Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[crimsontide]

after a few months of lengthening... how long does it take to  consolidate??? what i mean is, if i went a few days of not lengthening at this stage, would i then need to rebreak bone agai to lengthen say 1 cm more?

[Medium Drink Of Water]

It would take way more than a few days for the bone to consolidate to the point it would have to be re-broken.  Don't worry about taking breaks; it was a common practice in Beijing for people to take breaks from lengthening if they were having complications.

[crimsontide]

ty medium

dr franz said 2 weeks, probably more of no lengthening


ok, here is the latest update... i need advice

the person that was supposed to help finally came this week.... was supposed to go drop off visa application today, but of course is not here, and didn't do it... the visa section of the embassy is now closed... this guy just can get get thongs done

i have 2 options, and only 2,as far as i can see

1- contact my embassy today, explain my situation, see if they can help me get visa for india, though i don't know if they help in these matters

2-go to south africa, but could only get  a release there, not anything else, such as plating, removal,etc

these are my only 2 options,... i think.... i don't think ill be treated in the  united states by insurance, as this was an elective procedure, so thats out

[Wannabegiant]

wannabe...  i did not state he does them on every patient...

read what i wrote,.  "if its not beneficial... why do the top drs do it  routinely even for prevention...  before any issues arise?   


The proper treatment would to be test beforehand to determine if tendon, etc is too tight, and perform the surgery beforehand... again, drs like paley do exactly this

again... patients determined to have a tight tendon,   get a release.... before any issues arise...  everything quoted supports what i said... again, tell me what is wrong with what i said?   You do not even attempt to reply to that fact....that they are tested, and if found to have a tight tendon,  get a release surgery before any ballerina, not after major ballerina, not after a little, but even before any ballerina... why??? as a preventive measure... that is simply a fact

you made this statement

"Every patient that does 8 cm needs it according to them, but we know even that isnt true since Rgkey managed 9 cm with pt instead. However just because releases help if you do very high ammounts of lengthening does not mean they are beneficial, it means they are necessary because you already damaged the legs by lengthening over the safe limit, and the preemtive release will damage the tendon further but allow you to get movement back faster, and it also means you will avoid having to do more complex and expensive surgery to fix it afterwards if you already got ballerina."

again,    you are avoiding what paley actually says....     that if he determines their tendon to be tight,  he will do a release....  he specifically says this... if the achilles is too tight, he will do a release...  .. he says it is required if the test determines the tendon is tight

you also are not properly reading what he says.., the numbers,etc, he gives that you quote are for femur lengthening, not tibia

if you want to reply, you can reply in my thread if you like, as i don't wanna take over this thread

replying here since it got off topic.

Wrong again crimson, I did read what you wrote and it was inaccurate. Specificially when you say tendon release is beneficial, but its not. Tendon release is best avoided but some patients require it. You might not have had required it though if you lengthened slower or used footholders. Most cases of ballerina can be solved through PT.

I dont see how anybody reading that faq can get the idea that tendon releases are something good. Its only for some patients that they are needed but that simply means those specific patients are not able to lengthen as much without damaging their body more, and thus not recovering as well as those who dont need it.

Since they mention that the surgery required afterwards if you already got ballerina feet is worse and more complex, that is the only reason they do it preemtively if they suspect the patients, but its still not a good thing for the body.

and while those specific numbers was for femur, it irrelevant, as mentioned, if the achilles tendon is to tight before the surgery, that simply means your body is not able to lengthen as much without weakening it more with a release.

"If these structures are tight before surgery and not prophylactically lengthened then muscle/joint contractures that require later more expensive surgery are required (in the lay literature these are referred to as duck ass deformity for tight iliotibial band and fascia lata, and ballerina feet for tight Achilles tendon). Prophylactic anterior compartment release is often done at the time of tibial lengthening. There is no additional charge for this procedure. This is done to prevent compartment syndrome."

This quote from Paley is basically saying that the only reason they do it from the beginning with some patients is to prevent them from having to do an even worse surgery afterwards if you develop severe ballerina. Again nothing here suggests it being a beneficial thing, at least not for your case as you already have ballerina.

[Sweden]

if i got nail inserted this week, ill be walking fine by oct.... instead of    being in agony with frames..... though my primary concern is   getting the release

I'm about 90 kilo now or so, maybe a little less

i like sweden, but  we know dr sarin is a hack..... and sweden is now talking about getting femurs done.... how bad can his issues be if he is thinking about  doing this again

  i'm not a dr, but i can  say with some confidence, that rgkey's severely bent leg   is harming his walking ability.....

if lath  decreases  recovery time to around.8 months per cm, that sounds ok to me, to be honest.... though I'm still hesitant because of knee pain

medium, sweden,.. anyone that has gotten lon or lath... please post here how your knees fail, and if you do have psi, how bad is it, and if you regret  doing it instead of external

Holy mother of god! You are 90kg?

Just stand up as many hours as you can every day. Then when you can walk you just need to walk as much as possible.

The incision in the patellar tendons are the worse I can tell you. If you sit for a while you can really feel how painful it will be to stand up. It looks like an old man rising from the chair.
Then blood flows to the knees and it's all fine after 4-5 strides.
Some days are better, other are worse.
When you(me) get older it will be much worse - guaranteed!!

LL is bad, really bad for your legs. I want to do femurs bc I want to be taller. Period!
I wanted this when I was in the middle of my professional athlete career, but waited until I was done with it.
Now I will never be able to get back to that level but I'm satisfied with the level I know I'll be at. I can already take out lots of our members and I've knocked out one guy really bad. That gives me a special kind of satisfactory which I can not describe.

Everyone's case is individual for them selves.
My athletic level was probably one of the highest ever to do LL so my current 50% today could be someone else's 100%.
That doesn't mean it's that persons 100% healthy lifestyle.
I mean how fun is a life when you NEVER run except you need to catch the train or something like that?
Some people are satisfied with that - but I'm not!!

I'm already stronger than many in my class at the gym, but I was very much ultra stronger than them before LL as well so it doesn't mean I'm at 90% just bc I can leg press 250kg(in the machine)

If you fight ballerina you will win, the body can adapt.
I have t really read and fully understood your situation being in marocco and all that but it seems worrying considering your current condition. How did it even happen?

