Print

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

[marathonrunner]

Thanks Temaki, I'm not familiar with how the screws should have been placed. But I can see the difference in the gap between tibia and fibula that you mentioned. And it does seem like the upper screw in the left leg isn't holding the fibula. Thanks for pointing that out.

[TemakiSushi]

Do you have pronation with left ankle also?

[TemakiSushi]

Also if the left shin is dent, it means it’s not forming enough callus
Even 0.33 mm a day can be too fast for bent bone
I hope more callus to come out
Please be very careful with lengthening without enough callus
Did you see RGKey X-rays?  He also had dent shin and had to do bone graft

[Great321]

Thanks Temaki, I'm not familiar with how the screws should have been placed. But I can see the difference in the gap between tibia and fibula that you mentioned. And it does seem like the upper screw in the left leg isn't holding the fibula. Thanks for pointing that out.

I'm no expert but I think no matter if LON/LATN or Stryde for tibia. It's basically both a nail inside the tibia which is fixed by screws. If you look at Jolien's latest X-rays you see that her fibulas aren't hold/fixed by any screws. You can ask a doctor but I don't think that fibulas are supposed to be fixed.

Hi Great, I did Stryde, not LON. So I'm not familiar with what pain points LON has.

For me I have knee joint pain, pain directly below the knee (upper tibia bone) and pain on the lower tibia bone on the front near my shins (this one feels like sharp pains). Is this normal for Stryde? I don't have these pains on the right leg only the left so I can only guess why...

In terms of ballerina foot, both my feet I am able to get the heel down if I pushed. Right foot is a lot easier to get the heel down, left foot I can get the heel down if my legs are semi-bent, I can't really get the heel down when I'm upright, for the left foot when I try to get the heel down it feels like I am falling backwards.

Yea I am trying to stretch a lot and walk a lot. The problem when I walk is with my left leg, what I do is I have this long couch in which I can stablize myself and hold the couch while practicing to walk. Going one way where the right leg is on the outside and coming back where the right leg is on the inside. Going both ways I have issue with my left leg, I need to limp and hobble while my right leg I can walk just fine. The limp and wobble is partly due to the fact my left leg lands not on the middle of the foot or the back of the foot but on the front of the foot. And for me it is much harder to get the left heel down without feeling like I am going to fall backwards. If my left heel is down I feel like I will fall backwards.

Please see x ray below. My left leg (right side of photo), this is my left leg straight on the ground. Do note my right leg is NOT on the ground, it is slightly elevated so I was able to get both legs in the x ray.

So from my experience walking (or practicing walking) and the x ray photo, it just makes logical sense to me that the misalignment can be the cause. I am not 100% sure, all I can do is take what I experience from my legs and how that experience correlates with x rays I've been taking.

The knee joint pain you have...do you also have a scar from the surgery at that area? Is there some numbness? How long ago is your surgery?

The feeling of falling backwards the problems you describe regarding walking sound familar to me.

Again stretch as much as possible (even if it hurts), I also recommend this kind of device: https://www.amazon.de/gp/product/B073W9JCDZ/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1

And do as much PT as possible. Because only since I do PT I noticed improvement. Before When I stood straight I would fall backwards if I didn't lean forwards, since I strengthen my muscles I can withstand the falling a bit better. Especially after having stretched my Achilles Tendons, it almost feels normal again. It will take quite some time.

[marathonrunner]

Temaki, thanks for that video, that is really informative. Good share thanks. I have not seen RGKey x rays. Could you help link it here? In terms of pronation.. I'm not sure I will ask next time I'm at the hospital.  But blocking screws.. maybe that might have helped in my case. Good video thanks.

Great, can you also help share a link to Jolien's x ray? For the knee pain, at the joint level, no scars, below the joint level where there is also pain, yes scars. My surgery was approx 2.5 months ago. It's not numb.. its pain. And at some of the scar sites I previously didn't have a bump there but after around week 3-4 I can feel 2 bumps on the upper tibia near my knee joint. I call these my bone bumps lol. So I don't know why I have these bone bumps some doctors have said it could be because of screw insertion or nail insertion causing the bone to grow around it and form a bump. But honestly I have no clue. I just have these bone bumps on my left leg near or on the scar sites.

