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[Sweden]

You need to stop with the morphine dude 


House doctor was wrong.

You were right(partially): it certainly doesn't take 6 weeks for a fracture of that kind to heal. My dr thought so.

The gap was my 7cm gap, nothing else.

[Wannabegiant]

You need to stop with the morphine dude 


House doctor was wrong.

You were right(partially): it certainly doesn't take 6 weeks for a fracture of that kind to heal. My dr thought so.

The gap was my 7cm gap, nothing else.

haha yeah i assumed first the house doctor was wrong, but i was confused as you said they where qualified for this, but obviously you where talking about the orthopedic specialist when you said that..

So based on this, i cannot trust my house doctor when to remove the frames but as long as i get to speak to a specialist i should be okey removing the frames in Sweden.

[Wannabegiant]

Update:

Because of Walpurgis night, i wasnt able to apply for Visa this week, so il do so in monday. No big deal as my bone constantly healing im not wasting any time going to Moscow a bit later. However i decided to use this extra time to add a few mm anyway. My goal is 3 mm extra, and ive decided to add it very slowly, 1 turn a day. only 2 mm left at this point. I barely feel any of the effects when lengthening this slow, can still sleep without being bothered.

Slowing down the turning made my knee stiffness on the left go away as well, now it has the same mobility as it did before the infection, and pretty much the same as my right leg, only difference is caused by the Osgood-Schlatters.

My balance has gotten way better, i can finally stand perfectly straight without holding onto anything for long periods of time (it was always hard doing this with a straight back before because it felt like i was gonna fall backwards). Soon i feel i will be albe to walk unaided. I feel much lighter on my feet overall and the frames are less distracting. 

 

[KrP1]

how do you know you have done 4cm , have you got x-rays? do you think that bagirov is a recomendable doctor? i think that have no assistence in lengthening period could be Risky

[PrettyTall]

Still no photos?

[crimsontide]

kirk, honestly, we dont know, its not exact, thats why im going to go kinda early to get x rays done,then finish lengthening  there

[Wannabegiant]

how do you know you have done 4cm , have you got x-rays? do you think that bagirov is a recomendable doctor? i think that have no assistence in lengthening period could be Risky

2 ways, i have an excel spreadsheet where i count the turns and mm i have lengthened. Also the doctor tied a piece of duct tape on each of the bars that pull apart the bone, these are the bars that you turn when you lengthen, and when you measure from the lower end of the duct tape to the top of the screw at the lower half ring, then you get the lengthened ammount.

of course this isnt taking into account the pin bending, but Bagirov told me that these pins are very strong and i would lose at most 3 mm due to pin bending (not sure how reliable that is though, but i choose to trust him). Because of this i am doing 3 mm extra. However i already feel i am at the height i want. My mother measured me barefoot with me standing next to a wall, she used a dvd case and stood on a chair to measure the top of my head and draw a line. Then we measured that line with measuring tape. And i was  slightly above 178 cm. I was somewhere between 174 and 175 before surgery.

I will get x-rays when i travel there which i will do as soon as my Visa is ready, which will take 5 days if everything goes as it should.

And yes it seemed risky to me too but the doctor seemed so confident that it would be okey, and i have no pain and my mobility is already very good, and improving rapidly, no ballerina and no knee bend. So i feel secure because the risky part is pretty much over now, i only turn 0.25 a day now, until i get 2 more mm, then im done.

[Wannabegiant]

Still no photos?

Im gonna post photos of my x-rays for sure. Im still debating if i should show my legs. I dont really see the point. The video in the beginning shows how the frames look, and things like scars are individual how much they show.

[crimsontide]

wannabe, if we can measure how much we lengthen by measuring duct tape distance, then i have an issue... there isnt enough room for  6 cm

[Wannabegiant]

wannabe, if we can measure how much we lengthen by measuring duct tape distance, then i have an issue... there isnt enough room for  6 cm

then they either placed your duct tapes to low, maybe they didnt realize how much you wanted to lengthen. or somehow the duct tape moved, maybe it wasnt attached firmly enough. They told me specifically when i claimed to had done 4 cm that i should measure that distance with a ruler. and i got 4 cm. i was quite surprised how exact it seemed to be along with my spreadsheet.

Also, the lower half wing will move down as you lengthen, so that will increase the space between the screw and the duct tape obviously. Im not sure if you took that into account.

[Wannabegiant]

Goddammit.. just measured my weight, i have lost like 6 Kilos since pre-surgery! most of that weight must have came from the thigh muscles.. man i wish i could work out, i feel skinny like a girl 

And i dont know how much the frames weigh so i have probably lost more than it appears.

