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[Issun-Boshi]

That's amazing progress! Thanks for the update.

Since you mentioned budget around 2000EUR/month, how many months are you planning to stay in Greece?

I'm still unfamiliar with Stryde lengthening so I'm not sure if I should budget for 3 months or 6 months.

Should we stay for Greece for the whole process, or just till it finishes lengthening (3-4 months?)

Thanks!

[eddiemorra]

That's amazing progress! Thanks for the update.

Since you mentioned budget around 2000EUR/month, how many months are you planning to stay in Greece?

I'm still unfamiliar with Stryde lengthening so I'm not sure if I should budget for 3 months or 6 months.

Should we stay for Greece for the whole process, or just till it finishes lengthening (3-4 months?)

Thanks!

You should ask the Doctor, as your situation could be different.

I will stay 5 months in Athens because I preffer to have the consolidation here, but I could be just 3 months. The physiotherapy clinic has experience with many LL patients.

Take into account that the time you are going to be here can increase for different reasons.

[eddiemorra]

Okay, as some guys are sending me privates messages to have information about my progress I´ll write something.
Today I have no physiotherapy and the day can be veeeeeery long and boring.

My thoughts, reflections, advances and data:

-Before the surgery I have been following the experience of old forum patients. I was reading that most of what they wrote was positive. Well, in my opinion this has an explanation and is that patients tend to write when they do better, when they feel better or have great advances. If they feel bad or sad, they are very likely not to write. Obviously this has happened to me also in some of my past messages. This also has to do with social desirability (normal psychological phenomenon in humans). So be aware of that.

-For me the hardest part is the mental part; in the last week I had more anxiety and sadness. Not depression, but in a few more months it could develop (exogenous depression).

 Being in the apartment all day is a kind of punishment. You have to think that you are 24 hours on the same walls. There are 168 hours a week and only 4 of physiotherapy. Social isolation is VERY BAD for mental and physical health (do a Google search). Of course, it´s not the same if you are with your family, with a friend, girlfriend or nurse/carer. If you are totally alone and you manage by yourself, that´s very hard mentally. Some people take it better and others worse. I talk with family and friends on whatsapp but it is not enough. Prisoners probably have more social interactions than me

This thing can even cause long term psychological negative effects: https://www.apa.org/monitor/2019/05/ce-corner-isolation

You can find a lot of information about what I´m talking about but here you have a curious case: https://www.theguardian.com/sport/2019/jan/10/rich-alati-poker-player-bet-dark-room-isolation

"The United Nations’ Nelson Mandela Rules state that keeping someone in solitary for more than 15 days constitutes torture".

-Given the above, I have decided to leave at the end of the extension. I planned to be 5 months, but 3 months is already hard if you are for yourself here.

-Respect for those who have had to spend 7 or more months with external fixers and totally alone.

-Practicing stretching exercises every 2-2.5 hours. About 60 push-ups a day, some biceps repetitions with chairs and some shoulder.

-About 6 cm extension and everything is fine according to the doctor. Feeling more flexible but sleeping is still difficult.

-Pains in the buttock and lower back.

-I have not weighed myself, but I would say that I have lost 10-12 kilos, probably the majority of muscle, because I practiced a lot of sport and had an adequate weight. I am trying to eat more to recover, but the truth is that I am not enjoying the food at all.

-I am aware that this message is more negative, but I think it is necessary. My previous messages were positive and I feel that the psychological issue of this procedure is not discussed.

-In the case of patients who can go to their countries in 2-3 months it is less worrying, but it is much more for those who are 6 or more months totally alone (if that´s the case).

[Tupac]

Hi dude !

Is it possible for you to get out of your house ?

I saw that you could walk so why don't you go for example to do your stretching exercises in a gym?

Or just go out and see a little bit of the world to break the loneliness? 

[eddiemorra]

Hi dude !

Is it possible for you to get out of your house ?

I saw that you could walk so why don't you go for example to do your stretching exercises in a gym?

Or just go out and see a little bit of the world to break the loneliness? 

Have meet some LL patients and we will try to start doing some activities.

I can walk with no aid, but I use crutches because I feel more confortable and get less tired.
I guess for some patients it´s possibe to go to the gym, but take into account that I haven´t even finish the extension period.
I have some pain when walking too much. I go every week to the supermarket and try to do it really fast, because I get tired, sometimes some pain arises, and if it´s too much time I get a bit dizzy.
I thought that I could go to the gym, but not an option for now. It´s already enough stretches each 2 hours, physio and I also have to work on my laptop. Also, some days the exercises in the physio center make me very tired.

