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[ItsMyLife]

Sleep was AWFUL last night. So much tightness and knee pain on both knees! Icing them helped me get back to sleep. I might have got like 5 hours in total...

I think im at about like 4.2cm right now. Dr G mentioned slowing down from 15 clicks (1mm) a day to 12 (.8mm) a day. We did 21 clicks a day the first 2 weeks. Not thrilled about having to drag this awful process out any longer...but if it'll help sleep and knee pain like he says....it'll only cost me a few extra days to hit my goal....

I'm gonna try to suck up 15 clicks a day for a few more days (depending on what he says) at least.

wow femur is real fast..
my ext tibia doc said if we slow down lengthening, the total recovery time (including consolidation) might be the same or shorter.
if we lengthen too fast, the total recovery time (inclusive of consolidating) is gonna be longer probably.
so no worries alright.

my doc says warm and ice compress alternate.

you can try diclofenac/ketoprofen gel. or methyl salicylate gel. they are sports gels, and they help so so much. my doc said they are OK.

im actualy only at 2.5 cm (1 inch) but my surgery date was 8 dec.. femur is so fast... how long is the total recovery time expected for you? and what is the no. of cm you are aiming for??

i might actually do femurs.. my tibias are starting to look long at 2.5 cm

[YellowSpike]

At this point, I'll probably have to click a few more days after I return home. I want to leave the first week of February. I'm alone in a foreign country (and have been since early November), I don't get any sleep, and I need to know that my days here are numbered. I don't want to have to stay longer if we are slowing the clicks down. 6.5cm needs to get here asap.

If I had a family member here, it'd be easier mentally. When I actually get decent sleep, I'm much better able to deal with everything, including pain.

My personal trainer that was with me in Milano is leaving this week too, so im really upset about that too. My PT session was terrible today because of the lack of sleep. Having someone there to tell me that the specific pains I'm experiencing is normal really helps...

I just can't wait for this to end...

/rant over

[goodlucktomylegs]

At this point, I'll probably have to click a few more days after I return home. I want to leave the first week of February. I'm alone in a foreign country (and have been since early November), I don't get any sleep, and I need to know that my days here are numbered. I don't want to have to stay longer if we are slowing the clicks down. 6.5cm needs to get here asap.

If I had a family member here, it'd be easier mentally. When I actually get decent sleep, I'm much better able to deal with everything, including pain.

My personal trainer that was with me in Milano is leaving this week too, so im really upset about that too. My PT session was terrible today because of the lack of sleep. Having someone there to tell me that the specific pains I'm experiencing is normal really helps...

I just can't wait for this to end...

/rant over

Your PT left the job or just back to his home?
Does dr guichet will find other pt to help you?

[YellowSpike]

Your PT left the job or just back to his home?
Does dr guichet will find other pt to help you?

No the PT at the gym is in addition to the isokinetic center. So ill still be going to both the gym and isokinetic center, but the gym I'll be alone.

I'm trying to see if my PT can return to London after a few days. It's just better for my morale.

[Uppland]

Yellowspike will you do videos to demonstrate your recovery and pictures showing how it all looks after you're done with the hard part?

[YellowSpike]

Yellowspike will you do videos to demonstrate your recovery and pictures showing how it all looks after you're done with the hard part?

One day at a time my friend I just need to survive to clicking my way to 6.5cm!

I had the surgery 4 weeks ago today. Crazy. I hope the pain (which hasn't even been that bad) and sleep at least start to make small improvements soon. Just over 2cm to go.....

[Uppland]

One day at a time my friend I just need to survive to clicking my way to 6.5cm!

I had the surgery 4 weeks ago today. Crazy. I hope the pain (which hasn't even been that bad) and sleep at least start to make small improvements soon. Just over 2cm to go.....

I also thin about doing 6,5 with Guichet because the femur bone is slightly tilted so that way I should be 6CM taller. Do you feel like that is too much or did Guichet insinuate that less should be safer in any way?

[YellowSpike]

I also thin about doing 6,5 with Guichet because the femur bone is slightly tilted so that way I should be 6CM taller. Do you feel like that is too much or did Guichet insinuate that less should be safer in any way?

I think he believes 7-8cm is the "safe" max. I'll ask him.

[Uppland]

I think he believes 7-8cm is the "safe" max. I'll ask him.

Thanks mate you're great.

I saw Forced Puberty post that one shouldn't lenghten to fast (no faster than 0,66mm he said) if you want your recovery going well. I don't know if that's true but you should ask Guichet if you can slow down -safety first right?

Stay safe mate I really hope you recover as well as possible.

[YellowSpike]

Thanks mate you're great.

I saw Forced Puberty post that one shouldn't lenghten to fast (no faster than 0,66mm he said) if you want your recovery going well. I don't know if that's true but you should ask Guichet if you can slow down -safety first right?

