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[Franz]

Hi Dr Birkholtz,

Is the loss of athletic ability after limb lengthening influenced more by the stretching of the soft tissues or more so the change in ratio between tibs/femurs? Or is it just the surgical trauma? I guess what I'm wondering is if a loss of athletic ability after one lengthening can be minimized by lengthening a second segment and getting the ratio between femurs/tibs closer to what they were originally. Or would a second lengthening just cause a further dip in athletic ability because of the additional surgical trauma?

Hi,

I am not aware of any data to suggest that it is purely due to the ratio change. I think it is more the muscle length changes as well as the surgical trauma. If this is the case, athletic ability will worsen with further surgery.

Not sure this is the aswer you wanted, though!

[Franz]

Hi guys,

I have decided to montior this thread in the interest of safety and accurate information. Please note that in the interest of not appearing to promote myself, I will not enter into any discussions about finances in this thread. For any specific or cost-related queries, please email me at franz.birkholtz@walkamile.co.za.

Realistically I will probably only be able to monitor and reply once a week.

Warm regards,

FFB

[Alu]

Well to (re)start things off:

As of now how many CLL have you done with the PERCICE 2?
How has the process been for these patients?
Have you kept in touch with any of your former patients; have any newly unreported long term complications arisen since this time?
Would you say that there should be a possible limit on the amount done with regards to tibia? Like say 5 cm?

[theuprising]

Well to (re)start things off:

As of now how many CLL have you done with the PERCICE 2?
How has the process been for these patients?
Have you kept in touch with any of your former patients; have any newly unreported long term complications arisen since this time?
Would you say that there should be a possible limit on the amount done with regards to tibia? Like say 5 cm?

If possible could there be a reply about the long term complications of going over the recommended amounts as it gets asked on here constantly. Example will a guy who does 9cm on one segment eventually recover the same in the end as a guy who did 5cm? What do these big lengthening do to the body so it doesn't totally recover the same?

[Uppland]

Dr. franz your commitment to providing safe and accurate information to us potential patients is as amiable as your knowledge and friendly attitude.

-You stated earlier that cosmetic humerus lengthening isn't recommended could you expand on why that is, which complications that tend to occur and if there are exceptions to this rule?

-Could you speak in more general terms about the permanent loss of athletic function that most if not all LL patients experience? I'd like to better understand the long-term effects on my body.

Thank you so much.

[KiloKAHN]

Good to see Dr Birkholtz back.

[Franz]

I have now done 3 cosmetic limb lengthenings with Precice 2. Our overall Precice experience is now over 15 nails. External fixator based lengthenings more than 1500.

As far as I am aware, none of our CLL Precice patients have had significant complications in the long term.

Tibial CLL should probably be limited to around 4-5cm. This has to do with muscle tension and contractures primarily. Although the muscles to grow in the process of distraction histogenesis, there is an element of stretching that has to take place as well and if this is excessive, contractures result (eg ballerina foot) and this may be permanent.

[Franz]

If possible could there be a reply about the long term complications of going over the recommended amounts as it gets asked on here constantly. Example will a guy who does 9cm on one segment eventually recover the same in the end as a guy who did 5cm? What do these big lengthening do to the body so it doesn't totally recover the same?

See my previous post. it primarily has to do with the amount of stretching and tension exerted over a muscle tendon unit. If you exceed the 'safe distance', you may well end up with permanent contractures. This means that you lose joint movement. Of course longer distractions take more time, have higher non-union rates, are more painful etc etc (see previous posts in this thread).

A 5cm lengthening may recover full function over time, a 9cm one is much less likely to do so.

[Franz]

Dr. franz your commitment to providing safe and accurate information to us potential patients is as amiable as your knowledge and friendly attitude.

-You stated earlier that cosmetic humerus lengthening isn't recommended could you expand on why that is, which complications that tend to occur and if there are exceptions to this rule?

-Could you speak in more general terms about the permanent loss of athletic function that most if not all LL patients experience? I'd like to better understand the long-term effects on my body.

Thank you so much.