Anyways, the reason for me to not go out is that frequently I feel some pain and that I get really tired.

[azman]

Hey E,

Try using the gym at the Theseus.  It’s in the lower level of the Theseus, one floor below the main entrance floor if I remember correctly.  It’s to the right of the elevator.  There are 2 stationary bikes to the right of the gym door.  Riding the bike for 10-20min helps a lot.  Reading your dairy bring back memories. 

[eddiemorra]

Hey E,

Try using the gym at the Theseus.  It’s in the lower level of the Theseus, one floor below the main entrance floor if I remember correctly.  It’s to the right of the elevator.  There are 2 stationary bikes to the right of the gym door.  Riding the bike for 10-20min helps a lot.  Reading your dairy bring back memories. 

Hi Azman, thanks, I didn´t know that there is a gym in Theseus, will check it this week.
Hope your progress is good.


Regarding the last message I forgot to mention that I´m having a big problem to sleep. I can only do it comfortably looking up and I have a pain in the gluteus, so for now it is impossible for me to sleep comfortably. This issue is surely causing me to lower my mood. I would say that I am sleeping about 4-6 hours a day, depending on the night.

[Richard]

Keep going on, my friend. The process is annoying, but the return is worthwhile.
You should try melatonin. It can solve your sleeping problem.
I think I will do the femurs with Giotikas, too. Maybe four years later. So your diary means a lot to me. I hope you are going well on this journey.
I am looking forward to hearing so good news from you.

By the way. Do you ever know the price for the Rehabilitation Center?

[llj]

Okay, as some guys are sending me privates messages to have information about my progress I´ll write something.
Today I have no physiotherapy and the day can be veeeeeery long and boring.

My thoughts, reflections, advances and data:

-Before the surgery I have been following the experience of old forum patients. I was reading that most of what they wrote was positive. Well, in my opinion this has an explanation and is that patients tend to write when they do better, when they feel better or have great advances. If they feel bad or sad, they are very likely not to write. Obviously this has happened to me also in some of my past messages. This also has to do with social desirability (normal psychological phenomenon in humans). So be aware of that.

-For me the hardest part is the mental part; in the last week I had more anxiety and sadness. Not depression, but in a few more months it could develop (exogenous depression).

 Being in the apartment all day is a kind of punishment. You have to think that you are 24 hours on the same walls. There are 168 hours a week and only 4 of physiotherapy. Social isolation is VERY BAD for mental and physical health (do a Google search). Of course, it´s not the same if you are with your family, with a friend, girlfriend or nurse/carer. If you are totally alone and you manage by yourself, that´s very hard mentally. Some people take it better and others worse. I talk with family and friends on whatsapp but it is not enough. Prisoners probably have more social interactions than me

This thing can even cause long term psychological negative effects: https://www.apa.org/monitor/2019/05/ce-corner-isolation

You can find a lot of information about what I´m talking about but here you have a curious case: https://www.theguardian.com/sport/2019/jan/10/rich-alati-poker-player-bet-dark-room-isolation

"The United Nations’ Nelson Mandela Rules state that keeping someone in solitary for more than 15 days constitutes torture".

-Given the above, I have decided to leave at the end of the extension. I planned to be 5 months, but 3 months is already hard if you are for yourself here.

-Respect for those who have had to spend 7 or more months with external fixers and totally alone.

-Practicing stretching exercises every 2-2.5 hours. About 60 push-ups a day, some biceps repetitions with chairs and some shoulder.

-About 6 cm extension and everything is fine according to the doctor. Feeling more flexible but sleeping is still difficult.

-Pains in the buttock and lower back.

-I have not weighed myself, but I would say that I have lost 10-12 kilos, probably the majority of muscle, because I practiced a lot of sport and had an adequate weight. I am trying to eat more to recover, but the truth is that I am not enjoying the food at all.

-I am aware that this message is more negative, but I think it is necessary. My previous messages were positive and I feel that the psychological issue of this procedure is not discussed.

-In the case of patients who can go to their countries in 2-3 months it is less worrying, but it is much more for those who are 6 or more months totally alone (if that´s the case).

I'm on my 23rd day and I have felt pretty much everything you mentioned.

