Quote from: chasing_higher_dream on June 23, 2021, 11:23:45 AMThe initial couple of weeks would be tough, but post that you would make good progress.
I wish you the best of luck in your lengthening journey ahead!
Quote from: DonBones on June 22, 2021, 09:32:07 PMGlad to hear from ye
With the surgery done and the first few days overcome, I think the worst is now behind you. It's encouraging that you were able to walk and even cycle. I wouldn't have thought it be possible shortly after the surgery - or perhaps your body adapted particularly well.
Good luck for the next few days 👍🏻
Thanks guys! Much appreciated.
Hi All,
Time seems to be flying. I thought I’d jump in with another update.
CLICKING: I started clicking 4 days ago. The first day was only 7 clicks. The second was 12 clicks. Yesterday and today are both 20 clicks. I think 20 a day is a little high to be honest, and I’ll be glad to go back down to a lower rate after the first few centimetres. The clicking itself has been completely painless for me (although my roommate has had great trouble, so it differs from person to person). Clicking itself is also relatively fast. However, the biggest headache is trying to find the right position and angle. I have had more pain/discomfort from contorting my legs into weird angles in order to get the click. Hopefully things will move quicker with experience. For the clicks, I think 20 in one day is a little too much, and trying to do all that in one go is simply crazy! I have split my clicks into three sessions; morning (7), afternoon (7) and early evening (6). I do stretches before clicking and then a series of walks, star climbs etc., afterwards.
Whilst there is a little tightness, I have found the entire process pretty straightforward and hassle-free; disconcertingly so… I am expecting something to go wrong at some point. Honestly though, if it all continues like this, I will keep extending as far as I can go!
HOSPITAL: I take back everything said about the food in the last post. It is utterly miserable. Whilst the staff are doing their best, the food itself is probably the lowest of all the low points for the entire process. I am looking forward to leaving, simply to not have to ingest this swill!
Otherwise, the clinic staff are great. Super kind and helpful, and the physios are slowly but constantly increasing the amount and variety of exercise and stretch.
PHYSIOS: We started training for an hour daily at the gym from the second week onwards. It is mainly biking and various leg weights (e.g.; leg press, adduction, abduction etc.). The focus is on volume rather than weight, but things have gone very smoothly with that too. None of the exercises are overly difficult or exotic, which gives me confidence that I can continue (and perhaps do even more), once I return home.
GENERAL CONDITION & THOUGHTS: Apart from small gripes (e.g.; food etc.), everything has gone very smoothly! So much so that I am kicking myself that I did not do this earlier (e.g.; two summers ago I talked myself out of it…). Once the operation is done, it is mainly down to you, your body and how much you push yourself. I have always been pretty good at the latter requirements and so have not had much issue. The only thing I am anxious to resolve are the bandages from the surgical wounds. They take forever to heal. Once they are gone, I am happy to leave the hospital and get on with life.
On that related note, I am extremely thankful that Betz offers two weeks of hospital stay as part of the procedure. It is crazy that some let you leave after only four days. Those that do even shorter hospital stays are bordering on irresponsible in my opinion. Everything sounds great and easy when you read forums and listen to interviews, but when you go through the process, you appreciate how tough it is and how unrealistic some of the timelines being given, are. For example, those that say they go a back to work in the first or second week, etc. – that sounds like airburushed Instagram bulls*** to me. For a fraction of a percent of people, that may apply (and even then, I’d have my doubts), but for most, it will realistically be closer to a month before you can consider doing other things in addition to the CLL. This whole process is a big commitment. Make sure you take off the relevant time and don’t overload yourself!
Until the next update!
Quote from: Zatoichi on June 28, 2021, 11:04:35 AMThanks guys! Much appreciated.
Hi All,
Time seems to be flying. I thought I’d jump in with another update.
CLICKING: I started clicking 4 days ago. The first day was only 7 clicks. The second was 12 clicks. Yesterday and today are both 20 clicks. I think 20 a day is a little high to be honest, and I’ll be glad to go back down to a lower rate after the first few centimetres. The clicking itself has been completely painless for me (although my roommate has had great trouble, so it differs from person to person). Clicking itself is also relatively fast. However, the biggest headache is trying to find the right position and angle. I have had more pain/discomfort from contorting my legs into weird angles in order to get the click. Hopefully things will move quicker with experience. For the clicks, I think 20 in one day is a little too much, and trying to do all that in one go is simply crazy! I have split my clicks into three sessions; morning (7), afternoon (7) and early evening (6). I do stretches before clicking and then a series of walks, star climbs etc., afterwards.