Thanks for the kind words. If we think of the worst case scenario for CLL, it is probably severe functional loss of the affected limb(s). Loss of function in the lower limb is generally much better tolerated than losing function of arms or hands. For this reason CLL in the lower limb is more acceptable than in the upper limb.
 The bone growth that occurs during humerus lengthening is generally good and the soft tissues adapt reasonably well. The major issue is potential for nerve damage and diminished hand function.

Range of motion of the joints are affected during CLL (even though the effect may be slight). Muscle length and power changes permanently. Loss of flexibility and explosive power. Loss of some proprioceptive capacity. Endurance loss. How much is lost and how much it will affect each individual is quite difficult to ascertain, but there seems to be a roughly linear relationship between these factors and the amount lengthened. Ie, the more you lengthen, the more of these you can expect.

[Uppland]

Thanks for the kind words. If we think of the worst case scenario for CLL, it is probably severe functional loss of the affected limb(s). Loss of function in the lower limb is generally much better tolerated than losing function of arms or hands. For this reason CLL in the lower limb is more acceptable than in the upper limb.
 The bone growth that occurs during humerus lengthening is generally good and the soft tissues adapt reasonably well. The major issue is potential for nerve damage and diminished hand function.

Range of motion of the joints are affected during CLL (even though the effect may be slight). Muscle length and power changes permanently. Loss of flexibility and explosive power. Loss of some proprioceptive capacity. Endurance loss. How much is lost and how much it will affect each individual is quite difficult to ascertain, but there seems to be a roughly linear relationship between these factors and the amount lengthened. Ie, the more you lengthen, the more of these you can expect.

One last question if I may:

I plan to lengthen my femurs 5CM via an internal nail method, how do I as a patient best prepare for this surgery?

I already try to stretch and build my leg muscles, is there anything else and do you have any tips?

[Alu]

Thanks for the kind words. If we think of the worst case scenario for CLL, it is probably severe functional loss of the affected limb(s). Loss of function in the lower limb is generally much better tolerated than losing function of arms or hands. For this reason CLL in the lower limb is more acceptable than in the upper limb.
 The bone growth that occurs during humerus lengthening is generally good and the soft tissues adapt reasonably well. The major issue is potential for nerve damage and diminished hand function.

Range of motion of the joints are affected during CLL (even though the effect may be slight). Muscle length and power changes permanently. Loss of flexibility and explosive power. Loss of some proprioceptive capacity. Endurance loss. How much is lost and how much it will affect each individual is quite difficult to ascertain, but there seems to be a roughly linear relationship between these factors and the amount lengthened. Ie, the more you lengthen, the more of these you can expect.

Dr.Franz,

I certainly don't mean to negate your comments, considering that the humerus is as an important limb to hand as the spine is to the nervous system, but wouldn't those functionality comments be more applicable to the forearm. It seems like overall forearm lengthening would be the one most impacting the functionality of the hand. Also I do recall this study saying it'd be the easiest to lengthen out of all the possible segments; this of course doesn't mean it wouldn't actually effect functionality, but I digress:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2323419/

[Franz]

One last question if I may:

I plan to lengthen my femurs 5CM via an internal nail method, how do I as a patient best prepare for this surgery?

I already try to stretch and build my leg muscles, is there anything else and do you have any tips?

You need to prepare in terms of three aspects: 1) Mental strength. This process is brutal and takes a lot of mental tenacity. 2) Upper body strength. To help with walking rehab. Remember you will have to walk on your hands effectively for the first couple of weeks/months (depending on the technique you choose). 3) Flexibility. To allow muscles, nerves etc to adapt to lengthening.
The ideal preparation is probably Pilates / Yoga.

Bulking on limb muscles is probably the worst you can do, as it will resist the distraction forces more.

Anyway, that is my humble opinion.

[Franz]

Dr.Franz,

I certainly don't mean to negate your comments, considering that the humerus is as an important limb to hand as the spine is to the nervous system, but wouldn't those functionality comments be more applicable to the forearm. It seems like overall forearm lengthening would be the one most impacting the functionality of the hand. Also I do recall this study saying it'd be the easiest to lengthen out of all the possible segments; this of course doesn't mean it wouldn't actually effect functionality, but I digress:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2323419/

Yes, forearm lengthening will potentially have more of an effect on hand function than humeral lengthening. The issue with humerus is the radial nerve that contributes significantly to hand function. It is not injured often, but is devastating if it happens.

