I just created this account to write down my experience in CLL with Franz Birkholtz here in South Africa. I created a second account for privacy issues, although I’ve barely commented with the other one (2 times).
I had no interest in creating a diary, but since I got so much info from this forum and to give credit to the great work of Franz, I’ll just try to keep it updated. I warning you that this won’t be a diary of everything is going perfectly, don’t go to any other doctor, the only savior is Franz… etc. I’ll write everything as it is (although so far it’s been great regarding the doctor), so you can choose your path and doctor with more info, but don’t forget: THIS IS A SERIOUS SURGERY.
About me, I’m a man in his 20s into 30s from middle Europe. I also work in orthopedics, although I don’t have much experience with LL, maybe 1 or 2 cases. But I knew very well where I was going with this and how much I’m risking. I left my job in order to have all the time I could need to recover from this. Complications may arise, and if I don’t have a deadline it will be easier to commit to my recovery.
Unlike most of the guys in the forum, I’m not a male model, or have incredible facial aesthetics or was a machine with girls. I was just an average normal guy really short for my country. My height was around 163.5-165 cm, I don’t know exactly. My ideal plan would be to get to 172cm with this surgery, or as close as possible, and if I have the endurance/money and my body can tolerate it, get another 3-4cm in tibias to reach an average height of 175cm. However, I go step by step and I’ll just do this surgery as best as I can, time will tell what happens next, I’m not thinking about it now.
Regarding Africa, it is really similar to Australia, if you’ve ever been there. Like, if not because there is a lot of black people around, I could say I’m in some Australian village. Quite surprising for me. It seems the country is quite dangerous with all that crime, but Dr B team will always pick you up from your home to the hospital, and also the house is in a secured area, so I’m always “safe”.
Also, especial mention to Tessa, who does the admin for dr B. She’ll help you with absolutely everything, from admin, to house equipment, to initial groceries, to occasional transport… She really does a lot for me and I can’t be more grateful. If you send an email to the reception of dr B, she’s probably the one that will take care of it.
So going to the surgery, I had bilateral femur lengthening with precice 2 on February 12th. Doctors told me that the surgery was a success and went really fast. However my right leg had a lot of bleeding and for the first days in hospitals was really painful and difficult to move (I gained 6kg between the nails and the swelling). I was discharged from the hospital when I was able to move and transfer by myself on the 24th and got into the house Franz’s team had found for me.
During the first few days it was really painful, especially with all the swelling, but thankfully I was really well medicated and it could be controlled. I did physio 2 times per day during my time there. The physio was really gentle regarding my mobilizations and stretchings, but everything related with transfers was painful as hell.
The hospital is really nice and for the Europeans standards, it’s even better than a lot of hospitals I’ve worked in. You don’t expect something like this when you think in Africa.
The house that the dr found me is also quite big for myself (2 big bedrooms) and has all the commodities I may need, fridge, oven, microwave, TV… I even have Apple TV, which I have no idea what it is, but I’ll find out lol.
Birkholtz’s team is really nice and they’ll treat you incredibly. When you get here you get to know the phychologist, the occupational therapist, phyisiotherapist, orthopedist… Quite a big team and they all take care of you. Doctor himself is a really nice guy who will do everything he can to help you. You soon realise when you get here that they don’t need this CLL and they don’t get much money from it with all the expenses they have, he’ll do it mostly to help you. The practice is incredibly busy with a lot of patients coming and going and A LOT of surgeries every week. Seriously, it can be hectic here sometimes. However, I’m seeing Franz quite a few times per week and he always answers my email quite fast.
I also have physio every day since I live the hospital, although we’ll reduce it to 3 times per week from next week because my flexibility is really great and I don’t need it that often. The physio is really nice and really good, I know a lot of physios due to my job and I can tell you, she’s one of the best I’ve met. I’m really thankful that she’s doing my physio. Sessions are normally about 30-60 min with a lot of stretchings. Yesterday I did stationary bike for the first time, I felt no especial pain with it.
