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[Polycrates.]

Hey doc,

Thank you for the prompt responses. I can move my toe in circles and can feel it and everything, it just won't flex upwards. Would this minimal movement indicate that the nerve is still intact, or are the nerves for these movements separate? I really want to get my toe's function back, but I heavily appreciate your honesty. My doctor is never that forthcoming. He keeps saying it'll come back, but in the back of my mind I knew that it is something that seems like it might end up being permanent. If it never returns to normal function, should I be able to walk and function normally?

[Polycrates.]

Forgot to let you know, for when you answer, doc, that my username is now Polycrates (from Ashoka). To expound some more on what's happening, I told my physio about the nerve damage today and he tried telling me that if it were a nerve issue the whole foot would be dropped. He says proudly how he's studied over 6 years in physiology so I'd hope he know, but even from the little I've read, I know there exists several branching nerves supplied by the main tibial nerves. It would be one of these that would have been severed, correct?

[Polycrates.]

Video of paralysed toe:

[JP]

HI Dr. Birkholtz,

You are very smart and kind thank you!

5cm – femoral lengthening using monorail method what is the rate of time in most cases to regain full ROM after the device is removed?

(I’ve heard that it takes 5 months)

I look forward to hearing from you
Drew

[Cooper]

Dr. Franz,
Upfront question...how many precise rod have you implemented? Any way we can see the x-rays. It may be helpful for posterity.

Also, do you allow about 7.5 cm on femur if rehab is good.
Thanks

[Franz]

Forgot to let you know, for when you answer, doc, that my username is now Polycrates (from Ashoka). To expound some more on what's happening, I told my physio about the nerve damage today and he tried telling me that if it were a nerve issue the whole foot would be dropped. He says proudly how he's studied over 6 years in physiology so I'd hope he know, but even from the little I've read, I know there exists several branching nerves supplied by the main tibial nerves. It would be one of these that would have been severed, correct?

Look, there is a possibility that it may return. If it is a nerve, it is the branch that supplies the muscle to the big toe and would certainly not give sensation loss in the whole foot.
Hope it returns!

[Franz]

HI Dr. Birkholtz,

You are very smart and kind thank you!

5cm – femoral lengthening using monorail method what is the rate of time in most cases to regain full ROM after the device is removed?

(I’ve heard that it takes 5 months)

I look forward to hearing from you
Drew

Jip, 5-6 months. This is the main advantage of precice. The rom returns sooner.

[Franz]

Dr. Franz,
Upfront question...how many precise rod have you implemented? Any way we can see the x-rays. It may be helpful for posterity.

Also, do you allow about 7.5 cm on femur if rehab is good.
Thanks

We've only had it available for a relatively short time. We've done five precice cases for indications other than cll.
Unfortunately I cannot make the xrays abailable (patient confidentiality).
7.5 is pushing it, but it may be possible in extreme cases where rehab is exceptional. I think a realistic goal for femur is 5-6 cm.

[ChrisIsaak]

Dear Dr. Birkholtz,

Thank you for all your contributions in this forum, we really appreciate your valuable input.

I'm a current LL patient still in the lengthening phase, currently lengthened around 4,60 cm in femurs. A couple weeks ago, my doctor suggested that I had fast bone consolidation, and told me to speed up the lengthening to 1,4 mm daily. After a while, I had a numbing sensation, particularly on my right tibia, starting from the knee (and the back part of the knee). I felt my hamstring stretching and it began to hurt, so on the follow-up consultation we lowered the lengthening speed to 1 mm again. However, during my last weekly follow-up, my doctor analyzed the X-ray and told me that we needed to speed up again for a while, left leg was fine but the right leg had a risk of early consolidation, so I'm currently lengthening both legs at 1,4 mm again. And once again, I have a numbing feeling on my leg (below the knee) - it feels as if someone is sticking needles to my leg, or an electric shock. My physiotherapist told me that it could be related to the femoral nerve trying to adjust to the lengthening pace of the leg. My feet and knees are still perfectly aligned and I have excellent range of motion, but the pain really bothers. I wonder if cold therapy or hot therapy could help, maybe placing an ice pad on my leg? Dr. Birkholtz, have you had a similar case in any of your patients? I'm not worried, just medical curiosity really     Thanks in advance.

