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[zlRadamanthys]

Is my impression, or the giotikas newspapers are not having good bone regeneration?

[sylar94]

Great321, do you take any meds, supplements or injections to accelerate the consolidation?

[Great321]

Is my impression, or the giotikas newspapers are not having good bone regeneration?

zakika had good bone regeneration

Great321, do you take any meds, supplements or injections to accelerate the consolidation?

Only supplements: Vitamin D, Calcium, Magnesium, collagen   
And for preventing infections: Selen, Vitamin C

[james2334]

zakika had good bone regeneration

Certainly Zakika was staying at the rehabilitation center.  Is there anyone else who has recovered from staying in the apartment?

[Great321]

Certainly Zakika was staying at the rehabilitation center.  Is there anyone else who has recovered from staying in the apartment?

No he was staying in an apartment, too. He took a lot of supplements from the very beginning though.

[james2334]

No he was staying in an apartment, too. He took a lot of supplements from the very beginning though.

Thank you for telling me Great 321!  I also want to take supplements at an early stage.  I hope you will recover well!

[Great321]

Thank you for telling me Great 321!  I also want to take supplements at an early stage.  I hope you will recover well!

You're welcome! I was careful as I didn't want to have pre consolidation during lengthening. Thank you, too!

[sylar94]

zakika had good bone regeneration

Only supplements: Vitamin D, Calcium, Magnesium, collagen   
And for preventing infections: Selen, Vitamin C

are the supplements included in the price? are those recommended by Giotikas?

[azman]

Hey Great321

Did you stay at the Theseus rehabilitation center?

If so, can you tell me more of your stay at the Theseus rehabilitation center?

How was the staff?

How was the food?

Are there a  jacuzzi there for sore muscle for internal Precice or is that no good for CLL?

Where did you stay after leaving Theseus?

Did Dr. Giotikas assistant help find you a place?

Thanks

[MirinHeight]

Is my impression, or the giotikas newspapers are not having good bone regeneration?

when doing external tibias, one can expect 1.5-2 months time per cm lengthened.

i expect great321 to be near 100% by mid june/mid july

[Great321]

are the supplements included in the price? are those recommended by Giotikas?

Only Vitamin D is included in the price during the lengthening phase. Only Vitamin D is recommended and eating meat every day.

Hey Great321

Did you stay at the Theseus rehabilitation center?

If so, can you tell me more of your stay at the Theseus rehabilitation center?

How was the staff?

How was the food?

Are there a  jacuzzi there for sore muscle for internal Precice or is that no good for CLL?

Where did you stay after leaving Theseus?

Did Dr. Giotikas assistant help find you a place?

Thanks

No, I stayed in an apartment after the hospital. But at Theseus I did my PT 2-3 times a week. The staff there was nice. I stayed in an airbnb apartment in Alimos. You can find an apartment on your own and send the link to Dr. Giotikas assistant. They will check it, too. (If it's suitable)

when doing external tibias, one can expect 1.5-2 months time per cm lengthened.

i expect great321 to be near 100% by mid june/mid july

I hope so! But rather at least mid july.



I talked to Dr. Giotikas yesterday evening. He said he sees development of bone regeneration but of course it's not that much as I lengthend 6mm last month. I need at least 2 more months. By the end of June I have to send new X-rays. To encourage the bone growth he recommended me to shorten my tibias by 2mm again to take away the tension. :/

I bought this device: https://www.amazon.de/gp/product/B073W9JCDZ/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
Should have bought it earlier as it really helps to stretch the Achilles tendons. Something similar is used at the Theseus Rehab Center for PT. This one only bears 60kg though. There are for sure other devices, too.

[azman]

Thank you Great321!!!!!!!!!!  Hope all is well.

I'm creating a note pad of all the notes from you, Zakika, and Jolien diary for Dr.G.  You and Jolien are still active on this forum.  I'm trying to put it all together for my trip to Aten if I don't do it with Dr. R.  Since I'm doing it alone without any help, Dr. G and the rehab for a month then to an Airbnb plus saving ~20k for my next CLL for my tibia sounds good.

Your apartment in Alimos, was it in a safe area and was it wheelchair friendly?

Does Dr. G provide transport to/back Theseus for PT?

Did you hire an assistant for like food, shopping and cleaning?  If so can you give me the contact or can Dr. G assistant help with referals?

Thank You

[Great321]

Thank you Great321!!!!!!!!!!  Hope all is well.

I'm creating a note pad of all the notes from you, Zakika, and Jolien diary for Dr.G.  You and Jolien are still active on this forum.  I'm trying to put it all together for my trip to Aten if I don't do it with Dr. R.  Since I'm doing it alone without any help, Dr. G and the rehab for a month then to an Airbnb plus saving ~20k for my next CLL for my tibia sounds good.