Whilst there is a little tightness, I have found the entire process pretty straightforward and hassle-free; disconcertingly so… I am expecting something to go wrong at some point. Honestly though, if it all continues like this, I will keep extending as far as I can go!
HOSPITAL: I take back everything said about the food in the last post. It is utterly miserable. Whilst the staff are doing their best, the food itself is probably the lowest of all the low points for the entire process. I am looking forward to leaving, simply to not have to ingest this swill!
Otherwise, the clinic staff are great. Super kind and helpful, and the physios are slowly but constantly increasing the amount and variety of exercise and stretch.
PHYSIOS: We started training for an hour daily at the gym from the second week onwards. It is mainly biking and various leg weights (e.g.; leg press, adduction, abduction etc.). The focus is on volume rather than weight, but things have gone very smoothly with that too. None of the exercises are overly difficult or exotic, which gives me confidence that I can continue (and perhaps do even more), once I return home.
GENERAL CONDITION & THOUGHTS: Apart from small gripes (e.g.; food etc.), everything has gone very smoothly! So much so that I am kicking myself that I did not do this earlier (e.g.; two summers ago I talked myself out of it…). Once the operation is done, it is mainly down to you, your body and how much you push yourself. I have always been pretty good at the latter requirements and so have not had much issue. The only thing I am anxious to resolve are the bandages from the surgical wounds. They take forever to heal. Once they are gone, I am happy to leave the hospital and get on with life.
On that related note, I am extremely thankful that Betz offers two weeks of hospital stay as part of the procedure. It is crazy that some let you leave after only four days. Those that do even shorter hospital stays are bordering on irresponsible in my opinion. Everything sounds great and easy when you read forums and listen to interviews, but when you go through the process, you appreciate how tough it is and how unrealistic some of the timelines being given, are. For example, those that say they go a back to work in the first or second week, etc. – that sounds like airburushed Instagram bulls*** to me. For a fraction of a percent of people, that may apply (and even then, I’d have my doubts), but for most, it will realistically be closer to a month before you can consider doing other things in addition to the CLL. This whole process is a big commitment. Make sure you take off the relevant time and don’t overload yourself!
Until the next update!
1) Glad you were one of the lucky patients who get to click pain-free. It's one of the mysteries of Betzbone that Betz doesn't even know exactly the reason of. It is likely due to your muscle flexibility in that area as well as the angle of the nail. Your unfortunate roomate will likely suffer for the first 3cm. I personally recommend 10 clicks in the morning and 10 in the afternoon. You won't feel it yet, but clicking at night, will disrupt your sleep once lengthening starts stiffening your muscles.
2) The hospital food is disgusting because it is a very cheap hospital. Most doctors offer 2 weeks of stay, so I don't think Betz stand out from that aspect. The first week is actually where most of the risk lie. I had fast surface wound recovery, but minor iron difficiency due to surgical blood loss.
3) If you continue to use crutches and don't walk dangerously, the only common complication most people see are wide leg / duck ass. They are inter-related, both deriving from weak glutes and tight IT bands. Depending on how much you lengthen, you should find difficulty closing your legs around 2cm, and have visible wide legs around 3cm. You shouldn't see much complication during your hospital stay, though Betz did forget to screw in one of my screws so I had to do a follow-up surgery. Be sure to stretch the bands as much as possible. If it's wide to my extent (60cm), you will need to perform a seperate ITB release, as function recovery through PT is less likely.
Good to read that everything is going well. Still looking for the surgery with Dr Betz as I cancelled it in March but tbh this hospital is just terrible. I asked for the komfort clinic one week ago but they are no longer doing surgeries there... so what you see with this beautiful commercial on the website and what you get when you arrive there is simply a disaster.. but if there is no other choice now.
Are you able to go train in the gym when you want? like for upper body for example ?
Good to know that clicking has been a good experience for you.
For me too, 20 clicks in a day was a bit too much, initially, it was exhausting for me. Doing 1.04 mm per day made my legs stiffer, and was starting to create wide legs.
But since I reduced my clicks to 15 clicks (0.78 mm) after reaching the 2 cm mark, things have been going pretty well. I have managed to reduce my wide legs with stretching and also the stiffness is very well under control.
Now, I am almost around 1-month post-surgery, and the strength in my legs has started to come back and I am feeling good about it.
Regarding, the 14-day stay provided by Dr Betz, I am too thankful for him for this. I cannot imagine travelling back alone just after 4 days or a week post-surgery, it would have been a disaster!
Anyway, you would surely do good, you are in the good hands of Dr Betz.