[Classical]

Crimson, your either option sounds better than your currently situation, which is waiting around, getting depressed, and nothing is going anywhere.

To be honest, once you get a release, even without taking off your frame, thing will drastically change, and your mood will drastically change as well.

One thing you shouldn't do is debating what to do for too long, and main while still stay in this rotted situation without help. Act quickly, and leave!

[Medium Drink Of Water]

crimsontide have you been standing or are you just waiting for the release surgery as your only form of PT?

[Classical]

Empty

[Medium Drink Of Water]

crimsontide, Dr. Bagirov says you don't need the release surgery.  It weakens the tendons permanently.   I think you should listen to your doctor and not get any more surgeries.

IM nailing might cause permanent knee discomfort like I have.  I think you made the right choice going external-only.  It led you to a dark place but things will start to get better and life will get more bright if you work hard.

You need to stand until it hurts, then take a short break, and then stand some more.  And then keep repeating.  Not being able to turn doesn't matter if you're just standing.  With your 90kg weight, standing will work wonders to stretch out that Achilles.

[Classical]

Sorry Medium, I got a bit overreacted as well, my apology! I deleted my previous posting.

Crimson, I agree with Medium that to stand is the best way to cure ballerina foot. In fact, my doctor Dr Donghoon Lee put the most emphasize on standing. He told me more than once that standing is even better for ballerina foot than walking. While you are waiting to decide what to do next, try to stand as much as you can, it will help with your ballerina foot tremendously.

[crimsontide]

i contacted embassy... my situation is i can easily get up using a walker, but i can't walk really.. maybe because i haven't in  a while, but its really from the ballerina... its really bad... also, my legs feel ok, except now when I'm on my toe standing,  my left knee feels some discomfort when i attempt to walk or transfer weight


i contacted embassy, because i have no other choice... theres been an odd black oil leaking from my frame i think... but can't be sure.... my  frame has rings so tight  i can't even see there.... this can't be from my legs i assume, must be frame, because it is black

i just got on the forum for the first time in a while, so haven't really read new posts here. i wanted to post fast... i think the knee  discomfort when i transfer weight is due to ballerina...   standing on toes is not very stable, and is causing undue stress...

not sure how common some knee discomfort is... my knee feels fun otherwise, i can bend,etc..... even when  standing on toes, i can  basically squat down.... i can not walk really now at all, as the tendon is extremely tight, and i am on my toes now 4 or so cm...

i have not done much pt... i am 100% getting a release.... my  issue is too extreme, and my situation as such demands it... i am alone, i need to be able to walk , i do not have the luxury of  doing pt for a year to fix it....

here is a photo of the black goo... it is definitely from the frames... if you notice, the ring is incredibly close to my leg, so i can't see underneath it, and the pressure i get from the ring is bad....

[crimsontide]

the goo, well, I'm not in pain , so i guess its ok... but  maybe not.... as you can see, its is black,  never seen anything like this  come out of any human, so  its from the frame.....

[crimsontide]

and yes.... i think everything will drastically change, mood included, once i get release, even with frames on.... as id be able to put heels on ground,etc


having to stand on toes, 4 c from the ground on both feet is weird... but doable.... but walking now is  too dangerous... when i say I'm on my toes and heel isn't on the ground, i mean I'm really on my toes.... at an extreme angle... think extreme ballerina position... now imagine trying to walk in that position with legs that haven't consolidated yet.... its just not possible.... i don't have nurses or family to help, so doing pt to fix it is not practical for me..... i have to be able to walk

with this black oil issue, i also feel i need to get the frames removed... theres just too many issues   with keeping them on....though as long as i can find out and fix this issue, wearing frames would be doable.... the ballerina is definitely not....

[123]

My god, clean your pins and that "black goo" is just dried blood and underneath that probably an infection.

You need to stop being lazy or you wiill get yourself into serious trouble, clean your pins and do PT.

Btw your problem with ballerina is not extreme, you are just very very lazy and not very smart.

[crimsontide]

jesus christ...


123... now listen closely... it is not dried....at all... that is not dried blood, because it is not dried, it is wet...... it is liquid, and definitely not infected... , btw it is a flowing black liquid, not congealed....

regarding my issue with ballerina, you have absolutely no idea whether it is extreme or not, as  you have never met me, so you must rely on what i say, which is that i have 4 or more cm in each foot, and  must rely on myself, so the ballerina is absolutely extreme in my case..... do you have information to the contrary??

the "debris" is from jeans that i wear, as i have to wear jeans most of the time here

so 123, now that we've established that is not dried blood, do you  have anything to say about what it actually is?

[crimsontide]

replying here since it got off topic.

Wrong again crimson, I did read what you wrote and it was inaccurate. Specificially when you say tendon release is beneficial, but its not. Tendon release is best avoided but some patients require it. You might not have had required it though if you lengthened slower or used footholders. Most cases of ballerina can be solved through PT.

I dont see how anybody reading that faq can get the idea that tendon releases are something good. Its only for some patients that they are needed but that simply means those specific patients are not able to lengthen as much without damaging their body more, and thus not recovering as well as those who dont need it.

Since they mention that the surgery required afterwards if you already got ballerina feet is worse and more complex, that is the only reason they do it preemtively if they suspect the patients, but its still not a good thing for the body.

and while those specific numbers was for femur, it irrelevant, as mentioned, if the achilles tendon is to tight before the surgery, that simply means your body is not able to lengthen as much without weakening it more with a release.

"If these structures are tight before surgery and not prophylactically lengthened then muscle/joint contractures that require later more expensive surgery are required (in the lay literature these are referred to as duck ass deformity for tight iliotibial band and fascia lata, and ballerina feet for tight Achilles tendon). Prophylactic anterior compartment release is often done at the time of tibial lengthening. There is no additional charge for this procedure. This is done to prevent compartment syndrome."

