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[lovinglonglegs]

i'm in lengthening phase, and it's about to end soon. but i barely hear from my doc about how my legs are now and if there's discrepancy etc.

recently i asked to check for both leg's lengths to find out if there's discrepancy but he's barely responsive and seems not interested in it at all.

he's a renowned surgeon and i never expected this. what should i do? this is terrifying

[Zib]

Who was your surgeon or in which country did you do This surgery?

Maybe you Should ask another surgeon for help if your surgeon is ignoring you, especially if you think you had an leg discrepancy

[lovinglonglegs]

in USA, he's a renowned surgeon.

[NailedLegs]

What do you expect anyone here to do for you if you can't even provide enough information? We don't even know what Doctor you're talking about.

Genuinely, what do you think we can do for you here on this forum?

You should be calling your Doctor's office. You should be talking to his nurses and/or PA if you can't get ahold of the Doctor directly. Send emails if you can't call.

You're in the lengthening phase, which means you're doing PT regularly, so why don't you bring this up to one of your physical therapists? Presumably, they'll be working with the Doctor unless you foolishly went back home during the lengthening phase rather than staying local with the Doctor.

I mean I'm utterly confused at what you want anyone here to do. This is a really strange thread.

[lovinglonglegs]

Dr. Roz in east coast. Who knows? maybe someone knows how to handle this situation.

i already sent multiple emails but he's barely responsive, even when my lengthening is about to finish.

I feel like he's not attentive and I'm afraid i end up having different lengths in the legs.

I definitely, must avoid that, but i don't know what to do anymore when my doctor seems not caring.


I don't work with PT specialist. I do PT alone as their instructions.

[NailedLegs]

Dr. Roz in east coast. Who knows? maybe someone knows how to handle this situation.

i already sent multiple emails but he's barely responsive, even when my lengthening is about to finish.

I feel like he's not attentive and I'm afraid i end up having different lengths in the legs.

I definitely, must avoid that, but i don't know what to do anymore when my doctor seems not caring.


I don't work with PT specialist. I do PT alone as their instructions.

Have you called their office? Have you spoken to one of the nurses or PA's at least?

[lovinglonglegs]

dr is responsible for leg discrepancy. plus their PAs are similarly indifferent
i'm kind of disappointed. idk his fame is appropriate though i can't judge yet

[KrP1]

Dr. Roz in east coast. Who knows? maybe someone knows how to handle this situation.

i already sent multiple emails but he's barely responsive, even when my lengthening is about to finish.

I feel like he's not attentive and I'm afraid i end up having different lengths in the legs.

I definitely, must avoid that, but i don't know what to do anymore when my doctor seems not caring.


I don't work with PT specialist. I do PT alone as their instructions.

You could pay for an x-ray called Telemetry. This is an xray of both limbs and it allows you to measure them. It's not very expensive and it's the best way to solve your problem with accuracy.

[EndGame]

dr is responsible for leg discrepancy. plus their PAs are similarly indifferent
i'm kind of disappointed. idk his fame is appropriate though i can't judge yet

Aren't you having regularly scheduled x-rays every 2 or 3 weeks? And then a follow-up appointment later that day if you're in NYC or the next day virtually if you went back home? Did you notice a discrepancy at your last follow-up? You doing femurs or tibias? What does the summary in your MyHSS app say was the amount of distraction in each leg after your last appt? You said "barely responsive" so he did respond then? What was his response? Was he simply saying he'd look at your next set of x-rays? How much of a difference do you see? The ERC machine is saying everything working and legs same amount of distraction? How much distraction so far? It's hard to tell if you're freaking out over a few mm perhaps because one leg early consolidated or if you had a nail break and you've got over 1cm difference and need surgery ASAP to replace the nail. Hope everything works out.

[Marie_Bard]

i'm in lengthening phase, and it's about to end soon. but i barely hear from my doc about how my legs are now and if there's discrepancy etc.

recently i asked to check for both leg's lengths to find out if there's discrepancy but he's barely responsive and seems not interested in it at all.

he's a renowned surgeon and i never expected this. what should i do? this is terrifying

That's so unporfessional and unethical! Is this what they promised you when talking you into doing the surgery?! you should insist or even put a formal complaint imo

[lovinglonglegs]

while i wasn't very satisfied with the way he responded, i can't say anything about him now till i see final outcome.