All the best with starting the distraction phase.
Quote from: chasing_higher_dream on June 28, 2021, 03:02:07 PMGood to know that clicking has been a good experience for you.
For me too, 20 clicks in a day was a bit too much, initially, it was exhausting for me. Doing 1.04 mm per day made my legs stiffer, and was starting to create wide legs.
But since I reduced my clicks to 15 clicks (0.78 mm) after reaching the 2 cm mark, things have been going pretty well. I have managed to reduce my wide legs with stretching and also the stiffness is very well under control.
Now, I am almost around 1-month post-surgery, and the strength in my legs has started to come back and I am feeling good about it.
Regarding, the 14-day stay provided by Dr Betz, I am too thankful for him for this. I cannot imagine travelling back alone just after 4 days or a week post-surgery, it would have been a disaster!
Anyway, you would surely do good, you are in the good hands of Dr Betz.
All the best with starting the distraction phase.
Thanks dude! 12-15 clicks a day sounds perfect!
I look forward to tracking your progress!
Quote from: Johnp86 on June 28, 2021, 02:06:09 PMGood to read that everything is going well. Still looking for the surgery with Dr Betz as I cancelled it in March but tbh this hospital is just terrible. I asked for the komfort clinic one week ago but they are no longer doing surgeries there... so what you see with this beautiful commercial on the website and what you get when you arrive there is simply a disaster.. but if there is no other choice now.
Are you able to go train in the gym when you want? like for upper body for example ?
Yeah, nothing to be done. Stryde will likely take longer than they are saying. Betz is also extremely in demand at the moment, from my conversations. Opportunities will be hard to find - take it when they come.
For the gym, I think normal oppression would be free use. But because of pandemic, they are strict with numbers and sppointment times. We haven't been able to get access outside of our slots. It's pretty busy...
Quote from: SirStretchAlot on June 28, 2021, 12:21:50 PM1) Glad you were one of the lucky patients who get to click pain-free. It's one of the mysteries of Betzbone that Betz doesn't even know exactly the reason of. It is likely due to your muscle flexibility in that area as well as the angle of the nail. Your unfortunate roomate will likely suffer for the first 3cm. I personally recommend 10 clicks in the morning and 10 in the afternoon. You won't feel it yet, but clicking at night, will disrupt your sleep once lengthening starts stiffening your muscles.
2) The hospital food is disgusting because it is a very cheap hospital. Most doctors offer 2 weeks of stay, so I don't think Betz stand out from that aspect. The first week is actually where most of the risk lie. I had fast surface wound recovery, but minor iron difficiency due to surgical blood loss.
3) If you continue to use crutches and don't walk dangerously, the only common complication most people see are wide leg / duck ass. They are inter-related, both deriving from weak glutes and tight IT bands. Depending on how much you lengthen, you should find difficulty closing your legs around 2cm, and have visible wide legs around 3cm. You shouldn't see much complication during your hospital stay, though Betz did forget to screw in one of my screws so I had to do a follow-up surgery. Be sure to stretch the bands as much as possible. If it's wide to my extent (60cm), you will need to perform a seperate ITB release, as function recovery through PT is less likely.
Thanks for the advice. I switched up the numbers during the three slots. Still, whatever way you do it, 20 leaves you exhausted.
Yeah, I've been pretty happy with purges. I can't see anything going wrong as long as I start careful. I'm not looking to take risks like walking without crutches, or doing silly exercises. Slow, steady progress is enough!
Hi All!
Time for another update I think.
Clicking/Lengthening: I am now ~2 cm into lengthening and it has been over 2 weeks of clicking (over 3 weeks since the surgery). The clicking rate has been pretty fast and I’ll be glad to decrease the rate in another week or so. There is always an annoying stiffness and soreness that is impossible to shake at this higher clicking level. On the odd day that I’ve done fewer clicks, I feel much freer and have better range-of-motion.
These first couple of weeks of clicking have also been very rough. Like with most others patient diaries, the clicking mechanism has been very tricky to master. Because the leg dimensions are constantly changing, the angle, orientation etc., required for each leg shifts daily. Thus, there is a lot of trial and error involved. While I still have not had any great clicking pain directly, unfortunately, the effort, time and constant testing required to get the correct clicking configuration often leaves your leg feeling like tenderised chuck meat, before you can start clicking. It is agony! This was the reason for some of the slower days. Those were also the days when I rued the loss of the Stryde nail the most – automated lengthening simply makes more sense! Manual clicking is a headache. Next to the requirement of a fully weight-bearing internal nail, I would recommend to future LL’ers that automated lengthening be the second most important factor in any decision-making process. Unfortunately, there is no other nail that offers such a combination currently.