As for pain, maybe I’m one of the unlucky ones, but since day 3 of distraction the pain started to rise, being unbearable on the 5mm mark. It went up to 9/10 (I would even say 10/10) and it stayed like that for about 20h, even with all my drugs on, including oxycodone. Seriously, an absolute nightmare. From there the pain has gone down when I do the lengthening to 3/10 in my femurs. Tomorrow I’ll reach 1cm of distraction (although I gained more due to the lengthening of the surgery).
What really bothers me is what it seems to be nerve pain in both legs. Both my tibias burn like crazy all the time, from my knees to my feet. It’s a pain that never stops, sometimes it’s quite high (8/10) and sometimes a bit less (4/10), but NEVER stops. It doesn’t matter which medication I take, what exercises I do, what postures I take…. Pain never stops, and it’s starting to drain me. Today is the second day I’m taking Lyrica to see if the pain goes down.
Regarding sleeping, due to the constant pain I never sleep more than 1-2h before waking up because it hurts. So I just do small naps through the day, mainly after taking the oxycodone, which allows me to sleep around 2h. I’d say I probably sleep around 6h per day discontinuously.
Also dr B and his team will offer you to drive you to some malls or something so you won’t go crazy after 3 months here. And although I’m really grateful, at the moment I’m just thinking in suffering alone all this pain in my bed, where I’m 99% of the time if I’m not at the hospital. But we’ll see if this pain ever goes down.
I hope this really long post helps someone. If you have any questions please feel free to ask me here or by PM (I prefer here so everyone can read it), I’ll try to answer you as best as I can. Also if I see there’s interest for the diary, I’ll keep it updated.
Bilateral femurs with PRECICE 2. Dr Franz BIRKHOLTZ. South Africa. Feb 2016
Hi Nightwish, I'll try to answer all of your questions.
Regarding flexibility, I truly believe it depends on your genetics. It can be improved yes, but a lot of it depends on your own body. If you want to improve it you just need to do the basic stretchings every day, like 30 min per day or something. However I don't think you need to be super flexible to do this. Right after the surgery I was tight as hell because of bleeding and trauma, like not even 80° of knee flexion, so I had to start stretching like crazy again.
There is no other cosmetic patients here atm, there was one supposed to be coming, but he cancelled they told me. You'll be quite often in the hospital, so you can talk with whoever you want. You'll see other patients with externals, arm lengthening... Etc over there, you can just talk to them if you want.
There is no gym here in the accommodation, but you can get one with it, dr B let's you choose your budget, I'm going with the cheapest one. I have everything I need, but not gym stuff. Although I don't think you'll need anything special, I mostly do stretchings and I'm planning to get a floor pedal or something (an stationery bike is too expensive).
Since I'm under the weight limit of precice (34kg per leg), I can stand fully weight bearing on my 2 feet. For walking I need the walker, since I can't put all my weight in 1 leg when doing the step.
I also paste here another answer to a private message I got. Hope it helps.
"Hi XXXX, he said we would aim at least for 6,5 which would be a safe limit. If by then my body can take more (I was REALLY flexible), we'll do more. I've been thinking about the surgery for a long time, some years by now, and I've always hesitated about doing it or not. It's early to tell you if I'll regret it, but I can tell you I don't regret going to Franz. I also work in the same field and I can tell you he is an incredible surgeon and greater person. Seriously, if he worked in EU/US he'll be between the 3 top doctors. Sadly no-one wants to come to Africa"
Best regards
Thank you all for your questions, I'll try to answer them all:
Nightwish. Regarding the price, you should ask dr B directly, since the exchange market is changing all the time and it greatly affects how much you'll pay depending on the currency. For example since the last quotation he gave me, there were times when I would pay around 37k € and 10 days later over 39k €, which is pretty crazy. It all depends on the rand (ZAR) and your currency value at that time. I paid about 39k € ay the end, which were about 42.6k USD. But as I tell you, just ask him directly, since he knows better how much the nail is going to cost (which is most of the price of this).