Aren't you having regularly scheduled x-rays every 2 or 3 weeks? And then a follow-up appointment later that day if you're in NYC or the next day virtually if you went back home? Did you notice a discrepancy at your last follow-up? You doing femurs or tibias? What does the summary in your MyHSS app say was the amount of distraction in each leg after your last appt? You said "barely responsive" so he did respond then? What was his response? Was he simply saying he'd look at your next set of x-rays? How much of a difference do you see? The ERC machine is saying everything working and legs same amount of distraction? How much distraction so far? It's hard to tell if you're freaking out over a few mm perhaps because one leg early consolidated or if you had a nail break and you've got over 1cm difference and need surgery ASAP to replace the nail. Hope everything works out.

i did all.

just i never saw or heard their check on lengths of my legs, except checking the values on ERC.

has anyone had or heard such cases where doctor doesn't check the overall length of leg but only the ERC values?



 

That's so unporfessional and unethical! Is this what they promised you when talking you into doing the surgery?! you should insist or even put a formal complaint imo

You could pay for an x-ray called Telemetry. This is an xray of both limbs and it allows you to measure them. It's not very expensive and it's the best way to solve your problem with accuracy.

thanks for replies

[EndGame]

while i wasn't satisfied with the way he responded, i'm no expert, and i can't judge anything till i see final outcome. it's inappropriate for me to say anything about him now.


i did all.

just i never saw or heard their check on lengths of my legs, except checking the values on ERC.

has anyone had or heard such cases where doctor doesn't check the overall length of leg but only the ERC values?

So how long ago was your last x-ray? How much of a discrepancy do you think you have?

[hippo60]

has anyone had or heard such cases where doctor doesn't check the overall length of leg but only the ERC values?

He should measure the length on the x-ray and compare to the ERC values. It's surprising that's not the case.

[lovinglonglegs]

i wonder if it's ok to go without checking overall leg length. I thought that's the standard protocol. and my doctor seems simply disregarding that. confused.
anyone seen cases like this?

So how long ago was your last x-ray? How much of a discrepancy do you think you have?

last month, i think 8mm

He should measure the length on the x-ray and compare to the ERC values. It's surprising that's not the case.

i expected that too

[EndGame]

i wonder if it's ok to go without checking overall leg length. I thought that's the standard protocol. and my doctor seems simply disregarding that. confused.
anyone seen cases like this?
last month, i think 8mm i expected that too

When is your next x-ray scheduled? I'm surprised you're only getting x-rays every what 4+ weeks during lengthening?
Did it seem fine last month but now a month later off 8mm? Or seems stable at 8mm since last month's x-rays? Perhaps post the x-rays. If the nail is still working you should be able to even them out. Hope everything works out.

[hippo60]

i wonder if it's ok to go without checking overall leg length. I thought that's the standard protocol. and my doctor seems simply disregarding that. confused.

What do you mean by checking overall leg length? Rozbruch & his team just measure how much the nail distracted, you don't need more. Unless I misunderstood you...

[GrowGrow123]

Doesn't he tell you how much each leg has distracted after every X-ray session?

In any case, if there is a leg discrepancy, you should be able to see it with your eyes. I had a minor leg discrepancy myself (of about 8 mm) and it was noticeable even without X-ray.

[lovinglonglegs]

can someone check this xray?
it shows that difference.
https://postimg.cc/gallery/vgSSgf1
not sure if i'm doing it right

 

What do you mean by checking overall leg length? Rozbruch & his team just measure how much the nail distracted, you don't need more. Unless I misunderstood you...

doesn't it have to be checked for
- overall length of the leg on Xray
- distracted length of internal nail inside the leg on Xray
- lengthened values on the ERC
?

my doctor checks only the last two (distracted length of internal nail inside the leg on Xray,
lengthened values on the ERC)

Doesn't he tell you how much each leg has distracted after every X-ray session?

In any case, if there is a leg discrepancy, you should be able to see it with your eyes. I had a minor leg discrepancy myself (of about 8 mm) and it was noticeable even without X-ray.

he looks at ERC value and if one more, the distracted length of internal nail in xray, not the overall length of the leg being lengthened. That concerns me.
i also see slight diff with bare eyes. not sure if that's from other parts of the legs(those not lengthened).