Despite all the setbacks, I feel like I have finally gotten to grips with clicking and now am both regular and progressing well with my lengthening progress. However, now that getting the clicks is no longer an issue, another fear has taken over (there is always another fixation that replaces the first during this CLL process) – that of accidental clicks and a potential runaway nail! I know such an outcome is rare, and I plan to be super careful going forward by decreasing clicks etc., especially as I get to the longer lengths, where accidental clicks become more prevalent. Still, the fear is always lingering in the background… I hope it doesn’t happen.
Apart from the clicking however, everything else seems to be progressing smoothly. I feel good, sleep is not really an issue for me (although other housemates are having problems), and my general physical state also feels good (although it is still very early, so nothing is expected at this stage). Whilst I was expecting to lose a lot of weight during the process, it feels like I have barely lost any! Perhaps that will come later.
Germany/Guesthouse/Physio: I have stayed in Germany for a further two weeks beyond my initial two week hospital stay. I initially intended to stay a month at the guesthouse, but I am happy with how things are progressing as well as my general shape. And I am confident enough to return a little earlier. Also, I am quite keen to get out of the CLL bubble. While everyone is super nice and the environment is great for getting the lengthening done, I feel I am going a little crazy just obsessing over this one aspect of life. I am looking forward to getting back to real-life.
I have stayed at the guesthouse (Elke’s). It is a good set-up, with all meals, washing etc., included such that you can fully focus on training, lengthening, etc. Also, there is a wealth of knowledge that can be shared by both Elke and the other LL-housemates, to help with the lengthening process. For example, I am across a much easier method of clicking that really helped to speed up my output and minimise muscle irritation. However, for those that don’t want the guesthouse, staying at the local hotel (Park hotel), is also an option that several patients have taken. The benefit of that is that you get access to all their fitness facilities, which may be useful for those wishing to push themselves a little more with physio.
Speaking of physio, I strongly recommend those going with Dr Betz to stay for a week or two beyond their hospital stay. Whilst the physios at the hospital are good, they are very much generalists. Once you leave the hospital, you start with a different physio (Peter), who is a CLL specialist with over a decade of experience dealing with patients. Like with most things in life, there are levels to everything. Peter is fantastic and the stretches/exercises he gives are extremely useful and precise in helping deal with the specific issues that will be encountered at different stages of lengthening. He can also advise on what to expect in the next stages, and how best to try and combat the issues. I cannot recommend him highly enough! It is worth staying just an extra week to get this experience/knowledge.
I hope this is useful. I’ll keep (irregularly) updating things as I go and as things develop!
Quote from: Zatoichi on July 11, 2021, 04:42:43 PMHi All!
Time for another update I think.
Clicking/Lengthening: I am now ~2 cm into lengthening and it has been over 2 weeks of clicking (over 3 weeks since the surgery). The clicking rate has been pretty fast and I’ll be glad to decrease the rate in another week or so. There is always an annoying stiffness and soreness that is impossible to shake at this higher clicking level. On the odd day that I’ve done fewer clicks, I feel much freer and have better range-of-motion.
These first couple of weeks of clicking have also been very rough. Like with most others patient diaries, the clicking mechanism has been very tricky to master. Because the leg dimensions are constantly changing, the angle, orientation etc., required for each leg shifts daily. Thus, there is a lot of trial and error involved. While I still have not had any great clicking pain directly, unfortunately, the effort, time and constant testing required to get the correct clicking configuration often leaves your leg feeling like tenderised chuck meat, before you can start clicking. It is agony! This was the reason for some of the slower days. Those were also the days when I rued the loss of the Stryde nail the most – automated lengthening simply makes more sense! Manual clicking is a headache. Next to the requirement of a fully weight-bearing internal nail, I would recommend to future LL’ers that automated lengthening be the second most important factor in any decision-making process. Unfortunately, there is no other nail that offers such a combination currently.
Despite all the setbacks, I feel like I have finally gotten to grips with clicking and now am both regular and progressing well with my lengthening progress. However, now that getting the clicks is no longer an issue, another fear has taken over (there is always another fixation that replaces the first during this CLL process) – that of accidental clicks and a potential runaway nail! I know such an outcome is rare, and I plan to be super careful going forward by decreasing clicks etc., especially as I get to the longer lengths, where accidental clicks become more prevalent. Still, the fear is always lingering in the background… I hope it doesn’t happen.
