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[BilateralDamage]

Saying people stop their diaries because they're "too embarrassed to tell about it" is just an erroneous claim.  People move on with their lives, and after a certain point, you have no need/desire to continue updating your diary.  Your diary was created in the beginning with a purpose- to track your progress and receive advice from other LLers.  Once you're done with LL, what other purpose do you have in continuing it?  At that point, it's just a waste of time that can better be spent elsewhere.

You have read through old forum  since its existence in 2006, have you also read about all the studies done on LL since the 50s?  There are many people who have gotten LL for the past decades, and they have no need to share their story because they've made it through life fine.  You're unhappy with your surgery and putting that unhappiness on everyone else, give it a break.

[LLL]

Saying people stop their diaries because they're "too embarrassed to tell about it" is just an erroneous claim.  People move on with their lives, and after a certain point, you have no need/desire to continue updating your diary.  Your diary was created in the beginning with a purpose- to track your progress and receive advice from other LLers.  Once you're done with LL, what other purpose do you have in continuing it?  At that point, it's just a waste of time that can better be spent elsewhere.

You have read through old forum  since its existence in 2006, have you also read about all the studies done on LL since the 50s?  There are many people who have gotten LL for the past decades, and they have no need to share their story because they've made it through life fine.  You're unhappy with your surgery and putting that unhappiness on everyone else, give it a break.

Actually, check Andrew's diary on old forum , he just admitted to going silent for a very long time precisely because of sudden very stressful complications mixed with embarrassment and pride. While that doesn't have to be the case for everyone who stops updating, I don't think he's alone. He's just among the few that come back to admit to it in their diaries.

[Leonardo2013]

"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."

I agree with the statement above posted by Adriano -- Even Dr Paley somewhere in his website mentions that performing simultaneous lengthening for tibias & femurs saves time. However, I'm not saying that it is the best thing to do. I personally think that in all this controversy everyone who posted has a point. Sweden is right saying that this is extremely risky and MIGHT take a long time for one to recover, but let's remember that every individual is not created equal (pain tolerance, soft tissue laxatity, mental focusness, etc) and some respond differently than others. Of course if you have non-weight bearing frames and you don't move around for several months, then your muscles and other soft tissue are definitely going to get atrophied, and therefore your recovery might take a long time to happen. But I respect everyone's decision even if it goes against my own beliefs or point of view; and I think everyone is entitled to make their own choices and we should honor that. In my opinion if you just keep the lengthening target small to moderate, then your chances of success increase. For those who need more info on monorail here's an medical journal indicating the pros and cons of it:
 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994627/
In Spain for instance they use monorail fixators to cosmetically lengthen bones and people do physical therapy and walk since day one. For those who understand Spanish here's a youtube link:
 
And remember Emma Richards (from Repley's believe it or not) from the UK did only external femurs with monorails and she did physiotherapy and walking and exercises and everthing. So, I know that is is possible to walk with it but better to keep your targets short.

[Sweden]

I'm not unhappy with my surgery. You're a total fool for even claiming so.

The monorail device fails very easy, I've seen it.

Nothing good can come if you stay in bed for 6-8 months.

[BilateralDamage]

I'm a fool for thinking you were unhappy with your surgery when reading posts like these?

I went from 5'8 to 5'11 and I'm not really sure how that have impacted on my life yet.
Actually so far it's been mostly embarrassing and I had to hide it.

There is no really benefit that I know of. I noticed some girls were looking at me at the gym the other day but they've done that lots of times before too.

Maybe I should try dating to see if there's any difference 

And I'm the fool.    It's pretty clear from most of your posts that you're regretful of your surgery.  Unless, you care to tell us otherwise?

[Leonardo2013]

Sweden bro, I think you should recover (even if it takes you a long time) and enjoy your new height and forget about any further lengthening. I don't know for sure but I suppose that you don't want to spend a good chunk of your life recovering from the first surgery and then from a second one and missing on the good things of life, do you? I'm only 5'2 and to be honest I would kill to be at least your starting height before you had CLL. People in this forum are all going to have different opinions and that's understood, but the true of the matter is that you've proven yourself and definitely are an inspiration to many. You have good intentions in advising and warning others but remember that anyone is entitled to do what they want with their lives (in this case their bodies). So, let them be and if there are consequences let them learn from them. Peace!!!

