extremely rewarding. Is spending the time, money and effort to undergo the procedure + recovery worth it for an additional 8cm of height?

Loss of functionality is not worth it, though trading a % of your athletiscism could be. I'm not a professional athlete, nor do I compete in amateur athletics. If 85-90% of previous athleticism is possible for the majority of patients, I believe the % increase in quality of life is likely worth it for me.

This will be a slow burning thread as I will be busy during the week. I intend to go through any statistics I can find, put together my own using the diaries we have here on the forum and come up with some type of risk reward analysis.

I will also be putting together a plan for a successful recovery, so far I'm thinking that it will include - stretching and flexibility prior to surgery, diet + supplements during recovery, stretches during recovery. Happy to hear more suggestions.

Cheers!

[deletedaccount]

Welcome! What's your goal height?

[Batu]

Hi Scarface, nice to meet ya.

I'm not sure if I have a goal as of yet. Prior to even knowing that CLL existed in its current form, I thought 5'8" would have been a solid height to have grown to.

In my opinion, at that point you're on the shorter side but not "short" - clothes fit a little better, you're not noticably shorter than the average person, higher than the average female etc. I'm basing this off of my observations of course.

I'm going to try and stay unattached from a specific height and be as unemotional as possible throughout this education process. Really look at it as logically as possible otherwise I risk cherry picking data or having a bias effect the results etc.

It may be hard to do as we all feel pretty strongly about this subject! But I think it's certainly possible.

I can say that so far it looks like Stryde femurs could be a good option and 6.5cm would get me to 5'8" but if I come to the conclusion that pushing to 8cm is worth it in terms of risk/reward then I'd be open to that.

Anything above 5'8" from where I'm starting now would be pretty cool!

[ghkid2019]

I think you're a great candidate for LL. You have your life in order, and you appear to be incredibly humble and able in your life. You set realistic options and goals, and are willing to not have a "do or die" mentality for height, which I think speaks alot about your character. I personally have only started considering LL 3 days ago, when I also discovered the new way they do things, internally with Stryde and all that good stuff.

The people who do well with LL it appears to me, are those that treat stretching and other physical therapy and all that good stuff like a religion. Surprisingly one LL person said that a good portion don't even stretch and are just so worn out and don't put in the work, understandably so however. I think the biggest risk is probably genetics, specifically your bone growth rate. Some people just don't seem to grow much bone, although it appears to be uniform for the vast majority of people. Stryde definitely is a game changer now, weight bearing after 3 weeks post op compared to weight bearing after 4 months post op is actually crazy.   like ballerina foot and muscle degeneration can be heavily mitigated with walking early on during distraction. It's crazy how only 2 years ago, being completely disabled for at least 3 months was the norm for most LLers.

People who successfully do LL and are content are those who set reasonable expectations and simply do it to cure height neurosis. They don't expect to be improved in dating, attraction, nothing. They do it for THEMSELVES, to cure them of a body image disorder.

I read a post once that made an excellent analogy. Treat short stature like a face vitiligo person. The person whose face is discolored is normal, and they don't have any loss of functionality with their face, but the image is still there. Their face is disfigured and looks "ugly". When they go out, the first thing people notice about them, is their face. They definitely have good friends that don't give a   about their vitiligo, but that's not the issue. They are completely fine, they can do everything normally, they are healthy. Is the vitiligo person fine? Yeah. Are they fine about their color patches? Probably hate it. If there was a surgery that could fix it completely, would they do it? Probably. But they are looking at themselves for being different, being not one skin tone, just like short people are not on the eye level of the average person, all these people view themselves as 'different'.

My point is that height is a neurosis. It's an insecurity that can lower someone's mood for almost no reason. They can't rationally cure it mentally. Yes they would be fine without fixing it. Yes they would still be a worthy normal human being even if they were a 5'2 male. Doing LL won't cure anything else but your body image disorder. You are doing it for YOURSELF. Not others. And I see no problem with wanting to fix a body image disorder.  You go from different, to not-different.

If LL wasn't as barbaric as it is currently, breaking legs and stuff, it would be treated like any cosmetic procedure. Boob implants in America, double eyelid surgeries for asians, nose jobs for arabs in UAE, these are examples of cosmetic surgeries that are essentially destigmatized in their respective countries. No one deserves to live a life where THEY themselves don't feel comfortable being themselves. YOLO, so do your best to make sure you are happy in it.