This quote from Paley is basically saying that the only reason they do it from the beginning with some patients is to prevent them from having to do an even worse surgery afterwards if you develop severe ballerina. Again nothing here suggests it being a beneficial thing, at least not for your case as you already have ballerina.

again, you avoided what i said.... nothing i said was wrong.. you stating it is wrong does not mean it is wrong

the fact is that top drs do releases when needed, even as preventive measures.... not simply after the fact... why???

because they have determined that getting the release is more beneficial than acquiring ballerina, or that getting a release to fix the ballerina is preferred over having ballerina over an extended time ,even if it could be fixed by pt eventually... again, you simply do not address this....

you're reasoning based on a false dilemma, or all or nothing... that a release can't be beneficial  because it could have complications

you fail to account for that having ballerina for an extended period of time can most definitely have  complications too.... it isn't, this is  100% good, that is 100% bad....

all your reasoning can be used to justify  having the release


you stated that tendon releases are best avoided, but  so is ballerina... yet i have it now...

wannabe, lets take this very logically... start with premises we can agree on

1- palsy does releases

2- paley does do it not just  as a fix, but as a preventive measure

i think  we can logically infer that the reason for doing the release beforehand is because  in his mind, the complications of ballerina outweigh the risks of the release? again,  keep this on track, and actually interact with what i'm saying....  yes, releases can cause issues, but so can ballerina

by the way... you are 100% wrong about sweden's issues having nothing to do with ballerina... he has explicitly said that his ankle issue is because of lingering ballerina

[Wannabegiant]

again, you avoided what i said.... nothing i said was wrong.. you stating it is wrong does not mean it is wrong

the fact is that top drs do releases when needed, even as preventive measures.... not simply after the fact... why???

because they have determined that getting the release is more beneficial than acquiring ballerina, or that getting a release to fix the ballerina is preferred over having ballerina over an extended time ,even if it could be fixed by pt eventually... again, you simply do not address this....

you're reasoning based on a false dilemma, or all or nothing... that a release can't be beneficial  because it could have complications

you fail to account for that having ballerina for an extended period of time can most definitely have  complications too.... it isn't, this is  100% good, that is 100% bad....

all your reasoning can be used to justify  having the release


you stated that tendon releases are best avoided, but  so is ballerina... yet i have it now...

wannabe, lets take this very logically... start with premises we can agree on

1- palsy does releases

2- paley does do it not just  as a fix, but as a preventive measure

i think  we can logically infer that the reason for doing the release beforehand is because  in his mind, the complications of ballerina outweigh the risks of the release? again,  keep this on track, and actually interact with what i'm saying....  yes, releases can cause issues, but so can ballerina

by the way... you are 100% wrong about sweden's issues having nothing to do with ballerina... he has explicitly said that his ankle issue is because of lingering ballerina

Nope, everything about your statement was wrong, get over it. A tendon release is not beneficial period. If a patient can avoid doing it, that is always a better outcome. Some patients require it from the beginning to prevent them from having to do a more serious surgery afterwards if they get severe ballerina. But not all patients who get ballerina need surgery, like Sweden and Rgkey.

Btw its funny you use Swedens case to support your argument (even though you are completely wrong and dont know what you are talking about) when he clearly states he doesnt need a release and its bad to do it.

A release will always weaken the tendon permanently. So it cannot be beneficial. Having ballerina is another issue, but if you already have it, then it wont get worse from there as long as you do pt and stop lengthening.

You want to justify doing something the easy way, and you are in denial of the factual drawbacks you get from doing it. Pt is better in every way other than the fact that it takes more effort and a longer time. Do a release if you want to, i dont really care, but dont fool yourself thinking it is better than doing pt in the long run.

[crimsontide]

in an older post, mentioned something about issues with the dr in russia... i said i didn't want to post about it,   and received pms about it.. i   still didn't say anything


well, i will say now

one of the big reasons for me wanting to go to another surgeon is because while i was at the clinic, after surgery, the other patients would talk, tell you about stories

became  aware of 3 other cll cases with bagirov,

1- a woman that lengthened maybe 7 cm....   she had her frames taken off, then either fractured her legs or developed x legs... she had to come back to clinic, and could not walk...  this was approximately 2 years after surgery... i never met this woman, but a few females there had, and even had photos... i think she has a diary, but on a russian site

2- a russian man that developed bad ballerina, and to my knowledge still has frames on 11 months later after lengthening 4 or 4.5 cm... i have spoken to this individual,and so has wannabe

3- this one is the worst and is the incident i had alluded to i an earlier post.... dr fahri, who is dr bagirovs assistant  showed me in his laptop a man that had surgery and lengthened quite a bit....  his legs looked extremely bad... the worst x legs you can imagine..... dr fahri told me he had done this in baku, and laughed, said that bagirov didn't even know he had performed this surgery... but to him, the situation was comical... 

i did not want to state the last thing publicly, as  dr fahri explicitly told me bagirov had no idea he had done it... but it's relevant, because dr fahri is the one that basically supervises everything after the surgery

[Wannabegiant]

in an older post, mentioned something about issues with the dr in russia... i said i didn't want to post about it,   and received pms about it.. i   still didn't say anything


well, i will say now

one of the big reasons for me wanting to go to another surgeon is because while i was at the clinic, after surgery, the other patients would talk, tell you about stories

became  aware of 3 other cll cases with bagirov,

1- a woman that lengthened maybe 7 cm....   she had her frames taken off, then either fractured her legs or developed x legs... she had to come back to clinic, and could not walk...  this was approximately 2 years after surgery... i never met this woman, but a few females there had, and even had photos... i think she has a diary, but on a russian site

2- a russian man that developed bad ballerina, and to my knowledge still has frames on 11 months later after lengthening 4 or 4.5 cm... i have spoken to this individual,and so has wannabe

3- this one is the worst and is the incident i had alluded to i an earlier post.... dr fahri, who is dr bagirovs assistant  showed me in his laptop a man that had surgery and lengthened quite a bit....  his legs looked extremely bad... the worst x legs you can imagine..... dr fahri told me he had done this in baku, and laughed, said that bagirov didn't even know he had performed this surgery... but to him, the situation was comical... 

i did not want to state the last thing publicly, as  dr fahri explicitly told me bagirov had no idea he had done it... but it's relevant, because dr fahri is the one that basically supervises everything after the surgery

The 2 first stories i am aware about, the girl who fractured her leg (her leg got bent actually, so she had to redo the process), the reason that happened was because she started doing sports/activities before she was allowed too. You are supposed to use crutches for a while after frame removal and then for at least 6 months not do any sports. So since she didnt follow the doctors advice she still has issues 2 years after surgery. At least im pretty sure this is the same girl as you where talking about.