Stay safe mate I really hope you recover as well as possible.

Is that for tibias or femurs, though? Femurs you can go faster, but Dr G said as of tomorrow we are slowing down a bit to help sleep and reduce some pain. I'm a little annoyed, but I'm still going home the first week of Feb, even if I have to click a few days at home to get to 6.5cm. I've been away since Nov 11, and I'm just tired of the loneliness at this point.

My checkup today at isokinetic went well. At around 4.5cm (guess-stimate), my SLR is around 80/85 degrees and my knee flexion is still excellent. So my flexibility has been hanging in there at least.

Most of my knee pain is now gone, but now my right leg (hip and outer thigh) is killing me.

[Uppland]

Is that for tibias or femurs, though? Femurs you can go faster, but Dr G said as of tomorrow we are slowing down a bit to help sleep and reduce some pain. I'm a little annoyed, but I'm still going home the first week of Feb, even if I have to click a few days at home to get to 6.5cm. I've been away since Nov 11, and I'm just tired of the loneliness at this point.

My checkup today at isokinetic went well. At around 4.5cm (guess-stimate), my SLR is around 80/85 degrees and my knee flexion is still excellent. So my flexibility has been hanging in there at least.

Most of my knee pain is now gone, but now my right leg (hip and outer thigh) is killing me.

It's for soft tissue in general it hurts when it's stretched beyond it's natural limits. Nerves get pulled out and may press against tight muscles and so. It's probably that kind of stuff that hurts so much for you. It's also supposed to help your post-op recovery if you lenghten slower because the body has more time to adjust and takes less damage. Remember that while you feel lonely and are in pain now it's better than facing a lifetime of worsened physical agility that could have been prevented.

[YellowSpike]

It's for soft tissue in general it hurts when it's stretched beyond it's natural limits. Nerves get pulled out and may press against tight muscles and so. It's probably that kind of stuff that hurts so much for you. It's also supposed to help your post-op recovery if you lenghten slower because the body has more time to adjust and takes less damage. Remember that while you feel lonely and are in pain now it's better than facing a lifetime of worsened physical agility that could have been prevented.

Yea I don't mind slowing down too much. I want this done safely! And if it'll reduce pain and help sleep I'm all for it. Even if it means I may have to click a few days back at home.

[Uppland]

Yea I don't mind slowing down too much. I want this done safely! And if it'll reduce pain and help sleep I'm all for it. Even if it means I may have to click a few days back at home.

I am interested in Dr Guichet could you tell me how your experience with him, the clinic, the staff and the city has been so far? Thanks and I look forward to seeing you recover mate.

[ItsMyLife]

I am interested in Dr Guichet could you tell me how your experience with him, the clinic, the staff and the city has been so far? Thanks and I look forward to seeing you recover mate.

me too i might do internal femurs.... but only a few cm..but may not be worth the cost if i just do 4 cm..

[YellowSpike]

The only thing holding me back is this mutha f#%*ing lack of sleep. Supposedly it'll improve as we've slowed lengthening down (day 3 now) and I'm getting a bike to cycle at night (supposedly this helps too, but I'll believe it when I sleep more than 2 hours).

Be warned...if you do internal femurs, sleep will be a thing of the past. If it weren't for this, I'd be pretty much golden right now.

[ItsMyLife]

The only thing holding me back is this mutha f#%*ing lack of sleep. Supposedly it'll improve as we've slowed lengthening down (day 3 now) and I'm getting a bike to cycle at night (supposedly this helps too, but I'll believe it when I sleep more than 2 hours).

Be warned...if you do internal femurs, sleep will be a thing of the past. If it weren't for this, I'd be pretty much golden right now.

its so bad for ur health this chronic sleep deprivation
pls let me know why u cant sleep?
is it pain?? or discomfort?
or just that, you cant sleep?

[YellowSpike]

its so bad for ur health this chronic sleep deprivation
pls let me know why u cant sleep?
is it pain?? or discomfort?
or just that, you cant sleep?

I don't sleep bc of muscle tightness waking me up every night. I'm averaging maybe 3-4 hours a night, and it's going to kill me. For me, this is my only current real roadblock.

It's really reakly wearing on me. About 3 weeks of hell on earth to go. Wonder if it will even have been worth all this...

[Uppland]

I don't sleep bc of muscle tightness waking me up every night. I'm averaging maybe 3-4 hours a night, and it's going to kill me. For me, this is my only current real roadblock.

It's really reakly wearing on me. About 3 weeks of hell on earth to go. Wonder if it will even have been worth all this...

Slow down on your clicks that's probably why your muscles are so tight, give your body a break.