LL is to fix a defect. A body image defect. This is the worse defect, a defect that you can feel everyday and you think about everyday, one where you feel the impacts stemming from YOUR OWN MIND 24/7.  I have no respect for people who LL and were already average in their country pre LL, thinking they'll become a chad or whatnot after. I have respect for people who are somewhat on the lower end of underaverage, and do LL to become average, or just below. They want to be normal height. LL isn't to enhance your life, it's to repair a void and heal an mental injury.

[Kal el]

Ghkid2019 i agree with most of ur things but u werent really right about the country average thing i am indian and here average male height is 166.3 i am 171 nearly 5cm taller then average but for me its not being average with people near me..its about being comfortable with my body image..even though here male average is 166 that is becoz india is a country of 1333 million people and most of them are from villages but i live in city and here average is like 7 to 8cm taller then me..so that is definately something that stretches my mind i dnt like it..thts y m consdering this..and am considering 10 or 11cm total 6or5 femur+5tibia....u r r8 YOLO..so we shld do what we think we will be happy and comfortable with even if it is breaking ur bones..and the problem with me is that i am not just happy wid my height..i always keep complaining about it and i always keep comparing with other people and some of them also told i kinda act weird coz of it..they noticed it..n i just made an excuse and mitigated the situation...plz try to understand my situation..i suffer from height dysphoria and it can come at any height regardless where you live it is a mental condition more then physical dude.

[ghkid2019]

Alamin, no, you're absolutely right and we are on the same page. You're in an urban area, so your average should be based on that urban city average only. You are completely justified to be neurotic about your height. Just compare to your surroundings, like China's average male height is 170cm overall, but in Beijing the capital, the average is 175cm. Definitely compare to your surrounding city and area, not an arbitrary grouping across a massive country. I should've wrote "local average in your country" instead of "country", that's my fault. We definitely agree with each other.

[ghkid2019]

Additionally, I don't have a problem with wanting to be taller EVEN if you are already above average in your local area. I do have a problem with people who get LL simply because they want to be a "Chad" and get in all the girls.

Short people do LL to fix a mental deformity to become "normal", banish their own height dysphoria. LL to simply become 95th percentile in height in their local area to get more girls instead of fixing a true body image issue- that's just incredibly stupid risk-reward ratio.

[deletedaccount]

Even I feel short in India, esp Delhi among people my age despite being a shade above average technically and even you (Alamin) do perhaps justifiably so.
https://en.m.wikipedia.org/wiki/Average_human_height_by_country

Urban Indian average is nearly 5ft 9 and for Punjabis more 5ft 10. I must say however I feel short but not by that much, I pretty much never faced heightism and only occasionally get called short. I just have this dysphoria about it that exists purely within me but I'm aware the heightism would actually be manifest objectively elsewhere, probably leading to feelings of inadequacy.

 Just my two cents, even wanting to be a "chad" isn't bad, when you can get the benefits and unconscious respect of a tall stature/appearance and have enough finances and patience then why not seek out to be the best version of yourself? Admittedly it actually is a bit odd for me to hear 5ft 10ers wanting this procedure but who are we to say. Beyond 6ft though it gets really ridiculous and have pretty much no additional benefits and the risk to reward ratio plummets very hard. Height dysphoria is still mental though regardless of how tall you are as Paley once said.

[ghkid2019]

I guess you can do what you want, but there's some truly crazy people like Meck who is lengthening nonstop and now I don't think he will be able to walk for the rest of his life. These people have a fantasy to be a  tall Chad and won't stop until they become it or close to it, at the cost of their limbs considering that they start at like 20cm before. Other examples, Apotheosis/SysOp and Crazy+6. These people are truly addicted in not just filling a void of height neurosis, but they are probably suffering from height psychosis, and are addicted to becoming a fantasy version of a tall attractive person. There is no sense of realism and rationalism in them, they ignore doctor's orders and end up disabled permanently, and any non-psychotic person would've stopped 10cm earlier than them. These people are psychos, not just normal neurotic people who want to do LL to cure height neurosis.

[ghkid2019]

When I see posts like "I'm 180cm, I WIN! YOU ALL DIDNT BELIEVE I COULD DO IT" while their pictures show a 200 degree ballerina foot with no possibility of PT fixing it because they can't even stand, it's obvious they are suffering from height psychosis, not height neurosis. They are fked for life. Psychopaths.

There's a reason why most competent doctors have psychological evaluations before they do the surgeries, even if it's just the doctor and not a psychologist. People are fking crazy.

