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[Leonardo2013]

Diso,
 
I agree with Claude your tibias seem fine (you can even see some callus  starting to form there) but your femurs seem slightly misaligned -- definitely talk to your doctor about it. As far as your knee ROM (range of motion), wait until you get your frames remove before you start to worry about it. The pins going through your thighs are the ones creating the tension/contracture of your knee extensors (quadriceps) but once the rails come off and you start physical therapy you will be normal again. I haven't had CLL yet, but I studied PT, so there's my two cents to you. Stay strong!
BTW, read this article about femoral lengthening and knee contracture:

http://www.ncbi.nlm.nih.gov/pubmed/8156696

[ant]

A lot of decent advice in this thread.  That's what this new forum needs to be about, cold heart truths and not a kind of fairy tale worls that old forum  became.  I knew people personally who were  having complications and old forum  was altering diaries to suit his money making schemes

[KiloKAHN]

Disobedient, if you are able to get in a wheelchair and have someone drive you somewhere, I think it would be prudent to look for other orthopedic surgeons in the area and get professional advice from an unbiased perspective. An orthopedic surgeon with no financial involvement in your legs will be more likely to give you the most honest advice. Most people here including myself think that your doctor is telling you what you want to hear as far as when he says you will be able to walk again. Because the advice of many on this board goes against what your doctor is telling you, getting that third party advice from an orthopedic professional will be to your benefit.

[Claude]

Great advice Kilokahn, please listen Diso, i am your Father 
You could avoid a year (at least) of complications.
Come on  (trying to look scary -)

[JP]

Hi Disobedient

In the meantime, look at this video - this might help you out.

Limb lengthening Physical Therapy Exercises – Femur (Thigh bone)

[Disobedient]

Hi

There is no thing wrong in getting a second doctor's opinion, as a matter of fact I'm working in that right now,  but I'll do my next x-ray in Sat, then I'll email them with  my  x-ray, I'm considering email "  Dr.  Paley , mitkovic, Guichet, and some other doctors "..

For the misalignment  thing, I'm not so worry about that, cuz I had it before and Dr rah fix it, so he can fix it this time too.


Leo, I checked the link, and I hope my ROM gonna be better, but there is smth in the study they mentioned that there is an improvement  during consolidation phase which I'm not noticing in my case,.. but lets hope after removing the frame everything will be better...


drew,, wow the patients in video  have good mobility and flexible..thanks drew it will absolutely help

[Claude]

Yeah get a second opinion. Please keep us informed.
And what about your living conditions there ?
Stay strong 

[Disobedient]

Yeah get a second opinion. Please keep us informed.
And what about your living conditions there ?
Stay strong 

I'm staying in hotel..no drama as it is in sarin guest house..  mmm I would say everything is good.. the weather is bit cold... I have care taker who helped me almost in everything  I start to be really lazy..the food is not bad but there is NO STEAK  ..
however being in same room for three months is  A REAL NIGHTMARE .. funny thing I was just telling shorty that everything all right and the time pass quickly so he can handle that too.. which shows that I seem start to have some mentality problem lol...

[KiloKAHN]

How much are you paying your caretaker if you don't mind me asking?

[Disobedient]

How much are you paying your caretaker if you don't mind me asking?

600 INR/day

you can find with 5000-10000 INR/month..

[Disobedient]

How much are you paying your caretaker if you don't mind me asking?

But if you will stay at hotel you could let the hotel staff help you , no need for caretaker
that what shorty do.. and obviously I cant do that since I need a woman caretaker..

[Claude]

ah ah STEAKS -)
Well you have to stay strong, maybe it would have been better if you were with another girl, have you tried finding a mate ?
What do you do ? Do you read maybe ?
Is is that cold or is it because it is warm in your country ?
Eating well is very important for your recovery.
Ah ah i really sound like if i was your mama mmm maybe i am your mama ?
Just kidding dont be scared 

[KiloKAHN]

Good deal.

[BullSurfer]

Always good to hear from you. Why is Shorty so quiet?

[Leonardo2013]

Diso,

Let's don't forget that your situation is different than others and so will be your recovery. You had quadrilateral lengthening and there's no study or previous patient to compare their results/progress with yours. Your knee ROM is affected primarily by the femoral frames but the tibial frames also play some role here since most of the key leg muscles affected have their atttachment at the knee. Your ROM will come back, just have patience and wait until frame removal. BTW, how your pain level now? Has it changed since you stopped lengthening? Are you taking any pain meds? How many cms is Shorty doing? Stay Strong!!!   

