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[Android]

Thanks for the info Microbe. Really helpful stuff, especially since we have plenty of people in the community lengthening with internal nails right now.

Here's another risk of non-removal of Precice nails according to Dr. Paley, emphasis mine:

All of the nails should be removed. Removal timing is not critical but is most often done one or two years after the original surgery. The reason to remove the nails is that they are made of titanium and since they have moving parts they generate metal ions over the course of many years. While they are inert and there is no urgency to remove them, it is recommended to remove them one or two years after insertion. The PRECICE also has a rare earth magnet inside. This is sealed from the body inside a waterproof chamber. It is possible that after years this seal could leak and the rare earth magnet would be exposed to body fluids. As such, it is preferable to remove the device before this could happen.

And hey, maybe your a little bit of your pain might go away according to this paper, emphasis mine:

The most common complication of intramedullary nailing is anterior knee pain; but other rare complications such as nonunion, malunion, joint stiffness, and infection were also reported.

The outcome of implant removal also depends on both the implant type and its anatomic location, and around 70% of patients had an improvement in their symptoms after implant removal.

[Microbe]

All of the nails should be removed. Removal timing is not critical but is most often done one or two years after the original surgery. The reason to remove the nails is that they are made of titanium and since they have moving parts they generate metal ions over the course of many years. While they are inert and there is no urgency to remove them, it is recommended to remove them one or two years after insertion. The PRECICE also has a rare earth magnet inside. This is sealed from the body inside a waterproof chamber. It is possible that after years this seal could leak and the rare earth magnet would be exposed to body fluids. As such, it is preferable to remove the device before this could happen.

Yes I'll bring that up with the doctor dagain

http://paleyinstitute.org/centers-of-excellence/stature-lengthening/the-paley-method/nail-removal/
Nevertheless, 12% complained of new onset anterior knee pain [7]. In series of 71 patients, Karladani et al. reported that nail removal has limited pain-decreasing effect [28].
This is what scares me, especially when the study states that titanium nails inherently have more risks associated compared to stainless steel

[myloginacct]

-Had a appointment with the doctor
-No signs of premature arthritis, however mechanical alignment of femur/tibia suggest future risk of arthritis, common consequence of CLL
-Slight bow legs of tibia, solution would be the use of external fixation which I'm absolutely hesitant. I may look into this in the future.
-Doctor believes pain is not likely cause of nail and nail removal will no resolve the pain
-Most likely cause of pain is due to loss of muscle mass, especially quads, which has caused "imbalance" and loss of endurance
-Will see a physio therapist tomorrow to prescribe strengthening exercises and see whether the pain improves
-Doctor does not really see the necessity in removing PRECICE2 rods since the x-rays show no issue with the nail itself. he believes there are two sides of nail removal. The advantage of removing the nail is that in case of future accidental trauma, there is a risk of breaking the bone below the nail and in that case nail removal would be quite a challenge. Secondly, in the future if there is a need of removing the nail, with the current pace of evolving technologies, it maybe hard to obtain outdated instruments to remove the old rods. I asked about the motorised nail and he said they look all fine and doesn't see any issue in staying there. He also pointed out the disadvantage of removing the nail, which is that it's an invasive surgery and there is always an risk of additional trauma.
-So doctor has currently prescribed intensive physio, along with orthotics since my left leg is 1.5 cm shorter. I was surprised since I thought it was around 1cm shorter. This may also be the reason for my left leg being more painful.
-Overall I'm happy that it's currently not premature arthritis, however the shift in the mechanical axis with the load going through the medial section of the knee joint is a bit of a concern. I will start physio and orthotics tomorrow and hopefully that will decrease or even better get rid of my pain. If that does not resolve the pain then the doctor will do another re-evaluation and possible nail removal.
-Doctor has confirmed I lengthened around 6.5 cm

Hi again, Microbe. I hope the physio and orthotics help, hopefully get rid of your pain!

