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[Leonardo2013]

Disobedient,

I like your diary and your story because it's not too common to find info on cosmetic leg lengthening using the monorail frames, and much less doing simultaneous femurs & tibias at the same time. If I'm correct, you are just doing external frames and won't have any rods/nails inserted in your bones, right? This idea thrills me because this way there's no need to have a second surgery to insert the rods/nails or a third one to remove them later on.

I'm thinking that I would like to try double lengthening like you did and do 8cm (4cm on femurs & 4cm on tibias). How long do you think it will take and how long will I have to have the frames on before they remove them?

On a scale 1 to 10 (1 being little pain & 10 being unbearable pain), what is your pain like, and are you taking heavy narcotics or pain injections? BTW, how do you manage to use the toilet and move around?

Here are two links about a british girl named Emma Richards who appeared in the TV series Repley--Believe it or not! I saw the episode more than 10 years ago and it is very interesting because she lengthened her femurs using monorail frames. I wish I could find the video-- it is episode 4 from season 4. I googled it but couldn't find it.

http://www.telegraph.co.uk/news/uknews/1374808/Diary-of-stretched-girl-reveals-anguish-of-operation.html

http://news.bbc.co.uk/2/hi/health/1147874.stm




 

[Leonardo2013]

For those interested in what this Nova Special Surgery Hospital looks like, here's a link to a video:



or you can see their own youtube video collection:

[hand_sanitizer]

Hey girl are u ok there? Im currently lengthening here in India. A couple of patient  and i are interested to meet up with u if u don't mind as we're actually genuinely concern for u. We're not that far away from u, so please do send me a PM if u're all right with it.

[Blackhawk]

Hey hand_sanitizer,

What Dr are you doing LL with?

I hope you are doing well Disobedient.

[hand_sanitizer]

With Dr srinari, russianblue's housemate.
Disobedient, u havent been posted for a while. Are u allright?

[Disobedient]

Good Evening


I wanted to update you guys from 3days ago but I was little bit lazy to  do that ..

so let's start with

My x-ray


I had an x-ray a week ago.. and the problem of the reunion is solved, also the x-ray shows that I lengthened  3.1 cm -1.5 in femur and 1.6 in tibia-  (note this was  8days ago,so by now I'm 4.7cm )

 I asked from them to save my last x-ray pictures, but I forget to save the new one , since I was totally  shock  that the X-ray will cost me  this time 5000 INR !!!
I used to pay 2000 INR, I don't know what wrong with nova but I'll not gonna do the x-ray with them next time for sure ... any way these are  my x-ray..

 






2mm

as I told you guys that I started to do 2mm in my femur side there were no side affect that I notice nor pain but when I told the Dr that I had been doing 2mm in my femur side during last week, he advised me to stop doing that RIGHT NOW.. so I did ..
 


The Pain

well I know this surgery is not pain free, however I really should point out that the real pain will start in the distraction phase... with every millimeter I gained  the pain increased too...

my tibia is the most part that heart me.. and the most part that I have problems with for example   

1-pin site

2 days ago, I had bleeding in the upper pin site of my tibia (it's exactly in my left knee)..
the pain was horrible.and it doesn't happen suddenly..
I remember I mentioned about that to my Dr one week ago and he checked the pin site and said its okay and i don't have to worry about it since there is no discharge from the pin site., so there is no infection. but the pain remain same, no actually it started to increase by the days then, he send a nurse to change the dressing to me and told me to take antibiotic ...

2-skin burning sensations

this is one of the weird pain that I have, cuz there is no redness in the skin or any visible sign that you could see,just the feeling of that something burn your skin, the pain come all of a sudden and disappear  suddenly too...! I did experience the same feeling  few months ago when I applied chemical peeling solution on my skin  for more than required time .. the pain is awful !
but why would I have a similar pain in one area ...
this really strange !!!