[BilateralDamage]

Sweden bro, I think you should recover (even if it takes you a long time) and enjoy your new height and forget about any further lengthening. I don't know for sure but I suppose that you don't want to spend a good chunk of your life recovering from the first surgery and then from a second one and missing on the good things of life, do you? I'm only 5'2 and to be honest I would kill to be at least your starting height before you had CLL. People in this forum are all going to have different opinions and that's understood, but the true of the matter is that you've proven yourself and definitely are an inspiration to many. You have good intentions in advising and warning others but remember that anyone is entitled to do what they want with their lives (in this case their bodies). So, let them be and if there are consequences let them learn from them. Peace!!!

If no one else has said this to you before, let me be the first to say it- it takes a lot of strength to be a 5' 2" male in today's society.  I'm 5' 6" and I still struggle with adversity because of my height.  Keep on keepin' on, I envy your strength!

[Sweden]

I'm not regretful however anyone might interpret a post on a forum.

I still feel short in many situations. Depending on how I recover from my first surgery I might not do my femurs.
I think I'm already at the upper limit of what I can get away with since my height is equal to my wingspan now.
Adding 5cm could make me look very weird maybe.

[Leonardo2013]

Bilateral, you're right. It ain't eazy bein' short and it takes a lot of strength like you say. I'm of Hispanic ethnicity and maybe I'm not expected to be as tall as Caucasians but it is still hard to deal with it.

[FrankGarrett]

Bilateral, you're right. It ain't eazy bein' short and it takes a lot of strength like you say. I'm of Hispanic ethnicity and maybe I'm not expected to be as tall as Caucasians but it is still hard to deal with it.

Aren't there white Hispanics, too? They count as Caucasian.

[Disobedient]

5 cm
 

they told me that I gained 5cm, I was so happy to hear that..
5cm without nerve issue " i feel very little numbness in my right foot though"  it's a good thing that's mean I can go easily to 10 cm "hope so"
also,this mean I'm 158-157cm right now so  I'll hit 160cm sooon and I'll be an average emirati women

it was 2 days ago.. I went to hospital to have my regular x-ray , to adjust the alignment of my femur and to do knee manipulation  for the stiffness

they took blood test, then at 2 pm I was in operating room,
the doctor gave me a mask and told me to breath normally it just air, he said..
few seconds later I was in  a deep sleep.. so I don't know what they did " although I remembered something happened in the OR but I'm not sure if it was reality or dream, I remembered that my phone started to ring  in the middle of the operation when the doctors tried to find it to make it silent..after that doctors started laughing   .  maybe it was just a dream
I wake up after about an hour and they asked me if I'm fine and I replied by yes.. but I taste something  horrible in my mouth... then few  minutes later I started crying loudly there was pain in one of pin site  they gave me injection and told me to relax, to be honest I don't know if the pain was too much and to be accurate I felt worse than this pain in the past without shed a tear but I think I just want to cry at that time , it's funny how physiology play a vital role in controlling pain ..
so they shifted me to room "i don't know what they call this room" and one of the Dr came and asked me if I'm good and he told me that they did knee manipulation and everything is good he told me to smile too
few minutes later they brought shorty  he did his surgery at the same day.. he looked good, better than me actually,.. ! I remember when I did my LL surgery I felt so cold and i was shaking i was barley could say few words, but not shorty I can hear him talk to the doctor and nurse so easily..

Dr rah came  and  told that everything went fine in the operation and he adjust the alignment then he asked me if I feel pain and I point to the pin site that it hurts he told me then that he didn't do anything with this pin site except clean it, cuz it had lot of dirt... it seems my daily cleaning and dressing is ineffective ..  he told me that they'll shift me to my room to watch tv in next 5min..

anyway so I spent about 36hours in hospital .. I felt so tired maybe because of the Anastasia or maybe because it's a hospital .. at 8pm the pt came to my room and told me bend my knee but I couldn't bent it for more than 40 deg .. before the surgery I was something like 10-15deg..  and it's important to mention that my bending getting worse with distraction that what I noticed..
I couldn't sleep at that night so nurse gave me a sleeping injection , but I couldn't sleep either for more than two hours...
in next day ,at the afternoon the pt came for the exercise and he let me set to edge of the bed then he hanged my legs I started to cry back then and shouting to him to put a chair under my feet ... it was really painful .. he kept telling me that he'll bring a chair after 3min, but after one min one of the pin site started bleeding so he stooped and bring the chair.. I felt much better at that time, anyway he told to set for 15min 3times a day ...