[Polvorón]

Please, don't say how we must feel about or bodies.

I don't like my height just because I don't like it. This is not a mental disorder, is simply that I don't like it, so please, deal with it.

Mental disorder is saying other people how they have to feel. If you like your body height, congratulations, but your case is not my case, so If I undergo CLL, don't call me "mental disorder", so please stop trolling us.

I don't want to do this for getting more girls, I want it because I want to be like other people that I know, I want to have a body like them, not like mine. If you don't understand that, OK, but please, don't call it mental disorder, because it is only how I feel.

[deletedaccount]

Yeah that's absolutely right, safety > height always. We need to have a rational goal and eventually somewhere acceptance does have to come into play because most of us aren't and can't be 6'4" so just being grateful for the availability of the extra boost while minding safety and then just acceptance is the right move. Seeking unrealistic expectations will just ruin your mental and physical state and is very counter productive. If I was 5'2" I'd probably be content at reaching my current height, it's more seeking a change of perspective and overriding height disadvantages as much as possible.

[ghkid2019]

@Polvoron You have height neurosis, it's a mental disorder but that literally doesn't imply negativity or extremity either. It's not a big deal to have a mental disorder.

Almost everyone suffers or has suffered from some degree of depression, a clinical mental disorder. That doesn't make you less of a person, definitely not.

Polvoron if you actually read the posts in this thread that I made, you would know I am in full support of you, and others. This is a neurosis, it's not a big full-blown mental disorder, but it is one. Doesn't make you crazy or anything, some people do have much bigger issues but you are not one of them. You are neurotic. Literally 99% of people are neurotic about something.

This is just semantics mostly, you know I'm definitely not trashing you or even remotely implying you're actually "mentally crazy", so if it makes you happier that I use the term "insecurity" instead of mental disorder, then I will do so and not refer this as a mental disorder. My apologies.

[deletedaccount]

A mental disorder, also called a mental illness[2] or psychiatric disorder, is a behavioral or mental pattern that causes significant distress or impairment of personal functioning.[3] Such features may be persistent, relapsing and remitting, or occur as a single episode. Many disorders have been described, with signs and symptoms that vary widely between specific disorders.[4][5] Such disorders may be diagnosed by a mental health professional.

Doesn't fit height neurosis? Euphemising it is a bit pointless, anything problematic and deviating from "the norm" is called a disorder although we should keep in mind  that we can't just consider the norm since the possibilities are excessively too wide.

You're 5ft 8, not too short, most at your height would be fine, yet you speak of "not being happy" about it and going such extreme measures to change it, that clearly means height neurosis and proves that it is some sort of distressing mental pattern. Hence obviously height neurosis is a mental illness.

[Batu]

Hey guys. Thanks for all the messages in this thread! I see you have a little debate going on lol. Feel free to keep it going here if you like though you may be better starting a new thread for this discussion, that way both your debate and any information I post here aren’t getting in the way of each other.

I decided to start researching stretching/exercising first. Flexibility, health and fitness is something which can take time to develop so it seems like the logical starting point.

My main takeaways thus far:

It looks like many of the doctors are sceptical on the benefits of stretching prior to surgery, though the PT’s seem to be optimistic on how it helps recovery.

Dr. Paley’s FAQ includes a few exercises focusing on IT band, quad + hamstring stretching. Therefore I’ll be mixing up various exercises on youtube focusing on overall leg flexibility and specific exercises for these areas.

Overly developed muscles could be a hindrance when it comes to soft tissue lengthening.

I’ve previously kept myself in reasonable shape, solid diet, regular exercise, no smoking, limited alcohol consumption and I have above average natural flexibility. Though how everything plays out in surgery and recovery seems a little random.

I find myself talking like I’m already getting the surgery when in reality I’m completely undecided, but for pre surgery prep it almost makes sense to take that approach.

It’s interesting going through the threads on this forum and finding so many people who share similar experiences and emotions regarding their height. It feels a little like a brotherhood on here.

What I’m going to be focusing on next:

Fat embolism and other complications.

I found a discussion on a thread that stated the chances of developing fat embolism is around 2% and the chance of death from fat embolism is 20%, meaning the total chance of death from fat embolism during the procedure is 0.4%.

From previous research I’d found the chance of death if you get fat embolism is 10% which would make it 0.2% overall. I’ve also read that low body fat % can decrease this – I’m going to look into this further and find as much data as possible and try come out with the most accurate result possible.

