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Author Topic: I had LL in 2007 and I'm still here. Ask me anything!  (Read 49049 times)

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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #155 on: July 17, 2022, 07:09:38 PM »

I have the worst knee issues of anyone I know, except for people whose surgeries were botched.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #156 on: July 17, 2022, 07:19:43 PM »

I have the worst knee issues of anyone I know, except for people whose surgeries were botched.

I guess that’s… good news then?  If you said your issues are easily manageable and it’s the worst from what you know, I guess everyone else’s knees are pretty much normal then?

Could you please take a look at my X-rays and let me know what you think?

These are 1 week old. Thanks a lot man, you are honestly really giving me peace of mind.

What do you think of them in terms of nail position, screws etc.

https://pasteboard.co/AC1Mnmoz0cYQ.jpg

https://pasteboard.co/dGEupDtqyXpZ.jpg

As I said, at the moment I’m in pain when I stand up, sit down, walk and raise my leg. My knees hurt.

Thank you again Medium
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #157 on: July 17, 2022, 09:09:20 PM »

I don't notice anything wrong with them.  They look pretty similar to my x-rays.  The first few weeks after surgery, it felt like the internal nail was sticking way up into the knee and would burst out if I bent my leg.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #158 on: July 17, 2022, 09:28:27 PM »

I don't notice anything wrong with them.  They look pretty similar to my x-rays.  The first few weeks after surgery, it felt like the internal nail was sticking way up into the knee and would burst out if I bent my leg.

Fingers crossed, I hope I end up healing well without any knee issues. Hopefully the pain I have in knees atm goes away soon.

And same!  I feel the same way! It feels like the internal rod is sticking out for me, but I am able to bend my knees fully.

I know it’s difficult to say, but what do you think Medium. Do you reckon I’ll end up getting chronic knee pain or not?

And when should the current knee pain that I have, go away?

Thanks again!
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #159 on: July 17, 2022, 09:40:27 PM »

This issue is barely even acknowledged by the orthopedic community, and even outright denied by some doctors.  So all I know is anecdotal to my own case.  Your body might or might not heal differently than mine.  I can't make a prediction.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #160 on: July 18, 2022, 12:22:08 AM »

This issue is barely even acknowledged by the orthopedic community, and even outright denied by some doctors.  So all I know is anecdotal to my own case.  Your body might or might not heal differently than mine.  I can't make a prediction.

Thanks medium.

Last thing, how many weeks after the first surgery should I stop feeling pain in the knees? Currently I’m only 5 weeks post first surgery…I understand it’s this very early so it’s normal to be experience this knee pain. But how many more weeks after should it go away…and if it doesn’t…then it’s a cause for concern..
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #161 on: July 18, 2022, 02:24:02 AM »

Your frames are already off but you're still healing from surgical trauma from the 1st surgery and the 2nd simultaneously.  Your experience is very different from mine so I really couldn't say.  For what it's worth, my knees gradually improved over the four months I was lengthening, so I think some of what you're experiencing is from surgical trauma.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #162 on: July 18, 2022, 12:09:00 PM »

Your frames are already off but you're still healing from surgical trauma from the 1st surgery and the 2nd simultaneously.  Your experience is very different from mine so I really couldn't say.  For what it's worth, my knees gradually improved over the four months I was lengthening, so I think some of what you're experiencing is from surgical trauma.

I hope so. Btw my Dr used a transpatellar approach for the insertion of the tibia nail. 
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #163 on: July 21, 2022, 12:07:24 PM »

Hey medium

Quick question. 

The people that suffer from permanent chronic knee pain … how bad is it usually for them?

Usually for the guys that done tibia LON

Do they have a constant pain whilst doing things like walking, standing up, sitting down, laying down?

Or do they experience it when they kneel on hard surfaces, do squats, etc. basically during certain movements that we don’t normally do all the time

I guess what I’m asking is that is the pain really that bad that is constantly there or is it not as bad?

Thank you brother
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #164 on: July 21, 2022, 02:11:38 PM »

It's not a constant pain.  I believe what I have is tendonitis.  The symptoms match.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #165 on: July 21, 2022, 02:22:16 PM »

It's not a constant pain.  I believe what I have is tendonitis.  The symptoms match.

Thank you.

I guess what I’m asking is, do you think it’s highly unlikely that I will develop chronic knee pain where I feel pain when I do basic things like walk, sit, stand, lay down etc.

I just don’t want the basics to hurt.

I’ve never been into sports so I won’t be putting extra pressure on it. I only really do upper body workouts. 

What do you think?
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Diam

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #166 on: July 22, 2022, 02:44:07 PM »

Hey Man

Appreciate what you’re doing in this forum.

I am about to have the surgery in couple days and not sure if i am going to pull the trigger and do it.

Since you had your surgery in 07, did it make you happy? Did it solve your height insecurity if you had one?

Any word of advice from you would be very appreciated.

Thanks
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #167 on: July 22, 2022, 02:54:08 PM »

It's not a constant pain.  I believe what I have is tendonitis.  The symptoms match.

Thank you.

I guess what I’m asking is, do you think it’s highly unlikely that I will develop chronic knee pain where I feel pain when I do basic things like walk, sit, stand, lay down etc.

I just don’t want the basics to hurt.

I’ve never been into sports so I won’t be putting extra pressure on it. I only really do upper body workouts. 

What do you think?
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #168 on: July 22, 2022, 05:36:09 PM »

Hey Man

Appreciate what you’re doing in this forum.

I am about to have the surgery in couple days and not sure if i am going to pull the trigger and do it.

