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!
Educating myself on CLL and deciding whether to undergo the surgery.
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!
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.
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.
Quote from: ghkid2019 on April 13, 2020, 04:05:42 PMFat 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.
Quote from: ghkid2019 on April 13, 2020, 04:05:42 PMI'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.
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.
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.
Quote from: ghkid2019 on April 19, 2020, 09:44:20 AMLL 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.
Quote from: ghkid2019 on April 19, 2020, 09:44:20 AMLL 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.
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