[crimsontide]

when you say measure from duct tape to top of screw, do you mean the one we use to fasten the nut? or the one above that, which we actually turn to lengthen?

[Wannabegiant]

when you say measure from duct tape to top of screw, do you mean the one we use to fasten the nut? or the one above that, which we actually turn to lengthen?

the lengthening screw.

[KiloKAHN]

Goddammit.. just measured my weight, i have lost like 6 Kilos since pre-surgery! most of that weight must have came from the thigh muscles.. man i wish i could work out, i feel skinny like a girl 

And i dont know how much the frames weigh so i have probably lost more than it appears.

Man, that's one of the things that's going to suck during recovery. I've got a lot of bulk and once my legs get skinny I'm going to look like one of those gym rats that only trains the upper body and has chicken legs as a result.

[Wannabegiant]

update:

i have booked the flight, will be traveling on May 13, only staying the night there and flying back the next day. Visa will be ready on monday.  Everything feels good and im done lengthening, so i guess all they need to do at the clinic is take an x-ray and see if there are any adjustments needed and see how much i actually lengthened. I dont want any cosmetic changes ive decided, the legs look functional as they are already.

walking is getting better every day, my legs feel lighter and there is much less pressure. I guess there are some muscles around the knees that have been inactive for so long that i needed to train them a bit to relieve the pressure. Thats how i would explain it.

It feels really good, pretty much no stiffness, no x-leg, no ballerina..i predict i will be able to walk without crutches/aid within 2 weeks from now.

[Wannabegiant]

Small update:

Today i managed to take my first steps without holding onto anything, and it didnt hurt! I walked very akwardly and slow though, only slightly lifting each foot up and moving it forward slowly, almost sliding across the floor.

recovery is going faster than i expected

[Taller]

Congratulations on your progress! How strange a feeling is it to have the metal pins going through your bones? Do your legs feel noticably weak with the frames on? Are you still without ballerina?

[Wannabegiant]

Congratulations on your progress! How strange a feeling is it to have the metal pins going through your bones? Do your legs feel noticably weak with the frames on? Are you still without ballerina?

Thank you! A couple of weeks ago the legs did feel week, but looking at them now they look like they have about the same thickness as before and when i walk unaided, the pressure is not that bad, and it doesnt hurt, a walk very slowly and akwardly though. I only feel a little discomfort in the pins if i step a bit sidways to abruptly or sometimes when i bend my knees to fast, but it is very slight.

 Still no ballerina! and no difficulties bending the knees either 

[Wannabegiant]

Big Update:

Got home from my second trip to the clinic for the check up. I just stayed for one night this time.

The results seem very good, they didnt have to adjust much at all, only changing the angle slightly. Also the x-rays look very promising. Im gonna post them later for you to judge, but unfortunately i had to leave for my flight home very early, so Bagirov didnt have time to come see me, so i didnt really get to ask the questions i wanted to, but i will have to email him about later, his assistant did try to answer some of it, but his english is not so good either.

[Moubgf]

Small update:

Today i managed to take my first steps without holding onto anything, and it didnt hurt! I walked very akwardly and slow though, only slightly lifting each foot up and moving it forward slowly, almost sliding across the floor.

recovery is going faster than i expected

Not to sound like a complete moron. But what exactly is hindering you from walking normal. I want specific answers not to long answers just what is wrong at the moment and what are you "waiting for" to happen inside your leg so you can walk normally.

[Wannabegiant]

Not to sound like a complete moron. But what exactly is hindering you from walking normal. I want specific answers not to long answers just what is wrong at the moment and what are you "waiting for" to happen inside your leg so you can walk normally.

before LL, walking is smooth and you barely feel the legs when you put your feet to the ground for every step etc, but after LL and now, you feel pressure going through each section of the legs every time you take a step and the body weight gets placed onto one leg at a time, especially at the pin sites sections do you feel pressure. And while it doesnt hurt anymore, it feels like it could hurt if i wasnt careful, so its a combination of fear and the fact that the legs still feel more heavy and not as strong as before, but its recovering fast it seems. It gets easier every day.

[Michaelbkk]

Hi, are these frame weight bearing.?

[Wannabegiant]

Hi, are these frame weight bearing.?

yes they are

[GeTs]

Man Hows walking during consolidation? I plan doing the operation with bagirov at the end of may( not dure which year though) so i'll spend 3 months For lengthening in moscow and during consolidation I should be back home. According to this I should finish distraction phase by the time uni starts which is the reason why I'm wondering about the walk. Also when you're in the consolidation phase do you still need to avoid knee bending and all the stuff that you did during the distraction phase?
are you able to walk at decent speed now that you consolidate? All I need is to go to uni and home and that's about 15 min of walking. Do you think the price will rise lets say in the next 2 years?

