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
in USA, he's a renowned surgeon.
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.
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
while i wasn't very satisfied with the way he responded, i can't say anything about him now till i see final outcome.
Quote from: EndGame on June 20, 2023, 12:18:38 PMAren'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?
Quote from: Marie_Bard on June 20, 2023, 05:47:23 PMThat'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
Quote from: KrP1 on June 20, 2023, 07:27:48 AMYou 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
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?
Quote from: EndGame on June 20, 2023, 07:47:02 PMSo how long ago was your last x-ray? How much of a discrepancy do you think you have?
last month, i think 8mm Quote from: hippo60 on June 20, 2023, 07:48:24 PMHe 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
can someone check this xray?
it shows that difference.
https://postimg.cc/gallery/vgSSgf1
not sure if i'm doing it right
Quote from: hippo60 on June 20, 2023, 10:32:29 PMWhat 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)
Quote from: GrowGrow123 on June 20, 2023, 11:27:38 PMDoesn'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).
Quote from: EndGame on June 20, 2023, 09:26:09 PMWhen 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
Quote from: EndGame on June 21, 2023, 12:18:19 PMOP, 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)
Quote from: hippo60 on June 21, 2023, 01:53:01 PMWhy 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.
Quote from: jerrytheman on June 21, 2023, 08:43:26 AMSimilar 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.
Quote from: Maison on June 21, 2023, 06:06:48 AMThe 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
Quote from: hippo60 on June 21, 2023, 03:40:38 PMWHY 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.
Quote from: hippo60 on June 21, 2023, 03:53:09 PMI 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?
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