The russian man, i know him and have talked a lot with him, and i already mentioned that he blames himself for his problems now, he admits to not following instructions, lengthening to fast and not slowing down when he got a severe infection, also overexerted himself to early, and developed ballerina in one leg. He also had like 6 mm discrepancy between his legs when he was done with the lengthening phase and had to fix that, and a few months afterwards decided to add 5 mm more to both legs. This coupled with slower than average consolidation is the reason why it took him so long, but he doesnt blame Bagirov.

The last thing you mention i have never heard about, who did the surgery in Baku? i have a hard time imagining Fachri would just show you a failed case of a patient if he himself was the surgeon and he was at fault for the failure. He is a doctor so it doesnt sound believable he would laugh if he caused the patients those problems. I know Fachri and have talked a lot with him. More likely that patient didnt follow instructions and most likely lengthened to much or turned those other screws that are used for correction more than he should have.

Btw i got a PM (will keep the user private) that told me Bagirovs clinic does not allow patients to lengthen at home anymore because some patients dont "follow their instructions" and hurt themselves. This poster was going to do the surgery with Bagirov but might not be able to now because he cant afford to be away for 3 months to lengthen.

Im almost 100% sure this decision of the clinic has a lot to do with your case of lengthening and how you completely neglected their recommendations.

[Sweden]

This is why I never wanted to go to Russia in the first place.

I've heard these stories as well and a couple others where patients break their legs after frame removal.
Very bad!

But many times it's bc of stupid patients.

[Wannabegiant]

This is why I never wanted to go to Russia in the first place.

I've heard these stories as well and a couple others where patients break their legs after frame removal.
Very bad!

But many times it's bc of stupid patients.

Im sure there exists stories about leg breakage in most LL countries :p But yeah for sure it is not always the doctors fault.

[crimsontide]

The 2 first stories i am aware about, the girl who fractured her leg (her leg got bent actually, so she had to redo the process), the reason that happened was because she started doing sports/activities before she was allowed too. You are supposed to use crutches for a while after frame removal and then for at least 6 months not do any sports. So since she didnt follow the doctors advice she still has issues 2 years after surgery. At least im pretty sure this is the same girl as you where talking about.

The russian man, i know him and have talked a lot with him, and i already mentioned that he blames himself for his problems now, he admits to not following instructions, lengthening to fast and not slowing down when he got a severe infection, also overexerted himself to early, and developed ballerina in one leg. He also had like 6 mm discrepancy between his legs when he was done with the lengthening phase and had to fix that, and a few months afterwards decided to add 5 mm more to both legs. This coupled with slower than average consolidation is the reason why it took him so long, but he doesnt blame Bagirov.

The last thing you mention i have never heard about, who did the surgery in Baku? i have a hard time imagining Fachri would just show you a failed case of a patient if he himself was the surgeon and he was at fault for the failure. He is a doctor so it doesnt sound believable he would laugh if he caused the patients those problems. I know Fachri and have talked a lot with him. More likely that patient didnt follow instructions and most likely lengthened to much or turned those other screws that are used for correction more than he should have.

Btw i got a PM (will keep the user private) that told me Bagirovs clinic does not allow patients to lengthen at home anymore because some patients dont "follow their instructions" and hurt themselves. This poster was going to do the surgery with Bagirov but might not be able to now because he cant afford to be away for 3 months to lengthen.

Im almost 100% sure this decision of the clinic has a lot to do with your case of lengthening and how you completely neglected their recommendations.

wannabe,... let's put this all out there... let's  be honest

ill address  case number 1

1- according to what i heard, it was not because of sports issues... but again,  i don't know know... unlike you,  who claims to know 100% sure how it happened,i do not... you post as if you know... which you obviously do not... you are posting what  you were told.... you could be right,  but you could be wrong... if this was an isolated case, then okay.... but it clearly is not

2-the russian man,  used to blame the drs.... he changes... but the fact is he's still in frames almost a year later after lengthening  around 4 cm

3-who did the surgery in baku???   i already stated... fahri...  the man that oversees everyone's  treatment after surgery..... now you seem to be just giving excuses   as to why it happened... but  i'm the one he showed... and yes, he absolutely thought it was comical, whether you want to believe it or not....... the man also had severe ballerina...... in your defense of fahri, you fail to mention he did this without the permission of bagirov, which i think he needs... that was actually my main point.... he diid it without bagirov knowing, and yes, he told me not to say anything, though he didn't seem too concerned about telling me... i don't know exactly why this man's legs are deformed now, but again... this isn't an isolated case, there are others.... cases of  alignment,etc\

in facrt,  id say the majority of cases i know of have these complications,which is exactly the point.... if its happening so much, perhaps the drs have  a part of the blame

i wanna address your last comment... how i completely neglected their recommendations.... again, you sound like a  spokesman more than an unbiased 3rd party observer

first of all,  you have no idea what they recommended... because we have never met

i can tell you their recommendations....keep legs straight, try to keep ankle straight....  that's all


there was absolutely no recommended exercises or pt plan given to me..... there was no instruction on proper pin site care,etc... there was no pt done at all while i was there, and there was no x ray taken after the surgery, even though i was there a few weeks after...

regarding the statement that bagirov doesn't allow patients now to lengthen at home... then where do they lengthen??? surely not in russia, as the clinic has 4rooms, and no guesthouse....so where are these new patients lengthening? baku? for $1800 euro a month? it is not in Moscow, that is for sure

[Wannabegiant]

wannabe,... let's put this all out there... let's  be honest

ill address  case number 1

1- according to what i heard, it was not because of sports issues... but again,  i don't know know... unlike you,  who claims to know 100% sure how it happened,i do not... you post as if you know... which you obviously do not... you are posting what  you were told.... you could be right,  but you could be wrong... if this was an isolated case, then okay.... but it clearly is not

2-the russian man,  used to blame the drs.... he changes... but the fact is he's still in frames almost a year later after lengthening  around 4 cm

