Is my plan possible? Please give me an advice

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I want to take a year off for CLL, Dr. Koehne (Munich) who I consider does it preferably two staged (first one leg and then the other) in order not to end up in wheelchair which I don't want either,

since I plan to do 10cm (femur and tibia, each 5) I wonder if that's even a good plan or a complete nonsense, what do you say? Or should I do femurs first, pause and do tibias later? That might be more expensive too because of the additional surgeries

Initially I thought about doing femurs with precise and then tibias with externals but I can't imagine being done with that in only one year...or is it possible?

Please give me some advice, since I want to do the surgery this year.

(I think Dr. Koehne has learned from Dr. Baumgart but the latter is much more expensive and also recommends to do it in two stages)

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Thank you for your answers:)

@Android: Dr. Giotikas sounds like a very good option! I will read into it:) I might even have 15 months. He is affordable, too. Munich costs 80.000€ in comparison but there I wouldn't have to pay hotels since I'd live there, too... I wonder how much Athen costs... and how long I should stay there to be on the safe side? The advantage of Germany is that I'd have my family with me, my mom could take care of me for almost the whole process. Well she could be in Greece in the beginning..I might be allowed to go back to Germany for some time of the lengthening..

I found this quote on their website...well Dr. Birkholtz and other members said that externals are better for tibia, here the greece doctor says they recommend precise 2 for tibia..but what about the knee pain?
QuoteWe routinely suggest the tibia PRECISE 2 nail when lengthening of the tibia is contemplated. Only in cases where an intramedullary nail is contraindicated (i.e increased risk for pulmonary embolism, patient not deemed compliant for weight bearing restrictions, need for concomitant correction of bone deformity, patient not willing to be restricted in weight bearing) we recommend the use of circular frames.

@Racurz:I'll start a diary when I start my journey

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Quote from: Android on April 29, 2018, 11:27:43 PM The downside is that while his credentials seem good, there are no patient diaries for Dr. Giotikas. If you look around you'll find information about him as he's a non-cosmetic orthopedic surgeon as well. Just an FYI.

That is true indeed. I'll google his name searching for some reviews..because even though there aren't any patient diaries here concerning Dr. Koehne as well, there are a few reviews on the internet outside this forum. Unfortunately you never know if they are genuine.

I noticed that PT is included:) Tomorrow I'll write him/his staff an e-mail soon with some questions.

For example:

- Why do you prefer Precise 2 for tibia although permanent knee pain is linked to the nail insertion? Are externals not safer for tibia?

- How much does MESKA (Mediterranean rehabilitation Centre) costs for a patient monthly or if he/she wants to stay for about 3 months?

- Are there accessible (not too expensive) places you can recommend close to your clinic for patients or their family members?

- How fast can I get an appointment for consultation and surgery?

- How long should I stay in Greece if I want to lengthen 10cm in total. (Either femur and tibia with Precise 2 or by cross-leg lengthening) and is it possible to fly to my home country (Germany) inbetween?

- with which method will I be able to walk normally sooner?

- How many CLL patients do you operate per year?

Are these too many questions? I might just get a short answer like: "all these questions will be answered during consultation" Should I ask something different? Any suggestions? If I get an answer I'll post it here

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@ Honore: here's their website http://limblengtheningsurgery.com/
I think they use precise instead of precise 2 otherwise it would have been mentioned somewhere...

What's the difference between precise and precise 2?

80.000 compared to 54.000 is a big difference though. The re's even more included in the price with the latter. Like PT for 10 weeks, walking aids...and my surgery wouldn't be in August which makes it cheaper to live there...on top of that you'd have to pay PT afterwards yourself and 80.000 is rather my maximum level

Anyways I asked Dr. Betz if they offer externals for tibias since of the risk of long term knee pain, but Mrs. Betz only replied that in all their 17 years they only used internals and that they supposedly never heard of any patient having long term knee pain and she said she doesn't recommend externals for tibia because of reasons like: infection risk and less aesthetic

Dr. Birkholtz says the opposite..I don't know who to trust

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@Honore: I'm 1,60m and no I don't smoke

so I got my answers kind of... I sent my questions yesterday (On Mon, Apr 30, 2018 at 5:38 PM) and they responded today at 07:47 AM (that was sooner than I expected.)

1.   How long do you have to wait for an appointment (consultation and surgery)?
You can see available dates for online consultations and consultations at Mediterraneo Hospital in Athens by clicking here. Generally the waiting time is approximately 2 weeks. For surgeries, we plan at least two months in advance. The shortest available surgery date for you, would be on 5 or 6 July 2018 and then in September.

2.   Do you recommend staying in Greece for the whole lengthening process or is it still safe to travel back to Germany for consolidation?
We require that patients remain in Athens during the lengthening period only, but we allow them to return back home during the consolidation period. We provide a detailed schedule for physio, online consultations and x-rays for after their repatriation.