The pain on the buttocks is the worst, something constant and very nagging, to the point that I start speaking fast because it becomes harder to focus long enough to speak long sentences at normal speed.

But I'm slowly learning how to avoid the buttocks pain. For example I avoid anything that gives me pain, because I noticed that if I experience pain for a long period it's likely to hurt and then the pain will become almost chronic for a few days, does that make sense?

Also whenever I start feeling this pain start I try to change position immediately. If I'm laying down, I will sit on a chair. Or if I'm sitting I will get up and do a little walking or even the exercises the physio has taught me.

Another thing I noticed that caused me to have this pain for several days was a bad mattress (too soft) and another time I fell from the walker on my butt on the bed, it was like a 30-40 cm fall onto something soft but I felt intense pain at the time and on the following days I experienced a lot of discomfort on the buttocks.

The last thing I noticed that makes everything more painful and uncomfortable is the lengthening itself. At first I was doing 1mm/day split into 2 times of 0.5mm each. Now I have changed to 4x 0.25mm a day. I'm more busy doing it, but feel less pain when I do it and afterwards. If I could I'd even change to 0.75mm a day (in total) to limit even more the discomfort, but I can't since Dr. Pili said I'm making a lot of callous and fast.

Regarding the loneliness, I've come to the conclusion that doing it all alone is a bad idea. For one thing, you don't have much to distract you and you may end up focusing too much on the pain and discomfort and that may lead you into an spiral of sadness, more pain etc.

Also you will need help with many trivial and unexpected things, I for one couldn't until couple days ago put on my pants or underwear or even socks on my own. You may fall and need urgent help. Walking (with the walker or otherwise) becomes super tiring because you lose much of the strengthen on your legs and most of the effort of walking is now made by your arms holding the walker, pulling yourself etc.

For someone that truly has no one to accompany him/her, I'd suggest, although I haven't tried, looking for a room to rent on Airbnb. But before confirming the rental, try and message many hosts to see if any would like to be your helper or would be able to help you find one, for a fee. Expect to pay around 10euros/hour in Europe depending on the country/city. If the person could be home with you 24/7 would be best, or at least always have someone at home that can help with emptying the urine and getting you water, food, pills etc.

[MirinHeight]

any update

[spartacusforhimself]

Hi… it's long since you haven't wrote. How are you?

[k1erz]

Any updates?

[eddiemorra]

Hey llj, I hope the recovery is going well for you.
In my case what worked for the pain in the gluteal muscles was apply heat with a hand dryer. The pain will go away just for a few minutes but it was the only solution I found.

[k1erz]

How is your recovery?

It’s been about 6 months now.

[eddiemorra]

Hi guys, I have been focused on work, stretching and physical exercise. Honestly I hope to leave the forum in the past soon

Brief news and information, especially for those who are deciding whether or not to do this surgery. Take into account that this is my experience, it could be very different in other cases:

-I get X-rays every 6 weeks and send them to Doctor Giotikas. Femurs are growing well and metals are in place. All good.
-Currently I can walk around the house, go to the gym, visit family or friends, drive or go to the supermarket. But I cannot run, do sports, travel (impossible to carry the luggage) or walk a normal daily distance. I would say that I am 70% of my normal gait when walking. That said, it has been hard to get this far, there have been several relapses in the state of the legs.
-Recovery is a very hard process. You will have pain (that sometimes does not let you sleep or work with the computer), mood drops and you will have to try hard.
-Exercising and stretching is extremely important. It is also very important not to exercise too much. Your legs will be damaged until you recover all the bone, with a lot of exercise they become inflamed, which causes pain. After squats, walking, and other exercises, it is a good idea to put ice on to avoid inflammation.
-The pain has been decreasing for the past 4 months and is now very low, just something in the right knee and tibia.
-If I walk too much, the pain increases. In June I developed pain in both knees that would not let me walk and made me very uncomfortable when sleeping. It took me 3 weeks to recover.
-Visiting the physical therapist once a week.
-I don't know exactly, but in Greece I must have lost 7-10 kilograms. I have been putting effort to regain the weight and I still have to gain about 3 kilograms.
-Exercise 5 times a week; stretching, exercises for quadriceps and glutes, bicycle, walking, push-ups, weights ...
-I haven't recovered yet, it's still far away. If I walk too much (which for a normal person would be walking a little), the pain begins.
-I do not recommend this surgery without social support. That is, if you are going to be all your recovery alone. In the same way that legs / bones can develop disorders and it is necessary to do tests and exercise, it is possible to develop psychological disorders and to avoid them you will need certain conditions. In my case, the social support of family and friends has been essential.
-Knowing all this and if I could go back to the past and make the decision again, would I have the surgery? Yes, I don't think about height anymore, and you can clearly see the difference. Before I was "short", now I am average.
-Doctor Giotikas is a very good professional. If you have him as an option, schedule an online appointment and ask all your questions. He should answer them, not the users of this forum.

