Scheduled for nail removal + honest feelings on LL

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-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future if there is a need of removing the nail, with the current pace of evolving technologies, it maybe hard to obtain outdated instruments to remove the old rods.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

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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:

QuoteAll 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:

QuoteThe 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.

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Quote from: Android on April 05, 2018, 10:52:12 PMAll 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

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Quote from: Microbe on April 05, 2018, 10:18:23 PM-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.

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Quote from: myloginacct on April 06, 2018, 12:01:54 AMHi 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.

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Quote from: Microbe on April 06, 2018, 12:28:40 AMThanks 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.

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Quote from: Microbe on April 05, 2018, 10:18:23 PM-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.

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Quote from: bigdreams55 on April 06, 2018, 11:11:51 AMHey 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.

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Quote from: Microbe on April 06, 2018, 05:41:19 PMHello 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.

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Quote from: bigdreams55 on April 07, 2018, 01:07:49 AMI'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.