To all CLL survivors

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Quote from: Ghostfish on August 31, 2019, 08:34:24 AMHi 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.

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Quote from: Sweden on August 31, 2019, 12:22:59 PMIt’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

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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.

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Quote from: California2 on August 31, 2019, 03:40:23 PMWith 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.

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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.

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Quote from: Sweden on August 30, 2019, 02:03:04 PMI 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?

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Quote from: California2 on August 31, 2019, 10:50:39 PMI 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.

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Quote from: YellowSpike on September 05, 2019, 01:36:29 PMThis 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.

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Quote from: wannagrowtaller on September 06, 2019, 12:24:57 AMIt 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.

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Quote from: YellowSpike on September 13, 2019, 08:12:29 PMNo. 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