Regarding the accommodations, it depends. You can have super super luxury guesthouses for about 2k rands per night or more normal guesthouses for 600 rands per night, which are still luxury accommodations for my european standards, remember that here you'll be in the upper class (and safest) no matter what. And then the cheapest I believe are the apartments/houses, which are normally around 10k-12k rands per month, again, it depends on availability at that time, since dr B will find the best place just for you on demand so it fits your demands. I would recommend you to save for one of the guesthouses, since you'll always have someone at the reception and cleaning service, I just didn't have enough money for it. I give you the rand price so you can easily convert to your currency.
For the price of complications, I don't know since I haven't faced any major problems so far, but I'd recommend you to come with 4-5k extra usd/eur just in case. Franz can give you more details if you need it. Remember that you have to eat also, and food is quite expensive here (about same price as Europe atm). Internet is also quite expensive, I paid around 120€ for 50gb for those 3 months.
My flight back home will be the 10th May, just 90 after my arrival, which is the length off the tourist visa for my country. They made me the visa here at customs the day I landed, but check about your country before coming here. I'm supposed to length at 1mm per day for the whole 90 days if I can handle. If my body allows it, we will also try to do 1.3mm per day in order to finish early, but this is just speculation so far. And thank you, I also hope this nerve pain will stop because is driving me mad.
Hyong. I started with 1mm at once, in just one session for the first 5 days, but pain started to get impossible to handle, so we changed to 0.5mm twice per day. Now I'm currently doing 0.33m 3 times per day. During surgery they also test the nail, so you will probably get 1-2mm, but because at the beginning it needs to get some tension to pull apart the bone, you can't know exactly how much you gained During surgery. When I had done 6.5mm my xray showed around 8mm distracted, so you can't really rely on that small distraction.
SAD. I'll post a pic of the hospital and a video of me doing bike, as soon as I learn how. Are you talking about any specific pictures?
53Dude. I've explained my pain from 0 to 10 at every moment of the process, you can go to the pain part in the post. Please read the original post before asking that. Anyways now I'm at 5/10, I'll just do the infernal machine now and let's see how it goes
Ouroboros. ITB release was performed during the surgery, he spoked to me about it in the consultation and we agreed that it would be better to release it to avoid further problems (it's a pretty simple surgery)
Mediocre. About the visa, they told me that they would help you get a medical visa if you need to stay longer. But since that is not an option I will ever take, I did not ask any further. You should ask dr B about it, although he will not stop your lengthening just because of time reasons, he told me that
Yagen. You are lucky to have no pain. I also think unilateral lengthening is way easier to handle, like, my left leg is almost painless, but the right one that got the bleeding... Jesus, 90% of my pain comes from that leg. As for sleep, try oxycodine, normally after taking it it knocks me out for 2h, that's why I sleep in 2h fractions lol
I'm yet to discover how to upload photos and videos
There you go, if you want anything specific let me know and I'll see if it's doable.
Hospital main hall
Some South Africa rands and chips (I found it interesting lol)
The PRECICE machine I use for distraction
My active knee flexion and scars
http://imgur.com/a/b1isE
The video thing seems more complicated, I'll look at it, but it's just me using an stationary bike, nothing impressive lol
EDIT: Images are huge, how can they be made smaller? Some admin can give me a hand? I'll just link the album so you can see them smaller until someone explains me how to make them smaller here
Ouroboros. Notes are quite funny for me coming from Europe, looks like monopoly money lol. Regarding the ITB release, no, I paid no extra money, dr B performs it routinely for bilateral precice as he told me.
Regarding the extended hospital stay, I prefer not to disclose it, since dr B will adapt to each case and for respect I prefer not to tell the arrangements we've done to that regard. Unless he himself wants to make it public if he reads this. Sorry about that. Anyways as I told you just have a couple of thousands if complications arise, you don't want to have no money with a serious complication!
I have asked Franz about the stationary bike yesterday actually, I'm still waiting his response, I'll write here what can be done. I couldn't find anything in the internet (if you find anything please let me know too).
Dingo. That's gonna be a compromising picture... But I'll see what I can do tomorrow. Bear in mind that there's still bruising around some scars.