3-who did the surgery in baku???   i already stated... fahri...  the man that oversees everyone's  treatment after surgery..... now you seem to be just giving excuses   as to why it happened... but  i'm the one he showed... and yes, he absolutely thought it was comical, whether you want to believe it or not....... the man also had severe ballerina...... in your defense of fahri, you fail to mention he did this without the permission of bagirov, which i think he needs... that was actually my main point.... he diid it without bagirov knowing, and yes, he told me not to say anything, though he didn't seem too concerned about telling me... i don't know exactly why this man's legs are deformed now, but again... this isn't an isolated case, there are others.... cases of  alignment,etc\

in facrt,  id say the majority of cases i know of have these complications,which is exactly the point.... if its happening so much, perhaps the drs have  a part of the blame

i wanna address your last comment... how i completely neglected their recommendations.... again, you sound like a  spokesman more than an unbiased 3rd party observer

first of all,  you have no idea what they recommended... because we have never met

i can tell you their recommendations....keep legs straight, try to keep ankle straight....  that's all


there was absolutely no recommended exercises or pt plan given to me..... there was no instruction on proper pin site care,etc... there was no pt done at all while i was there, and there was no x ray taken after the surgery, even though i was there a few weeks after...

regarding the statement that bagirov doesn't allow patients now to lengthen at home... then where do they lengthen??? surely not in russia, as the clinic has 4rooms, and no guesthouse....so where are these new patients lengthening? baku? for $1800 euro a month? it is not in Moscow, that is for sure

I got told that story by the nurses, of course we used a translator on my phone but i see no reason why they would lie. In your version of the story you just claim the legs bent or broke, but you didnt mentioned why it happened. Im more inclined to believe that it happened because she was to active before she was allowed to rather than it happening for no reason other than removing the frames to early. I met former patients there and they all seemed very knowledgable of the clinic and they all claim Bagirov was a good doctor. He wouldnt have a good reputation if peoples leg broke or bent because of removing the frame to early even if the patients followed his instructions. Btw you are talking crap again, i never claimed i knew 100% what happened, that should be obvious since i wasnt there to see it happen. We also have no reason to believe this isnt an isolated case, or a very rary case at least.

2. Nope, ive talked to him very often ever since i met him during my first stay at the clinic in mars, he has never told me it was Bagirovs fault. He also mentioned that he has been talking to you, and that you do not follow doctors recommendations. We already know you lengthened to fast.

3. Im not making excuses, just your story sounds very unbelievable, it wouldnt suprise me if you misunderstood what Fachri was saying since his english isnt very good at all, he uses a translator and it can get very inaccurate from the original message intended. Also like i suspected you have no idea why he got deformed legs, so why assume it was the doctors fault?

If we are being honest here, you dont have any case where we can say for sure the doctors made the patient have deformed legs, at most you might have 1. you cant make a hyperbole out of that and claim "it is happening so much", thats just laughable.

The reason im not likely to taking your side over the doctors, is because they have mentioned at the clinic that you where lazy, the things ive read in this diary makes it seem very apparent that they are correct too. Also, i have no problems and i followed the instructions so i have no reason not to believe them that if you follow instructions you will be fine.

They told me use a footholder, they gave me a box at the clinic to keep my feet 90 degrees. Walk ca 3 times a day in the beginning and more as you recover. Also stretch the achilles by pushing up the toes/front part of the feet towards the knee, this can be achieved in many ways, doesnt take a genious to figure out. Keeping the legs straight to prevent knee bend.

This combined with taking the medicine in correct order, and how to use ointment for infections, avoid getting water in the pin sites, and not lengthen faster than 0.75 mm/day, slow down if i get to much pain (which never got) or infection. Also since i already told them how much i intended to lengthen they didnt have to mention any limits. im sure if i told them i wanted 8 cm they would have warned me of the risks.

majority of these things are the same as they told you, the others i made sure to ask them about because i did my research about what you should know before doing LL.

The only pt you need is to stretch akilles and walk, im sure they told you this. I didnt get an x-ray either before i returned ca 2 months later for check up.

In terms of pin site care, all i needed to know how to do it was watch one of the nurses do it, they used anti septic fluid and sterilized
compressors. not difficult.

And yes apparantly they have them lengthen at an appartment in Baku now. 

[crimsontide]

I got told that story by the nurses, of course we used a translator on my phone but i see no reason why they would lie. In your version of the story you just claim the legs bent or broke, but you didnt mentioned why it happened. Im more inclined to believe that it happened because she was to active before she was allowed to rather than it happening for no reason other than removing the frames to early. I met former patients there and they all seemed very knowledgable of the clinic and they all claim Bagirov was a good doctor. He wouldnt have a good reputation if peoples leg broke or bent because of removing the frame to early even if the patients followed his instructions. Btw you are talking crap again, i never claimed i knew 100% what happened, that should be obvious since i wasnt there to see it happen. We also have no reason to believe this isnt an isolated case, or a very rary case at least.

2. Nope, ive talked to him very often ever since i met him during my first stay at the clinic in mars, he has never told me it was Bagirovs fault. He also mentioned that he has been talking to you, and that you do not follow doctors recommendations. We already know you lengthened to fast.

3. Im not making excuses, just your story sounds very unbelievable, it wouldnt suprise me if you misunderstood what Fachri was saying since his english isnt very good at all, he uses a translator and it can get very inaccurate from the original message intended. Also like i suspected you have no idea why he got deformed legs, so why assume it was the doctors fault?

If we are being honest here, you dont have any case where we can say for sure the doctors made the patient have deformed legs, at most you might have 1. you cant make a hyperbole out of that and claim "it is happening so much", thats just laughable.

The reason im not likely to taking your side over the doctors, is because they have mentioned at the clinic that you where lazy, the things ive read in this diary makes it seem very apparent that they are correct too. Also, i have no problems and i followed the instructions so i have no reason not to believe them that if you follow instructions you will be fine.

They told me use a footholder, they gave me a box at the clinic to keep my feet 90 degrees. Walk ca 3 times a day in the beginning and more as you recover. Also stretch the achilles by pushing up the toes/front part of the feet towards the knee, this can be achieved in many ways, doesnt take a genious to figure out. Keeping the legs straight to prevent knee bend.

This combined with taking the medicine in correct order, and how to use ointment for infections, avoid getting water in the pin sites, and not lengthen faster than 0.75 mm/day, slow down if i get to much pain (which never got) or infection. Also since i already told them how much i intended to lengthen they didnt have to mention any limits. im sure if i told them i wanted 8 cm they would have warned me of the risks.

majority of these things are the same as they told you, the others i made sure to ask them about because i did my research about what you should know before doing LL.