Your apartment in Alimos, was it in a safe area and was it wheelchair friendly?

Does Dr. G provide transport to/back Theseus for PT?

Did you hire an assistant for like food, shopping and cleaning?  If so can you give me the contact or can Dr. G assistant help with referals?

Thank You

I'll send you sth about the apartment tomorrow.

Yes, there's a wheelchair van transporting the patients to the apartment and back each time. Nog included in the price though, ask them about that via mail.

Dr. G team can assist you with a care taker. I don't know if they choose the cheapest or more exoensive ones though. I didn't need one as I had my family member with me.

[Great321]

Update

Just right know I figured out how to walk a lot faster with the crutches. Pretty happy about it. That's only possible because my right leg got stronger compared to a few days ago.  Every day can be different.

[sylar94]

Update

Just right know I figured out how to walk a lot faster with the crutches. Pretty happy about it. That's only possible because my right leg got stronger compared to a few days ago.  Every day can be different.

Great321, did dr Giotikas show you any of his previous/current cLL patients?
Can someone ask to see some of his patients?

[Great321]

Great321, did dr Giotikas show you any of his previous/current cLL patients?
Can someone ask to see some of his patients?

 I didn't ask for it. But I met zakika before my surgery via this forum.

But you can ask Dr. Giotikas and he'll talk to his patients, like he talked to me. I agreed to be visited by someone.

[sylar94]

I didn't ask for it. But I met zakika before my surgery via this forum.

But you can ask Dr. Giotikas and he'll talk to his patients, like he talked to me. I agreed to be visited by someone.

Just to clarify, you met him in real life?

[Great321]

Just to clarify, you met him in real life?

Yes. Before the surgery and sometimes during PT. (If you're talking about zakika)

The other guy who was interested in LL met me in my apartment.

[sylar94]

Great321, did you take any Muscle relaxant medication? For example dr Paley recommends Valium 5 mg

[Great321]

Great321, did you take any Muscle relaxant medication? For example dr Paley recommends Valium 5 mg

Not that I know of.

[Great321]

Video of me walking

Imgur only allows short clips, so I had to shorten it. In my mind it feels faster than it looks like but it's a huge improvement. I should have exercised a lot more than I would be further by now. But I still have enough time.  Also I could have walked more with a straight posture but I didn't think about it I guess.

https://imgur.com/a/UqvQquN

[james2334]

Video of me walking

Imgur only allows short clips, so I had to shorten it. In my mind it feels faster than it looks like but it's a huge improvement. I should have exercised a lot more than I would be further by now. But I still have enough time.  Also I could have walked more with a straight posture but I didn't think about it I guess.

https://imgur.com/a/UqvQquN

Your walk looks very good.

[Great321]

Your walk looks very good.

Thank you!

[Kenda]

Hey Great,
Just saw the video of you walking, May i ask u a couple of Qs :
___________________________________________________
1) How long did you stay with the frames on ?  If you are using pure external i believe 10 months with these frames right?
2) KNEE Pain ? Ankle Pain ? - How do u feel & do u feel that with pure external u avoided these problems ?
3) How much total gain did u achieve ?
4) When are u doing stryde on  femurs?  from your experience with pain do u feel that if u wouldve done internal femurs it would hurt more ?

[Jolien]

Dear,

did you switched from a walker to crutches recently? and if so did you really felt the difference? because I really feel I'm not progressing at all with my walker :-(

Kind regards!!

Jolien

[Great321]

Hey Great,
Just saw the video of you walking, May i ask u a couple of Qs :
___________________________________________________
1) How long did you stay with the frames on ?  If you are using pure external i believe 10 months with these frames right?
2) KNEE Pain ? Ankle Pain ? - How do u feel & do u feel that with pure external u avoided these problems ?
3) How much total gain did u achieve ?
4) When are u doing stryde on  femurs?  from your experience with pain do u feel that if u wouldve done internal femurs it would hurt more ?

1) I'm still wearing the frames. It's been 5 months since I stopped lengthening. (except for the 3 weeks of lengthening last month) And it's been 7 months since the surgery. I believe that I have to wear the frames for about 2-3 months more. So yes, it takes about 8-10 months.

2) The pain while wearing the frame is something that can go away after the frames are taken off. More important is the question if there is pain that lasts longer after the frames. I don't know about that yet.

 I think that everyone will experience different problems. Some will have more problems with their ankle, some more with their knee or another area of their legs. Luckily I haven't had ankle problems yet. But occasionally I had and I have knee pain. I'm sure that it's only because of the pins. Either you'll experience knee pain because of the pin site being inflamed or its existence in general. But so far every pain I had disappeared again by itself or with the help of movement. (Like bending my knee although it was hurting- that helped) Over the past especially my right knee was making problems from time to time only for 2-3 days in a row. Then it was fine again.