I don't know... I am scratching my head as well as to what is causing the knee pain and also the sharp (feels like nerve pain) pains near my lower left leg shin area. The lower left leg shin area doesnt have any scars, no screws on the front of my leg... but yea it hurts, whenever I exercise it feels like pain coming from inside my bone? the muscles on top of the bone? (could be the nail inside pushing against the bone?) I dont know :[

The feeling of falling backwards only happens on my left leg. My right leg doesnt have this feeling.. so again I can only guess it is due to the alignment.

[TemakiSushi]

https://imgur.com/QCjeB92

[Great321]

Great, can you also help share a link to Jolien's x ray? For the knee pain, at the joint level, no scars, below the joint level where there is also pain, yes scars. My surgery was approx 2.5 months ago. It's not numb.. its pain. And at some of the scar sites I previously didn't have a bump there but after around week 3-4 I can feel 2 bumps on the upper tibia near my knee joint. I call these my bone bumps lol. So I don't know why I have these bone bumps some doctors have said it could be because of screw insertion or nail insertion causing the bone to grow around it and form a bump. But honestly I have no clue. I just have these bone bumps on my left leg near or on the scar sites.

I don't know... I am scratching my head as well as to what is causing the knee pain and also the sharp (feels like nerve pain) pains near my lower left leg shin area. The lower left leg shin area doesnt have any scars, no screws on the front of my leg... but yea it hurts, whenever I exercise it feels like pain coming from inside my bone? the muscles on top of the bone? (could be the nail inside pushing against the bone?) I dont know :[

Scroll down to the last pages.

https://docs.google.com/document/d/1VNK02DtwgTiOL0AOVq5h4fLHy7RSNwEDq8IXS628psw/edit#heading=h.1vm1pp40gke
Have you considered asking other doctors? Write e-mails to several doctors, describe your problem and the circumstances around it as detailed as possible and send your X-rays and whatever important documents you have that describe the surgery. You could also go to a local orthopedist in your area. It might help to ease your mind.

The feeling of falling backwards only happens on my left leg. My right leg doesnt have this feeling.. so again I can only guess it is due to the alignment.

If you want you can post pictures/a video here or via pm so that I can understand what you mean by that. I imagine you mean that when you stand on your right foot (while the left foot only touches the floor with its toes) you don’t feel like falling backwards. But as soon as you put your whole left foot on the floor, you feel like falling?
Have you tried the other way around? Try to stand on only your left foot while touching the floor with only the right foot’s toes. What do you experience?

[TemakiSushi]

I'm no expert but I think no matter if LON/LATN or Stryde for tibia. It's basically both a nail inside the tibia which is fixed by screws. If you look at Jolien's latest X-rays you see that her fibulas aren't hold/fixed by any screws. You can ask a doctor but I don't think that fibulas are supposed to be fixed.



The knee joint pain you have...do you also have a scar from the surgery at that area? Is there some numbness? How long ago is your surgery?

The feeling of falling backwards the problems you describe regarding walking sound familar to me.

Again stretch as much as possible (even if it hurts), I also recommend this kind of device: https://www.amazon.de/gp/product/B073W9JCDZ/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1

And do as much PT as possible. Because only since I do PT I noticed improvement. Before When I stood straight I would fall backwards if I didn't lean forwards, since I strengthen my muscles I can withstand the falling a bit better. Especially after having stretched my Achilles Tendons, it almost feels normal again. It will take quite some time.

Jolien didn’t have big muscles and did Externals
Women usually have softer and weaker muscles which may not pull back too much
But anyways experienced doctors do put screws even with externals to hold fibulas since they’ve been aware of the risk of not holding it

With external, some doctors think it’s ok with pins, but pins are not strong enough to hold back against big muscles
Doctors who are practicing old methods don’t put screws, not aware of the risks
If fibula ends up shorter, that can also be a cause of pronation and flat feet because it changes the alignment in ankles
Also this will be stressful to the knees, even if there’s no pain yet, later on can cause premature arthritis

[cena]

marathonrunner whatever you find out from a 2nd opinion from an LL and deformity correction specialist please keep the thread updated. Otherwise new readers will think what forum members wrote is gospel.