Can you talk a bit more about that pain? In a scale of 1 to 10, how bad is the pain? Is it worse during certain times of the day, or in certain positions? Is it constant, ever-present, only varying in the scale of 1~10? And maybe in a more complex question: how bad is it on you, psychologically?

By the way, I believe premature arthritis is one of the greatest real consequences of CLL, but it doesn't need to necessarily happen. I'm hoping all ends the best in your case.

Thanks again, Microbe.

[Microbe]

Hi again, Microbe. I hope the physio and orthotics help, hopefully get rid of your pain!

Can you talk a bit more about that pain? In a scale of 1 to 10, how bad is the pain? Is it worse during certain times of the day, or in certain positions? Is it constant, ever-present, only varying in the scale of 1~10? And maybe in a more complex question: how bad is it on you, psychologically?

By the way, I believe premature arthritis is one of the greatest real consequences of CLL, but it doesn't need to necessarily happen. I'm hoping all ends the best in your case.

Thanks again, Microbe.

Thanks loginacc for your well wishes!
The pain has increased in frequency over the years and is mainly associated with long distance walking, prolonged standing or even resistance training at the gym. It would start off with stiff feeling on both knees and then it would gradually progess to being painful on my left thigh. I cannot exactly pinpoint where the pain originates but it could be felt on the left buttocks, to the nail insertion site at the hips, throughout my thigh, knees and down towards the lower leg and up to my ankle. Pain could range from just annoying 3/10 to an intense 8/10 (point when I start limping). This pain is however not present when I am sedentary and relaxed all day. I must also point out that there are some days, when I'm fortunate, I don't get pain at all, despite the long distance walking, prolonged standing and gym workout all together, but this is quite rare. Psychological impact depends on the severity of the pain, with low pain involving less negative mental state to severe mental breakdown with intense pain. I won't lie but pre-op I didn't really mind about the higher risk of getting arthritis due to CLL and had just accepted it to trade it with the extra few cm. However now I feel rather devasted seeing the medial side of my knees getting unequal load with the high chance of getting arthritis.
I would also like to add that the doctor took an xray of my spine and has ruled out possibility of herniated disk, which has symptoms similar to what I'm experiencing.

[myloginacct]

Thanks loginacc for your well wishes!
The pain has increased in frequency over the years and is mainly associated with long distance walking, prolonged standing or even resistance training at the gym. It would start off with stiff feeling on both knees and then it would gradually progess to being painful on my left thigh. I cannot exactly pinpoint where the pain originates but it could be felt on the left buttocks, to the nail insertion site at the hips, throughout my thigh, knees and down towards the lower leg and up to my ankle. Pain could range from just annoying 3/10 to an intense 8/10 (point when I start limping). This pain is however not present when I am sedentary and relaxed all day. I must also point out that there are some days, when I'm fortunate, I don't get pain at all, despite the long distance walking, prolonged standing and gym workout all together, but this is quite rare. Psychological impact depends on the severity of the pain, with low pain involving less negative mental state to severe mental breakdown with intense pain. I won't lie but pre-op I didn't really mind about the higher risk of getting arthritis due to CLL and had just accepted it to trade it with the extra few cm. However now I feel rather devasted seeing the medial side of my knees getting unequal load with the high chance of getting arthritis.
I would also like to add that the doctor took an xray of my spine and has ruled out possibility of herniated disk, which has symptoms similar to what I'm experiencing.

Thanks for the detailed reply.

I can see how it can lead to breakdowns if it goes as high as 8/10. But hang in there, it can only get better from the point you start doing everything that you can against it. Regenerative medicine will only get better with time too.

Is the doctor you're seeing now the same one who performed LL on you? If not, have you thought about maybe scheduling an appointment with a doctor who's also experienced in CLL, like Rozbruch, Birkholtz, Catagni or Paley, and explaining all of your issues? Maybe they could help you a little better. EDIT: Even if your current doctor performs CLL and is one of the good ones, maybe getting more opinions won't hurt, if they're not out of your budget. Well, in my current, ignorant view as someone who is yet to do his own CLL, anyway.