[KiloKAHN]

Hi Dr Birkholtz,

It seems that most who use the Precice for femur lengthening perform an ITB release whereas the well-known surgeons who use an Albizzia nail choose not to do one. Is the ITB release done to make it easier for the Precice to distract? What would the consequence(s) be if one were to lengthen femurs without an ITB release done?

[Nightwish]

Hi Dr Birkholtz,

I would also like to echo Uppland's sentiments regarding your contribution to this forum and the awareness you've raised regarding this surgery.

I am wondering what your views are on the surgery being done over two stages, eg right leg first then the left after the right leg can be used again.

[Franz]

Hi Dr Birkholtz,

It seems that most who use the Precice for femur lengthening perform an ITB release whereas the well-known surgeons who use an Albizzia nail choose not to do one. Is the ITB release done to make it easier for the Precice to distract? What would the consequence(s) be if one were to lengthen femurs without an ITB release done?

My humble opinion is to follow the surgeons with the most experience. It seems that the guys with most Precice experience (read Paley) do ITB releases and the ones with most Albizzia experience (read Guichet and Betz) suggest that ITB release may not be necessary.

Personally I perform an ITB release because I believe it adds value.

Theoretically a tight ITB can give a hip flexion contracture, knee flexion contracture and/or failure to extend the nail. I have had to perform a release on somebody else's patient with a nail based lengthening and tight itb recently.

[Franz]

Hi Dr Birkholtz,

I would also like to echo Uppland's sentiments regarding your contribution to this forum and the awareness you've raised regarding this surgery.

I am wondering what your views are on the surgery being done over two stages, eg right leg first then the left after the right leg can be used again.

I think it is fantastic if you have the stamina and budget to sustain the process.

[Alu]

Adding to Nightwish,

Would you be willing to use that method to length? If so, I know it's probably gonna be more time consuming, but would it also be more expensive?

[Franz]

Adding to Nightwish,

Would you be willing to use that method to length? If so, I know it's probably gonna be more time consuming, but would it also be more expensive?

It is certainly something to consider if the patient prefers that route.

The issue is the cost of physio and hospitalisation is roughly the same whether we do one or two sides. This means that doing them separately is around 1.5 times as expensive as doing them together.

[Moose]

any chance you have an idea when precice 3 is coming out?

[alps]

hey Dr. Franz,

how likely is it for severe complications to occur "while" lengthening as opposed to during surgery?

the main complications during lengthening we know are nerve damage, non-consolidation.

is it possible that things might be really unpredictable when it comes to these while lengthening?

should someone lengthening be in constant fear of something like this happening every second of the months of lengthening?
since you mentioned mental stability, I think this would be personally one of the scariest things while lengthening. constant dilemma, fear and paranoia.

[Franz]

any chance you have an idea when precice 3 is coming out?

Unfortunately I don't know

[Franz]

hey Dr. Franz,

how likely is it for severe complications to occur "while" lengthening as opposed to during surgery?

the main complications during lengthening we know are nerve damage, non-consolidation.

is it possible that things might be really unpredictable when it comes to these while lengthening?

should someone lengthening be in constant fear of something like this happening every second of the months of lengthening?
since you mentioned mental stability, I think this would be personally one of the scariest things while lengthening. constant dilemma, fear and paranoia.

The complications of surgery can be divided into acute, early post-op, during distraction, during consolidation and long-term.
Examples are:
Acute (during surgery): anaesthetic complications, fat embolism syndrome, excessive bleeding, damage to arteries and nerves with the osteotomy, unwanted propagation of the osteotomy (ie bigger break than expected)
Early post-op: pain, stiffness, wound infection, deep vein thrombosis and pulmonary embolism
During distraction: device failure, premature consolidation, slow bone formation, joint contractures
During consolidation: delayed or non-union, regenerate bending, device failure
Long-term: functional impairment, arthritic changes

The good news is most of these can be managed by an experienced doctor. The thing that makes a surgeon good is not only surgical skill, but the way that they prevent and manage complications. If that is done with care and empathy, that is a great surgeon.

