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[LLSouthAmerica]

Hey people, how are you? its been a long time since I was here.

Life is great. However I noticed some issues post LL. When I go to extreme weather such as very high altitute places with very cold weather, I have moderate leg pain. I still have the rods.
 Do you have the same issue?

[short]

I have heard that the rods should be romoved because it can lead to pain.

[LLSouthAmerica]

I plan to remove the rods but my surgery was 2 years ago and according to the doctor only now am I allowed to remove them.

[limewalk]

Not an LLer but what temperatures do you mean by "very cold weather"?

[Tomhard]

Did you only lengthened 6 cm?

[Shadow91]

Hi mate, its been a long time since ive seen you on this forum. Its great to hear that you are well.

[Sweden]

I still have mine in, since 2013, and I’m living in a very cold  ountry.

I’m doing very well. They hurt a little sometimes but I just qualified to the highest competitive level in my sport.
And I still have x legs.

I won’t be removing my rods.

[YellowSpike]

Hey people, how are you? its been a long time since I was here.

Life is great. However I noticed some issues post LL. When I go to extreme weather such as very high altitute places with very cold weather, I have moderate leg pain. I still have the rods.
 Do you have the same issue?

I had the same exact issue with my femur rods, and it persisted until I took them out. I'd say 7/10 times, when I'd travel by plane, I'd get very bad pain (just in my right leg, oddly) that would persist even up to several hours after having landed. It also happened when I was hiking in a high altitude area, and I had to stop the hike halfway because the pain was that bad. I also would occasionally get very bad knee pain from squatting/deadlifting/leg press. All of these problems were resolved from taking the rods out and I'm now lifting heavier than ever.

My advice to anyone (except for maybe Sweden, who seems to be mostly fine) - TAKE THE HARDWARE OUT.

I also kept my rods after removal, and will be keeping them as a souvenir. They had a ruler that shows exactly how much I lengthened, nice to know I actually did get my 3 inches (7.5+cm for both). Might even get them framed 

[short]

Metal expands with heat, maybe this is the reason for pain or the different temperature between flesh and metal which nerves register.

[Ghostfish]

I still have mine in, since 2013, and I’m living in a very cold  ountry.

I’m doing very well. They hurt a little sometimes but I just qualified to the highest competitive level in my sport.
And I still have x legs.

I won’t be removing my rods.

Hi Sweden
I am glad that you are doing great and even qualified to the highest competitive level in your sport, which I guess, is some sort of martial art.
But, I don't understand why you do not want to remove your rods.  They are not good for our body in the long run, I believe.

[Sweden]

Hi Sweden
I am glad that you are doing great and even qualified to the highest competitive level in your sport, which I guess, is some sort of martial art.
But, I don't understand why you do not want to remove your rods.  They are not good for our body in the long run, I believe.

It’ll take away too much of my time. I’m done with surgeries.
I thought long and hard on doing my femurs, but I would look sick with even longer legs now.

I achieved everything I ever wanted now and I can truly say that I’m happy. On a good day I’m 181cm tall and that’s pretty good.

[KrP1]

It’ll take away too much of my time. I’m done with surgeries.
I thought long and hard on doing my femurs, but I would look sick with even longer legs now.

I achieved everything I ever wanted now and I can truly say that I’m happy. On a good day I’m 181cm tall and that’s pretty good.

The surgery of removal is not going to take you too much time. You are going to be walking in 5 days. It has nothing to do with LL itself. The recovery is really fast

[California2]

With respect, in my opinion it is incorrect to characterize nail removal as a minor surgery.  Many patients try to remove the nails; many don't.

It is not uncommon to remove the screws that hold/held the nails in place because these screws often protrude under the skin and can make some activities uncomfortable--even crossing one's legs can be uncomfortable if one leg rests on top of a screw in the other leg. 

Once the bone heals, the nails are completely encased in bone.  They can stay that way for life. 