[Blackhawk]

Hey Disobedient,

We haven't heard from you in awhile and hope you are doing well.  How is everything?

[Disobedient]

Hi all, it has been a while since my last post .. 
I'm still waiting for my Dr to remove the fixator ...
I don't think I cant stand the rails any more..

so what happened in last 20 days?

I had food poisoning..
my back pain is fluctuated sometime it's unbearable, while in someday it totally disappear..
the pin site is still one of my biggest issue that I thought it would be solved after the distraction, but I was totally wrong I'm still suffering from  the pain in pin site..
I think my body is getting weak day after day.. due setting in bed for 24h... Poor diet...
my knee bending is around 15 deg

so today I went to have an x-ray.. but I didn't find Dr Rah ( I should have call him b4, but it is my mistake I didn't) anyway I met another orthopedic dr, who checked my x-ray and told me that the callus is good ..
I asked him when I'll remove the fixator ?
he said (((at least)))after  12 weeks !
12 weeks !!! I can’t stay in India for 12 weeks ! I can’t stand the fixator for another 3months! !!! I told him that dr rah said I need from 6-10 week after the distraction and it has been already 7weeks since I stooped the distraction.. so according to dr rah I just need 3 more weeks and he'll remove the fixator.. !
then Dr kumar explained to me the risk of removing the fixator now and whatsoever..
he also showed sm exercise for the knee bending ,AND thanks to him for that..

but spending another 3 months more here in India is not an option for me ! wearing these fixator for 3 months more is a real nightmare I'm not sure that I could stand it anymore,..
I'm physically and mentally exhausted!!
and Definitely  I can’t go back home with these fixator.. 

I'll call Dr rah tmw, and I'll ask him to check my x-ray and to tell me his opinion, to be honest Dr Kumar seems to be very realistic in his expectation more than Dr Rah, but if Dr rah said it's the time to remove the fixator, I'll not wait for a sec to remove them


it seems that I fall in sleep while writing this post..,It was a long day,,,

I'll upload my xray soon and I'll post how did I convert my tourist visa to medical visa in next post ..

.. I need to take rest now....  c u

[BilateralDamage]

I wouldn't risk it Diso, I know you're itching to get them off but this is for the sake of your legs.  If a doctor recommends another 12 weeks based on your x-rays, I wholeheartedly suggest following his advice!

Could you post your latest x-rays for us?

[secondclasscitizen]

Happy to hear from you...3 months seems like a long time BUT think how insignificant 3 months will be to a whole lifetime, it's worth it. I doubt you'll listen since you haven't listened to anyone's advice as of now lol. Takes care. I wish you the best!

[Smallguy]

Hey Dis,

Does your doctor perform internal femur for 8cm? I wouldn't mind coming back to India. It was fun

If you want your bones to consolidate more quickly, the cheapest way I can think of is to pump yourself with calcium supplements in the day time after every meal and stronium supplement before you head to sleep. Also, make sure you do some exercising and put a little weight on your legs to bring the blood flow to your bone area.

Don't rush as you are already approaching near the end.

[Metanoia]

Hi all, it has been a while since my last post .. 
I'm still waiting for my Dr to remove the fixator ...
I don't think I cant stand the rails any more..

so what happened in last 20 days?

I had food poisoning..
my back pain is fluctuated sometime it's unbearable, while in someday it totally disappear..
the pin site is still one of my biggest issue that I thought it would be solved after the distraction, but I was totally wrong I'm still suffering from  the pain in pin site..
I think my body is getting weak day after day.. due setting in bed for 24h... Poor diet...
my knee bending is around 15 deg

so today I went to have an x-ray.. but I didn't find Dr Rah ( I should have call him b4, but it is my mistake I didn't) anyway I met another orthopedic dr, who checked my x-ray and told me that the callus is good ..
I asked him when I'll remove the fixator ?
he said (((at least)))after  12 weeks !
12 weeks !!! I can’t stay in India for 12 weeks ! I can’t stand the fixator for another 3months! !!! I told him that dr rah said I need from 6-10 week after the distraction and it has been already 7weeks since I stooped the distraction.. so according to dr rah I just need 3 more weeks and he'll remove the fixator.. !
then Dr kumar explained to me the risk of removing the fixator now and whatsoever..
he also showed sm exercise for the knee bending ,AND thanks to him for that..

but spending another 3 months more here in India is not an option for me ! wearing these fixator for 3 months more is a real nightmare I'm not sure that I could stand it anymore,..
I'm physically and mentally exhausted!!
and Definitely  I can’t go back home with these fixator.. 