[bigdreams55]

-Had a appointment with the doctor
-No signs of premature arthritis, however mechanical alignment of femur/tibia suggest future risk of arthritis, common consequence of CLL
-Slight bow legs of tibia, solution would be the use of external fixation which I'm absolutely hesitant. I may look into this in the future.
-Doctor believes pain is not likely cause of nail and nail removal will no resolve the pain
-Most likely cause of pain is due to loss of muscle mass, especially quads, which has caused "imbalance" and loss of endurance
-Will see a physio therapist tomorrow to prescribe strengthening exercises and see whether the pain improves
-Doctor does not really see the necessity in removing PRECICE2 rods since the x-rays show no issue with the nail itself. he believes there are two sides of nail removal. The advantage of removing the nail is that in case of future accidental trauma, there is a risk of breaking the bone below the nail and in that case nail removal would be quite a challenge. Secondly, in the future if there is a need of removing the nail, with the current pace of evolving technologies, it maybe hard to obtain outdated instruments to remove the old rods. I asked about the motorised nail and he said they look all fine and doesn't see any issue in staying there. He also pointed out the disadvantage of removing the nail, which is that it's an invasive surgery and there is always an risk of additional trauma.
-So doctor has currently prescribed intensive physio, along with orthotics since my left leg is 1.5 cm shorter. I was surprised since I thought it was around 1cm shorter. This may also be the reason for my left leg being more painful.
-Overall I'm happy that it's currently not premature arthritis, however the shift in the mechanical axis with the load going through the medial section of the knee joint is a bit of a concern. I will start physio and orthotics tomorrow and hopefully that will decrease or even better get rid of my pain. If that does not resolve the pain then the doctor will do another re-evaluation and possible nail removal.
-Doctor has confirmed I lengthened around 6.5 cm

Hey Microbe,

As someone who is currently consolidating after 6+ cm of lengthening, I find your case a bit concerning but insightful.

You mention your left leg was 1.5 cm shorter, how did this occur? Is one tib/fib shorter than the other or a result of your lengthening? I feel like your doctor should have corrected this during your lengthening.

[Microbe]

Hey Microbe,

As someone who is currently consolidating after 6+ cm of lengthening, I find your case a bit concerning but insightful.

You mention your left leg was 1.5 cm shorter, how did this occur? Is one tib/fib shorter than the other or a result of your lengthening? I feel like your doctor should have corrected this during your lengthening.

Hello Bigdream
Yes it was brought up during my initial consultation that my left tibia is 1cm shorter. At that point in time, I was thinking of undergoing tibial LL too and thus the doctor and I both agreed to get that sorted out during my tibial LL. As for that 0.5cm femur discrepancy, I do not know how that happened since the x-rays were showing similar length. Anyway, I'm not too concerned with this since I'll correct this with insoles for my left leg. I honestly cannot tell the difference when I walk with the discrepancy.

[bigdreams55]

Hello Bigdream
Yes it was brought up during my initial consultation that my left tibia is 1cm shorter. At that point in time, I was thinking of undergoing tibial LL too and thus the doctor and I both agreed to get that sorted out during my tibial LL. As for that 0.5cm femur discrepancy, I do not know how that happened since the x-rays were showing similar length. Anyway, I'm not too concerned with this since I'll correct this with insoles for my left leg. I honestly cannot tell the difference when I walk with the discrepancy.

I've heard that 0.0-0.5 cm discrepancy between legs is common and xray measurements are estimates that can be off by +/- 0.3 cm. Like you said, 1.5 cm isn't a massive difference, so I really hope the insole and PT help resolve your pain issue!

My left leg is my weaker leg too and when i walk with the walker or crutches (I haven't been cleared to fully weightbear yet) I have a little pain in my left leg and hip but its not too bad. I'm just hoping it resolve itself with time and more walking and doesn't get worse.

[Microbe]

I've heard that 0.0-0.5 cm discrepancy between legs is common and xray measurements are estimates that can be off by +/- 0.3 cm. Like you said, 1.5 cm isn't a massive difference, so I really hope the insole and PT help resolve your pain issue!

