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Author Topic: COMPLICATION RATES: Ask your doctor!  (Read 655 times)

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phd

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COMPLICATION RATES: Ask your doctor!
« on: November 12, 2021, 03:26:24 PM »

Guys, everybody knows about names of various complications but few know about how it will actually affect them in their lives. Also even few know about the probability of getting them. Make sure to ask your doctor about the probabiility of each complication and think twice about moving forward if they are vague and don't answer directly.

Infection requiring additional surgery

If you get a bone infection they will put you on antibiotics for weeks or months. Sometimes through IV. After this, they will change your rods with antibiotic coated rods for the infection to clear. After this you would have to get another surgery to remove that nail. All this may mean that you have to stop your lengthening.

Infection requiring amputation

An uncontrolled infection might require that you amputate your leg. Amputation can be at the hip if you are doing femur lengthening or at the knee if you are doing tibia.

Pulmonary embolism leading to cardiac arrest or death

Blood clots can form in the legs even months after surgery and if they reach the lungs it can lead to cardiac arrest and thus death. Even those who don't die can face long term disability due to cardiac arrest. These can happen even when the patient is ambulating and taking anticoagulants. Some patients who survive are put on anticoagulants for life which add significant restrictions on lifestyle. People on anticoagulants for life are often forced to test their blood for INR and adjust their medications. They also live with severe anxiety of the next episode of embolism.

Some peoples' brains also get affected, causing brain damage. People with brain damage might need a full time caretaker for life.

Fat embolism causing death

Just like pulmonary embolism this can too cause death.

Nerve damage causing chronic pain and disability

Drop foot (where you can't lift your foot up), chronic nerve pain requiring prolonged pain medications are possibilities.

Non union requiring additional surgeries and potentially amputation

Non unions are treated with waiting, reversing the lengthening or bone grafts. If none work for a long amount of time, amputation can become an option.

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A lot of doctors say "these are rare", "never happened to my patients" and so on. But press them for an approximate probability for each of these. For example, Dr. Rozbruch has confirmed that the chance of a bone infection at his center is 1 in 300. Which is reassuring.

If they say the chances of bone infection is 1 in 50, ask them after antibiotic treatment what is the probability that the infection clears? And so on. Always try to understand how complications affect your life. Imagine living through each complication. Otherwise they are just fancy words.

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Masteryourlife

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #1 on: November 12, 2021, 05:08:17 PM »

This is very true and we should discuss more about complications and successful dairies in order too see downsides and upsides  then how ppls dating  life improved after LL .
The thing is tho that infections are related to any surgery ,needed or cosmetic so it's not an LL thing only .
Non-union I think with reversible nails are simply fixed by reversing the nail which will be really really bad after the money and pain you encountered but I don't think that nowadays it's an issue such as before .Right ?

Plus asking your doctor to me makes no sense.
Go to the best ones in the field and that s it .
They might and they usually lie so their stats have no relevance .
Debiparshad claims hundred of cases of CLL and maybe he doesn't even hit 50 in total .
So I would more trust LL veterans and their claims and pick a great surgeon .
The rest it's a mix of hard work and luck .

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phd

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #2 on: November 12, 2021, 05:47:43 PM »

Plus asking your doctor to me makes no sense.
Go to the best ones in the field and that s it .
They might and they usually lie so their stats have no relevance .
Debiparshad claims hundred of cases of CLL and maybe he doesn't even hit 50 in total .
So I would more trust LL veterans and their claims and pick a great surgeon .
The rest it's a mix of hard work and luck .

This is not good logic unless you have decided 100% that you will do this no matter what the consequences are.
It is not logical to do such a rare elective procedure without understanding the quantitative risks involved.

There must be an approx % of risk that each person is willing to take. It's crazy how people do this without even becoming comfortable with this number because they never ask their surgeon!

And you gotta understand that most people don't write on the forum and you may never hear about the bad cases.
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Masteryourlife

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #3 on: November 12, 2021, 07:34:41 PM »

This is not good logic unless you have decided 100% that you will do this no matter what the consequences are.
It is not logical to do such a rare elective procedure without understanding the quantitative risks involved.