When is your next x-ray scheduled? I'm surprised you're only getting x-rays every what 4+ weeks during lengthening?
Did it seem fine last month but now a month later off 8mm? Or seems stable at 8mm since last month's x-rays? Perhaps post the x-rays. If the nail is still working you should be able to even them out. Hope everything works out.

did you do at hss? or did yu see someone who did there? how was your or their experiences? never heard anything like mine? thanks for your words btw

[Maison]

can someone check this xray?
it shows that difference.
https://postimg.cc/gallery/vgSSgf1
not sure if i'm doing it right

The lengths of both tibiae may have been different prior to the leg lengthening process.
If the lengths of the left and right tibiae are made exactly the same, a discrepancy in the combined length of the tibia and femur may occur.
It would be advisable to discuss this with your physician.

[jerrytheman]

Similar story from Dr. D office. Their front office sucks, and I have no direct access to the dr. It has to go through his secretary who is like, unresponsive unless you triple text.
I think it's important to learn to read own x-ray at this point lol. It's not hard to figure out if there's a discrepancy. Measuring the device length is easier than the bone separation length imo.

[EndGame]

OP, the x-rays seem to have extremely precise measurements on them. Looking at the numbers listed in the first two for example it was ~4mm different (460.86 vs 456.76). It looks like they measured several slightly different angles and had similar differences.

As pointed out by Maison, "If the lengths of the left and right tibiae are made exactly the same, a discrepancy in the combined length of the tibia and femur may occur.
It would be advisable to discuss this with your physician."

I agree with Maison.  When I finished LL femurs at Paley Institute, I early consolidated on one leg. I ended up using the ability to go backwards on the longer leg to even out. However, they were primarily concerned with the hip to heel length being even on both sides not the exact lengths of the femurs as much. So my understanding is that if the combined length of your tibia and femur is even, that's what really matters. I think it's unlikely a doctor would be willing to create a discrepancy in combined length to fix a discrepancy in Tibias unless they were absolutely certain you were going to come back to do femurs next.

Hope everything works out well.

[hippo60]

my doctor checks only the last two (distracted length of internal nail inside the leg on Xray,
lengthened values on the ERC)


he looks at ERC value and if one more, the distracted length of internal nail in xray, not the overall length of the leg being lengthened. That concerns me.
i also see slight diff with bare eyes. not sure if that's from other parts of the legs(those not lengthened).


did you do at hss? or did yu see someone who did there? how was your or their experiences? never heard anything like mine? thanks for your words btw

Why does he need to measure your entire leg every time? The only thing that's changing is the distracted length, which is what he measures. I did a full leg x-ray during my consultation, so I knew the length of my tibias, femurs and overall leg length. Since then, only femurs. And yes, I did all my x-rays at HSS.

Not sure what you mean by "anything like mine", because I don't understand what's the issue or why you'd want a full leg x-ray each time. Even if you had a tiny discrepancy (which I doubt you do), I still don't think you'd be able to see or feel it. Honestly I'm starting to think it's all in your head.

[lovinglonglegs]

OP, the x-rays seem to have extremely precise measurements on them. Looking at the numbers listed in the first two for example it was ~4mm different (460.86 vs 456.76). It looks like they measured several slightly different angles and had similar differences.

As pointed out by Maison, "If the lengths of the left and right tibiae are made exactly the same, a discrepancy in the combined length of the tibia and femur may occur.
It would be advisable to discuss this with your physician."

I agree with Maison.  When I finished LL femurs at Paley Institute, I early consolidated on one leg. I ended up using the ability to go backwards on the longer leg to even out. However, they were primarily concerned with the hip to heel length being even on both sides not the exact lengths of the femurs as much. So my understanding is that if the combined length of your tibia and femur is even, that's what really matters. I think it's unlikely a doctor would be willing to create a discrepancy in combined length to fix a discrepancy in Tibias unless they were absolutely certain you were going to come back to do femurs next.

Hope everything works out well.

did you get checked for overall leg length before finishing lengthening stage(like those i uploaded)?

