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[marathonrunner]

I thought 0-5 degrees was the threshold for alignment.

Mine seems like it is way above 5 degrees, is this ok? Plus.. its been almost 3 months now and I can walk just fine with my right leg but my left leg has been having weird pains in the knee, below the knee, in the lower tibia area and when I walk on my left leg I land on the front half of my feet. I think because of the angle of the bone my left leg naturally lands on the front of the feet instead of in the middle. I dont have this problem at all with my right leg. Is this normal? Did anyone else have any sort of misalignment issues with their leg or legs?

[marathonrunner]

whoa images too big, here we go

[cena]

I think you already posted this. Some said it's okay, some said it's not okay. Your doctor said it's okay.

Are you still lengthening?

On the deformity, you need to get a second opinion from a doctor. You can send an email to Paley and ask him but obviously his response will be brief and cannot be consituted as medical advice via email. Some doctors offer Skype consultations (Parihar and Giotikas I think) apparently. That might elicit a better response.

Good luck and let us know.

[marathonrunner]

Hey, yea I asked before but I just did some angle measurements which are new so thought I would ask again with this new info. From my understanding it’s acceptable from 0-5 degrees off, my right leg is only 1-2 degrees off so almost fully straight, my left is off by around 8 degrees so that’s what I’m worried about.

I’m almost done lengthening should be done in the next week or 2. I’m just curious if anyone else had this issue and if they had to do another surgery to correct the deformity. I don’t know how my leg would feel once fully healed but right now my left leg is in much worse shape than my right. Functionally it’s almost impossible to walk on the left leg, my right leg is completely fine. And even exercising or standing up straight I’m having a lot of issues with the left leg, again the right one is fine. I feel like I could be walking quite well if both legs were like the right one.

So just curious if someone with a similar situation needed a secondary surgery or if things were fine after the legs were fully healed.

Which doctor out of the 2 you mentioned would you recommend for a second opinion?

Parihar or Giotikas?

[marathonrunner]

Another side by side comparison (left side is right leg, right side is left leg)

That left alignment does look pretty scary though right

[marathonrunner]

Here is a photo of my left leg, you can actually see the misalignment (top bone protruding) from the outside, not just through x rays.

Its a slope down, ---\.....  kinda like this when I look at my leg. So, if anyone else has this issue I would love to hear about it. Or maybe I just had bad luck with choosing my surgeon and I'm the only one with this on my leg :[

[cena]

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.

[marathonrunner]

Thanks, I mean if anyone else ever has had this problem I would love to hear what you did to solve it.

My surgeon is not helping at all. He just said, nail is secured in place, and he said all the pains I’m feeling only in my left leg are normal (I feel none of this in my right leg, especially the knee problems, I can’t even straighten out my left leg without immense pain unlike my right leg, when I go swimming my left knee makes clicking sounds like when you crack your knuckle, it will click twice when I go from bent to straight, that can’t be right.. right?). I’ve sent him x ray after x ray and he’s blaming the x ray machines for not taking proper pictures. So.. for someone so avoidance on helping his patient in fear that he created the deformity. I now need to try to find out on my own what the truth is. It sucks when your own surgeon is so in denial they start blaming the x ray machines for not taking proper photos... he said my EOS x ray cannot be trusted. So weird.

Are surgeons usually so dismissive of patient queries or patient problems or is it just my surgeon? 

I have been trying to ask him if I should fix this deformity before bone hardens and I don’t mind switching to an external fixator after I’ve achieved my length. He ignores this and won’t answer my concern. Weird right?

So I only have been with 1 surgeon.. I don’t know how other surgeons are in this regard.

So really anyone that may have had the same problem, I would love to listen to what you did in my situation.