My femur part

my femur part is good, no it's more than good comparing to my tibia... I don't have any problem there, I can say there is almost no pain or very slight pain in my femur side ! I know this maybe  a shock to some of you but this is what I feel
the only problem with  doing LL to the femur part "so far" that you cant sleep in your side and this will cause pain to your back by the time ...

muscle cramps

this is another problem that I have, I think everyone experienced muscle cramps in his life but with LL, it although it last for few sec but it is a real nightmare cause every time it happen you'll feel that the pin just inserted in you skin ...


Doctor visit

yesterday Dr Rah sent a doctor to check the pin site to me "this doctor is one of the surgical team who operated the surgery to me " he said there is no infection on the pin site and this is because of stretching of the skin.. he said the burn sensation that I feel is caused by the nerves...
so he prescribed for me 5 medicine

ACE-PROXYVON
PAN-D
UBICAR - for muscle relaxation
LYRICA- for nerves relaxation
Nitrest - in case if i have sleeping problem
and finally calcium   

SO TODAY  I must say the the muscle cramping reduced by 60%, while the burn sensation is still exist no improvement yet.. 

 

[Disobedient]

MAC

thanks 

Kilokahn

there will be no nails inside, and according to him there is no need to such a thing and I can walk normally without problems few months later ...
and so far I think I'm doing well, so I'll not stop lengthening my femur side

Shorty

it seems there is no major risk doing the both part, but he indicated too that the rehabilitation is much more difficult because of lengthening muscles on the both sides ....
great link , thanks


Russianblues

HI
That's Great News, congrat,  I remember when I was able to stand for few sec "before the distraction" I was so happy too...
tell me how much did you lengthened so far?

thanks for your support 


Leonardo2013


Hi Leo

well I can't give you the exact time that you will need cuz that is vary from person to another but here is the approximate calculation

day one -surgery ..
15 days before the distraction
40 days to get 8cm ( if you will length 1mm for femur and 1mm for tibia per a day)
6 weeks to 2 months for bone consolidation (you may take more time)
then they'll remove the frame
 so you may take 3.5 to 4 months

you are just doing external frames and won't have any rods/nails inserted in your bones, right?

yes

On a scale 1 to 10 (1 being little pain & 10 being unbearable pain), what is your pain like?

in my femur there is very slight pain unlike my tibia ... before having problem with the pin site and the other problem that I listed above ,, I would say the pain is smth around 4..
with these problem  it's maybe 5 or 6 "but good medication should decrease the pain "

when my PT trying to bend my knee to 90 deg the pain is 9 , and this will last for few min

are you taking heavy narcotics or pain injections?

I'm taking Ultracet

how do you manage to use the toilet and move around?

with this  and by the helping from my caretaker
 

its a wheel chair with commode


about the British girl, Good for her, it is amazing that she did 5 inches in one part
I really I would love to see the ep too


hand_sanitizer

Hi, yes for sure I'll send you my address
but I would like to meet you after  1-2 weeks  since  friend of mine will go into same surgery and I expect that he will discharge after 10 days. since he'll be in the same hotel .so maybe you could meet him too


Blackhawk

I'm doing good
thanks


 

[KiloKAHN]

Kilokahn

there will be no nails inside, and according to him there is no need to such a thing and I can walk normally without problems few months later ...
and so far I think I'm doing well, so I'll not stop lengthening my femur side

How long is he telling you that you'll need to be wearing those fixators? Multiple orthopedic surgeons state that adults doing lengthening with purely external methods are required to wear the fixators 1 and 1/2 months to 2 months or longer per centimeter lengthened. If you're going for 7 centimeters on each segment you're looking at over a year until your bones will be strong enough to take on walking without the fixators. I'd suspect that since you did both segments at the same time it's going to take even longer than the usual expected recovery time.

[Russianblues]

Great to hear from you Dis, me and my roomy are relieved you are still in such good spirits .

Doing quad lengthening is so fast , You are already pretty much at my goal of 5cm! Awesome!