The only pt you need is to stretch akilles and walk, im sure they told you this. I didnt get an x-ray either before i returned ca 2 months later for check up.

In terms of pin site care, all i needed to know how to do it was watch one of the nurses do it, they used anti septic fluid and sterilized
compressors. not difficult.

And yes apparantly they have them lengthen at an appartment in Baku now.

1--yes, you did claim you knew... you stated  it as  a fact

2-actually.... he told me differently... again,   i know what the russian patient said to me... but you do not, as you are not me

3- i did not misunderstand what he was saying..., please, stop the excuses... he showed me photos,  translated, etc etc...  I'm 100% sure i know what he said to me... again, since i was the one he told, and you weren't there, so what you think of what he told me  has 0% weight.. i was the only person there talking to him, you were not

4-why make assumptions? let us look at at all the known cll patients we know that went to dr bagirov.... the girl, russian guy, you, and another person that has a diary on another board... all of us, except you have had    serious issues... so i can infer from that... i never said i know for a fact, but its a reasonable conclusion

5- they told you i was lazy??  you do realize you are not helping the case of your drs here, don't you??? most patients want confidentiality.... not to mention it isn't true, but even if it were, its hardly proper to tell other patients a patient is lazy...
 
again, you keep talking about he majority of things, etc etc that i was told.... again, you have no idea, because you were not there... i do not presume to know what they told you, so i don't comment on it, but for some reason, you know exactly what i was told

you mention about taking the medicines in correct order... again... i was never told that... do not assume it

i was walking.... it did not prevent ballerina....  your statement that you did not receive an x ray for a few months hardly makes the clinic look better by the way....

let's actually talk about you now though....  according to you, you will have frames on maybe 3 more months.... so we are talking 8 months,maybe more.... that is getting  close to 2 months for each cm....  the slow end, though you are supposed to be  his top patient...


maybe it's time we all posted videos of our progress.... and put it all out there

edited: insults/hostility comments

[Wannabegiant]

1--yes, you did claim you knew... you stated  it as  a fact

2-actually.... he told me differently... again,   i know what the russian patient said to me... but you do not, as you are not me

3- i did not misunderstand what he was saying..., please, stop the excuses... he showed me photos,  translated, etc etc...  I'm 100% sure i know what he said to me... again, since i was the one he told, and you weren't there, so what you think of what he told me  has 0% weight.. i was the only person there talking to him, you were not

4-why make assumptions? let us look at at all the known cll patients we know that went to dr bagirov.... the girl, russian guy, you, and another person that has a diary on another board... all of us, except you have had    serious issues... so i can infer from that... i never said i know for a fact, but its a reasonable conclusion

5- they told you i was lazy??  you do realize you are not helping the case of your drs here, don't you??? most patients want confidentiality.... not to mention it isn't true, but even if it were, its hardly proper to tell other patients a patient is lazy...
 
again, you keep talking about he majority of things, etc etc that i was told.... again, you have no idea, because you were not there... i do not presume to know what they told you, so i don't comment on it, but for some reason, you know exactly what i was told

you mention about taking the medicines in correct order... again... i was never told that... do not assume it

i was walking.... it did not prevent ballerina....  your statement that you did not receive an x ray for a few months hardly makes the clinic look better by the way....

let's actually talk about you now though....  according to you, you will have frames on maybe 3 more months.... so we are talking 8 months,maybe more.... that is getting  close to 2 months for each cm....  the slow end, though you are supposed to be  his top patient...


maybe it's time we all posted videos of our progress.... and put it all out there

1. nope i did not. I stated i had heard the story of that girl.

2. I have no reason to believe this, and even if (big if) he did, all that matters is what he thinks now. He has clearly stated to me that he doesnt blame Bagirov. I could probably get him to make an account here and refute your claim. Il check with him in a bit.

3. not making excuses, only it is you making a lot of big claims about it being the doctors fault when he didnt say anything of that. You are the one making assuptions. Also you seem to be the type of person to change the story however it suits you.

4. like i said, i saw several post op patients there who where happy with their results. Some of the girls there doing the surgery claimed to have friends who did it successfully. 4 surgeries is very little data. And 2 of them we know for sure have made many mistakes themselves (you and our russian friend). The nurses told me the girl was active in sports before she was allowed so if thats true then we really have no case where the blame can safely be put on the doctor.

5. I believe them when they said you where lazy, considering you didnt want to do any pt and walked very little. it was the nurses btw.
Even if it was the doctors who told me, it would be a different issue and nothing to do with his capability as a surgeon.

I have a hard time imagining they would just give you the medicine and not tell you anything what to do with it, they must know you dont understand russian text. And if you wanted to know was it to hard for you to ask? lol

I have no reason to believe they would avoid telling you things they told me (why would they?), but for you it seems like you want to remove the blame from yourself onto them, so you would have a reason to spin the story.

I might have frames 2 more months. or earlier. That makes me in the average range. They told me patients on average need 6-9 months for 4 cm. I did 4.3 cm and in 2 months it will have taken me 7 months. Also i added 1.5 mm extea onto my left leg to fix discrepency, as well as having a knee injury from earlier that made me put less weight onto it during the early consolidation phase. Thats why my left leg is lagging behind a bit, the doctor things i can remove the frame from my right leg in 1 month.

And where did you get that i was their top patient? I never mentioned that. I followed all their instructions unlike you, and thats why i didnt have any problems.

I dont have an agenda to make the clinic look better, im trying to be objective. But you are clearly trying to make the clinic look bad so that you remove blame for your own current state onto them.

edited: insults/hostility comments

[crimsontide]

1--- you stated it as is, aka as if it is how it happened... but  who cares....  the fact is she's not well after 2 years, and the russian guy isn't well after a year almost, only lengthening around 4 cm

2-i would love for him to make an account here... please do so... and then we can get the diaries in russian translated here... i am 100%%%%% for this... i know  members have pm me about the russian site, it is well known to some....  there is only 1 fact we can  be sure of   regarding russian guy btw.... HE STILL CAN'T f**kING WALK AFTER A YEAR, ONLY LENGTHENING 4 CM... IN FACT... HE CAN NOT EVEN STAND UP UNAIDED..... No amount of sPin is going to change that simple fact.