Since you had your surgery in 07, did it make you happy? Did it solve your height insecurity if you had one?

Any word of advice from you would be very appreciated.

Thanks

Yeah, it made me happier and solved my height insecurity.
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #169 on: July 22, 2022, 05:36:51 PM »

Thank you.

I guess what I’m asking is, do you think it’s highly unlikely that I will develop chronic knee pain where I feel pain when I do basic things like walk, sit, stand, lay down etc.

I just don’t want the basics to hurt.

I’ve never been into sports so I won’t be putting extra pressure on it. I only really do upper body workouts. 

What do you think?

The basics you mentioned don't hurt me.
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liltunechi

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #170 on: July 22, 2022, 08:34:42 PM »

The basics you mentioned don't hurt me.

Thanks medium.  Do those basics hurt most LON tibia patients? Based on stories you’ve heard and patients you’ve spoken to and your research. 

Thanks again
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #171 on: July 22, 2022, 11:53:30 PM »

I haven't heard of anyone having problems like that.
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Alija2

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #172 on: August 06, 2022, 08:07:20 PM »

How long after frame removal were you allowed to start lifting weights again? I’ve gotta take an X-ray after 4 weeks
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #173 on: August 06, 2022, 10:18:04 PM »

I don't remember.
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LON-next

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #174 on: August 08, 2022, 12:34:04 AM »

Here's a rough timeline:

June 2007: frame installation surgery.  Could only use a walker or wheelchair.
November 2007: frame removal surgery, no instant change in mobility
February 2008: crutches
April 2008: slow walking (about half speed maximum) without crutches
November 2008: my current gait, normal walking, able to run with reasonalbe confidence despite internal nail
December 2008: nail removal surgery, full confidence in running

Hey

I’m currently going through lizarov/Lon combine technique for tibia - think the technique is a lot similar to what you had done.  Just interested as to why it took so long to go from frame removal in November 2007 to using crutches in February 2008. Were you still using wheelchair or Walker for four month after frame removal. And was this the recommendation of your doctor or a case of your body just not being ready to use crutches.
Thanks
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #175 on: August 08, 2022, 01:35:11 AM »

I used a wheelchair mostly at first, then moved on to the walker except for long distances, then it was walker only for a while until switching to crutches.  It was all my decision.  I was having difficulty balancing.  It took a while for my legs to get strong enough that I was confident I wouldn't fall.

I switched to crutches an unknown number of weeks sooner, but I clearly remember using the crutches in early February 2008.
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LON-next

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #176 on: August 10, 2022, 01:33:31 AM »

Have you come across patients who’ve had LL with Italian doctor Dr Daniele Pili. His preferred LL method is the Lumiere device on tibia with no rod inserted. This procedure is different to external Lon tibia in one major way as there is no rod inserted so the patient has to keep device on after lengthening until full bone consolidation. But he allows patients to lengthen tibia close to 10 cm. Most of his patients typically lengthen tibias to 9+ cm with no complaints or complications during or after lengthening/recovery.
I’ve been wondering if the insertion of a rod makes a difference in the lengthening limitations. And if so why. Would you know this based on your research or what you have heard.
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #177 on: August 10, 2022, 04:16:09 AM »

I don't think it makes a difference.  Some LON patients have done 10+ cm of lengthening, including many in Beijing with me.
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LON-next

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #178 on: August 12, 2022, 10:09:45 PM »

I think you may have mentioned the other patients with you in the centre who lengthened more than your 7.5 cm. As far as you are aware did the people who did 8+ cm recover as well as you in terms of final recovery and also amount of time it took to to recover compared to time it took you. By recovery I mostly mean walking with a normal gait again
Thanks for always coming back to answer queries here btw
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #179 on: August 12, 2022, 10:58:26 PM »

I don't know.
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LON-next

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #180 on: August 16, 2022, 11:48:32 PM »

How many mm were you lengthening per day. And did you lengthened the same rate from start to finish.
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #181 on: August 17, 2022, 02:52:01 AM »

It varied significantly.  Their recommended rate was .66 per day, which I started out doing.  When it became clear that my consolidation was much faster than their average patient, I started doing 1 or even 1.33 per day.  There were short periods (a few days maybe) when I didn't lengthen at all.  Sometimes the muscles just need to rest and catch up.
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balme

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #182 on: August 21, 2022, 09:07:36 AM »

what was your tibia&femur length? 3inch on tibia is a lot.
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yash

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #183 on: August 31, 2022, 12:31:14 AM »

hello, mdof
there was a discussion in the group  of a non cosmetic condition, which required all four bones(femurs and tibiae) needing implants. any idea what it is?
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cross ll exfixLON with dr hirdesh and dr saini,, 4.8femurs & 4.8tibs
164cm to 174cm  age:23
step 1(left femur & right tibia) done on 20-aug-2021..removal on 20-oct-2021
step 2(right femur-left tibia) on 21st-nov-2021 removal~10th-jan-2022
http://www.limblengtheningforum.com/index.php?topic=67864.0

sy1555

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #184 on: September 10, 2022, 10:36:57 AM »

Thank you for staying here to help everyone :). I have the opportunity to go to Dr. Lee for surgery and lon is 40% cheaper than precise and I'm torn between the two procedures. Do you think precise(femur) has a big advantage over lon (tibia)? (I'm almost worried about permanent knee pain,health and sequelae problem)
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Medium Drink Of Water

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Re: I had LL in 2007 and I'm still here. Ask me anything!
« Reply #185 on: September 10, 2022, 02:05:14 PM »

what was your tibia&femur length? 3inch on tibia is a lot.

I don't know and never knew.
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