So far I have lengthened 2.5cm and am feeling the best since I started tonight. Actually a funny story  . Because I was feeling good I thought I could go to the toilet by myself on the chair. I slowly made made my way successfully to the toilet but then was unable to get back. Nothing like having to shout out to your roommate to call the caretaker to help you because you stranded yourself on the toilet at 1am. Laughs all round though  . Look forward to future updates.


Hey have you asked your doc about the alignment of your fibula on your left leg? I'm 99% certain it's normal because a bit of misalignment is common, your leg seems to be rotated judging by the pins which can exacerbate things on an x-ray and also your doctor would have checked these x-rays and said if there was a problem. But, it's always worth asking if for nothing other than peace of mind.

Regards, Russian.

[Sweden]

Good to hear from you.

You're having a friend over for the same procedure??

Without any IMnails you need to wear the monorails until next October 2014. After that you will be close to crippled. At least for 4-5 years.

Craig49 broke his femur really nasty this way. Dr Mirzoyan did external only on his left femur and when he removed the Ilizarov device Craig's femur broke.

Take care.

[Disobedient]

Kilokahn

According to him after bone consolidation ( 2months) I'll remove the frame..
he is so confident that I can walk without problem... but your post make me confused who I believe!!
cuz I did read before about- 1month for every cm-
is there anything I could take to make the bone strong?? should I lose more weight?

Russianblues


It is good that you do have a roommate otherwise you would be in deep    be careful next time
about my fibula I'll ask the Dr, but if there were any problem he would tell me since he checked the x-ray many times...



Sweden


this sound scary.. I do remember that I read smth like that happen to him with his Lebanese doctor..
maybe carig49 is just a case.. it is not compulsory that I'll go through the same thing...
but I think I have to discuss that with my dr again.......

about my friend ,I knew him actually from this forum he read my diary then decided to come and have the same surgery...




 
 

[Russianblues]

Just to clarify, your doctor told you they would take the frames off 2 months after finishing lengthening? Did he give a time frame for walking normally again?


I think this is very optimistic.

[Sweden]

Dear please god this has to stop!!

Now there's a GUY coming to do the same? He will be even more hurt than you. He may never walk again properly at all. He will end up like Crazy+6, limping around.

After two months you a DEFINITELY NOT consolidated. Try TWO YEARS!

I don't have enough words to describe all this.
You should stop lengthening now when you still have a chance to recover well. The Dr should loose his license and the new guy coming should go back home and do his reading in here or on old forum . My god I couldn't believe this was true if there wasn't any pictures.

Don't you get it that since you can't weight bear or exercise you will loose ALL OF YOUR LEG MUSCLES bc your doing quadrilateral lengthening. It will take YEARS to rebuild. Your tendons will be completely stuck in ballerina position and your hip will most likely be locked in a position your legs were in all the time. About the faster bone consolidation: you should know this before doing LL.

What will you do if you try to weight bear and ALL OF YOUR BONES BREAK AGAIN!???

I don't know if I should feel bad for you.
Take this post any how you want. It's so sad witnessing you destroying yourself. 
Take care!

[Disobedient]

Russianblues

he told me that the result vary from one person to another... but in general after the consolidation  the frame will be removed and after few weeks (2-3) I should walk normally ...


Sweden

after reading your post there are two things  to definitely do

1- I'll not stop lengthening
2- I'll tell my PT to start weight bearing

about the guy who'll do the surgery, I think I said before that I'm not recommend Dr Rah, and I'm here to write my experience

do I recommend the Dr Raheja?
NO I'M NOT, cuz I still don't know if every things will gonna be fine till the end of my journey !
and how could I know if he is good or bad in this short time seriously !!!!
 I know that the cost of surgery would attract the attention of some ppl since it's low, but please think about other staff don't make your decision based on my diary cuz I'm still in the very beginning of this journey, who knows what will happen next ! !! I may regret doing this surgery later !!!

so don't make me feel that I'm responsible for his decision !


 

[Russianblues]

I don't want to pester you too much, but, I still don't understand. How long after finishing lengthening will your legs consolidate?