Right or wrong, some people believe the nails cause pain or other sensations and want to remove the nails.  Doing so is a significant surgery because the nails may not simply slide out.  The surgeon must open the fully healed bone, get hold of the nail, and coax it out.  None of this process is easy.  The process presents real risk of damaging the bone.  Even if you decide to attempt removal; some surgeries must be abandoned because the surgeon discovers the nail cannot be removed without unreasonable risk.

For now, I do not intend to remove my nails.  Before I would consider removing my nails, I would want to be very sure they are actually causing a significant problem and would want some assurances that the nails were good candidates for successful removal.

Occasional phantom pain that cannot be definitively attributed to a nail would not be enough to convince me to undertake the very real risks associated with removal.

[KrP1]

With respect, in my opinion it is incorrect to characterize nail removal as a minor surgery.  Many patients try to remove the nails; many don't.

It is not uncommon to remove the screws that hold/held the nails in place because these screws often protrude under the skin and can make some activities uncomfortable--even crossing one's legs can be uncomfortable if one leg rests on top of a screw in the other leg. 

Once the bone heals, the nails are completely encased in bone.  They can stay that way for life. 

Right or wrong, some people believe the nails cause pain or other sensations and want to remove the nails.  Doing so is a significant surgery because the nails may not simply slide out.  The surgeon must open the fully healed bone, get hold of the nail, and coax it out.  None of this process is easy.  The process presents real risk of damaging the bone.  Even if you decide to attempt removal; some surgeries must be abandoned because the surgeon discovers the nail cannot be removed without unreasonable risk.

For now, I do not intend to remove my nails.  Before I would consider removing my nails, I would want to be very sure they are actually causing a significant problem and would want some assurances that the nails were good candidates for successful removal.

Occasional phantom pain that cannot be definitively attributed to a nail would not be enough to convince me to undertake the very real risks associated with removal.

If you stay with them inside some years and a problem happens then is when you are going to regret your decission. Its not so easy to take them out when they were inside the bone for 2 years than when they were there for 10.

[California2]

I cannot agree with your analysis.  Once your bone heals, it is healed.  Your nail is as embedded in your bone after 2 years as much as it will be embedded. 

In fact, appliances like nails tend to loosen over time.  Consequently, it would generally be easier to remove a nail ten years after surgery as compared to two years after surgery.

Also, to add to what I wrote before, some adjustable nails (like Stryde) have a magnet inside; thus, these type of nails are more apt to be removed as compared to stationary nails that are often permanent.

[Sm1997]

I still have mine in, since 2013, and I’m living in a very cold  ountry.

I’m doing very well. They hurt a little sometimes but I just qualified to the highest competitive level in my sport.
And I still have x legs.

I won’t be removing my rods.

You have knocked knees too?

[YellowSpike]

I cannot agree with your analysis.  Once your bone heals, it is healed.  Your nail is as embedded in your bone after 2 years as much as it will be embedded. 

In fact, appliances like nails tend to loosen over time.  Consequently, it would generally be easier to remove a nail ten years after surgery as compared to two years after surgery.

Also, to add to what I wrote before, some adjustable nails (like Stryde) have a magnet inside; thus, these type of nails are more apt to be removed as compared to stationary nails that are often permanent.

This is not true, and I've spoken to several LL surgeons about this. I actually had my rods in almost 4 years because I had delayed consolidation on one of them and because I was uncertain about taking them out too. Dr. Rozbruch said that when the rods/nails are in longer, they're actually much harder and riskier to remove because sometimes, bone grows around the screws and "clings" to the rod, which means that upon removal, you run the risk of fractures which could be catastrophic. This scared me half to death. As they were taking me into surgery (great timing!), he told me "if I can't get them out safely, I'm just going to leave them in." But thankfully, all went well and he got them all out. He told me, of all the hardware removal surgeries he's done, he's only seen a handful of cases where he really couldn't get them out. But the risk is still there.