[ItsMyLife]

try anti-histamines like hydroxyzine, take before u sleep
it makes it easier to drift back into sleep.
get a muscle relaxant tablet ready when u wake up, and swallow it if wake up in middle of night
also, take all pain meds immediatley before u sleep.

let me know if this helps..
i get enough sleep very night..

[YellowSpike]

Uppland - we have slowed clicks. Today is day 3 of 12 instead of 15 clicks, and supposedly it takes the body 4-5 to "notice" you've slowed down. So I'm sure I won't be sleeping tonight. And my bike should finally come tomorrow so that should hopefully help too.

ItsMyLife - thanks for the suggestions. Do you mean to take something like Benadryl? That ALWAYS knocks me out. As for muscle relaxants, Dr G said after a few weeks they don't work as much anymore which blows.

[ReadRothbard]

How many cm are you at right now?

[YellowSpike]

How many cm are you at right now?

I'll have a better idea on Monday (next x-Rays), but if going by my Excel file, maybe just under 4,5cm? But I feel like it's more because I had many accidental clicks the first 2 weeks and I would (so stupidly) throw in an extra click here or there to speed things up (though I haven't done that in a while now). Boy did I learn my lesson.

I just need this to end. Shooting for between 6-6.5cm. I'll still only be in the 5'8" range, but I'm starting not to care about height anymore. This nightmare has made me appreciate what I had all along a lot more (as corny and "pussy-ish" as it may sound to all of you).

[123]

I'll have a better idea on Monday (next x-Rays), but if going by my Excel file, maybe just under 4,5cm? But I feel like it's more because I had many accidental clicks the first 2 weeks and I would (so stupidly) throw in an extra click here or there to speed things up (though I haven't done that in a while now). Boy did I learn my lesson.

I just need this to end. Shooting for between 6-6.5cm. I'll still only be in the 5'8" range, but I'm starting not to care about height anymore. This nightmare has made me appreciate what I had all along a lot more (as corny and "pussy-ish" as it may sound to all of you).

This is completely normal. Just hang in there, start watching some series/movies to distract yourself, can't to much more.

[MAN-OF-STEEL]

Hi Yellow

Is being away from home maybe a major contributor to your nightmare?

[YellowSpike]

Hi Yellow

Is being away from home maybe a major contributor to your nightmare?

Yea that's part of it. But sleep is the worst aspect right now for me.

[KiloKAHN]

I think the lack of sleep is probably the worst aspect of CLL for most people. It's not as bad for me now being in the consolidation phase, but having these bulky Ilizarov frames on me still makes sleeping difficult to the point where I can't sleep now unless I drink a shot of whiskey first. Fortunately you're doing internals, so once your soft tissues have healed enough you shouldn't be uncomfortable sleeping.

[ItsMyLife]

hang in there,
yes benadryl is an anti-histamine;
you may find it will stop working after 1 week. if so, switch to another anti-H such as hydroxyzine, chlorphenaramine.
they make u sleep like a baby!
take it before u sleep, so when you wake up, you will drift back into sleep!
i hope these will buy you a few weeks' of good sleep...
i have taken them for sleep and it really works... i've had good sleep since day one, but im doing ext tibia!
once anti-histmines dont work, take painkillers like codeine phosphate 30 mg or tramadol, which make u drowsy (dont take them tgt)

[ItsMyLife]

I think the lack of sleep is probably the worst aspect of CLL for most people. It's not as bad for me now being in the consolidation phase, but having these bulky Ilizarov frames on me still makes sleeping difficult to the point where I can't sleep now unless I drink a shot of whiskey first. Fortunately you're doing internals, so once your soft tissues have healed enough you shouldn't be uncomfortable sleeping.

sometimes ive no pain or discomfort, but the fact of wearing the frames make it harder to sleep....

[YellowSpike]

Not sure what it was, but I think I got close to 5 hours of sleep last night (compared to the usual 2-3 the last two weeks). When I woke up around 3am, I mimicked the cycling motion in bed, and that actually somewhat helped. Lord have mercy, I needed those few extra hours, and I feel so much better (physically and mentally) today.

And my actual exercise bike arrives today, so hopefully my sleep will keep improving. Once I can fix this....I'll be so much better able to deal with all that LL has thrown at me (I've somehow managed a month post op with no sleep)

[ItsMyLife]

that's grea.t.

is pain more or less controlled?

[YellowSpike]

that's grea.t.

is pain more or less controlled?

The pain at this point is only when I have to move my hips (particularly, my right one), and in some PT exercises. Other than that, pain is very manageable. I've only taken pain meds at night the last few days.
 
The bike does help. Went to bed around 11:30/11:45, woke up around 3. Biked for 10 minutes, then slept til around 6:30. Clicked at 7am, biked 10 more min, slept til almost 9:30. It's annoying to have to do it half asleep, but it seems to work.