My left leg is my weaker leg too and when i walk with the walker or crutches (I haven't been cleared to fully weightbear yet) I have a little pain in my left leg and hip but its not too bad. I'm just hoping it resolve itself with time and more walking and doesn't get worse.

Several doctors have given an accepted range from 0 - 1.5cm as the maximum borderline for discrepancy, with obviously the lower the better. I'll see the orthotist on Monday and will try and ask him if he could make a custom insoles for my flat feet along the extra 1.5 height for my left leg.
My left leg too felt significantly weaker during my LL and consolidation phase, and unfortunately it still does after all these years. The best thing to do is just carry on with physio (strength and stretch). There could be a possibility for your leg to improve. I started my physio training for a day and will continue under supervision for a whole month to see whether the pain improves. And then I will decide to have my rods taken out.

[Microbe]

I'll be getting my rods removed tomorrow. Feeling quite nervous, frankly more than my prior nail insertion surgery. Soon to be nil by mouth. Will keep you guys updated on how it goes. FML lol....

[Android]

Best of luck Microbe, better now than when you're older. You'll be back to your routine in no time.

[myloginacct]

I'll be getting my rods removed tomorrow. Feeling quite nervous, frankly more than my prior nail insertion surgery. Soon to be nil by mouth. Will keep you guys updated on how it goes. FML lol....

Don't worry - you'll nail it!

[Microbe]

Thnks android and myloginacc for the well wishes.
Im 4 hours post surgery. Acute pain is is quite bad. I was awake throughout the surgery with spinal epidural. Legs were totally paralyzed, and post surgery had a cramp like feeling, somewhat similar to pins and needles. Anaeasthia has worn off and my god the pain. Flexing and extending is difficult with legs feeling very heavy and painful. I was surprised to see that the nail removal is not done smoothly as I imagined it to be. There was a lot of  hammering and pulling with great effort. Don’t take this surgery lightly!

[Petite888]

Hi Microbe,

Sorry to hear you are in so much pain.  I hope it passes quickly for you so you can finally get back to life with no foreign objects in your body and start to heal properly. 

Can I ask you how long you had the rods in for? Supposedly the longer you leave them in the harder they are to take out as soft tissue grows tightly around them.  I was just wondering if yours had been left in for a longer time then normal, hence the intense pain.  The information might help other LL decide when best to get their rods removed.

Thanks

[Microbe]

Just over couple of years. I was conservative and chose not to remove it a year, fearing of refractrure. I’m not sure about the growth of soft tissues though. I think it’s normal to feel this pain with all the incisions, hammering , pulling , accumulation of all these procedures and trauma. Plus the spinal epidural makes it even worse.
People with more muscles may feel more pain, not sure , but I currently have a bony ass so not much soft tissues there atm.

[Petite888]

2 years is pretty standard and not that much over the recommended period. Thanks for the answer and hope you feel better soon. Are you feeling any better since your last post?

[Microbe]

Yes my doctor pretty much said that timing is not really crucial. He mentioned the downsides of keeping the nail are risk of fracture below the nail, complications arising from these fractures, and also the inability to have mri with the nails inside. This along with paleys recommendation of having magnets exposed to body fluids made me decide to heave the rods out. I’m feeling much better right now and interacting with the staff has helped my pain tremendously, along with the use of painkillers. So yes I’m happy to have the nail removed. I can have a peace of mind walking through some airports without having the nails detected.

[Body Builder]

Κeep strong Microbe.

How many days your doctor told you to wait till walking without any support?

[Microbe]

Κeep strong Microbe.

How many days your doctor told you to wait till walking without any support?

Thanks bodybuilder!
My doctor recommended me to stay in bed for the entire day, and then he along with the physiotherapist will see if I can partially walk tomorrow, depending on the pain. I’ll start exercises tomorrow.
Plus urinating in bed, brings back unpleasant memories .

[myloginacct]

Sorry to hear about the pain and the bad experiences. But you're past the worst now. You did LL, and have already had your rods removed.