3.   I am interested in the cross-leg lengthening method. I have read from another doctor that by doing externals for tibia the risk of permanent knee pain (due to the nail insertion and removal) is lesser. Why do you recommend the Precise 2 for tibias?
Cross-leg lengthening is in our opinion the best strategy for patients aiming for more than 8 cm of lengthening. Anterior knee pain is a rare (less than 3%) risk of tibia nailing; even when it happens it tends to improve gradually. We offer the option of Precise-2 in tibia for patients who do not want external ring fixators.

4.   Does it make a difference concerning the duration of the healing process which method someone chooses?
No, it doesn't.

5.   I am 1,60m how long would it take for me to walk normally again if I aim about 10cm more?
For 10 cm of lengthening in two stages with cross-leg lengthening it will take approximately 9 to 10 months to walk without walking aides. During all this time you will be able to walk independently with crutches and full weight bearing on the leg that has the ring fixator frame.


6.   How many CLL patients have you had so far?
Dr Dimitrios Giotikas discusses all questions about his clinical experience, including the volume of cases, during a free introductory 15 min consultation via Skype or phone, which you can book now.

7.   I have read about MESKA (Mediterranean rehabilitation Centre), how long can you stay there and how much does it cost per month? Are there inexpensive places a patient can stay safely close to your clinic?
MESKA costs approximately 200Euro/day but includes full board meals, hydrotherapy, daily physiotherapy, transportations etc. There are indeed  inexpensive options for accommodation (hotel rooms and Airbnb apartments) near to our clinic.

What do you think about the answers? I don't understand why they couldn't tell me straight away about the experience of Dr. Giotikas..

And is a rehabilitation place worth thousands of euros for months ? For how many months/years does someone need PT after surgery? (if you do like 10cm) You have to consider those costs, too..

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Android asked them like a year ago about their experience and they told him a number and "confessed" that from that number there are a only few CLL. They were honest with him at least...

Either way I asked them other questions and they responded:

Thank you for your email. Answering to your questions:

1. With bilateral TSFs for 5cm lengthening in tibias the estimated time for frame removal is 4 to 5 months. You will be able to walk with the frames and with full weight bearing since immediately after your surgery.

2. With bilateral Precise-2 nail for 5cm lengthening in femurs the estimated time for walking without crutches is 4 months. Until then you will need to use wheelchair and walker or crutches. The same applies to tibias with precise nail, but tibias may take a bit more until walking without crutches (4 to 5 months)

3. I don't expect that your proportions will look strange after lengthening the tibias and before doing the femurs. In any case,  we use Athena Method -a method developed and presented by Dr Dimitrios Giotikas- to accurately inform our patients about their proportions before and after the lengthening. So,you will know exactly, how each cm of lengthening in tibia and femur is going to affect your body proportions.

We remain at your disposal for any further information and assistance.
Kind regards



First of all they seem very friendly and thorough, Dr. Pili himself answers friendly too but much shorter and left one question out. What's also weird is that for the same amount of length (5-6cm) Dr. pili needs 7-11months with HEF while Greece says 4-5months with TSF. Ist that possible ?

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Quote from: Honore on May 01, 2018, 09:14:53 PMGreat post...thx mate.. If I choose this clinic I would look for fellow LL-ers to share an apartment and a caretaker. It should cost less than 200e/day.

When do you plan to do this?


instead of doing cross lateral I prefer doing tibia or femur first and then later the other segment because I want to overcharge my body. You never know how this affects your mind.

That's why I also contacted Dr. Pili ( I posted this in another topic, too which was specificly about Dr. Pili but since this is "my" topic I want to share my thought process)

1. Is it possible to get an surgery appointment by the end of August or in September?
2. Do you recommend (for safety reasons) to stay in Italy for the lengthening and consolidation phase?
3. If I aim 5-6cm how long does it take until the frames come off?
4. What location do you recommend for me to stay a few to several months that are not too expensive (less than 500/month) and not too far away from an airport?
5. How much PT is needed and how much does it cost?

His answer: You can have indeed 5-6 cm with HEF on tibia, it should take 7-11 months.
You can have an appointment with me in August-September.
http://drpiliortopedico.it/bookings/ for bookings

You can stay in Italy in Lecco for as long as you like. There are apartments you can rent for around 500 € and we will help with visa.

The surgery costs 19-20.000 €, if Achilles tendo lengthening is needed (80% chance) it will cost you around 4500 €, for frame removal another 3500 €.

Here another mail
Dear Dr. Pili,
 
thank you very much for your fast response.
1.   I will soon book an appointment. How long after consultation do I have to wait for surgery?

On your webiste it’s stated that consolidation for 8cm is about 5-6 months:
„Usually it takes around 100 days for lengthening up to 8 cm and 5-6 months to achieve a full consolidation.“  Why would it take longer for less cm?


2.   Do I need visa as a German citizen if I want to stay for multiple months?


3.   Is the Achilles tendo lengthening risk percentage the same if you do 5cm or more than 5cm?

His answer
Usually after the consultation around 2-3 months but sometimes I can offer some last minute spaces.
Consolidation time is pretty much the same for 5 or 8 cm.
A german citizen can stay as long as he wishes without a visa.
For ATL, lengthening 5 cm is around 40-50%.