3-YOU accuse me of changing a story, point out what i changed... you were not in the room when i spoke to him... so you have no absolutely  no idea of what was said.... point out where i c hanged stories to suit my facts..... ruyssian guy can't walk, has ballerina, russian girl can't walk, 2 years after fact,  other diary on the other site mentions alignment issues...... point out which parts of what i said are not accurate

4-i knew some patients that were getting frames off too... they had met you....  but they were not lengthening, not one... they were all girls getting corrections for bow legs

5-you seem to avoid the ethical issues i brought up.....  as you know what i said is true.... and if things like this are not an issue, then why mention  you can't believe fahri laughed? because you expect a certain standard of etiquette from a dr and his team

i do not have an agenda.... I'm partly to blame, but so are they

i notice you stopped mentioning you were not x rayed for a few months after surgery.... hard to defend i know

you find it hard to believe they would give me medicine without mentioning how to take it.... well here again you make other  false assumptions... i was never given any meds when i left.... i was given a piece of paper  while i was getting in the car to travel to the airport....  the information on the paper was not clear though, so i had to contact them later to try to clarify... again, not from bagirov, but fahri

let's be objective... let's all post videos... i expect to see you walking unaided up and down the stairs

[Wannabegiant]

1--- you stated it as is, aka as if it is how it happened... but  who cares....  the fact is she's not well after 2 years, and the russian guy isn't well after a year almost, only lengthening around 4 cm

2-i would love for him to make an account here... please do so... and then we can get the diaries in russian translated here... i am 100%%%%% for this... i know  members have pm me about the russian site, it is well known to some....  there is only 1 fact we can  be sure of   regarding russian guy btw.... HE STILL CAN'T f**kING WALK AFTER A YEAR, ONLY LENGTHENING 4 CM... IN FACT... HE CAN NOT EVEN STAND UP UNAIDED..... No amount of sPin is going to change that simple fact.

3-YOU accuse me of changing a story, point out what i changed... you were not in the room when i spoke to him... so you have no absolutely  no idea of what was said.... point out where i c hanged stories to suit my facts..... ruyssian guy can't walk, has ballerina, russian girl can't walk, 2 years after fact,  other diary on the other site mentions alignment issues...... point out which parts of what i said are not accurate

4-i knew some patients that were getting frames off too... they had met you....  but they were not lengthening, not one... they were all girls getting corrections for bow legs

5-you seem to avoid the ethical issues i brought up.....  as you know what i said is true.... and if things like this are not an issue, then why mention  you can't believe fahri laughed? because you expect a certain standard of etiquette from a dr and his team

i do not have an agenda.... I'm partly to blame, but so are they

i notice you stopped mentioning you were not x rayed for a few months after surgery.... hard to defend i know

you find it hard to believe they would give me medicine without mentioning how to take it.... well here again you make other  false assumptions... i was never given any meds when i left.... i was given a piece of paper  while i was getting in the car to travel to the airport....  the information on the paper was not clear though, so i had to contact them later to try to clarify... again, not from bagirov, but fahri

let's be objective... let's all post videos... i expect to see you walking unaided up and down the stairs

1. Nope i did not, i just claimed i had heard the story of that girl, and then filled in the blanks which you didnt mention. Since she had to rebreak the leg, it makes sense that it would have taken her a much longer time. I have already explained about the russian guy. He does not blame Bagirov for it. He knows better than you and me, so no point in bringing that up, it doesnt support your argument.

2. the russian guy lengthened 4.5 mm, he added those extra mm very late after he was done with the initial lengthening phase. And he got ballerina because he lengthened to fast even while having an infection. Those things slow everything down. We know this, it doesnt help your argument at all.

3. i know for a fact now that you changed what Russian guy told you, he told me just now that this was the conversation you had: when he told you he had ballerina, you mentioned that it could be because the frames where not placed properly. Then he just answered "maybe". But he still doesnt blame Bagirov because he is aware of all the other problems which where caused by lengthening to fast.

4. The patients staying at the rooms where not all the ones i met. Some came to visit only for a day. And some where downstairs when i was waiting for the scan of my legs.   

5. The ethics are not important when it comes to the problems you have. If some nurses at the hospital have bad etiquette is irrelevant to how good job the doctor does with his surgeries. The problems you have with your legs are your own fault.

And when i say i cant believe fachri laughed, i said specifically that i cant believe he would laugh at a patient having a deformity if he caused it by doing a bad surgery. If a patient didnt follow his advice, then i can see him doing it, not in a malicious way though.

I have no reason to mention or defend that i werent x-rayed before i returned because they told me that this was the way they handled things. I didnt expect to get an x-ray before i returned. Its not necessary if you have only lengthened 5 mm at that point. They already have all the data on your legs before you start lengthening, another x-ray 5-10 days into extraction isnt a big deal. they have you lengthen faster in the beginning to prevent risks like premature consolidation.

Are you saying you didnt get the option to buy meds when you left? or did you get a paper with instructions for your meds? Either way you can keep saying these claims of yours are true or not, it doesnt make you more credible. You want me to show a video yet you make all sorts of claims without evidence. I will make a video in a few days.

Majority of your issues are your own fault. That much is obvious from just reading the diary.

edited: insults/hostility comments

[crimsontide]

Again, Russian guy can't walk a year later. ... He can not even stand up.... that is the fact. ..  he's looking at a year and a half minimum  without walking unaided  or close to it... After 4 cm... and  he has had other issues,   the girl can't walk 2 years later.
. The Other Diary , Alignment Issues. .. I stick with facts, and these are the facts. .. you have excuses...  have not even bothered to explain fahri performing the surgery alone,  or the fact they don't do X rays  until months after.

2- this is really part of part 1, but I notice you haven't mentioned his nerve issues and numbness in his leg,  you also did not mention he started getting ballerina after they did a correction on him  and he absolutely said that was the reason for his issues. ..that they did something wrong. ... He may not feel that way now but he definitely believed that.

3-again, he said they misplaced the frames, not me... I will post our Skype if needed.... I'm sure about this,  btw, I never mentioned anything about improper frame placement on here,  so what exactly are you talking about?  I listed a fact. . He can't walk ,still has frames on, and can't even stand without using his arms....   He has more than just ballerina issues

You seem to have drunk the Kool aid... you stated that if we get problems with our legs, it is our fault. ..  so according to you,  they are infallible?