(those xrays are my own measures. my lengthening ended just now by the way. and stil idk why doctor don't do those measures till the end)

Why does he need to measure your entire leg every time? The only thing that's changing is the distracted length, which is what he measures. I did a full leg x-ray during my consultation, so I knew the length of my tibias, femurs and overall leg length. Since then, only femurs. And yes, I did all my x-rays at HSS.

Not sure what you mean by "anything like mine", because I don't understand what's the issue or why you'd want a full leg x-ray each time. Even if you had a tiny discrepancy (which I doubt you do), I still don't think you'd be able to see or feel it. Honestly I'm starting to think it's all in your head.

isn't it basic to check for overall leg length before finishing lengthening, each xray visit or at least at the end to confirm? ie. you might have diff directly from surgery itself. Double check always required isn't it?
and i had not even 1mm diff originally.

Similar story from Dr. D office. Their front office sucks, and I have no direct access to the dr. It has to go through his secretary who is like, unresponsive unless you triple text.
I think it's important to learn to read own x-ray at this point lol. It's not hard to figure out if there's a discrepancy. Measuring the device length is easier than the bone separation length imo.

The lengths of both tibiae may have been different prior to the leg lengthening process.
If the lengths of the left and right tibiae are made exactly the same, a discrepancy in the combined length of the tibia and femur may occur.
It would be advisable to discuss this with your physician.

Thank you for reply

[hippo60]

i can't understand. isn't it basic to check for overall leg length before finishing lengthening, each xray visit or at least at the end to confirm? and i had not even 1mm diff originally.

WHY DO YOU NEED TO CHECK THE OVERALL LEG LENGTH EACH X-RAY??? Are you able to logically answer that question?

[lovinglonglegs]

WHY DO YOU NEED TO CHECK THE OVERALL LEG LENGTH EACH X-RAY??? Are you able to logically answer that question?

lets say that can be skipped for 'each time'.
but isn't it necessary to check overall leg length at the end of lengthening, to confirm if everything is ok?
or right before ending lengthening, to adjust diff if there's any.

[hippo60]

lets say that can be skipped for 'each time'.
but isn't it necessary to check overall leg length at the end of lengthening, to confirm if everything is ok?
or right before ending lengthening, to adjust diff if there's any.

I can see the reason to check overall leg length during consultation. Did you do it during consultation (or ever)?

What do you mean by "adjusting diff"? Say your right leg is 2mm shorter than your leg (that's very common), but your femurs are same length. Would you stop lengthening at 7.8cm to "fix it"?

[lovinglonglegs]

I can see the reason to check overall leg length during consultation. Did you do it during consultation (or ever)?

What do you mean by "adjusting diff"? Say your right leg is 2mm shorter than your leg (that's very common), but your femurs are same length. Would you stop lengthening at 7.8cm to "fix it"?

doctor never did. that's why i'm ebarrassed.
and your scenario should be performed after the measures were done which doctor never did.



did you do surgery before? what about your case?

[hippo60]

doctor never did. that's why i'm ebarrassed.
and your scenario should be performed after the measures were done which doctor never did.

did you do surgery before? what about your case?

Sorry I'm not following. I understand you never did a full leg x-ray, but let's say you did before you started lengthening and there is a very small discrepancy. What you'd want to do with that information?

I lengthened my femurs 8cm and in consolidation right now. There is a very small discrepancy between the legs (which is common and perfectly fine) but my femurs are pretty much the same.

[lovinglonglegs]

Sorry I'm not following. I understand you never did a full leg x-ray, but let's say you did before you started lengthening and there is a very small discrepancy. What you'd want to do with that information?

I lengthened my femurs 8cm and in consolidation right now. There is a very small discrepancy between the legs (which is common and perfectly fine) but my femurs are pretty much the same.

did your doctor check overall leg lengths in your visits, each or before ending lengthening?

[hippo60]

did your doctor check overall leg lengths in your visits, each or before ending lengthening?

I already said I only did a full leg x-ray during consultation, afterwards it was femurs only.
And you didn't answer my question...

[EndGame]

I had overall total leg length measured by EOS scan for femur LL at consult. I was not checked for total length during lengthening just distraction of nails in my femurs until the very end.  A few mm discrepancy is more common than exactly even in the general population.  I had 4mm diff when I early consolidated one leg and was told I could keep the extra 4mm and just be done if I wanted. Hope everything works out well for you.