[Ghostfish]

Hi marathonrunner
I am sorry to hear that you have some problems in your left leg.
I can't tell you whether your left leg is misaligned or not.  However, what I can tell you is that your screw in left ankle is seriously bent. This is one indication that something is going wrong.  My first suspicion is that your left leg must be super tight as compared to the right leg.  When your muscles are so tight, screws or even nails can be bent.  So I think you need to slow down or even stop lengthening until your left leg feels better.  Don't try hard to walk or to do PT.  Just take an easy until you feel better.  Your bent screw may or should come back to be straight. 
Your left leg does seem to be protruding on the top segment of broken area.  I am not so sure whether it was done during the surgery or lengthening, since I am not a doctor. Perhaps it could be within a normal range of variation.  Ask your doctor.
However, I am also a little bit concerned about your bone growth. They seem to grow quite slow.  You'd better slow down for a while (1-2 weeks) to see how bones grow.

Good luck,

[marathonrunner]

Oh dear.. you mean I might have get non-union between the bones? I've actually slowed down since around 1 week ago. Instead of doing .66 daily I am now doing only .33 daily. Maybe I will slow down more and do .33 every other day.

For the misalignment, its been like this ever since my first x ray 7-10 days post surgery. The angle has always been protruding like this. My doctor kept saying its normal, its normal but after 3 months, and comparing my left leg to my right leg when I walk, it certainly doesn't feel normal.

Yea.. I noticed the screw in my left leg being bent as well. I was considering taking it out earlier to prevent breakage, my fibula is connecting well so if I take out the screw prematurely it might be ok.

My left leg is tighter than my right but not by a huge amount. I do have some pain in the front shin area (lower tibia bone) on my left leg though. I've never had any external injuries nor did I ever knock my legs on anything (I'm still using a wheelchair and I'm coming up on 3 months). But the pain in the front shin area (left leg) comes when I exercise or stand up to stretch my calves. Since the bones are somewhat misaligned to me it feels like the bottom part of the nail is pushing against the front part of my left leg. I have no other idea as to why I'm getting this pain there as I dont have any external injuries at all, its all internal. So the 3 areas in my left leg that is giving me pain is directly at the knee, below the knee, and lower tibia shin area.

The biggest challenge I'm facing is when I try to walk, my left leg tends to land on the front half near my toes instead of in the middle (or middle back). So it is hard to walk normally even using crutches. When I walk I usually land on the rear of my foot, it makes a rolling motion to the front of my foot and then I switch legs and alternate. But because of how the bone is aligned, my left foot can't really land on the rear of my foot, its hard to make that rolling motion to the front of my foot as well. I don't know how to overcome this with the alignment that I have. So I wonder if other patients out there have had this experience and how they were able to overcome it, especially to walk normally, how do you do it? I just can't get my feet to walk normally even with a walker.

[hello321]

which country did you do the surgery from?

[marathonrunner]

Singapore

[marathonrunner]

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).

[cena]

The standard way is to lengthen 1mm after surgery to test the nail and then start lengthening from day 7. That is how they do it at Paley's. Guichet does 1cm lengthening after surgery and even Betz (?)

I am surprised you have not had this discussion with your doctor marathonrunner.

Was your infection an incision site skin infection? Does it go back inside the bone like that? I didn't know this was possible.

[Beforeandafter]

It look little bit misaligned (Negligible) It will be fine once the callus start forming .

[cheekycabs]

I would be lying if I said that looked aligned... I'm not sure how responsive your doctor is but mine showed me X-rays of old patients saying mine would be fine. I was extremely worried about pre-consolidation so I was shown other xrays that were similar to mine and that ended up fine.

[marathonrunner]

Cena: That is weird, I dont know why my doctor didnt do the standard 1mm and instead opted for 1cm. To be honest I just found out about this now after speaking with my friend who is at Paley now. I didn't even know that 1cm wasn't standard.. until now.. I honestly dont know why my doctor didn't do it the 1mm way. It seems like alignment would have been much better if he had done a 1mm gap instead of leaving a 1cm gap. So.. yea I dont know. Scratching my head as well. I wonder if I am going to run into non-union issues now..