[Disobedient]

2 months

[Sweden]

so don't make me feel that I'm responsible for his decision !

You're not.

You can't weight bear. The monorails are not constructed to hold your weight. If you try, my guess would be that one femur will snap first and then you will fall down.

PT's from India barely have any education. They just don't know what they are doing. If your PT tells you that you shall stand up.... Well. Be advised.


--------------

Your consolidation will take around TWO YEARS. Maybe one if you're Wonder Woman.

Why do you think Dr Salameh's patients wear the frames(that is weight bearing) for 10-16 MONTHS!!?

[Disobedient]

bodybuilder was standing in the distraction phase and he did monorails, how would you explain that?


but why would you think that I'll take two years for consolidation  ! just few weeks ago I had problem with the reunion bone doesn't that  shows that I do have fast bone consolidation ! also, I can take stem cell if I'll have problem with consolidation ...

about your question I don't know but  every doctor have different method and opinion.

 

[Sweden]

Human beings take 1-2 years to consolidate. That's fact and if you want to speed things up there are a couple of things one can do, even illegal supplements.

Bodybuilder didn't have 4 unstable monorails on his legs.
The monorail is not built to stand your weight.
Many patient experience bent femurs and lots of complications with monorail. They never come back even close to 90% of their former self.

If you have 6-7cm gap in your bone it WILL take you a full year to consolidate for you to be able to walk.

When you lengthen and the bone joins prematurely it does that in one small area, enough to be unable to continue lengthen but NOT to walk around with!!

[Russianblues]

I am really encouraged by your positivity, yet,


Bodybuilder spent 10 months+ in frames, he also only did tibias and was an athlete beforehand. He actually also says in his diary that "monorails are not weight bearable after 5cm", again only tibias.


I don't think its realistic that you will spend only 5-6 months in frames  .


Perhaps link a diary where someone did quad lengthening external only and spent 6 months in frames to put our minds at rest?

[Disobedient]

 

no, there is no prior experience or diary about someone who did both parts that i read
BUT as I said in the beginning I think technically this is possible...

so what I 'll do  right now
1-conitunue lengthening
2-Doing more exercise as much as possible "yesterday I was able to rise my right leg without any help, and for me this a great achievement "
3- I'll take stem cell in the consolidation phase if it's not work after 2-3months I'll go to another Dr to insert nail inside my legs  I think this is possible and it will keep me in the safe side, but so far I do trust my Dr and I'll do whatever he said ...

[Sweden]

It took me a couple of weeks to be able to lift my legs.

I must know. How can you even believe consolidation only takes 2-3 months? Why do everyone have the nails inside for 2 years do you think? Some even longer.

With external Ilizarov ring device only you need to have them on for 10 months MINIMUM if you want 5cm of height gain. That is if everything work out fine all the way.

Nobody is here to fool you. I can speak for all of us when I say we all want you to end up as good as possible.

Taking stem cells is for non union. I have a hard time believing it will speed up recovery. Mostly steroids speed things up(even aging).
Even if it did work you will still need the monorails on your legs. It doesn't take a week or so to consolidate one bone after stem cell injection. It will still take months.

Continue your diary so we know your doing well. Tell the new guy to go home again.

[Leonardo2013]

Disobedient,

Sweden is right. Anyone or myself is not here to criticize you or judge you, but you had to do your homework before choosing to undergo leg lengthening. I'm in my 30's and I've been researching and lurking these kind of forums for more than 6 - 7 years. Unfortunately due to financial reason I haven't been able to have CLL yet. However, I read and found out so much that I know exactly what I'll be getting myself into. What Sweden is trying to tell you is that even though the monorail frame could seem more comfortable than the Ilizarov frame, it doesn't have the capability of maintaining your bones straight when lengthening large amounts, and could even make your bones snap when putting too much weight on it (do a google research). The Ilizarov is bulkier and more uncomfortable but it was designed to sustain weight and because of its shape it can realign bones if they start growing crooked. Many years ago I remember a girl who did quadrilateral lengthening (external only) in Ukraine with Dr Veklich who used his own version of Ilizarov that were half the circumference of the rings (very unstable). She kept updating in anold forum for the first couple of months and then when she started experiencing problems, she just vanished and to this day who knows what happened to her. Anyways, in your case what is done is done, but you should seriously reconsider not lengthening to the extreme, not only for the long time it will take you to recover but also because a lot of people once they pass 7-8cm of height start showing signs of disproportion. You're a female, so picture yourself with a lot of extra height plus wearing high heels -- you will look funny. So, give it a thought and whatever you decide I wish you the best and please keep updating us. 
       