3) I had stoppend lengthening in December. Then I had achieved about 4,3cm. Last month in April I was allowed to lengthen another 6mm. So I had gained 4,9cm. But now that my bone growth isn't very fast Dr. Giotikas recommended to shorten for 2mm again in order to take away the tension. That could help. After the next X-rays I'll know if I can get back those 2mm. So for now about 4,7cm.

4) I don't know yet. I want to rest for a few years. As I haven't had experience regarding internal nails I don't know if internal femur would be more or less painfull.

Dear,

did you switched from a walker to crutches recently? and if so did you really felt the difference? because I really feel I'm not progressing at all with my walker :-(

Kind regards!!

Jolien

The first time I walked with crutches was on April the 7th. So not that long ago. Before I was uncertain if that was possible. But I could have started earlier probably. It takes some courage and patience as the first steps will be very slow and a bit dangerous if the legs aren't strong enough. But it'll get better. And you have to carefully figure out how to use the crutches in order not to fall.

For example: When you want to make a step with your right leg, the crutch in your right hand has to be behid your body on the side while the crutch on your left hand has to be in front of your body.

You are still in the beginning so don't worry. Also since you're doing LON you'll progress faster once the frames are taken off.

[Great321]

Yesterday evening I was stretching my left foot like always. Suddenly after a certain movement I felt a sharpe pain in my tibia. Half an hour later I walked to the bathroom and back and already noticed that the pain was increasing. The pain was spreading in my whole left leg. After 1-2 hours the pain decreased again and I was able to sleep. Today I felt better but when I walked again that certain spot made itself noticable again so I have to be careful not spread the pain again by putting too much weight on my left leg.

These are the days you feel frustrated because the pain slows down your recovery/mobility and there's the uncertainty of what that pain is and when or if the pain will go away. 

[Great321]

Update

That problem went mostly away again today (17th May).
I was able to walk again with full weight bearing on my left leg. On the 16th while the left leg was weak I had to use my right leg mostly when I stood or moved around. Just that one day made my right leg stronger than it was before. I really noticed this now when I was using the crutches again. I can walk faster now as the stronger the legs are the less you have to adjust the crutches for balance and that saves time. I actually prefer the crutches over the walker as I feel less pain in my legs then.

Unfortunately for a few weeks now I have an issue with my left leg. Whenever I want to sit down it gets stiff and cramped, a bit painful too, then when I'm sitting only after about 5 seconds the tension disappears gradually. Today it started to get uncomfortably stiff (only the tibia area) when I walk. I can move it around normally but there's a big pressure. Probably the muscles around the pins under the knee... the X-rays don't indicate a problem. I'm sure it'll be fine again once the frames are off. I guess that the stiffening around that area of my left tibia is a reaction of my body to avoid pain.

Also one nerve of my right lower leg makes itself noticable uncomfortable when I move my leg in certain positions.

Today I also felt a sharp uncomfortable sensation around one of the pins of my right ankle whenever I slowly took off my foot from the floor.

So every day is different. Even after 7 months you'll get surprised by new pain. The chance is high that it will disappear on its own though.

At the end of this day I'm happy though because of my walking progression.

[cheekycabs]

How's your strength when going from sitting to standing? Are you doing any PT to work on this? What about stairs?

As I said before, we're around the same level. My walking has improved immensely, I can pretty much walk with 1 forearm crutch. And with near-perfect gait and motion. Maybe a little tweaks needed.

However, stairs still need some work, as does standing from sitting position in my case. What about you?

[cheekycabs]

And yes, the new pains are infuriating. It can kill your motivation. Stay strong man.

[Great321]

How's your strength when going from sitting to standing? Are you doing any PT to work on this? What about stairs?

As I said before, we're around the same level. My walking has improved immensely, I can pretty much walk with 1 forearm crutch. And with near-perfect gait and motion. Maybe a little tweaks needed.

However, stairs still need some work, as does standing from sitting position in my case. What about you?

I lost the ability to stand up on my own after the surgery. I don't think that strength would help until the frames are there. So I don't do much . Pretty sure that after the frames it'll be a lot easier.

I will test the stairs soon now that my legs are both stronger.

My walking abilities do progress luckily too. But whenever I sit for several minutes and want to stand up and walk I can't do that immidietaly. I need about a minute and more until I feel stable on my feet. But that's again the pressure from the pins. What about you? Can you walk immidietaly after standing up?

And yes, the new pains are infuriating. It can kill your motivation. Stay strong man.

True. Thanks! You, too!