at 6 pm the Dr Rah came to assure that everything fine with me before discharge ... he told me too that if I notice any color changing in my skin "like if it turns to blue", or if I couldn't move my toes , I have to stop distraction and call him immediately..
Also, he advised me that I should stop at 10cm because he doesn't wants me to suffer from major complications, but if everything went fine till 10cm I could complete lengthening but he said we have to be more conscious and maybe we will change the rate of number of turn after 10cm..
I told him that I still cant bend my knee for 90 deg, and he said it's fine but I have to keep exercising, but no walking or standing till I'll finish the distraction phase ..

then I discharged and I went back to hotel... I felt much better in hotel, today there was almost no  pain except in the one of the pin site ...
and tmw I'll continue  the  distraction again .. it's good to give your body break even if it was just 2 days

why this post is too long
   


 

[Disobedient]

this is my last x-ray... note this x-ray has been taken before the operation

[BilateralDamage]

Great x-rays, and thank you for updating us!! This diary is really interesting to read, so please update as often as you can.

[Blackhawk]

Wow!  You are already half way to your goal!

Thanks for keeping us updated and posting your X-rays.

[Russianblues]

Hey Dis, great to hear from you. Glad your doing well and in good spirits.

Was there an additional cost for the realignment of your femurs?

When you bend your knee is it just a painless block that you can't get past? Or does one part of your knee begin to hurt a lot?

Keep us updated

[hand_sanitizer]

^ Shush convict. Get back in ur cell. 
We'll come see u around december "disobedient". Take care

[jamesizu]

Don't know what all this talk about pubic hair ice cream is but... Lol

My question to Disobedient, ( ironic name considering you are going against all the supposed LL rules haha) just how painful has this whole experience been from a scale of one to ten? A one being absolutely no pain, and a ten being "my entire body is being ripped to shreds in hell and my eyeballs are being stabbed with forks"?

Also, to the famous Dameon/Sweden ( weird reading all your posts for so long and now I'm asking for your advice) can you help me out? Anyone else is welcome to give me advice of course.

I am planning to go over to dr. sarin to get both my tibias and femurs lengthened. I want to add three inches to each segment. From there I want to add a little length to my arms just to even things out a bit.

I am willing to spend a year and a half over there. I will be taking online college for four semesters, so I can kill two birds with one stone. (Also, it won't be suspicious returning home super tall after A YEAR plus.) I am set out on being a dentist, they get paid good money and I will help people. Medical school is expensive, but I have heard many times the school debt is worth the salary. I'll be able to pay it off. This also applies to all the lengthening expenses. I'll pay it off in the long run.

I am 5'8. I want to be 6'2.

[jamesizu]

Oh yeah, and sorry to hijack your post Disobedient. I've been looking on how to make my own posts on here for two days now! I don't think I'm given the option for some reason? 

If I'm missing a button or a feature or something to make my own posts, pls someone tell me! Haha




......that is all.

[Disobedient]

BilateralDamage & Blackhawk

thanks guys, and I'll keep you updated for sure


Russianblue

I paid 305USD ...
about the pain I think it is because of the pin cuz every time I tried to bend my knee I feel  the pins pushing my knee in very hurting way...

sanitizer

ok  c u 


jamesizu

it's okey you can post your question here ,I give you permission
about your question to me  I answered it somewhere here...

I am willing to spend a year and a half over there. I will be taking online college for four semesters, so I can kill two birds with one stone.

before doing the surgery I was planing to take an online English course + start learning dutch language
and it has been almost 2months since I did the surgery and I did none of these... seriously ! do you think you will be able to study in such a situation !   
good luck any way ...

[Muse]

Moved a few posts from sanitizer and russianblues to another thread, to keep it on topic.  Please reserve the posts here for questions and comments related to Disobedient.

jamesizu, you can find the "New Topic"  button at the top right hand section at the index of the various forum sections.  You can also start a new thread for your LL plans, it'll be easier to track the replies there.

[Leonardo2013]

LL ForumorLife,

I'm American. do you know how much do they charge for visa extensions?
And could you tell us how you brought the money to India and if you paid your doctor in advance or after the surgery. Thank you and good recovery.

[Leonardo2013]

Sorry. the previous post I copied and pasted from the old forum. The question is for Disobedient.