[Leonardo2013]

Disobedient,

Sweden is right. Anyone or myself is not here to criticize you or judge you, but you had to do your homework before choosing to undergo leg lengthening. I'm in my 30's and I've been researching and lurking these kind of forums for more than 6 - 7 years. Unfortunately due to financial reason I haven't been able to have CLL yet. However, I read and found out so much that I know exactly what I'll be getting myself into. What Sweden is trying to tell you is that even though the monorail frame could seem more comfortable than the Ilizarov frame, it doesn't have the capability of maintaining your bones straight when lengthening large amounts, and could even make your bones snap when putting too much weight on it (do a google research). The Ilizarov is bulkier and more uncomfortable but it was designed to sustain weight and because of its shape it can realign bones if they start growing crooked. Many years ago I remember a girl who did quadrilateral lengthening (external only) in Ukraine with Dr Veklich who used his own version of Ilizarov that were half the circumference of the rings (very unstable). She kept updating in anold forum for the first couple of months and then when she started experiencing problems, she just vanished and to this day who knows what happened to her. Anyways, in your case what is done is done, but you should seriously reconsider not lengthening to the extreme, not only for the long time it will take you to recover but also because a lot of people once they pass 7-8cm of height start showing signs of disproportion. You're a female, so picture yourself with a lot of extra height plus wearing high heels -- you will look funny. Look a picture of Hajnal Ban (she went to Kurgan and publish her book "God made me small, surgery made me tall") http://bellapetite.com/wp-content/uploads/2010/08/before-after-leg-lenghtening.jpg
She lengthened 8cm and look a her disproportion with high heels. So, give it a thought and whatever you decide I wish you the best and please keep updating us. 
       

[Muse]

Disobedient, this is going to be a long journey ahead for you.  We all want you to recover well, but please understand that if you had asked us before surgery, most people would not agree on your decision to do quadrilateral lengthening. 

I cannot emphasis that enough for the sake of anyone reading this diary.  My personal opinion is the risk level is high and the recovery would be very long for quadrilateral lengthening.  We cannot force your friend's decision, but really he need to think very carefully about it and understand the amount of risks first.
 
Please consider the various advice of members here and keep us updated.

[Shorty]

Thank u all for the advices

I am now in the hospital and tomorrow will be my surgery. (my target 3.7 tibia 3.7 femur). 

I was in india since 1/11 witnessing Disobedient and I can tell she is doing well so far with no major complications but the nee bending issue and I hope she can overcome.

at present moment Just wish us all the best.

- Disobedient : u r the bravest person I ever met and I know u will success, but as agreed lets stop on 10cm 5cm/5cm 


just to tell I was reading old forum  for about a year if someone want to know

[Sweden]

just to tell I was reading old forum  for about a year if someone want to know

Clearly you haven't understood it.

3,7cm is doable, but since you can't weight bear or hardly any exercises you will have a very long road ahead of you.
It will take around 2-3 years to walk without a strain.

You're not getting any nail inside so the monorails have be on your legs for 9-10 months.
Only after 3 months you have already destroyed your body by not moving around.
Imagine 9 months.......

[Russianblues]

Thank u all for the advices

I am now in the hospital and tomorrow will be my surgery. (my target 3.7 tibia 3.7 femur). 