I hope my experience helps you and I will write again in a while!

[eddiemorra]

Hey, the cost of the rehabilitation center is included in the price.

[a]

Hello,

Don't you think your tibias are now way too short for your femurs?
Can you send a picture?

Regards.

[eddiemorra]

Keep going on, my friend. The process is annoying, but the return is worthwhile.
You should try melatonin. It can solve your sleeping problem.
I think I will do the femurs with Giotikas, too. Maybe four years later. So your diary means a lot to me. I hope you are going well on this journey.
I am looking forward to hearing so good news from you.

By the way. Do you ever know the price for the Rehabilitation Center?

Hey, the cost of the rehabilitation center is included in the price.

[k1erz]

Lovely updates Eddie.

What was your start and end height?

[k1erz]

Sorry please ignore the above, I just read your first post.

How long do you think it’ll take before you’re back to your pre-CLL mobility, normal walking endurance and flexibility?

[Movie]

So far it sounds similar to my experience when I was at 6 months the bones are still consolidating and soft tissue adjusting, that's probably why you still have knee pain and tibia pain/numbness, I'm almost at a year post op and my knee pains alternates now from left leg to right leg after doing exercise, keep it up bro, it only gets better from here. 

[eddiemorra]

Hi guys! Some updates:

-1 year post op I can walk at 80-90%. Why not 100%? Probably because of my glutes muscles. They are still weak and it's difficult to recover them.
-Recovered almost all my legs flexibility.
-Can't run, neather I want to try yet.
-No pain for 2 months.
-I had a really bad october month, bad pain which didn't let me sleep.
-If I walk too much, maybe +1km a day, pain may come back.
-Do I think it was worthy? For now yes, but to give a better answer I'd like to wait when the metals are removed.
-I do legs exercises and can go to the gym.
-My life is totally normal, just that I can't walk too much.

[SpeedDialer]

Hey eddiemorra!

That's awesome that walking is almost normal now!!

What did you dislike the most about the place you found in Greece during lengthening and what would you look for instead if you could do it over again?

[eddiemorra]

Hey eddiemorra!

That's awesome that walking is almost normal now!!

What did you dislike the most about the place you found in Greece during lengthening and what would you look for instead if you could do it over again?

Hey man, honestly my place was quite good. Very near the phisiotherapy center, which is important, as you have to go almost every day.

You want to have a confortable place, with internet,  elevator, good bed... The worst for me was the feeling of isolation and lack of sleep. Pain+no sleep+isolation+not being able to walk was the worst. Maybe +the last month with the pandemy stress.

Also I lost 8-10 kg, so I would recommend to prepare a diet to maintain as much weight as you can, at least if you loose weight in an easy way.

[SpeedDialer]

Oh hmmm... What neighborhood was the physiotherapy center in and how did you like it? I've been researching different neighborhoods in Athens and never thought about this

[SpeedDialer]

Do you think something like the occulus quest 2 might be good for fighting the feeling of isolation? I'm looking into this, it looks like a good device for exploring areas in google maps and maybe doing a virtual chat w/ a family member or something

I know that burn victims use VR to distract themselves from the burn pain

[Ted68]

Its been 3 years and I can see "Eddiemorra" forgot to finish his attempt of diary... so he didn't tell us when exactly removed his Strydes, how was feeling few days after and how its mobility, strength, speed, balance and weight improved few weeks later... and then years later.
Maybe he will remember to tell us all these, in details...

[Beemer m3]

The isolation part sucks alot. I got accommodation in vietnam, Caretaker pt 5 days a week , One roommate. Still feel isolated because I don't go out. I go out like once every 2 weeks to go to the hospital and sight seeing stuff. Helps out a little.

[Rockstarz5]

 
  I would bring motovarionall books and some anti-depresant.  (not sure if is bad would have to ask but it could be a boat in the middle of the ocean.. loneliness is a key factor of bad outcome