There must be an approx % of risk that each person is willing to take. It's crazy how people do this without even becoming comfortable with this number because they never ask their surgeon!

And you gotta understand that most people don't write on the forum and you may never hear about the bad cases.
Your bad attitude towards this gets out when you say "most ppl don't write on the forum and yiu nay never hear about the bad cases " ,and about the good ones ?
Being on both ends its wrong because if you are on this forum it means you struggled a lot from your height.
If you are here casually then you are in the wrong mindset/place .
I don't mean to attack you but I ve been reading this forum way before I became a member ,talking about years , and I am conscious as much as you about risks ,but then what ?
Is that a surprise to you when you approached the forum ?
I am not willing to accept any risk scenario because if I struggle to live at a stature I don't feel comfortable at , how do you think I might be able to be worse ?
I will pick the best surgeon , do a conservative amount and will stretch to the max of my ability .That s it !
Maybe tomorrow we die , and then what ? You don't leave ur house ?
Don't get me wrong I am way far away from taking this lightly , I had endless nights and after 5 years I am still weighting what will be best for me , so no I did not decide yet , but you look like you scared and not willing to accept the risk ( which Honestly makes completly sense) and therefore you want to convince yourself and others .
I hate this surgery with my whole heart , truly ! It's bad on any side you look at , but your logic it's way to negative because apart from ppl who lengthened double the safe limit or picked a bad surgeon , others had good outcomes and the worst one had still acceptable ones .
Not to me tbh , but in general they functioned well in society and were enjoying their height .
I am not to the point to trade 30/40% of athletic ability for this BUT talking about amputation and death when there are more concrete problems to worry about like the pain,the money and most importantly your athletic ability..seems little too much to me .
If you get a filler in thw bridge of your nose it might hit a bloog vessel and you might be blind ... isn't that worst for a 2 m procedure as filler injection ?
Being aware its a thing , looking for a way to escape it its another ,so my suggestion would be read a lot , think a lot and give yourself time.
Its been 5 years for me on thinking  and still not ready mentally yet so don't rush your conclusions on me or others .
Again this is for me a talk not an argument so I hope you will get my point as I think I got yours .
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two

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #4 on: November 12, 2021, 08:08:37 PM »

Im looking for chances of PE since the last few weeks. I think its 2% for knee replacements but we dont know for this procedure. I emailed 2 surgeons and I will reply here if they reply.

And someone else had posted in a different thread that if you don't have a heart issue, then your brain will not get affected by PE. So if you reach the ER in time you should be fine.
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phd

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #5 on: November 12, 2021, 09:04:59 PM »

Your bad attitude towards this gets out when you say "most ppl don't write on the forum and yiu nay never hear about the bad cases " ,and about the good ones ?
Being on both ends its wrong because if you are on this forum it means you struggled a lot from your height.
If you are here casually then you are in the wrong mindset/place .
I don't mean to attack you but I ve been reading this forum way before I became a member ,talking about years , and I am conscious as much as you about risks ,but then what ?
Is that a surprise to you when you approached the forum ?
I am not willing to accept any risk scenario because if I struggle to live at a stature I don't feel comfortable at , how do you think I might be able to be worse ?
I will pick the best surgeon , do a conservative amount and will stretch to the max of my ability .That s it !
Maybe tomorrow we die , and then what ? You don't leave ur house ?
Don't get me wrong I am way far away from taking this lightly , I had endless nights and after 5 years I am still weighting what will be best for me , so no I did not decide yet , but you look like you scared and not willing to accept the risk ( which Honestly makes completly sense) and therefore you want to convince yourself and others .
I hate this surgery with my whole heart , truly ! It's bad on any side you look at , but your logic it's way to negative because apart from ppl who lengthened double the safe limit or picked a bad surgeon , others had good outcomes and the worst one had still acceptable ones .
Not to me tbh , but in general they functioned well in society and were enjoying their height .
I am not to the point to trade 30/40% of athletic ability for this BUT talking about amputation and death when there are more concrete problems to worry about like the pain,the money and most importantly your athletic ability..seems little too much to me .
If you get a filler in thw bridge of your nose it might hit a bloog vessel and you might be blind ... isn't that worst for a 2 m procedure as filler injection ?
Being aware its a thing , looking for a way to escape it its another ,so my suggestion would be read a lot , think a lot and give yourself time.
Its been 5 years for me on thinking  and still not ready mentally yet so don't rush your conclusions on me or others .
Again this is for me a talk not an argument so I hope you will get my point as I think I got yours .