[OverrideYouGenetics]

We've only had it available for a relatively short time. We've done five precice cases for indications other than cll.
Unfortunately I cannot make the xrays abailable (patient confidentiality).
7.5 is pushing it, but it may be possible in extreme cases where rehab is exceptional. I think a realistic goal for femur is 5-6 cm.

I am considering CLL with you as an option along with Guichet and Dr.Donghoon.

I know you wrote that you would post a cost estimate, and I know that someone posted a quote from an email of 52k USD.
But it would be nice to hear it confirmed from you.

[Franz]

Hi guys,

We've spent the last week number crunching and obtaining quotes from the relevant service providers.
Our cost for bilateral precice lengthening is 52K USD. This includes the following:
All professional fees for surgeon, anaesthetist, physio, psychologist, occupational therapist.
High care unit for 1 day.
Normal hospital ward for 5 days.
All followup visits, erc sessions and woundcare visits.
Daily physio for 75 days.
Doctor contact at least twice a week.
Support by a multi disciplinary team experienced in limb reconstruction.
Accommodation in a four star rated guesthouse close to hospital on a dinner bed and breakfast basis. Includes wifi and satellite tv. Also includes daily transfer to clinic for adjustments. The accommodation is for two people. This is a self catering unit.
As you can see, everything is included, except for potential complications.

Our lists are generally booked a couple of weeks in advance, but provided I am not on congress or holiday, we can accommodate most of the year.

[Franz]

Dear Dr. Birkholtz,

Thank you for all your contributions in this forum, we really appreciate your valuable input.

I'm a current LL patient still in the lengthening phase, currently lengthened around 4,60 cm in femurs. A couple weeks ago, my doctor suggested that I had fast bone consolidation, and told me to speed up the lengthening to 1,4 mm daily. After a while, I had a numbing sensation, particularly on my right tibia, starting from the knee (and the back part of the knee). I felt my hamstring stretching and it began to hurt, so on the follow-up consultation we lowered the lengthening speed to 1 mm again. However, during my last weekly follow-up, my doctor analyzed the X-ray and told me that we needed to speed up again for a while, left leg was fine but the right leg had a risk of early consolidation, so I'm currently lengthening both legs at 1,4 mm again. And once again, I have a numbing feeling on my leg (below the knee) - it feels as if someone is sticking needles to my leg, or an electric shock. My physiotherapist told me that it could be related to the femoral nerve trying to adjust to the lengthening pace of the leg. My feet and knees are still perfectly aligned and I have excellent range of motion, but the pain really bothers. I wonder if cold therapy or hot therapy could help, maybe placing an ice pad on my leg? Dr. Birkholtz, have you had a similar case in any of your patients? I'm not worried, just medical curiosity really     Thanks in advance.

It does sound like a nerve that is stretching a bit fast. It is a bit of a catch 22 in that premature consolidation would mean another osteotomy.

[Arche]

Dr. B, is accommodation for 75 days as well? Also how much does LON/LATN cost??

[OverrideYouGenetics]

Dr. B, is accommodation for 75 days as well? Also how much does LON/LATN cost??

Accommodation in a four star rated guesthouse close to hospital on a dinner bed and breakfast basis. Includes wifi and satellite tv. Also includes daily transfer to clinic for adjustments. The accommodation is for two people. This is a self catering unit.
As you can see, everything is included, except for potential complications.

Should tibial LONs be performed, the price will drop to approximately 25K euro.

[Arche]

Okay first off precise was quoted at 40K Euro, and so isn't it okay to inquire how much the Tibial LON price has changed?

Also where in your bolded sentences does it say how long the accommodation is? I'm not asking this just for myself, I'm asking this for the entire community. Don't PM me and say I'm polluting this thread when I am just trying to achieve as much transparency as possible.

[Franz]

Okay first off precise was quoted at 40K Euro, and so isn't it okay to inquire how much the Tibial LON price has changed?

Also where in your bolded sentences does it say how long the accommodation is? I'm not asking this just for myself, I'm asking this for the entire community. Don't PM me and say I'm polluting this thread when I am just trying to achieve as much transparency as possible.

Hey Arche,

It is 75 days accommodation.

LON is still around 25K euro or 34K USD, depending on exchange rates.

Precice is 52K USD, which is 2K cheaper than the quoted euro amount.