The only viable option I'd consider in Europe would be Guichet, I truly don't think the other doctors are top level doctors or safe enough (like Betz's rate of complications). I was actually in contact with Guichet at the very beginning, when price was around 45k euros, but soon after he changed it to 60k without warning, and that's an amount I couldn't pay. So the only viable option, looking at safety and quality, was dr Birkholtz. I would never accept something worse for internals like India, Turkey and so on. Besides, Precice is considered the gold standard for femur lengthening (drG nail is limited to himself), so I was not going to risk my health with anything worse. Additionally, I'd never go to Paley since I can't be near god-like orthopaedic surgeons, I'm surrounded by too many of them every day at work.... (and he costs a fortune).
I'll just try to sleep for today, this f*cking pain is driving me crazy. I hope it'll stop at some point, or just give me a break...
Thanks for the interest guys. I continue to be pain free, just a bit of pressure in my left quadriceps after second distraction today. Let's see how it goes with the other 2 which are normally harder.
Ppatient. Yes, Birkholtz is indeed a really good option, I truly think so, and I have no interest in promoting him or something either, it's just what I believe (otherwise I wouldn't be here).
As for the money, as I said I paid around 39k euros for the whole thing, but again, due currency exchanges you'll have to contact Franz for an specific quotation, it can vary a lot from one day to the other. Then you have to pay your food, internet and other expenses that are obviously not related to the surgery. I don't know how much it would cost to live here for 2 months, food is pretty expensive, so I'd say maybe 300-400 euros per month. As soon as I'm finished with this I'll post the total cost. You have to count also the flight here (Johannesbourg), whose price changes a lot depending what country you come from. From central Europe, I saw prices ranging between 450€-900€.
Krp1. Thank you! Yes my flexibility still remains good, but it's nowhere near where it was. I was able to do straight leg raise to about 100º, now I'm lucky if I get it to 75º-80º. I'm just at 1,5cm or so, so I expect it to drop a lot more going forward in the process
Just a quick update. Today it's been exactly a month since my surgery (12 feb). I feel stronger everyday and much more mobile, I'm getting my agility back. Pain remains at zero or almost zero 95% of the time. Just the last distraction of the day is a bit painful. These new pain medications are just incredible. No problems at all for sleep if I skip no pills. However, miss just one pill and pain will be back hindering you to sleep.
Today I reach 2cm of distraction. However, my flexibility has dropped a lot in the last 2-3 days, becoming increasingly harder (and painful) to stretch my muscles. Although I was really flexible before surgery, now I'm getting really stiff. I guess it's normal to be less flexible when your femurs are 2cm longer, let's see when everything is finished.
Another update. Pain just came back, and it came badly. My left leg is super painful now, my ITB burns like crazy and is limiting my knee flexion all of a sudden (paired with my harmstrings). My mobility and strentght is really good, but this ITB/hamstrings/nerve pain... is draining me again. At least I have no problems sleeping yet
Anyone with experience with this ITB pain can give me any advice?
Thanks!
Thank you all for the answers.
Ouroboros. Dr B hasn't said anything yet. I sent Ann email but he's aout of the country this week, so he didn't answer. I'll see him next Tuesday (monday is public holiday here). I don't know if it's normal, that's why I ask here. I would expect an ITB release to make easier the lengthening of that structure, not the opposite. I emailed dr Delange, his partner, and he told me that there's nothing we can do besides stretching.
TRS. Thanks, I see I'm not alone, the pain is exactly as you described it. I didn't suffer this before, but it just started with the second month. As for dictraction, I'm doing 1.33mm per day and 1mm every other day, in 0.33 intervals. I'll ask Franz when he comes back what he thinks. He also knows about the nerve pain, he didn't think it was important at this stage, so he gave me Lyrica and a muscle relaxant. Pain then stopped completely for about 5days and then came back this week.
Yagen. Thanks buddy, I hope after 3 gets better, I'll be there by the end of the week I think. I can sleep perfectly, just waking up every 3 hours to take my medication (I set an alarm), but sometimes they just knock me out for 6-7h . I would actually say that I'm sleeping now better than before surgery, when I woke up 5-6 times per night. Might me the tiredness or the medication, I don't know. I'm not taking any medication for my sleeping.
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