[Great321]

Jolien didn’t have big muscles
Women usually have softer and weaker muscles which may not pull back too much
But anyways experienced doctors do put screws to hold fibulas since they’ve been aware of the risk of not holding it

Doctors who are practicing old methods don’t do so, not aware of thw risks
If fibula ends up shorter, that can be a cause of pronation and flat feet
Also this will be stressful to the knees, even if there’s no pain yet, later on can cause arthritis

If that's a fact future patients would be happy to know more about that. You can help them by stating those good doctor's names and share X-rays where fixed fibulas are seen from patients of those doctors.

[TemakiSushi]

my sources of information don’t participate here why do I have to open their private information
If anyone is interested in avoiding the slightest complications, he or she needs to do very deep research on his own

The doctors like India, Russia or most Europe, they are really only doing old methods and not modifying surgical techniques for better results
And patients of such are brainwashed by their words “no problems, don’t worry”
It’s really scary after knowing what’s been happening behind internet

[TemakiSushi]

I understand. It's nice to see you being proactive about your worry.

If they charge the same, I would think Parihar because he is more experienced and he seems to do these routinely as per his youtube.

Oh no parihar to me seems quite dangerous doctor however I only saw X-rays of one tibia case and one femur case on this forum
In both cases he had butterfly fractures, fibulas aren’t fixed properly with strong screws, femurs osteotomy site is too high up
Quality of some X-rays aren’t good and makes me think if they have good trustworthy equipments

You may think oh it’s only two cases
But among these rare diaries of Parihar, 2 out of two or three?
That’s very high chance
Luckily they may not have had severe complications, if he has tendencies of making butterfly that often, someday he might make big one to bother screws and have not a good alignment and may cause premature arthritis

[Medium Drink Of Water]

Keep in mind that correlation is not causation, and that many "bad" legs throughout the LL process have nothing visibly different about them.

I remember people panicking during LL over the slightest thing.  I did this myself.  But a lot of the time it ended up being no big deal.  So certainly get it looked at by another doctor, but remain strong and smart during this difficult time.

[cena]

Oh no parihar to me seems quite dangerous doctor however I only saw X-rays of one tibia case and one femur case on this forum
In both cases he had butterfly fractures, fibulas aren’t fixed properly with strong screws, femurs osteotomy site is too high up

I just gave him suggestions of 2 doctors who offer consultations via Skype for a fee because traveling in this state is not easy.

I'm sure if he emailed Paley he would reply in one sentence like "Yes this is ok" or "No this needs correction asap". But I still suggested to him to email Paley as well.

If you have another doctor he should consult with, please let him know. I am sure you agree with me that he needs a consultation and should not arrive at a diagnosis based on what members write here.

Quality of some X-rays aren’t good and makes me think if they have good trustworthy equipments

Yes equipment in India is probably old.

I remember people panicking during LL over the slightest thing.  I did this myself.  But a lot of the time it ended up being no big deal.  So certainly get it looked at by another doctor, but remain strong and smart during this difficult time.

I second Medium Drink of Water. Certainly get it looked at by another doctor, but remain strong and smart during this difficult time.

[marathonrunner]

Thanks everyone, just saw a bunch of discussions here.

Let me update everyone here 2nd opinion from another doctor:

Copy and pasted below, removing doctor name only, everything else is verbatim:


1. Concerning your left tibia, it’s true that there’s misalignment but that misalignment isn’t a huge deal clinically. But if you want the correction despite of it, I can correct it for about 2 weeks of correcting with the external fixator without taking your STRYDE nail out.

2.   There are two things that has to be treated and that you should be concern about way more than the misalignment on left tibia: First, both of your fibula heads need to be fixed with the tibia bone. Second, both of your ankle screws are too thin that they both need to be changed otherwise it can give you valgus deformity.

Seems Temaki was spot on with his remarks, kudos to you.

The 2nd opinion did say it isn’t a huge deal clinically, but these are my legs and I will have these for the rest of my life, so even a medium sized deal I think is warrant serious consideration for a fix.