The infection was an incision site skin infection, it was the incision site where the bone is broken to create that gap. I think the white stuff in the photo is a combination of the skin infection and something else (bone debris from the surgery? hell if I know :[ ) but you can see the infection clearer in follow up x rays. (Looking at the skin not in the gap)

Beforeandafter: thanks I don't know why but I've been having issues with the knee, with sharp pains in my lower tibia, I honestly dont know what is going on with my left leg because an x ray can't see as well as an MRI, and no way I can do an MRI with metal in my leg. The only thing that is different between my left and right leg is the procurvatum so that is my best guess as to what is causing this.

Cheekycabs: so did you also have procurvatum? how did your leg turn out, was it ok? would be really useful if you've gone through this and can share your experience

I actually got private messaged by another member who had the same issue as I did but their degree was slightly more than mine. He/she told me 3 different ways to fix it, I hope he/she doesn't mind if I share that info here.

(1)   Remove the nail and fix the deformation with TSF.( Opinion of doctors who mainly treat fractures)
(2)   Remove the nail, correct the deformation by surgery, insert the new nail and fix the bones.
(3)   Wait for the bone consolidation, then remove the nail, perform osteotomy, insert the new nail and fix the bones.

He/ or she, I'm not sure as I just have a username, they told me they used the 3rd method to fix their procurvatum because the 2nd method may affect bone length as the bone is still soft.

I don't know all the details but seems they were able to fix this exact issue by doing method 3 which is promising but also kind of sad. I spent a   ton of money on the surgery already for stryde and now need to spend more money and go through more osteotomy and surgery to fix something that should have been done right the first time.

If only I had 2 right legs.. I could be out and about, my right leg feels really good and hasnt had any issues. Its my left leg that is confining me to the wheelchair still.

[TemakiSushi]

It look little bit misaligned (Negligible) It will be fine once the callus start forming .

It is not negligible at all
How you could be soooo irresponsible

[Cpl2012]

May i ask who is your Dr?

[marathonrunner]

I would rather not say publicly, feel free to message me, I’ve already stated I did the procedure in Singapore.

[Ghostfish]

I actually got private messaged by another member who had the same issue as I did but their degree was slightly more than mine. He/she told me 3 different ways to fix it, I hope he/she doesn't mind if I share that info here.

(1)   Remove the nail and fix the deformation with TSF.( Opinion of doctors who mainly treat fractures)
(2)   Remove the nail, correct the deformation by surgery, insert the new nail and fix the bones.
(3)   Wait for the bone consolidation, then remove the nail, perform osteotomy, insert the new nail and fix the bones.

I am so sorry for you.  I think you should ask other respectful doctors to discuss your situation.  Your situation may be not as bad as it appears to be or could be worse than it appears.  Your left leg might be a simply weaker one like many other patients.  My right leg was a weaker one although it seemed to be better than your left leg.  Or it could be more tightness and less bone consolidation in the left leg. 

Since you lengthened more than 5 cm, why don't you completely stop lengthening at least 2 weeks to see whether your legs show recovery including bone growth.  You can start lengthening again after that, if you want to. You should be able to see some improvement (less tightness, less pain, more bone consolidation) in 2 weeks, if everything is fine.  If not, something is not right.   

Regarding 1 cm gap you mentioned after surgery, I am a little bit confused about it because you said you began to lengthen at 0.66mm 2 days after surgery, which is sort of insane, I think.  Anyway, in this case, at 14 post surgery, you had lengthened about 8 mm, meaning that your gap could be about 9 mm assuming you had 1 mm gap from the surgery.  Right?  So in this case, your problem was not caused by the initial big gap. 

As for the correction of this kind of issue, I remember that there was a thread in which he/she was describing procurvatum.  If I remember correctly and that case is the same one you are mentioning here, it was much more serious than yours.  I was quite shocked to see that X ray.  However, there are many differences between his/her case and yours.  His/her case was much more serious, he/she used a different method (not Stryde), and his/her bone was almost completely consolidated.  The way to correct his/her case was very hard and expensive.  You may still have chance to correct or fix your issue without going through any of options you mentioned.  You may be able to just recover fine.  However, I can't tell for sure.  You have to ask other doctors and stop lengthening to see how your left leg gets better.