So what striked me is the difference concerning healing time Dr. Pili (7-11) and Greece (4-5). I asked the Greece doc  why consolidation is shorter compared to other doctors with HEF. I'm waiting for their answer now. What's also interesting is that Dr. Pili didn't answer my question, why on their website sth about 5-6 months is written and he tells me via email sth about 7-11 months...I have contacted Greece again with more questions (like if there are extra costs if Achilles tendo lengthening is needed) and will post them here as soon as they answer. So far Athen is more appealing. But the big contra is that there aren't any reviews in English at least. There might be some in Greek somewhere on the internet though 

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@Honore: yes I would start ideally in September..you're lucky that you're already 1,65 Being 1,75m someday is great for you! I haven't considered Monegal..there are so many doctors, I concenstrated on German doctors first and now I gradually explore others. Did you? Yes I also hope for Precise 3 in the future. Thank you! If you're ever in Germany let me know, too.

So I had another e-mail exchange and I think I will decide for Greece...they just sound more reliable than Pili in terms of safety..(for example while Pili does ATL 80% of the time, they don't and Body Builder as a LL veteran warned of ATL)

1. Other doctors say that often times Achilles tendo lengthening is necessary. They charge you extra money. How is that handled with you? And is the frame removal included in your price?
Thank you for your email. Answering to your questions:
We do not do Achilles lengthening as it almost always results in some degree of permanent loss of strength of the calf muscles which patients feel as weakness during their walking or their standing on their toes. In our opinion it is not a "fair trade" to trade function for lengthening. If equinus deformity (ballarina foot) is encountered, we treat it with a temporary extension of the frame to the foot during the lengthening phase. This method very reliably stretches the tendon and restores the position of the foot. It is a rather minor procedure, which is done as a day case, but it requires anaesthesia and extra frame parts so there is an associated additional cost of 1000 for one leg and 1500 for bilateral done simultaneously. The need for this procedure will be assessed before your main lengthening surgery. The frame removal is not included in the price as many patients choose to have them removed in their country rather than traveling back to us. The cost for frame removal with us is 950 Euro


2. Is the 4-5months recovery with TSF an average because with HEF for example I was told that they take off your frames 7-11months later.
The timing for frame removal depends on the  lengthening goal, patient's age and healing rate.The numbers mentioned is an average (plus/minus 6 weeks).

3. Do I need some kind of VISA for staying multiple months (4-5months) in Greece as a German citizen?
For 5 cm of lengthening, we need you to stay in Greece for a minimum of 2.5 months. Greece is a member state of the EU so as a German citizen you do not need any special Visa or residency status and you can stay for as much time as you wish.
We remain at your disposal for any further information and assistance.

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I did book an appointment for next month (6th of June). (Is a consultation actually required for a surgery?)

Whoever wants me to ask Dr. Giotikas some question just let me know. And are there questions I should ask him definetly to test his reliability?

My flight was about 100€, there was even one for 50€. To avoid the high prices I should do the surgery after August, maybe even October? What do you suggest?

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@myloginacct: Thanks for the link! I have almost watched the entire video and I noticed that either it was a coincidence or Dr. Giotikas quoted Dr. Paley when he said that it wouldn't be a fair trade to loose function for lengthening by doing ATL (in one of the mails).



@Honore: I have read on their website that one face to face appointment is required before surgery. I will ask him about Precise 3 next month. I sent an email yesterday about the cost and what I can expect. They'll probably answer tomorrow and I'll post it here.

I'm studying already and I'll take a year off. There is a risk but I also know that if I won't do it now I'll be unhappy whenever I go out and others talk about my height like one time when I was 18, the owner of the bar wanted to see my   ID, he looked in surprise and said loudly that because I am so small he thought I was 14 (I think he wasn't happy with himself either, because confident people don't treat others like that) . That was pretty humiliating since everyone else could hear him.

 I hate waiting in front of a club with my friends because one time I felt good at that day, confident but the bouncer just looked at me from distance instead of looking at my ID he said that he won't allow me to go inside. Only after some time he looked at it and I could go in. After that my confidence was gone again. That was embarrassing. And there are plenty more stories, especially when you're young you want to go out a lot but I avoid these situations because of incidents like that.

I agree some people just look young even when they are taller. My friends at least say I look my age..and whenever I meet new people I feel they respect me and think (I was told that, too) I'm very smart because of how I talk and behave. Another time noone asked me for ID, instead other people were asked, although they were a lot taller. Which assures me that it's not necessary my face. And concerning girls, I wouldn't want to date someone who rejects a guy only because of his height anyways. I did have girlfriends or some who were interested in me. One was even taller but I just didn't feel good about me being smaller, I didn't want her to feel uncomfortable some day

Also I'll start with 5cm which I believe is safer. Later it'll be weird to just grow 10cm suddenly. Now I can pretend that I just grew later...