Take your own time; you deserve it.

[Microbe]

Sorry to hear about the pain and the bad experiences. But you're past the worst now. You did LL, and have already had your rods removed.

Take your own time; you deserve it.

Thanks for the inspiring words login. Really need it at this very moment. I can’t believe how fast time flies, and looking back I can still vividly remember the days leading up to my LL surgery and my lengthening phase. Now having this rods removed I do feel it will all be over very soon when I recover. After going through all this, I can’t see myself doing anymore elective surgeries. Unfortunately the lengthening has predisposed me to some mechanical alignment issues and chances of arthritis is higher compared to the average population. The doctor had suggested that the best way of addressing this would be to get standard ilizarov to align the mechanical stress...but in my mind I’m thinking there’s no way I’m undergoing this s***  again.
Also the physio I received did improve the pain, and perhaps it may resolve the chronic pain I feel daily. I’m hoping....

[Microbe]

Pros:
1) tremendous boost in self esteem (x infinite times)
2) I never have to wear insoles for pure height increase. Although I’m planning on going to a professional orthotist to get insoles for my flat foot and the leg length discrepancies. I now have the chance of putting insoles for pure medical and comfort.
3) can dress however I want to. Hell I even wear flip flops or barefoot when the average height is 9 cm above me.
4)possibility of making some rare individuals function better with deformities

Cons:
1) The process itself involving exposure to a lot of radiation, being inactive, drug and possible addiction, multiple surgeries and acumalated trauma
2) Extremely long and tedious procedure which could lead to psychological issues (years)
3) fking price and the opportunity cost of resources , time and health
4)toll on the atheletic ability, perhaps due to biomenchqnical change or stretched muscles/nerves/skin and/or blood vessels. Combination of all?
5) many things could go wrong , you just be aware of these by going through the forum and take my previous for example, some life threatening too
6) weird proportion like femur:tibia, upper body:lower body, or even the height just not overall suiting the body
7) Pain,Pain,pain
8)changes in axial alignment for the worse
9) permanent scars

End of the day, be realistic on why you want CLL!
(P.s m pretty sure these have been menti9ned before but Im too bloody bored atm so I thought I’d write this from my Experience. I think I’ll finally make a move on downloading pubg and see the hype surrounding it)

[Android]

Thanks for the writeup, good to hear your overall perspective. Like you said, it's finally over, time to recover!

[Mariobro]

Yes my doctor pretty much said that timing is not really crucial. He mentioned the downsides of keeping the nail are risk of fracture below the nail, complications arising from these fractures, and also the inability to have mri with the nails inside. This along with paleys recommendation of having magnets exposed to body fluids made me decide to heave the rods out. I’m feeling much better right now and interacting with the staff has helped my pain tremendously, along with the use of painkillers. So yes I’m happy to have the nail removed. I can have a peace of mind walking through some airports without having the nails detected.

Hi Microbe, I hope you are doing well after rod removals. I would like to know how the implants were detected. Some says preciese 2 are not detected since they are non ferrus.
Please share your experience.
Thank you

[Microbe]

Hi Microbe, I hope you are doing well after rod removals. I would like to know how the implants were detected. Some says preciese 2 are not detected since they are non ferrus.
Please share your experience.
Thank you

Hey Mariobro
Thanks , atm I’m struggling with body movements on the bed, sore back and when I try to sit up there is N immense uncomfortable pressure on my bum and incision sites.
My experience with certain airports have been interesting. In my home country which I traveled on multiple occasions had detected my nail with the sensor the first time I left that airport with my rods. However after that ocaasion it never detected the rods again. Rather strange?
Couple of airports I regularly travel to always detect my rods. The rest of the airports don’t detect. In the u.s I always opt for a person to physically screen me.

Edit: I’m talking about those handheld metal detectors that are able to detect the nails.