Hope you will recover well!

[Medium Drink Of Water]

A slight bend in the tibia is acceptable.  In fact, some foreigners at the hospital in China requested that a slight bend be put into their legs based on research done by Lumberjack.  This was done by turning the knobs on the Ilizarov frames unevenly for a time, until the gap wasn't quite straight anymore and therefore the bone would heal a little bit bent.

He read an article about how men's tibias often have a slight bend and that this may be beneficial biomechanically.  At the time, I didn't trust a layperson like him and didn't even read the article, just wanting to trust Professor Xia and Dr. Peng who were doing everyone's legs straight, but the results of those "Lumberjack legs" cases were fine.  Lumberjack was one of the strongest and best patients who consolidated quickly and came back for his internal nail removal quite early.

Of course this post is not medical advice specific to your case, and neither is any other post here, but if your doctor says it's fine, and I've seen cases where the tibia being bent doesn't necessarily mean something is wrong, you should feel a little better about your situation.

[marathonrunner]

Thanks Ghostfish, actually I’m not above 5cm. Right now I’m around 4cm (last x ray one leg was 3.8-3.9 the other leg was 3.7-3., well below the 5cm mark. I’m only lengthening .33 now and it’s been a while already at this rate. Some days I even don’t lengthen to make sure there’s no nonunion problem. So my goal is 4.5 if I continue at .33 everyday I should be able to reach 4.5 around the next 2 weeks(ish).

Also for the x ray at 14 days I was between 1-2cm already. There were A couple days that I didn’t lengthen, during that time, the gap was most likely close to 1cm post surgery and again at 14 days it was if I remember around 1.7cm?

Thanks Medium Drink of Water. So I don’t know mister lumberjack, all I know is what I feel in my left leg compared to my right.

I doubt it’s a problem of strength because historically my left leg has been stronger than my right. I’ve been working out doing all sorts of workouts from yoga to marathons to HIIT to strength training to calisthenics to flipping tires at a CrossFit gym. I workout 4-5 times a week every week since I was 14 (let’s just say it’s been almost 20 years) I know my body and my legs.

All I know at this point of time is my left leg when it lands, it lands near the front of the foot, it doesn’t land normally like my right leg. I know there is excruciating pain in my left knee where I can’t hold out my left leg straight, and there are other pains below the knee and in front of the left tibia.

And I know I’ve never had an external accident. I’ve been in a wheelchair everyday since surgery and it’s coming up on 3 months now.

So if there were no external forces to cause pain to either of my legs, then logically I can only assume the pain is coming from inside.

And what is the difference between my right leg and my left leg? The misalignment or the lumberjack leg.

So what I worry is that the knee pain has been about a month now and I don’t know how to diagnose it without a CT scan which is impossible with stryde. And I don’t understand why there is this sharp pain in my left leg shin area. And why would all these issues come up if I’ve only done 3.7-3.8 cm? It’s not like I’m aiming for 6-7cm. I’m aiming for 4.5 which is well below 5cm and currently I am barely at 4cm in my left leg.

So let’s put this all into perspective, no external injury, I use wheelchair daily, I exercise in a pool and on a stationary bike, and sometimes I try standing to stretch my calves muscles, I’m currently around 4cm for both leg. So what is causing all this pain for my left leg and not my right when historically my left leg has been stronger?

All I can think of is this misalignment, and to be frank, what I feel in my leg, the pains it translates into the x ray photos. The x ray photos makes sense as to where I’m feeling the pain.

I’m not a doctor, but when my own doctor doesn’t help me investigate, won’t listen to my queries, wont listen when I try to say hey.. I’ve been having these pains it’s coming up on 3 months and it’s not going away, and he brushes my concerns off like they cannot be true, then I start to worry because it’s hard to get a second opinion from a surgeon who didn’t perform the surgery.