It seems some people here accept the additional obstacles in the way of the vertically challenged, I am one of those people. We have to work harder to compete. In light of that I was already going from “keeping myself in reasonable shape” to getting in excellent shape.

I’m currently in the middle of a cut to a low body fat %, flat stomach and somewhat visible abs already achieved. I was intending to start a slow lean bulk from this point, though the Covid-19 outbreak is extending my cut due to no gym access. I still intend to start that ASAP though I will likely focus on higher reps on legs days to improve stamina rather than focusing on leg hypertrophy (though additional research could prove me wrong this seems like the best thing for CLL recovery), I’m also going to keep my body fat % as low possible during the bulk.

[ghkid2019]

Paley doesn't believe in stretching pre-surgery, but that's referring to short term (a month pre-op). If you stretch actively for a year or even your whole life, you will undoubtedly reap the rewards for being a more flexible person in general. Physical Therapy is essentially mandatory for recovery though! Better PT = better recovery, it's the biggest factor of your recovery.

Fat embolism has occured on 2 patients for Paley, I believe. They were not put into the ICU but just given oxygen and they recovered.

There was a fat embolism death for Guthrie, the guy didn't have someone watching over him and he died alone after calling his father. It was like a week after his operation. This is why many people often consider a 24/7 aide in their hotel room post-op for like 2 weeks or something, just making sure they can watch over the patient in case anything happens.

I'm sure you know this but don't cut WHILE LL'ing, you gotta eat alot. Cutting before op, no idea, need to research more

[Polvorón]

A mental disorder, also called a mental illness[2] or psychiatric disorder, is a behavioral or mental pattern that causes significant distress or impairment of personal functioning.[3] Such features may be persistent, relapsing and remitting, or occur as a single episode. Many disorders have been described, with signs and symptoms that vary widely between specific disorders.[4][5] Such disorders may be diagnosed by a mental health professional.

Doesn't fit height neurosis? Euphemising it is a bit pointless, anything problematic and deviating from "the norm" is called a disorder although we should keep in mind  that we can't just consider the norm since the possibilities are excessively too wide.

You're 5ft 8, not too short, most at your height would be fine, yet you speak of "not being happy" about it and going such extreme measures to change it, that clearly means height neurosis and proves that it is some sort of distressing mental pattern. Hence obviously height neurosis is a mental illness.

@Polvoron You have height neurosis, it's a mental disorder but that literally doesn't imply negativity or extremity either. It's not a big deal to have a mental disorder.

Almost everyone suffers or has suffered from some degree of depression, a clinical mental disorder. That doesn't make you less of a person, definitely not.

Polvoron if you actually read the posts in this thread that I made, you would know I am in full support of you, and others. This is a neurosis, it's not a big full-blown mental disorder, but it is one. Doesn't make you crazy or anything, some people do have much bigger issues but you are not one of them. You are neurotic. Literally 99% of people are neurotic about something.

This is just semantics mostly, you know I'm definitely not trashing you or even remotely implying you're actually "mentally crazy", so if it makes you happier that I use the term "insecurity" instead of mental disorder, then I will do so and not refer this as a mental disorder. My apologies.

Please, don't talk about my mind if you don't know me. Having my own point of view about my body, about my life and about society doesn't mean a mental disorder.

I want to have a body like other friends that I have. This is a problem for you? It's my body, my life, not yours, so please, don't talk about my mental health, because you know almost nothing about me.

I don't care about how do you see 5'8'', I care about that I DON'T LIKE IT, my taste matters, your taste not, because It is my body, my life, my money... not yours, so please, don't call "mental disorder", accept that not everyone have to be happy with the body that they get at birth.

You are not living in my body, don't tell me about how I have to feel.

[ghkid2019]

There's an obvious language barrier here. This is arguing semantics. You don't understand what either of us are saying. We support you 100%. Nothing wrong with wanting to change something you dislike about yourself. Sadly that's the definition of a neurosis, regardless of how you feel. Facts don't care about your feelings -Ben Shapiro (jk haha)



Anyways, done arguing. There's a language barrier here, don't think English is your first language. If it is then there's an IQ gap here no offense.

Again, there is nothing wrong with wanting to change your height. There's nothing wrong with disliking your own body. But that's literally feeling unhappy about your own body.

Unhappy = dysphoria

Aka body dysmorphia disorder. It's a definition. That's all.