My advice to everyone is just to take the hardware out, as soon as you can.

[wannagrowtaller]

This is not true, and I've spoken to several LL surgeons about this. I actually had my rods in almost 4 years because I had delayed consolidation on one of them and because I was uncertain about taking them out too. Dr. Rozbruch said that when the rods/nails are in longer, they're actually much harder and riskier to remove because sometimes, bone grows around the screws and "clings" to the rod, which means that upon removal, you run the risk of fractures which could be catastrophic. This scared me half to death. As they were taking me into surgery (great timing!), he told me "if I can't get them out safely, I'm just going to leave them in." But thankfully, all went well and he got them all out. He told me, of all the hardware removal surgeries he's done, he's only seen a handful of cases where he really couldn't get them out. But the risk is still there.

My advice to everyone is just to take the hardware out, as soon as you can.

It took 4 years for you to consolidate? I thought you were one of Guichet success stories.

[YellowSpike]

It took 4 years for you to consolidate? I thought you were one of Guichet success stories.

No. One of my femurs took about 2/2.5 years at most (I think more like 2 years) to fully consolidate. I didn't want to risk taking them out soon, and the timing was never right for me to have the surgery. That's why I kept them in for almost 4 years.

[InFullStryde]

No. One of my femurs took about 2/2.5 years at most (I think more like 2 years) to fully consolidate. I didn't want to risk taking them out soon, and the timing was never right for me to have the surgery. That's why I kept them in for almost 4 years.

Hi Yellow Spike! Old question, I'm sure - but how long did it take for you to walk again after the nail removal? I'm not looking forward to this.

P.S. I love the title of this thread "CLL Survivors!" ha ha

[wannagrowtaller]

No. One of my femurs took about 2/2.5 years at most (I think more like 2 years) to fully consolidate. I didn't want to risk taking them out soon, and the timing was never right for me to have the surgery. That's why I kept them in for almost 4 years.

Do you think that using 13mm nails has anything to do with this slow consolidation time? Or maybe another cause? Or just bad luck? If the nail had a reverse mechanism, would you use to consolidate faster? While you were lengthening, did you xrays showed callus or not (sorry, I didn't read your diary)?

[YellowSpike]

Hi Yellow Spike! Old question, I'm sure - but how long did it take for you to walk again after the nail removal? I'm not looking forward to this.

P.S. I love the title of this thread "CLL Survivors!" ha ha

I walked out of the hospital and into the cab almost immediately after I woke up from rod removal surgery I just needed the numbness in my legs to go away before they’d let me walk.

I was walking like a penguin for about a week. A week later I was totally normal.

[YellowSpike]

Do you think that using 13mm nails has anything to do with this slow consolidation time? Or maybe another cause? Or just bad luck? If the nail had a reverse mechanism, would you use to consolidate faster? While you were lengthening, did you xrays showed callus or not (sorry, I didn't read your diary)?

I think it was bad luck, although ratcheting rods don’t help. I know many people who had one leg consolidate more slowly than the other, and there’s no way to anticipate this. Luck of the draw.

[Medium Drink Of Water]

I never noticed any weird feelings due to temperatures, but I was never exposed to any extreme temperatures while I had the nails in.

I did, however, sometimes "feel" that the nails were there, preventing my bones from having any natural bending/flexing/yielding/springing ability when I exerted myself physically.

[dreamingtall]

Has anyone been able to deadlift after LL

[Medium Drink Of Water]

Has anyone been able to deadlift after LL

I haven't tried. I don't have any desire to be muscular anymore. Probably because I don't have a short height to compensate for anymore.

[Rei]

I haven't tried. I don't have any desire to be muscular anymore. Probably because I don't have a short height to compensate for anymore.

You always want to be the best version of yourself.

I was hitting the gym really hard those years and now i lost all the muscles in my legs, plus upper body of course but my legs looks like the legs of those starved african kids. As soon as i can i’m going to hit the gym as hard as i can