Apart from the clicking however, everything else seems to be progressing smoothly. I feel good, sleep is not really an issue for me (although other housemates are having problems), and my general physical state also feels good (although it is still very early, so nothing is expected at this stage). Whilst I was expecting to lose a lot of weight during the process, it feels like I have barely lost any! Perhaps that will come later.
Germany/Guesthouse/Physio: I have stayed in Germany for a further two weeks beyond my initial two week hospital stay. I initially intended to stay a month at the guesthouse, but I am happy with how things are progressing as well as my general shape. And I am confident enough to return a little earlier. Also, I am quite keen to get out of the CLL bubble. While everyone is super nice and the environment is great for getting the lengthening done, I feel I am going a little crazy just obsessing over this one aspect of life. I am looking forward to getting back to real-life.
I have stayed at the guesthouse (Elke’s). It is a good set-up, with all meals, washing etc., included such that you can fully focus on training, lengthening, etc. Also, there is a wealth of knowledge that can be shared by both Elke and the other LL-housemates, to help with the lengthening process. For example, I am across a much easier method of clicking that really helped to speed up my output and minimise muscle irritation. However, for those that don’t want the guesthouse, staying at the local hotel (Park hotel), is also an option that several patients have taken. The benefit of that is that you get access to all their fitness facilities, which may be useful for those wishing to push themselves a little more with physio.
Speaking of physio, I strongly recommend those going with Dr Betz to stay for a week or two beyond their hospital stay. Whilst the physios at the hospital are good, they are very much generalists. Once you leave the hospital, you start with a different physio (Peter), who is a CLL specialist with over a decade of experience dealing with patients. Like with most things in life, there are levels to everything. Peter is fantastic and the stretches/exercises he gives are extremely useful and precise in helping deal with the specific issues that will be encountered at different stages of lengthening. He can also advise on what to expect in the next stages, and how best to try and combat the issues. I cannot recommend him highly enough! It is worth staying just an extra week to get this experience/knowledge.
I hope this is useful. I’ll keep (irregularly) updating things as I go and as things develop!
Thank you very much for the update, it's much appreciated that you took the time to write it for us.
The clicking scares me a little, to be honest. I literally had people tell me they cried and screamed when they did it. But as you say, it's the only nail out there right now, so no way but this way. It does appear that on the whole your journey is going well though, which is great. I am happy for you. Hopefully you won't have any major troubles until your next update and beyond 
May I ask if you keep in touch with Betz or another doctor? For example, if you have pain and want to know why there is a particular type of pain, who is there to help you?
Quote from: DonBones on July 13, 2021, 07:43:09 AMThank you very much for the update, it's much appreciated that you took the time to write it for us.
The clicking scares me a little, to be honest. I literally had people tell me they cried and screamed when they did it. But as you say, it's the only nail out there right now, so no way but this way. It does appear that on the whole your journey is going well though, which is great. I am happy for you. Hopefully you won't have any major troubles until your next update and beyond
May I ask if you keep in touch with Betz or another doctor? For example, if you have pain and want to know why there is a particular type of pain, who is there to help you?
I cried and screamed during the first cm of clicking on my right. The next 2cm was painful. Clicking after 3cm was dreadful but somewhat bearable. Even at 5.5cm, it is occassionally painful.
My left? Can do 20 clicks in 20 seconds with minimal discomfort.
All depends on the angle of nail insertion by Betz. All luck.
Quote from: SirStretchAlot on July 13, 2021, 08:58:43 AMI cried and screamed during the first cm of clicking on my right. The next 2cm was painful. Clicking after 3cm was dreadful but somewhat bearable. Even at 5.5cm, it is occassionally painful.
My left? Can do 20 clicks in 20 seconds with minimal discomfort.
All depends on the angle of nail insertion by Betz. All luck.
It does sound terrible, but well done on the 5.5 man, you're already further than I can dream about. Honestly - if someone offered me as good a bone consolidation as you have (or RB), even with the wide legs and the pain, but without infection or non-union, I would probably take it! All things considered I think you're all pretty much out of the woods, while I don't even know if will wake up from surgery 
Just wanted to give you my perspective as someone who will have it soon.
The clicking is by far the biggest challenge. It is a nightmare for the first several weeks. It is a skill you must master through a lot of time-consuming and painful trial and error, but you will eventually see a rapid improvement until it becomes super easy and pain-free. My experience was so bad I didn’t believe it would ever improve, but it did. Do not leave Germany too soon. Stay for at least a month so you know you can click, otherwise you may be flying right back there to have them click for you under anesthesia…
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