Anyway, thanks for the interest.

[Arche]

Hey Arche,

It is 75 days accommodation.

LON is still around 25K euro or 34K USD, depending on exchange rates.

Precice is 52K USD, which is 2K cheaper than the quoted euro amount.

Anyway, thanks for the interest.

Dear Dr. Birkholtz,

Thank you so much for your reply back. I apologize if I have bothered you in any way. I truly appreciate what you have done for this community.

[Franz]

Dear Dr. Birkholtz,

Thank you so much for your reply back. I apologize if I have bothered you in any way. I truly appreciate what you have done for this community.

No problemo. Thanks for the kind words.

[BilateralDamage]

Dr. Birkholtz,

Would you ever consider doing quadrilateral lengthening with PRECICE 2?  What would be your upper lengthening limit with this process?  How much would this cost?

What are the risks associated with quadrilateral lengthening?  How long would someone be expected to be in a wheelchair for lengthening 12 cm in total?

Thank you so much for taking time out of your busy schedule for us!!

[mediocre]

Hi Dr Franz,

Since South Africa is quite far, if, say, we decide to do LL with you, and everything's been confirmed/paid/etc, can we just head on to Pretoria and do the LL in one go once everything's approved, or you need a personal consultation first, then return back to South Africa for the LL itself?

Do you do your own psychological assessment (just like other doctors do, like Dr Paley) or do you need a separate Psychiatrist?

Thanks.

[Franz]

Dr. Birkholtz,

Would you ever consider doing quadrilateral lengthening with PRECICE 2?  What would be your upper lengthening limit with this process?  How much would this cost?

What are the risks associated with quadrilateral lengthening?  How long would someone be expected to be in a wheelchair for lengthening 12 cm in total?

Thank you so much for taking time out of your busy schedule for us!!

Hi, it is possible, but risks of knee contracture is quite high. Maximum length around 10cm, but depends on whether range of motion can be maintained. Cost is slightly lower than for two separate events, but as the major cost drivers are theatre time and cost of the nails, it is not tremendously cheaper. The only advantage is that it is a single process.
Femur or tibia 52K. Both at the same time is around 94K.

[TRS]

We've only had it available for a relatively short time. We've done five precice cases for indications other than cll.

Hey Dr. Birkholtz,

Your input to this forum has helped me tremendously and has elucidated many aspects of CLL that many doctors and other LL forums fail to clarify.
Just like to ask you about the five precice cases you have performed so far. Did you experience any Precice nail failure or complication that required the nail to be changed?

[Arche]

Hi, it is possible, but risks of knee contracture is quite high. Maximum length around 10cm, but depends on whether range of motion can be maintained. Cost is slightly lower than for two separate events, but as the major cost drivers are theatre time and cost of the nails, it is not tremendously cheaper. The only advantage is that it is a single process.
Femur or tibia 52K. Both at the same time is around 94K.

Dear Dr. B.,

Your recent commitment to this forum has been nothing short of outstanding. There are so many questions regarding this surgery, and so much misinformation as well. I apologize if I have been annoying you in any manner.

How much would it cost to do Quad lengthening with Tibial LON and PRECISE Femurs? Would it be advisable for 10 cm?

Thank you,

Arche

[Franz]

Hi Dr Franz,

Since South Africa is quite far, if, say, we decide to do LL with you, and everything's been confirmed/paid/etc, can we just head on to Pretoria and do the LL in one go once everything's approved, or you need a personal consultation first, then return back to South Africa for the LL itself?

Do you do your own psychological assessment (just like other doctors do, like Dr Paley) or do you need a separate Psychiatrist?

Thanks.

