Print

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

[Movie]

I want to address something that hasn't officially been addressed specifically, but after a lot of conversations with different fellow CLLers, a lot of us experienced what I've come to name "1 year post-op hell" which is pretty much self explanatory ... around the 1 year post op mark +-1 or 2 months I experienced excruciating pain in my knees, one week my right knee and femur would be on fire and pains up to 9/10, the next week my left would shoot up in pain. this lasted about a month or so, the pains still come sometimes if I exercise but nothing to complain about.

this is for Stryde nail femur patients not sure if other nails have this or if tibia procedures have this phenomenon.

Anybody else experienced this? if so care to share for other newer CLLers?

[BelowTheMean]

I'm not at the one-year mark yet, but sometimes I have strong pain right above my right knee when I put weight on it. When it happens it lasts for a good 2-3 days and I have to limp to even be able to walk since it hurts to bear weight on that leg. I did not have this issue during lengthening or right after starting consolidation.

[Want-3-inches]

Stryde nails were withdrawn to study the lysis effects they were causing. Then it was determined that the effects are real and concerning and they decided to work on a modified version of it. You still have your nails in. Your first priority should be to get them out if your bones are completely healed. Any introspection now doesn't make much sense to me.

[Movie]

there's still people who did it before the recall

[tallmen]

I want to address something that hasn't officially been addressed specifically, but after a lot of conversations with different fellow CLLers, a lot of us experienced what I've come to name "1 year post-op hell" which is pretty much self explanatory ... around the 1 year post op mark +-1 or 2 months I experienced excruciating pain in my knees, one week my right knee and femur would be on fire and pains up to 9/10, the next week my left would shoot up in pain. this lasted about a month or so, the pains still come sometimes if I exercise but nothing to complain about.

this is for Stryde nail femur patients not sure if other nails have this or if tibia procedures have this phenomenon.

Anybody else experienced this? if so care to share for other newer CLLers?

I haven't had the surgery yet still I get bad pain in my legs sometimes randomly. There's no reason for it it just happens.

[Ahd1978]

Hey guys I’m in 5 th month

But yes I get shooting nerve pain like a fire in left leg

I also get severe knee pain right above as you all have mentioned and it lasts for few days

Didn’t happen during distraction this knee pain but yeah it is painful

I truly wonder if this will continue post removal of nail or is this life long cost for all of us

[more]

1. Iliotibial band syndrome (Tightness because of lengthening) and unnecessarily Iliotibial band lengthening (Incision)
2. discrepancy
3. walking one-sided
These are the most causes of knee pain.

Rests are :  muscles weakness. misalignment  and overuse of knee specially bicycle during lengthening period

[Ahd1978]

Thanks movie

Mine started when I went back to swimming and realize legs aren’t ready

Since then have stopped swimming

Just up and down stairs and try to balance as much

You are right as some days knee pain shifts from right to left

Does it eventually go away ?

Btw this vascular adjustment within body did anyone experience that

Maybe I’m 43 and taking longer for new legs to adjust now

I started at 177 and now I’m at 185 so it is serious height

[Want-3-inches]

there's still people who did it before the recall

I know. What I was saying was, why don't you get yours removed now?

[PerfectBody]

I started at 177 and now I’m at 185 so it is serious height

Holy sh*t man, that's a very huge jump and also at a rather old age compared to to the average CLL'er (25)

[Ahd1978]

That’s why I’m bit worried

But dr. Paley had said vascular system adapts

I mean he has lengthened patients upto 16 cm and all are fine

I mean I survived fat embolism and also blood clot scare so I’m pretty deep into it.

Just exhausted and now want body to adapt and enjoy the new height

I wonder if I remove nails sooner would it help and just be on crutches

[5ft5]

I haven't had the surgery yet still I get bad pain in my legs sometimes randomly. There's no reason for it it just happens.

Lmao. This is exactly what I'm talking about. Sometimes it's nerve pain around the knee and sometimes just a random sharp pain and lasts for 2-3 days. That's why tibias are a big no-no. I could only imagine the pain waiting for me when I go through the surgery a few years down the line along with the accumulated problems I have.

[Movie]

overandover: If you have pains like that already then expect them to be worse after LL if you do it, I never experienced those types of pains until after CLL

ahd1978: Yes early consolidations come with its pains, the body is healing and adjusting still, give it some time you should be soaring pain free around month 6-7 up until month 11-12 when you might encounter this 1 year post op hell, that left me almost crying and I'm very pain tolerant.

more: yup I researched and found those same answers, it varies with everyone.

want-3-inches: It's rare that someone gets their rods removed before the 1 year post op mark, I've only seen that once, SNC. Most people might experience this 1 year post op phase of crippling pain. to answer your question, Covid is the reason I haven't removed my nails yet.

[Ahd1978]

Thanks movie

Looking forward to that pain free 7 month

I’m sorry for your post op 1 year pain. What did the doc have to say ? Is it nails or it just happens


There must be an explanations. I have watched diaries on victors Website of patients having done femur and tibia and no one mentions this pain

Thanks again for advice

[Movie]

I'm way past the 1 year post op pains, Dr. Mahboubian said that my body is still adjusting 1 year post op that pains are still normal.