I'm American. do you know how much do they charge for visa extensions? I mean if I go with a tourist visa and then I want to extend my stay in India for a couple more months. And Desobidient could you tell us how you brought the money to India and if you paid your doctor in advance or after the surgery. Do you have to pay everything or a portion before surgery? Thank you.

[Disobedient]

morning Leo,

Your question should be, can they extend or change you tourist visa?
I found some ppl who have trouble regarding extending their visa " I may be in trouble too after two weeks when my visa will expire , so I'm not sure if you can extend it..
However, shorty started the process to extend his visa and they give him appointment after one month this allow him to stay for one month more even without extending his visa yet ..
he paid 200 INR for an office that print  and fill the form for him ..you can have more details from shorty

but as I know if you are from US your tourist visa will be for 6 months and this is a long time, I don't you'll need to stay in India for more than 6 months ..


about the money I paid by my visa card, and I paid the full amount 1 day before the surgery...

[Disobedient]

Today the pain is 6 from a scale of 10..
although I'm still in the mid of day which mean I just did half turn .. but my legs hurting me , my tibia exactly ..
I started my day normally.. I mean with the usual normal pain,, but I decided to put these relief hot water bottle I thought it may help me to relax my muscle and so on .. will it did..
however 5min after I removed it I felt a lot of pain ! I don't know why..!! if I'll describe this situation it similar to when you have period and you use hot water bottle, it will kill the pain for few sec but the pain will come double after you removed it...


 

[BilateralDamage]

Disobedient,

I'm sorry to hear about your pain.  Has the doctor prescribed any drugs for you??

[Disobedient]

yes Ultracet, but I don't think it's strong enough, however I'm concern if I'll use smth stronger to get liver failure

[BullSurfer]

I had to create an account so I can post some of my 2 cents.

Girl! you are so brave to do 4 things at the same time. The creator of the Ilizarov only intended for lengthen just one limb at a time for discrepancy purpose.

Anyhow, how are you doing as of now. I would like to see you prove the critics wrong.

[hand_sanitizer]

Assalamualaikum disobedient. How are u doing? Have u heard of exogen bone growth stimulator? I suggest u try that in conjunction with stem cell.
How is ur friend shorty doing? U've got guts, girl and i applaud u for that.

[An_Apple_A_Day]

Assalamualaikum disobedient. How are u doing? Have u heard of exogen bone growth stimulator? I suggest u try that in conjunction with stem cell.
How is ur friend shorty doing? U've got guts, girl and i applaud u for that.

I would maybe argue that if anything she wants her bones to grow slowly at this stage.  To allow her soft tissues to catch up which, at the moment, are being stretched in many directions.

Stay strong Disobedient. 

[Disobedient]

Hello everyone

it's 5 am , and I still can't sleep,, there is no serious pain.. but I think I slept too much during the day..anyway so I told myself why don't i update you guys. .

two days ago I went to meet dr rah because the ring stuck and i couldn't do the usual turns so he changed its place and he told me that everything gonna be fine ...
I did my x-ray too and I noticed two important things
firstly : the misalignment  in my right femur has been fixed  :)however there was still misalignment in left femur

Secondly: I didn't gain any extra millimeter .. ! it was a week after  my last x-ray(I rested for 2 days ), so I have to be lengthened an extra 1 cm

so I discuss that with Dr rah and he told me he will do operation for the left femur right away.. so I don't have to worry and he added I don't have to pay anything too

and about my second point he said that during the operation of fixing the alignment of the femur I may lost some millimeter...

anyway I did the operation " well it's a simple operation I didn't take the Anastasia but it wasn't so painful"... the good thing that I  was able to see that the misalignment in my left femur has been adjusted 

so by that I get back to distraction phase again and for doing 2mm/day.. I think I'll stop at the new year no matter what height I reached




BullSurfer

hi..I'm doing good and thanks

hand_sanitizer

I just google it.. and it seems it's effective..but I don't know if I could find clinic here in India that doing it also about the stem cell I asked dr rah again and he said NO i don't need it and he'll not gonna give it to me unless if I have a problem   I don't know if I should be sad or happy because of that, but  so far " I think" I'll follow his advice this time

shorty is doing well.. he can bend his knee 85 degree..he started to left his legs one day after the surgery..

An_Apple_A_Day

what will happen if I speed up the consolidation?  I didn't see any problem associate with that

[Sweden]

Nice to hear from you.