Hi,

It is unrealistic to expect you as a patient to travel twice. My suggestion would be to follow these steps:
- make up your mind about CLL and calculate whether you have the finances (remember plane tickets and contingencies)
- contact me via email with a detailed history, including medical history. Remember your height, weight and reasons for CLL (also where you come from). No smokers! (franz.birkholtz@walkamile.co.za)
- once I clear you provisionally as a suitable candidate, I will send you an xray protocol to have an xray done at home, which you can forward via email
- I will measure the Xray and we will discuss options and realistic goals.
- If you are looking for more than 5cm per segment (10 in total), please look elsewhere.
- Once we are happy to proceed, we can schedule you for a consultation and surgery.
- The consultation will be the final 'hurdle'. During this phase, we will involve my psychologist, but by this time we will know enough about you! This consultation costs $100. I will not ask for an additional deposit before this step, as long as you understand that I have the right to cancel your operation after this consultation if I do not think it is appropriate to continue for medical reasons. The previous steps should prevent this.
- Once you pass this test (which hopefully you will), we can confirm your place on the list upon receipt of payment. This can be done via eft or credit card.
- The surgery can essentially proceed within a couple of days after the consultation.
- I have a lead time to order Precice and as such, we will need to measure your xrays at least 4 weeks before the surgery date, to ensure we order the correct size nail.
- Upon scheduling the consultation, we will provisionally book your accommodation. A cancellation fee may be necessary if we do not proceed for whatever reason.
- I would prefer for you to stay in Preotria until distraction is complete, and until we can be sure your rehabilitation is well-established.

Hope this gives you clarity.

BTW, the accommodation rate is quoted for a double room, so if you want to bring a friend, spouse or family member, this is included in the price.

[Franz]

Hey Dr. Birkholtz,

Your input to this forum has helped me tremendously and has elucidated many aspects of CLL that many doctors and other LL forums fail to clarify.
Just like to ask you about the five precice cases you have performed so far. Did you experience any Precice nail failure or complication that required the nail to be changed?

Love your profile name!

No, up to now, touch wood, we have not had to revise any of the nails. They were, however, all unilateral, post-traumatic cases.

[Franz]

Dear Dr. B.,

Your recent commitment to this forum has been nothing short of outstanding. There are so many questions regarding this surgery, and so much misinformation as well. I apologize if I have been annoying you in any manner.

How much would it cost to do Quad lengthening with Tibial LON and PRECISE Femurs? Would it be advisable for 10 cm?

Thank you,

Arche

No worries.

Again, you will essentially save on the cost of the Precice, which will, partly, be replaced with the cost of the fixators, nails and locking procedures. Probably in the region of 80K USD.

I think 10 cm is possible, but it is certainly not guaranteed. It is easier to guarantee a good result with a single level somewhere between 5 and 6 cm, followed by a second phase 1 year later...

[mediocre]

Thanks Dr Franz for the detailed steps of getting surgery under you.

A question re: Precice: I'm reading Precice 2 Femur diary at the old forum and at least a couple of them are documenting that the measured lengthening is not equal bilaterally (they're still in lengthening phase). One side is off by few mm and so they compensate by adjusting Precice (more catching up with lengthening on the slower side obviously).

I thought Precice is accurate or is this to be expected and it just needs adjustment till lengthening has finished/consolidated?

[Franz]

Thanks Dr Franz for the detailed steps of getting surgery under you.

A question re: Precice: I'm reading Precice 2 Femur diary at the old forum and at least a couple of them are documenting that the measured lengthening is not equal bilaterally (they're still in lengthening phase). One side is off by few mm and so they compensate by adjusting Precice (more catching up with lengthening on the slower side obviously).

I thought Precice is accurate or is this to be expected and it just needs adjustment till lengthening has finished/consolidated?

This is a good question. The beauty of precice is that the surgeon can control the eventual distraction accurately, by speeding up, slowing down, or even backing up the nail. The final result is what counts.

You will appreciate that different forces act upon different parts of the body, and as such, it is possible that the left and right legs may see different forces. This may result in minor differences during lengthening.

This is why it is important that your surgeon oversees the whole distraction process.

Rgds,

F

[mediocre]

Thank you, sir!

This is a good question. The beauty of precice is...

Rgds,

F

[Cooper]

Dear Doctor,
I will be most likely to come alone. Do I need to hire a care taker or the package cost includes the helper?

Some of the precise patients have reported precise not distracting at the rate it supposed to and therefore they have premature consolidation. If similar occurrence happens how much it would ost for second osteonomy?

Thank you sir!

[Cooper]

Dear Dr. Birkholtz,
Also, one of the precise patient had to cut his journey short because risk of severe nerve damage. He only lengthen ~3.5cm on femur. It took years of effort to saved up the money and now regrets profoundly having this done.

Could this be prevented early on or the course can be changed with surgery? I am very nervous and loosing my sleep over this.

Hoping to hear from you soon.

Thank you,
Cooper