I was in india since 1/11 witnessing Disobedient and I can tell she is doing well so far with no major complications but the nee bending issue and I hope she can overcome.

at present moment Just wish us all the best.

- Disobedient : u r the bravest person I ever met and I know u will success, but as agreed lets stop on 10cm 5cm/5cm 


just to tell I was reading old forum  for about a year if someone want to know

Can you walk me through your thought process for doing quad lengthening rather than just doing 7.5cm with LON on tibias? Every way I look at it 7.5cm LON is far superior. The ONLY benefit I can possibly see is that you will reach your goal height sooner, yet, those doing LON will walk like a year before you so that isn't really a benefit.

[Sweden]

Your nerves can't lengthen that fast. They will be destroyed, probably permanently. Skin numbness, loss of temperature feeling for the body in that part, increased sweating and more.

There is always more to it than you can find in forums.

Doing quadrilateral lengthening, especially with monorails AND without any nails, is to destroy your life as you know it.

You will both be aware of this next summer. If you fall into a serious depression you could end up hurting yourself even more.

I hope you guys really are lucky with this. There is SOOOO MUCH that can go wrong with this approach.

[Adriano]

isn't the idea that they will lengthen with monorails and then insert nails inside the bones so they can weight bear after lengthening.

I don't see why u cant lengthen 4 bones providing u don't break them all in one sitting. if the surgeries r done 20 days apart I DONT think 5cm on tibia and 5cm on femur is such a bad idea.

assuming u lengthen for 50 days and then insert wb nails u can expect to be trying to walk after initial surgery within 75 days or so.

I don't see why Sweden keeps saying ppl wont be able to walk for many years.

he has only done his surgery less than a year ago so how does he conclude that others will not walk for 3 years and possibly be ruined for life.  some of the things he says r just his thoughts and not facts that have been proven. he is too conservative.

I dont think we should be critisizing others for taking risks and doing things that our outside the norm.

lets not forget that ones personal LL experience is one of the many possible outcomes of LL. Just because u take  more than 6 months to recover from ballerina doesnt mean every one will.

I like the advice of LL vets but sometimes they talk like they have done LL and tried many possible scenarios. BUT no they haven't. so I don't like how some one who did LL less than a yr ago can conclude that some one  who tries something different to what they did will result in total failure or permanent damage.

I don't agree with breaking 4 bones  and using external LL. but if they r targerting small gains per bone I think they can pull it off.

The kind of criticizing that's been given to this girl is similar to that which is given to new LL doctors that r  not popular.

well guys look at Dr Siringari and his patients. they r doing really well (providing everything is what it is  and not polished like most thins over there at old forum )

When that dr came on the forum and it appeared new patients where going to do surgery with him, most ppl, especially vets, were all on the persimistic side of the fence.

so come on guys, lets be thankful for those who push things to the edge because it is the only way we can know what is really possible with LL.

I am surprised that this girl still posts on forums after the way she has been attacked. and what a loss it would be if she stopped updating because everyones is treating her like she is some kind of a lunatic.

[Sweden]

You have no clue at all. I have.
I have seen what the monorail can and can't do. I know how long it takes for the general patient to recover. I have contact with lots of patients, discussing their progress and abilities.
I have read through old forum  since the beginning of its existence.
I have spoken to several doctors about LL and everything that happens to the body when going thorough such a procedure.

I know of many patients that came back a couple of years after finishing LL to do a tendon release surgery bc they've been fighting the stiffness for 5 years without any progress.

There is so much we never get to know through old forum  or in here that you might get chocked when you finally have your own LL and understand what it's all about.

Why do you think EVERY SINGLE PATIENT EVERYWHERE stop writing in their diary? They are permanently hurt and too proud or embarrassed to tell about it.
Some claim they are perfectly fine and then they show up next year for a tendon release surgery.....

There is so much you don't know what is happening to the body. You can never find it on LL-boards.

The girl didn't even know if she was getting a nail inside her bone, come on!!

I hope this diary continues - everyone wants to see her doing well.