[Kal el]

Hey ghkid2019 do u think an height to inseam ratio of 49.86%(inseam=35.5inches) at 181.5cm height will be okay or will it look too weird..for an idea check out thai american singer nickhun..he has nearly the same stats with 180cm height tough..plz reply ty

[deletedaccount]

Should be fine.

[readyprecisestryde]

I was told during my consultation at Paley Institute not a good idea to lose weight before the surgery because usually people drop a lot weight after the surgery and have a hard time to gain the weight back. Dr. Paley assured me not to worry about the complications and he has solutions if it does happen. ......... At the same time, building a habit of doing daily stretching several months before the surgery makes it easier to keep up with it after the surgery.

[FormerKidd]

Paley doesn't believe in stretching pre-surgery, but that's referring to short term (a month pre-op). If you stretch actively for a year or even your whole life, you will undoubtedly reap the rewards for being a more flexible person in general. Physical Therapy is essentially mandatory for recovery though! Better PT = better recovery, it's the biggest factor of your recovery.

Dr. Paley may not, but pretty much everyone else in his office does.  As a former patient at the Institute, let me strongly advise that the more stretching you can get in beforehand, the better.

I'm sure you know this but don't cut WHILE LL'ing, you gotta eat alot. Cutting before op, no idea, need to research more

This is true - your metabolism shoots through the roof.  As for weight loss, it depends on your weight and which nail you're using.  One of the other doctors at the Institute (not Dr. Paley) suggested to me that losing 10-20 pounds in advance might be helpful.

[ghkid2019]

Dr. Paley may not, but pretty much everyone else in his office does.  As a former patient at the Institute, let me strongly advise that the more stretching you can get in beforehand, the better.

This is true - your metabolism shoots through the roof.  As for weight loss, it depends on your weight and which nail you're using.  One of the other doctors at the Institute (not Dr. Paley) suggested to me that losing 10-20 pounds in advance might be helpful.

Hey FormerKidd, I've seen you around this forum alot but never really saw a diary from you, you did 6.5cm on femurs and went back for tibias as well right? Were they both stryde? How's your recovery as of today? How much months post op? Are you overall think it's worth it and satisfied? How tall are you even?

Sorry for the interrogation

[Batu]

Cheers for the message. I took a break from the forum yesterday, I think it's important to not get fixated and keep a clear mind.

Fat embolism has occured on 2 patients for Paley, I believe. They were not put into the ICU but just given oxygen and they recovered.

There was a fat embolism death for Guthrie, the guy didn't have someone watching over him and he died alone after calling his father. It was like a week after his operation. This is why many people often consider a 24/7 aide in their hotel room post-op for like 2 weeks or something, just making sure they can watch over the patient in case anything happens.

This is one of the bigger road blocks for me, I really need to understand the risks here. Fat embolism to some degree supposedly happens in the majority of large bone fracture patients, it just doesn't often end up turning into Fat Embolism Syndrome.

Paley had 2 out of 51 based on his presentation though not sure of the numbers since. Also not sure if this sample size is big enough, for example it could be that the risks of FES is 2 in 500 but in this case Paley had 2 early instances or vice versa.

I read that the risks of FE complication also depends on the length of time until the bone is treated, which in terms of CLL would be quite quick I'd imagine. It could be that this combined with their monitoring and preparation for dealing with a complication makes the chances of something bad happening very low.

I'm likely going to be undecided on this issue until I have a consultation but I will continue to do research.

I'm sure you know this but don't cut WHILE LL'ing, you gotta eat alot. Cutting before op, no idea, need to research more

Yep I intend to be very well prepared if I do end up getting the procedure. I'll likely head to the location a week early and keep an airbnb the entire time, even if I stay in the hospital for a week or two after.

It will end up costing more but it won't be much in relation to the total cost and I think if you have it available it's worth spending it to ensure you really hit the ground running. I'd stock the apartment up with food, protein shakes + bars, supplements prior to the surgery.

I'm cutting now but I'm at the end of a cut after a bulk where I added too much fat and then did some traveling and therefore added more fat I intend to add muscle and gain weight over the next few months regardless but still intend on keeping body fat low.

Stretching routine started, which is nice to do regardless tbh. I also measured my wingspan and sitting height which was somewhat awkward to do, though I tend to agree with the posts that say it isn't that big of a deal if you lengthen to a sensible amount.