[cena]

Oh no parihar to me seems quite dangerous doctor however I only saw X-rays of one tibia case and one femur case on this forum
In both cases he had butterfly fractures, fibulas aren’t fixed properly with strong screws, femurs osteotomy site is too high up

TemakiSushi, has Parihar done internal tibias? "fibulas aren’t fixed properly with strong screws" is a problem with internal methods isn't it? Which diary are did you mean?

Thanks everyone, just saw a bunch of discussions here.

Let me update everyone here 2nd opinion from another doctor:

Copy and pasted below, removing doctor name only, everything else is verbatim:


1. Concerning your left tibia, it’s true that there’s misalignment but that misalignment isn’t a huge deal clinically. But if you want the correction despite of it, I can correct it for about 2 weeks of correcting with the external fixator without taking your STRYDE nail out.

2.   There are two things that has to be treated and that you should be concern about way more than the misalignment on left tibia: First, both of your fibula heads need to be fixed with the tibia bone. Second, both of your ankle screws are too thin that they both need to be changed otherwise it can give you valgus deformity.

Seems Temaki was spot on with his remarks, kudos to you.

The 2nd opinion did say it isn’t a huge deal clinically, but these are my legs and I will have these for the rest of my life, so even a medium sized deal I think is warrant serious consideration for a fix.

Thanks for updating us marathon. It sounds like Paley but you don't have to tell us  So what are you planning to do about the 2nd set of problems?

[marathonrunner]

Well I think I will go and get both items fixed, anything to help get me back to 100%

I definitely underestimated how tough (and expensive) this kind of surgery is and how important it is to do it right the first time. Lessons learned for sure.

[Michael01]

Well I think I will go and get both items fixed, anything to help get me back to 100%

I definitely underestimated how tough (and expensive) this kind of surgery is and how important it is to do it right the first time. Lessons learned for sure.

At least in your case you found a solution and you can afford it. It's not the worst outcome. Some people here don't wanna know the truth what may happen if you go to certain doctors.

[TemakiSushi]

TemakiSushi, has Parihar done internal tibias? "fibulas aren’t fixed properly with strong screws" is a problem with internal methods isn't it? Which diary are did you mean?

Thanks for updating us marathon. It sounds like Paley but you don't have to tell us  So what are you planning to do about the 2nd set of problems?

It doesn’t matter if it’s with IM nails or not
Fibula should not be much shorter then tibia if it got union

[TemakiSushi]

This was my tibia approx 14 days after surgery (you can see the misalignment already). I can't find my 10 day after surgery photo (but only 4 day difference) but for the comment that said my bone growth in the gap area looks sparse.. is it normal to have around 1cm gap post surgery?

In this photo (14 days) I am above 1cm already in the distraction length. Basically after surgery there was a gap of approx 1cm, not 1mm.

Is that normal? My friend who is doing his surgery with Paley said he started with a 1mm gap, not a 1cm gap. So now I am confused as to why my gap was 1cm post surgery instead of 1mm.

Also ignore that white stuff in the distraction in my x ray here. That is not bone growth. Actually I had an infection at the distraction site on my left leg, if you look at the area to the very right next to my skin (ignore the area between my bones, just look to the right of that next to my skin) you can see the infection forming. I had to get additional surgery to remove this infection, at first doctor said swelling is fine and said no its not an infection but around weeks 3-4 it clearly was an infection and it was quite scary too given how big the bump was. Had to go under the knife again for this.

But anyways, my question now is, is it normal to have a distraction of 1cm post surgery as opposed to 1mm? I started .66 distraction around day 2 post surgery so maybe the bone is getting too far apart too fast?

I have no idea to be honest.. its my first time doing any kind of surgery and it seems I just keep running into issues (or finding out about discrepancies between my distraction and other's distraction).

Also the nail is worrisome, it may be not inserted enough, bothering knees

[Ghostfish]

Also the nail is worrisome, it may be not inserted enough, bothering knees

I do agree with TemakiShushi in that the nail may be not inserted deep enough as compared to the right leg, which may cause knee pain as well as difficulty standing and walking.  You may also ask another doctor about this concern.  Personally I think misalignment in your left leg is not too bad, although it could be better to have a good alignment.