So my hope is that after I stop lengthening at 4.5 that the doctors here can help me overcome the knee pain and the other pains (I don’t work in Singapore) and if I still cannot walk correctly then I will go for corrective surgery with another doctor similar to the other person I spoke with.

My latest x Ray was using the EOS machine and it was standing, I’ve posted it here, it’s the photo of my legs in lateral view where the bone is not as solid white because EOS uses ultra low dose of radiation thus the x ray isn’t as deeply colored as the other x rays.

Take a look at my left leg in that photo, that is my latest x ray in a standing position with some weight on my legs (the rest of the weight I’m using my arms to hold a bar to keep me upright).

Does it look ok? To me it looks scary.. it looks worse than the regular x rays where I’m laying on a table with no weight on my feet.

So am I suppose to not put weight ever on my feet? No right? I need to at least be partial weight bearing. See what my left leg looks like in the EOS x ray when I am partial weight bearing and if you still think it looks fine.. then please let me know your experience so I know there is still hope for my leg without another surgery.

[marathonrunner]

EOS latest x ray I took lateral view is response number 4, you will see both legs there. My right leg is in front (left side of photo) my left leg is in back (right side of photo).

[Medium Drink Of Water]

The "5 cm rule" is just something that was made up arbitrarily.  It definitely doesn't mean that you won't have any pain or problems before going past 5 cm.  LL can be extremely painful, and many people alternate between having "good" and "bad" legs many times throughout the lengthening process.

[marathonrunner]

I see, so yea I don’t know if that 5cm rule applies or not.

I just know my right leg is fine while my left isn’t.

And the main difference is the alignment.

So I can only assume it’s due to this as I don’t have any external events or anything else causing the difference in my legs.

So far no alternating at all, it’s been right leg fine, left leg not since inception. The only issue I had with my right leg were the extra holes drilled near the ankle, but that is specific so I know the issue and I know where the pain is coming from.

Other than that no alternating at all, left leg has always had the pains and problems thanks.

[Great321]

So the 3 areas in my left leg that is giving me pain is directly at the knee, below the knee, and lower tibia shin area.

The biggest challenge I'm facing is when I try to walk, my left leg tends to land on the front half near my toes instead of in the middle (or middle back). So it is hard to walk normally even using crutches. When I walk I usually land on the rear of my foot, it makes a rolling motion to the front of my foot and then I switch legs and alternate. But because of how the bone is aligned, my left foot can't really land on the rear of my foot, its hard to make that rolling motion to the front of my foot as well. I don't know how to overcome this with the alignment that I have. So I wonder if other patients out there have had this experience and how they were able to overcome it, especially to walk normally, how do you do it? I just can't get my feet to walk normally even with a walker.

You did LON right? The three painful areas you are describing seem to be typical for LON (or LATN) actually. Because the knee was operated on, and the screws were each drilled inside your bones below the knee and above the ankles. Do you still have pain there or did it get less?

The problem you are describing while walking might not be (only) coming from "the misalignment". Do you have some kind of ballerina foot? I was walking like that for the first couple of months until a PT noticed that. It's a relieving posture we get use to but it's wrong and we need to force ourselves to try to walk normal until our body gets used to the normal way again. It won't be easy in the beginning. Stretch your Achilles tendons as much as possible and walk a lot.

[marathonrunner]

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.

[TemakiSushi]

Looks like the screw to hold left leg fibula is too thin and bent
Also the upper screw doesn’t look like its holding the fibula
This cause the fibula and calf muscle to pull down upper part and became shorter than tibia as you can see the gap of fibula is smaller than the gap of tibia
As lengthened, the bent tibia got worsened with this force, it seems
This doctor doesn’t seem very knowledgeable of inserting IM nails for cosmetic lengthening
It’s better to find other doctors who can do the right things for this condition
But no need to do external
Good doctors with lots experience of fixing complications can fix it with IM nail
Misalignment can only be fixed by surgery

[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?