[ghkid2019]

Apparently I mistakened the Guthrie death guy- he died of pulmonary embolism- not fat embolism.

Pulmonary embolism can be followed by Deep Vein Thrombosis, but for Paley that has never happened before. DVT has occured for paley, but never has escalated to Pulmonary embolism.

Also good to note that asians have less chance of Pulmonary embolism and DVT than other races. https://www.ncbi.nlm.nih.gov/pubmed/10831950

[Kal el]

Hey can i do femur LON 5 or 6cm then after 7 months pst OP again do tibia for 4 or 5cm..plz reply..i wanna know if 6 or 7 months is enough time between the two surgeries..coz i wanna finish all my procedures within a period of 1.5 to 2 years..and the nail removal 1 year after this period..plz do reply ty guys.

[Batu]

So my research into FES continues. I am cherry picking data that I find relevant, everyone should do their own research on this topic imo but here is some stuff you may find useful.

Here is some general information I found on healthline.com:

Signs of FES generally appear 12 to 72 hours after trauma.

- Risk factors:
    being male
    being between the ages of 20 and 30
    having a closed fracture (the broken bone doesn’t penetrate the skin)
    having multiple fractures, especially in the lower extremities and pelvis

Treatment for FES generally revolves around supportive care. You’ll be admitted to the hospital, most likely to the intensive care unit. Your oxygen levels will be monitored and you may be given oxygen, if needed.

Once you’ve recovered from fat emboli or fat embolism syndrome, there usually are no long-term complications.

If you think you’ve broken a long bone in the body, limit your movement. The more immobile you are, the more you reduce your chance of developing FES.

If surgery is needed to fix the broken bone, the earlier it’s performed, the better. Surgery started within 24 hours of the break carries less of a risk of FES than delayed setting of the bone.

If you have a broken long bone or you’re having orthopedic surgery, speak to your doctor about the use of prophylactic steroids. Some research shows them to be effective in staving off FES.

And here is some more detailed information from nih.gov:

Fat globules have been detected in the blood of 67% of orthopedic trauma patients in one study.[5] This number increased to 95% when the blood is sampled in close proximity to the fracture site.[6]

In his initial study defining the clinical criteria for FES, Gurd reported the incidence of FES as 19% in a group of trauma patients.[9] As early operative fixation of long-bone fractures has become standard care, modern studies report an incidence of FES between 0.9% and 11%.[10–12]

The use of internal fixation devices for treatment of long bone fractures was accompanied by a reduction in the incidence of FES. [41]

Several retrospective studies have also reported decreased incidence of FES with use of internal fixation devices.[11,42–47] Johnson et al. further demonstrated that patients undergoing fixation urgently had an incidence of ARDS of 7% compared to an incidence of ARDS of 39% in patients that had fixation delayed by more than 24 h.[43]

While reaming may increase intramedullary pressure, reaming has not been shown to increase the incidence of FES.
A randomized trial comparing pulmonary complications in patients undergoing fixation with reamed nailing and unreamed nailing found no difference between the two groups.[49]

With supportive care and early fixation FES has a favorable outcome.
Mortality rates from FES in modern studies utilizing supportive measures and early operative fixation report the mortality from FES between 7% and 10%.[9,10]


It’s pretty hard to work out the risks with FE. There doesn’t seem to be a lot of solid data out there and there are a lot of factors to consider.

Taking the information above and trying to get an idea of the higher and lower chances (I’m using 67% of FE for both as this seems like it is more accurate and early operative fixation as this would be the case) -

High chance of FES: 737 / 10000 = 7.37%
High chance of death: 7370 / 1000000 = 0.737%

Low chance of FES: 60.3/10000 = 0.603%
Low chance of death: 422.1 / 1000000 = 0.0422%

Realistically I don’t think any of this is accurate. With the data on FES being pretty shaky anyway and the unique situation of CLL surgery... who knows. It could be much much lower and it could be higher.

Truth be told we’re all taking risks every day, sometimes we don’t even realize it. Often not to the same extent as CLL but they’re risks non the less.

Whenever you drive a car, whenever you go X speed. We know if we dropped the speed limits to 10 mph there would be almost 0 deaths but we are willing to take the risks and accept the deaths because it’s worth it.

When you pick one degree over the other or one career path over the other.

Some may think those playing the stock market are speculating, but everyone is speculating. When you put the majority of your money into a house you’re speculating on the housing market, if you put your money into a pension you’re often outsourcing your speculation.