[alps]

The complications of surgery can be divided into acute, early post-op, during distraction, during consolidation and long-term.
Examples are:
Acute (during surgery): anaesthetic complications, fat embolism syndrome, excessive bleeding, damage to arteries and nerves with the osteotomy, unwanted propagation of the osteotomy (ie bigger break than expected)
Early post-op: pain, stiffness, wound infection, deep vein thrombosis and pulmonary embolism
During distraction: device failure, premature consolidation, slow bone formation, joint contractures
During consolidation: delayed or non-union, regenerate bending, device failure
Long-term: functional impairment, arthritic changes

The good news is most of these can be managed by an experienced doctor. The thing that makes a surgeon good is not only surgical skill, but the way that they prevent and manage complications. If that is done with care and empathy, that is a great surgeon.

Thanks Dr Franz!

From what I can guess, non-union, regenerate bending, device failure cannot be controlled by the surgeon. Is that right?

And did you miss nerve damage during distraction? isn't that a possibility? something like "I was at 6.9cm yesterday when I decided to make it 7cm. I haven't been able to feel one part of my left foot ever since." ? is that how it can happen?

[alps]

Also, Dr. Franz, this doesn't concern CLL, but what is your take on HGH for normal kids who are just short and meant to be short?

Considering how ghastly this surgery is, do you think it's better to play the HGH card and see how it goes when you're young?

[Franz]

Also, Dr. Franz, this doesn't concern CLL, but what is your take on HGH for normal kids who are just short and meant to be short?

Considering how ghastly this surgery is, do you think it's better to play the HGH card and see how it goes when you're young?

Good question. My concern is two-fold: Firstly, not every kid who ends up as a short adult will necessarily want to be taller. The question is when is it appropriate for a parent to prophylactically adjust the kid's growth without their consent. The second more important issue is whether there are any long-term negative effects to HGH. It is hormonal treatment and we simply do not really know the long-term safety profile.

Hope this helps

[alps]

Thanks Dr. Franz.

I think you missed my earlier question.

Can nerve damage happen overnight while lengthening? Hypothetically, if you are doing fine now and distract by 1mm, is it possible that your nerve could have got damaged?

Or are there always gradual signs that show an upcoming complication like nerve damage?

[Franz]

Thanks Dr. Franz.

I think you missed my earlier question.

Can nerve damage happen overnight while lengthening? Hypothetically, if you are doing fine now and distract by 1mm, is it possible that your nerve could have got damaged?

Or are there always gradual signs that show an upcoming complication like nerve damage?

Jip, missed your question. Sorry.

It is possible. Nerves do not particularly like stretching and although they are elastic up to a point, they stop working after stretching beyond a certain point. Think of an elastic band that can stretch freely, but stops at some point and can break. Now the nerve doesn't typically break, but stops functioning. If the stretch is discontinued, the nerve can recover, but there is also a point at which that nerve function loss can become permanent. This is different for different people, so it is not possible to give accurate amounts/distances. In general terms, this is one of the reasons why we have safe limits for CLL and should be careful to go beyond that.
Sometimes the earliest sign that the nerve may be in trouble is a tingling sensation, almost like when your foot goes to sleep. We call this paresthesia. Your doctor should be alerted of this immediately.
My approach is then to stop distraction for a day or two and recommence at a slower rate. Should the symptoms not improve, I will start talking to the patient about stopping distraction altogether or performing a nerve release.

[alps]

Thank you Dr. Franz.

What nerves are the most likely to be damaged? what is the functional loss if a permanent nerve damage happens? complete loss of function of leg or something more localized like being unable to move a toe?

[Taller]

Does the femur or the tibia play a more significant role in stride length, and how would CLL Impact waking and running stride overall?

[Franz]

Thank you Dr. Franz.

What nerves are the most likely to be damaged? what is the functional loss if a permanent nerve damage happens? complete loss of function of leg or something more localized like being unable to move a toe?

Hi, the most common nerve is the peroneal nerve during tibial lengthening. This can lead to a foot drop.