I'll call Dr rah tmw, and I'll ask him to check my x-ray and to tell me his opinion, to be honest Dr Kumar seems to be very realistic in his expectation more than Dr Rah, but if Dr rah said it's the time to remove the fixator, I'll not wait for a sec to remove them


it seems that I fall in sleep while writing this post..,It was a long day,,,

I'll upload my xray soon and I'll post how did I convert my tourist visa to medical visa in next post ..

.. I need to take rest now....  c u

Hi Dis, that's no surprise. The rule of thumb is 1 to 2 months consolidation per centimeter lenghtened. Therefore if you have to wear the frames for 5 months after lenghtening you are at the low end of the expected consolidation t
time. Your expectation was unrealistic and your doctor didn't tell the truth. You should keep a positive attitude now and bite the bullet. Try to figure out what kind of workout you can do in bed. E.g. lie on your stomach and make swimming movements. Do this at least 1 hour per day. The more the better.

Best wishes

[Leonardo2013]

Diso,

Glad you're fine and thanks for updating us. Don't forget that you've definitely already gone through the worse part (distraction) and now just be strong and hang in there, but like someone previously said 3 months may seem like a long time but it is nothing compared to the rest of the years you will enjoy you're new height once all this ordeal is over. I have to agree with others that your Dr might have mislead you in regards to how long you will have the frames on. We don't know his reason -- maybe financial -- but the important thing is that you're heading in the right direction and are almost there. Diso, could you contact me at my e-mail capichon@hotmail.com. Thank you.   

[Taller]

I wouldn't risk it. If you get the frames off now and break a bone, you'll have to be in a plaster 3+ months anyways. It's really not worth the risk. Go see more orthos if you can and get their opinions. Perhaps you could even ask Dr. Franz Birkholtz, who kindly answers patient questions on this forum.

[Blackhawk]

It's good to hear from you Disobedient.  We thought you may have died!    I agree with the comments about resting for a few months.  The last thing you want to do is try to do something too early and end up hurting yourself and having to spend even more time in bed.  You have to rebuild a lot of bone in 6 large bones.  It takes time. 

[hand_sanitizer]

Diso. U can not stand without a rod inside. Doing so will prolong ur recovery time, I guaranty it. I honestly think U should move to sringari's care home. Pm me if u want the details. I'm suggesting this out of pure concern, no bad intentions here.

[hand_sanitizer]

I just reread ur previous post. Ppl wear the frames up to 10 months doing 8cm and u expect to do this within 10-12 weeks? Sometimes I wonder if u really did adequate research on this procedure. Ur legs will snap and u will be crippled, I reluctantly agree with Sweden on this and u have no one to blame but ur own stupidity. Having courage and having no brain are 2 entirely different things, I hope u're not the latter.
God u're as stubborn and blind as my ex wife.

[KiloKAHN]

Diso, even if your doctor tells you to he will remove the fixator now, do not do it. If you do that and stand up, it's a certainty that you'll end up with snapped bones. You're worried about 3 months now, how long do you think you'll be unable to move with fixators on you after you've got snapped bones? Tough it out now for a better result in the long run.

[Leonardo2013]

Diso, are you ok? Did you get your X-rays? Please, give us a quick update.

[Disobedient]

Hi leo

there is no much things to say actually..
I msged Dr rah and he said to wait 6 weeks more ..the callus is good but not good enough to get the frame removed..
so basically I can't do anything now but waiting ..6,12 or 24weeks  .. I have to wait ,
as I have been lying on my bed for last 5 months, so I developed a very good habit " being so lazy", I didn't contact any other dr yet, everyday I say tww I'll do that, but this tmw never come..

I do sometimes have thoughts of returning home, since I'll have emotional/financial support from my family,  I think that is what family for!!
but this would be a big failure for me, returning home with wheel chair will make me looks like I'm not mature enough to make the right decisions .. so I want to save my ass from listening to such a thing.

I have the hard-copy of the x-ray but the soft copy still didn't get it, since the RT didn't know how to save it in my USB .   

[mediocre]

Just reading this thread gives me a realization how CLL is really fraught with physical and psychological challenges that every patient must overcome.

I'm not gonna give you an "I told you so" speech but instead hope that you come out well out of this.

[Leonardo2013]

Diso,

Hang in there. Wait the time that be necessary until you're sure your bones are dense enough to remove your frames. You definitely don't want to remove them and have a fracture and have to start consolidation all over again. BTW, how is Shorty doing? How many cms is he doing?