Whether the CLL risk is one that I think is worth it, it still don’t know.

Next I want to look into other complications and try learn as much as possible about the post CLL recovery. For Stryde it looks pretty good.

I’d be willing to give up some athleticism as mentioned in my OP but I want to know how it effects daily life. Is standing up from a chair awkward, is it possible to sit with your legs crossed or is this something you’re no longer able to do?

How is it when you’re sat on the toilet??

Making daily life awkward is a much bigger issue than giving up some athleticism. They kind of go hand in hand but a bit of speed and agility is not so bad, it being awkward every time you sit down and stand up is.

[Batu]

It's hard to find statistics on the other complications. Going through the FAQ's and the websites of the top doctors it does appear that the risks overall are pretty low and can be prevented if caught early and fixed if not.

While reading Dr. Paley's FAQ I found this:

"I have diagnosed fat embolism 5 times since 2011 when we started with the Precice nails" and also earlier "I have the world's largest experience with the Precice nails (more than 900 cases)".

This actually puts the rate at around 0.5%, not the 4% that Dr. Paley mentions in his presentation. This is not an official study however and I'm not sure if he was paying extra attention during the study to reach the 4% conclusion.

He also states "This is a complication that is very rare and which can be prevented by venting the bone during the reaming
(drilling) of the medullary canal of the bone. The way I vent the canal is to drill holes at the planned level of
the osteotomy prior to the reaming process. As the pressure builds up in the canal, the reamings squirt out
of the holes, preventing fat embolism."

This is something I would think that a prospective patient should ask about during a consultation. I'm feeling much less concerned about FE + FES now. I also read the Jezebel article on the patient of Guthrie's that unfortunately died due to a pulmonary embolism. It seems that he was feeling symptoms a while before it got serious and then even after contacting his father and being advised to go to the emergency room may have delayed getting help sooner. Very unfortunate and seemingly preventable.


I don't mean to play down the risks though, you can read about them first hand here on the forum. Re-watching Dr. Paley's presentation, going through his and Mahboubian's website, reading some of the other diaries on the forum - I'm really starting to think the potential benefits of this are worth it.

I think it really has to be done using the newest technology, with a doctor who has a strong background + experience and also with a doctor who appears to have high moral standards and integrity. Unfortunately it does seem that even some of the qualified doctors are a bit unscrupulous.

[ghkid2019]

yeah Batu, you probably don't have to worry about Fat embolism even if it were as likely as 5% (its not). Just make sure you exit the hospital only when you are feeling alright and hire a 24/7 helper for at least the first 10 days, it's much worth the costs because this is probably the ONLY part of the entire LL experience where you actually have a chance to die.

just 10 days of a 24/7 helper, that money is worth nothing compared to amount of the risk mitigation you get.

LL downsides are no longer about risk of death, it's more about losing time, pain of rehab, poor recovery.

I mean the risk is still there, but if you have someone like Paley and Mahoubian and Rozbruch who have done quite literally hundreds combined of LL surgeries for decades and trained under one another and have had literally zero deaths, deaths are more so an issue of not the surgery itself but the patient's poor choice of doctor in a third world country.

Even out of those stories of going to shady doctors in poor countries, the vast majority of patients do not die, other complications happen but death isn't one of them. If death is this rare even with  ty doctors, imagine how safe it would be with an orthopedic pioneer with decades of experience in America.

Fat embolism is rare enough by itself, and even if it did happen it can be alleviated with no problems with just oxygen for a day.

Dying at any time in LL is pretty much a rounding error if you go with a trusted American orthopedic surgeon like Paley or Rozbruch.

[Batu]

LL downsides are no longer about risk of death, it's more about losing time, pain of rehab, poor recovery.

Yea that does look to be the case and with the proper preparation, dedication during + after you can start to stack the deck in your favor. With a little bit of luck on top, from what I'm seeing, it can go pretty smoothly with an amazing outcome.

A lot of people on here seem real lucky in life anyway, which is important to keep in mind imo, but the fact that in modern times you can improve your life to this degree (if you're also lucky enough to have the funds) is astounding.

I'm going to continue to consume a lot of LL info, probably reading a lot of diaries and then in 6 weeks if it looks like the current health crisis is starting to simmer down I will be looking to do some consultations. Depending on how I'm feeling after that, I'll be either booking the surgery or not.

[AllAboutPerspective]

This is super useful information for those looking to get LL. Did you decide to go through with it in the end?