[Taller]

Hi. Have you been out in public with your frames? How hide-able are they? Has anyone noticed them under sweatpants? How do you explain their presence to those around you who don't know the truth about your LL? I was also wondering if Dr. Bagirov's prices are likely to rise in the next few years. Thanks so much for your answers and for this awesome patient experience record, by the way!

[Moubgf]

before LL, walking is smooth and you barely feel the legs when you put your feet to the ground for every step etc, but after LL and now, you feel pressure going through each section of the legs every time you take a step and the body weight gets placed onto one leg at a time, especially at the pin sites sections do you feel pressure. And while it doesnt hurt anymore, it feels like it could hurt if i wasnt careful, so its a combination of fear and the fact that the legs still feel more heavy and not as strong as before, but its recovering fast it seems. It gets easier every day.

Like a bike with good "dampers" like dirt bike? you get that cushing support "bouncy". So after LL i assume that feeling is gone. So when you take a step you don't feel "bouncy" right?. kinda like 2X gravity when walking?

[GeTs]

Hi. Have you been out in public with your frames? How hide-able are they? Has anyone noticed them under sweatpants? How do you explain their presence to those around you who don't know the truth about your LL? I was also wondering if Dr. Bagirov's prices are likely to rise in the next few years. Thanks so much for your answers and for this awesome patient experience record, by the way!

Hope not because I'm doing this in Russia only because of the price otherwise I wouldn't even think of

[Wannabegiant]

Man Hows walking during consolidation? I plan doing the operation with bagirov at the end of may( not dure which year though) so i'll spend 3 months For lengthening in moscow and during consolidation I should be back home. According to this I should finish distraction phase by the time uni starts which is the reason why I'm wondering about the walk. Also when you're in the consolidation phase do you still need to avoid knee bending and all the stuff that you did during the distraction phase?
are you able to walk at decent speed now that you consolidate? All I need is to go to uni and home and that's about 15 min of walking. Do you think the price will rise lets say in the next 2 years?

walking is improving very fast, i can walk now without aid, but quite akwardly and slow (i walk kind of like a robot would, robot dance etc), it doesnt hurt and eventually i will walk normally with the frames on, they allow full range of motion.

You should sleep with straight legs and wear footholders when laying down on your back even in consolidation phase, but of course its less likely to develop any of those problems now if you didnt get them during lengthening phase.

And yes, i think the price will rise in the future, in 2 years yeah probably. I remember reading a diary from a few years ago at old forum, a girl who was a patient with Bagirov, her price was 6000 dollars, while mine was 6450 euros, a substantial increase.

[Wannabegiant]

Hi. Have you been out in public with your frames? How hide-able are they? Has anyone noticed them under sweatpants? How do you explain their presence to those around you who don't know the truth about your LL? I was also wondering if Dr. Bagirov's prices are likely to rise in the next few years. Thanks so much for your answers and for this awesome patient experience record, by the way!

Yeah when i traveled to the airport after my first visit in Moscow on my way back home, it was mostly sitting in a cab, then a wheelchair waiting at the gate on the airport, and then moving through the airport at home with an assistant moving me on the wheelchair. then taking the car home.

That same thing i did on my check up return in Moscow this last tuesday. So its basically a whole lot of sitting down (flight, cab drive, wheelchair). I havent gone out in Sweden or met any friends etc. but i might do it when i can walk normally, i would need wide pants to cover the fixators though.

[Wannabegiant]

Like a bike with good "dampers" like dirt bike? you get that cushing support "bouncy". So after LL i assume that feeling is gone. So when you take a step you don't feel "bouncy" right?. kinda like 2X gravity when walking?

yeah it doesnt feel like dampers during LL, because the pins keep everything locked and hard, i guess it feels similar to a bike without any dampers at all when walking, its just hard pressure going through the lower legs while the flesh stays rigid. But as i said this feeling is starting to get less and less noticable. The stronger the muscles get i guess they start to work again as dampers and you start to feel the legs less as you walk.

Soon it will feel like it did before LL, at this pace im improving at i would guess within a month i can walk like before LL and with the pressure gone.

[Wannabegiant]

I was trying to take pics of the x-rays, but it isnt very high quality so it can be hard to see details... i will probably have to scan them. Il try to get it done in the coming days.