[fokid]

hi microbe

been following your thread. please try and remember that without the surgery you would not have introspected these things. self loathing for decades of your life can also have an accumulated effect on every aspect of your life which can't even fathom looking ahead. but looking back you can see how much of your life was wasted away with self loathing thoughts.

maybe this surgery finally stopped you from self loathing? i would call that a win if you are reasonably physically functional to live a fulfilling life.

i firmly believe this operation should not be sought after for anything tangible (like girls, jobs, etc.) this operation is basically an extremely strong therapy to stop hating yourself.

i wish i had the opportunity and sense to undergo real psychotherapy at a young age instead of this. if anyone reading this is very young, please stop bombarding  yourself with LL information to the point where you cannot imagine a life without getting LL. instead spend some time getting psychotherapy to improve body image. if it does not work, LL is always there.

[Microbe]

hi microbe

been following your thread. please try and remember that without the surgery you would not have introspected these things. self loathing for decades of your life can also have an accumulated effect on every aspect of your life which can't even fathom looking ahead. but looking back you can see how much of your life was wasted away with self loathing thoughts.

maybe this surgery finally stopped you from self loathing? i would call that a win if you are reasonably physically functional to live a fulfilling life.

i firmly believe this operation should not be sought after for anything tangible (like girls, jobs, etc.) this operation is basically an extremely strong therapy to stop hating yourself.

i wish i had the opportunity and sense to undergo real psychotherapy at a young age instead of this. if anyone reading this is very young, please stop bombarding  yourself with LL information to the point where you cannot imagine a life without getting LL. instead spend some time getting psychotherapy to improve body image. if it does not work, LL is always there.

Fokid thanks for the comment I do agree on trying alternative options before dwelling and undergoing LL surgery. Perhaps it could’ve worked for me if I did try psychotherapy, honestly I did consider this but felt uncomfortable talking to someone about the insecurities of my height. This feeling had prevented me from seeking external help from others. it doesn’t really help when you have a feeling that you’re objectively short. The more I dwelled into this issue I basically barred my thoughts of trying alternate options and just dwelled majority of my time on LL. Growing up being called short names does extremely damage self esteem and for me it was one of the two biggest obstacles in life so far, with the other being the death of a family member at a young age. I reckon being mocked for being objectively short from the general population may justify the reason, perhaps to recover from the past abuse and breaking free from this obstacle. But then as I had mentioned in one of my previous posts, I’ve seen objectively short people living life to the fullest. Good post from you Fokid!

[fokid]

keep strong man.

the pessimist you are, you are now underplaying how bad it was for you before the surgery. you say you felt so bad that you would have been ok with some arthritis possibility. that means something.

also there is no snapping out of the possibility of doing LL once you hear about it and slowly get used to the gory details. so you would have effectively lived a major portion of your life in a 'suspended' mode if you hadn't done it. 'i might do LL next year so i will not pursue X'

this was the only way out (unless something magically good happened in your life).

[Microbe]

keep strong man.

the pessimist you are, you are now underplaying how bad it was for you before the surgery. you say you felt so bad that you would have been ok with some arthritis possibility. that means something.

also there is no snapping out of the possibility of doing LL once you hear about it and slowly get used to the gory details. so you would have effectively lived a major portion of your life in a 'suspended' mode if you hadn't done it. 'i might do LL next year so i will not pursue X'

this was the only way out (unless something magically good happened in your life).

Yes Funny how the mind works, One can accept  the consequences prior LL, not having a clue of what it would really feel like, due to being clouded by height dysphoria. Then when the person really has to live with the negative consequence years after LL, this could most likely affect their views on their decision, even after deeming it necessary to reach goal “X” to live a fulfilling life.  Dilemma for many LLers with a possibility of a never ending cycle of varying emotions, pessimism and optimism. 

[Microbe]

Recently had my first physio post removal session. Movements are really difficult due to pain from the incisions, mainly the incisions near the knee. Needed major suppport from the physiotherapist. After finishing the excercises on the bed, I progressed to sitting up on the edge of the bed with knee extension. Then we progressed to the hardest of them all, walking with a walker. Felt extremely light headed and I swear I was going to faint. Just took few steps around the room and sat back on the bed.

[Microbe]