Fibula needs to be fixed from the beginning.  I know a patient who did tibias with Precice with Dr. Paley, several years ago.  Back then, doctors were not really aware of importance of fixing fibulas, so even Dr. Paley didn't fix it.  Later that patient found a problem in fibula, like fibulas were not extended as much as tibias so they were already preconsolidated, preventing further distraction and other problems.  So Dr. Paley broke his fibulas again and inserted screws to fix them with tibias.  Then the patient finally finished his journey.  Ask your doctor whether he can do it or whether it is necessary at this moment.

I also think your legs, especially left leg, are very tight even though you lengthened barely 4 cm.  There are many indications about this.  The screw in the left ankle is bent severely.  Your left leg seems to have some degree of  ballerina foot.  You have pain in left shin.  This pain in shin is very common nerve for tibia patients who lengthened quite bit or whose legs are too tight.  Basically your muscles are pulling your nerve.  But it will go away as you stop or slow down, which depends on how your leg can recover.  Stretching is good.  However, in your case, it may be too hard for you to do aggressive PT.  Sit up on the bed and use a towel or a stretch strip to hold your toes and pull your ankle as much as you can.  Hold it for at least 30s and repeat at least 3 times.  Another good PT for you is to raise your leg as much as you can using a towel or a stretch strip.  Lie on bad and hook up your foot with a towel and pull it up.  Legs should be straight, which is important to straighten your knee.  Do these PTs many times a day.

Hope you feel better.

[marathonrunner]

yes thanks, for all these issues I will go over everything with the 2nd doctor and make sure it’s all cleared.

If I’m going to have these nails in my leg for 1-2 years and I live a really active lifestyle I’m going to need to fix whatever needs to be fixed.

I had a feeling it was nerve pain in the left shin, because of the infection I had, I had to remove more skin at the infection site (osteotomy site) which made everything in the front left leg tighter than the right.

So not just muscles being tighter the skin is tighter as well.

I will write a list of “tibia lengthening dos and don’t” after I finish this journey I think people considering tibia LL can learn from all the stuff I’ve been through.

[cena]

It doesn’t matter if it’s with IM nails or not
Fibula should not be much shorter then tibia if it got union

Can someone who understands TemakiSushi's point please explain this other words? He is saying fibula should not be much shorter but how is this possible in an external only scenario? For example here are kilokahn's xrays can be found here http://www.limblengtheningforum.com/index.php?topic=634.msg19014#msg19014 and here http://www.limblengtheningforum.com/index.php?topic=634.msg15499#msg15499

I really appreciate and hope to understand this better.

[nomad13]

Guys how to post pics with thumbnails as seen here?

[marathonrunner]

Cena: sorry I have no clue :[

Nomad: look at the very first pinned thread in the patient experiences section, there are some good instructions there

[Moncx]

Here also have similar problem
After surgery in both tibias

Finally leg left in angle 4°
Right leg 2°

Doctor said normal parameters but unfotunately left leg is not good, disturb, unconfort and little pain
Im worried maybe need new surgery for correct this bone angle
😩

[TemakiSushi]

Here also have similar problem
After surgery in both tibias

Finally leg left in angle 4°
Right leg 2°

Doctor said normal parameters but unfotunately left leg is not good, disturb, unconfort and little pain
Im worried maybe need new surgery for correct this bone angle
😩

Yes you probably need extra surgery to fix the misalignment otherwise this condition will lead to various joint problems

[Moncx]

This days so worried and think to much in that second surgery needed it

But then no understand why doc said its ok. Do u have normal parameters in both tibias angle???

Maybe some special exercise?
Help me!

[TemakiSushi]

Exercise does not help misalignment at all
Most CLL doctors are crappy
Don’t trust 100% of what they tell you
Tibia surgery is lot more complicated than femurs
Many get misalignment without realizing it and long after surgery they notice something is wrong
Where are you now?
I’ve done quite a bit of research about tibia surgeries, I can tell only doctor I can trust for tibia lengthening is Donghoon
He can fix misalignment very precisely

[tallerforever]

Do you have any advice for femur stryde CLL except Dr. donghoon? He is excellent, I know, but the price is a little beyond my ability.

[Fox]

hi marathonrunner,

any updates?