Sure, I get your point. Thanks for explaining. Sorry, didn't mean to attack you or anyone.

I just personally feel more comfortable having some real data to gauge the risks. My risk perspective is on the negative side.
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phd

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #6 on: November 12, 2021, 09:05:59 PM »

@two,

Sure please post here if you find out. Thank you
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Elhemioe

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #7 on: November 13, 2021, 12:40:29 AM »

Damn 1 in 300 is actually kind of really high
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Masteryourlife

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #8 on: November 13, 2021, 01:59:10 AM »

Damn 1 in 300 is actually kind of really high
But I believe they are solved with only antibiotics
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ask.me

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #9 on: November 14, 2021, 06:10:56 AM »

Hey phd,

Thanks for starting this thread and putting together good information. I know we were discussing things in DM and I kind of dropped off b/c I was on vacation. The only thing I want to add is, on further thought, that the actual rate may not be as useful a metric as we initially thought because it has several drawbacks:

* Rates per hospital are opaque towards patient history. Suppose you have a hospital where a higher number of patients are smokers, alcoholics, or obese, then the rate of complications are going to be higher for that particular facility than one that only deals with healthy patients. Or, the hospital mainly deals with trauma patients. The same goes for complications like PE and FE.
* Rates don't really tell the underlying story. For example, things like inactivity might be hard to quantify, but there are direct correlations between them and PE/FE or any sort of embolism.

To really get an idea of what your individual risk, you'd need to ask doctors what the rate of complications for CLL patients are. Because CLL patients are generally otherwise healthy (assuming most of us fit into this category). For example, one study found that 7/10 patients ran into major complications with LL, but they had prior history. To add to that, I think segmenting based on CLL/non-CLL may be difficult. For one, I'm not sure if the sample size is large enough to be representative since it's a relatively new procedure cosmetic-wise and there haven't been a lot of wide studies (maybe 1 with 1000 patients published by Paley).

That's partially why I started looking into risk factors, as opposed to rates.
See: http://www.limblengtheningforum.com/index.php?topic=68402.msg206963#msg206963

Any way, not to discourage looking into rates. I think I read somewhere that the rate of infection/osteolysis from PRECICE (titanium) is near 0% because titanium is very resistant to microbes, where as the stainless steel construction of STRYDE isn't as resistant. That's definitely a useful statistic to know. However, this doesn't preclude you from getting an infection from the operation itself.
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phd

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Re: COMPLICATION RATES: Ask your doctor!
« Reply #10 on: November 14, 2021, 08:31:44 PM »

Hey ask.me,

Yes you are right, complication rates vary a lot depending the center, age of patient, health condition, treatment undertaken etc.

But my intention was to find some estimates. Overestimation is better than underestimation so I thought it's reasonable to use the complication rates from other procedures and use that as a estimate for CLL.

Risk factors are useful, but only once you know you are going to get this done for sure. Then you can look into ways to minimise risks.

Is this the 1000 patient study you meant?
online.boneandjoint.org.uk/doi/full/10.1302/2046-3758.97.BJR-2019-0379.R1

That's a great study!

According to that, with Paley there is a 4% chance of fat embolism and 2% chance of deep vein thrombosis (not necessarily pulmonary embolism). Based on this we should try to find 1 in how many people end up with severe complications like disability and death due to these 2 complications.
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