It is not normal practice to  wait 2 months for an X ray.
. Very simple. .. Also, regarding fahri,  he is not  authorized to do this surgery by himself. That is why he is an assistant. .. you avoided the whole point. .. He should never have performed the surgery in the first place

Yes doctor wannabe. I am saying I did not get the option to buy meds before I left...

I can show a video, of me standing with ballerina. .. is that people want to see?  That is the issue I've been bitching about. .. have not made other claims. ... maybe ill squat too , because I said I could bend my knees, etc

And Yes. Show a video. .. unaided,  no walker, no crutch, no one helping, up the stairs and down the stairs

I'll give you respect for it if you do. .. though  I still wouldn't shut up... you should be able to do what you said, with ease as you did not lengthen much,  your mother is a nurse and you've had no issues supposedly



Until then, .........

I had to edit;)
.

[Wannabegiant]

Again, Russian guy can't walk a year later. ... He can not even stand up.... that is the fact. ..  he's looking at a year and a half minimum  without walking unaided  or close to it... After 4 cm... and  he has had other issues,   the girl can't walk 2 years later.
. The Other Diary , Alignment Issues. .. I stick with facts, and these are the facts. .. you have excuses...  have not even bothered to explain fahri performing the surgery alone,  or the fact they don't do X rays  until months after.

2- this is really part of part 1, but I notice you haven't mentioned his nerve issues and numbness in his leg,  you also did not mention he started getting ballerina after they did a correction on him  and he absolutely said that was the reason for his issues. ..that they did something wrong. ... He may not feel that way now but he definitely believed that.

3-again, he said they misplaced the frames, not me... I will post our Skype if needed.... I'm sure about this,  btw, I never mentioned anything about improper frame placement on here,  so what exactly are you talking about?  I listed a fact. . He can't walk ,still has frames on, and can't even stand without using his arms....   He has more than just ballerina issues

You seem to have drunk the Kool aid... you stated that if we get problems with our legs, it is our fault. ..  so according to you,  they are infallible?

It is not normal practice to  wait 2 months for an X ray.
. Very simple. .. Also, regarding fahri,  he is not  authorized to do this surgery by himself. That is why he is an assistant. .. you avoided the whole point. .. He should never have performed the surgery in the first place

Yes doctor wannabe. I am saying I did not get the option to buy meds before I left...

I can show a video, of me standing with ballerina. .. is that people want to see?  That is the issue I've been bitching about. .. have not made other claims. ... maybe ill squat too , because I said I could bend my knees, etc

And Yes. Show a video. .. unaided,  no walker, no crutch, no one helping, up the stairs and down the stairs

I'll give you respect for it if you do. .. though  I still wouldn't shut up... you should be able to do what you said, with ease as you did not lengthen much,  your mother is a nurse and you've had no issues supposedly

Stop bringing up the Russian guy, his problems are mainly because he lengthened to fast and got a severe infection. He has told me so from the beginning and he did it again today.   Btw at this moment, our Russian friend is sending me screen savers of your conversation you had when you just got started.. he explained pretty much everything to you that i got to know. And you still didnt follow his advice. Il post them here for all to see in a moment.

As for what you claim of doctor Fachri, do you even know he isnt allowed to do the surgery on his own? And I very much doubt that his assistant would be able to do a surgery without Bagirov knowing. How would he not be able to find out about that when they keep records and everything, all we have is your word here.

How likely is it that Fachri would tell a random patient of something he was not allowed to do, something he would likely be fired for if it is true that he isnt allowed to do the surgery? Does not sound believable at all. If he told you this, then it wasnt something that Bagirov didnt already know about, or it wasnt anything that he wasnt allowed to do.

Russian guy told you everything he told me, which was pretty much all i needed to know.

I didnt ask for a video from you, i mentioned that all the claims you are making here dont have any evidence behind it, and you are making big claims about the clinic. Then you want me to offer evidence when you dont? I will post a video but that still leaves you with lots of claims which you can never prove.
 
And if i should be able to do what i say i can, why do you need evidence? thats the thing. Im not making any big claims, you are, you have more need of evidence to back up what you say than i do.

edited:  insults/hostility comments

[crimsontide]

I was told to be nice, and not reply.... so


i will simply list the facts... forget about all the hearsay you've heard today... lets examine the facts


we are aware of maybe 4 or 5 case studies of cll with bagirov

1- russian girl- 2 years later,, can't walk
2-russian guy- almost a year later, lengthened 4 cm, still can't walk, can not even stand unaided
3- me...
4- another patient that wrote  a diary and had alignment issues
5- wannabe

these are the 5 confirmed cases studies.... i will leave out the man in baku, though he exists

now,  out of these 5 cases, 4 have had serious issues.... 80%.... again, i won't go into speculating on why or how ... just listing facts...

i have not promoted any other dr in here... though I've been in contact with 2,  shah and birkholtz, and will give a positive review if  i get a release from either of them... only way I'm not giving a positive review is if   they cripple me.... the ballerina is that bad..  i just want it gone... but I'm being upfront about this

now wannabe    seems to have a passion for defending this clinic... i have  an opinion on why this is, but i won't say why, and  anyway, it would just be my opinion, not a fact.... i could be wrong about what i'm thinking

now this conversation has gone in circles for a long time... basically it boils down to this

 i feel members here should know the full details  and be informed before making their decision..

forget all the assumptions, and assertions made which can't be proven...  look at the 5 confirmed case..... think

and regarding   dr fahri performing a surgery alone, and showing me photos of the man with crooked legs, it is 100% true... to me, it is useless to argue... simply say  you think i'm lying or move on...  i was there, no one  else but dr fahri was there

i am not lying about it though... you can simply believe me or not, but i will  state it, as it happened... these are the things members must know.... everything else, the petty bickering, he said she said, that can be deleted...the 5 case studies we have, and the incident  with dr fahri are the only things that really matter....   i won't speculate on why the man in baku had crooked legs, or out of 5 case studies, 80% have had serious issues... 2 very serious...

you  members are intelligent enough to  take in the information and  make a decision for yourselves
....

[Muse]

I think this discussion has been going into circles. Everyone is entitled to an opinion/perspective but express it in a non hostile/insulting manner.