Yeah I wouldn't ever hear of this 1 year post op pains. but when I mentioned it in my diary at least 4 other Stryde patients mentioned they had pain 11 months post-op, 1 year post op ETC around the 1 year mark and it lasted a couple weeks, pretty bad pains too.

[TheAlchemist]

Sending positive vibes and well wishes your way Movie. Around my 1 year op anniversary I'd get random shooting pains above my knee just a handful of times. In my case the most unfortunate residual outcome of this is numbness in my left shin that I still have till this day. Hopefully rod removal has a positive impact for both of us.

[c]

顺利

[BetzLandLiberator]

I want to address something that hasn't officially been addressed specifically, but after a lot of conversations with different fellow CLLers, a lot of us experienced what I've come to name "1 year post-op hell" which is pretty much self explanatory ... around the 1 year post op mark +-1 or 2 months I experienced excruciating pain in my knees, one week my right knee and femur would be on fire and pains up to 9/10, the next week my left would shoot up in pain. this lasted about a month or so, the pains still come sometimes if I exercise but nothing to complain about.

this is for Stryde nail femur patients not sure if other nails have this or if tibia procedures have this phenomenon.

Anybody else experienced this? if so care to share for other newer CLLers?

Interesting. That didn't happen with me after my Betzbone LL (10cm on the right, 9cm on the left) I only left my crutches 10 months after the OP. So when I reached one year post op was actually recovering pretty well, no pain at all. My excruciating pain happened during lengthening,

[6CMFemurs]

This is interesting, I actually too started having random soreness in my hips at almost exactly the one-year mark.

[Ahd1978]

What are chances I have the nails removed within the year and be on crutches to avoid additional weight bearing

Atleast this way the nails r out of body

Maybe this pain is due to the nails

[AimHigh]

I did 8cm L.Femur Precice 2.2 about 3 years ago now, as I sit here the top of my knee is sore and twitching, some days are better than others, and the pattern to this is hard to dicern,. I hope this is not a lifelong annoyance. I can still function ok , but I do get tired more easily than before and my Anterior Frontalis (both legs) is very prone to getting tight and sore allmost any time i walk up an incline for over 20 meters.

[Siegfried]

I did 8cm L.Femur Precice 2.2 about 3 years ago now, as I sit here the top of my knee is sore and twitching, some days are better than others, and the pattern to this is hard to dicern,. I hope this is not a lifelong annoyance. I can still function ok , but I do get tired more easily than before and my Anterior Frontalis (both legs) is very prone to getting tight and sore allmost any time i walk up an incline for over 20 meters.

Don’t you have an leg length discreptancy of 2-3cm? For all we know, that could be the sole reason for your complications. In addition you were in your 50s when you did the surgery. Both not exactly optimal for LL. so I don’t think your situation applies to the case movie has described.

[5ft5]

In hindsight, so many people coming forward with lingering knee/pain problems post-CLL is really concerning. This goes against the claim that there are no complications from this surgery claimed by Paley and the other doctors. Has anybody tried stem cell therapy or any similar treatments to get rid of the pain? Would really like to know.

[V21]

It can also be due to the corrosion with Stryde. The nail should go out as soon as possible.

[5ft5]

It can also be due to the corrosion with Stryde. The nail should go out as soon as possible.

The nails are only taken out when your bones have fully healed though right? That would take at least 1 year in that case.

[Medium Drink Of Water]

Sometimes the lengthening nails get swapped for fixed nails before consolidation is finished.

[Ronman]

In hindsight, so many people coming forward with lingering knee/pain problems post-CLL is really concerning. This goes against the claim that there are no complications from this surgery claimed by Paley and the other doctors. Has anybody tried stem cell therapy or any similar treatments to get rid of the pain? Would really like to know.

From what I see in this thread everybody here did around 8cm.

The general consensus on this forum seems to be that over 6cm is risky.

[dreamingtall]

Hi Movie... Just clarifying if you meant that this "Post OP Hell" only lasts a couple weeks?

Also question for the group...is it possible that another Dr. could remove the nails and have it covered by insurance? The greed of these doctors really frustrates me at times.

[5ft5]

From what I see in this thread everybody here did around 8cm.

The general consensus on this forum seems to be that over 6cm is risky.

I hear the last 2cm hurts like a bitch.

[Movie]

In hindsight, so many people coming forward with lingering knee/pain problems post-CLL is really concerning. This goes against the claim that there are no complications from this surgery claimed by Paley and the other doctors. Has anybody tried stem cell therapy or any similar treatments to get rid of the pain? Would really like to know.

That's what comes with breaking a bone, I know a lot of people who had fractures and had them repaired normally and will still feel some pains sometimes, my girlfriend for example fractured her elbow and in rare occasions it'll hurt.

dreamigtall: It lasted a couple weeks for some, for me it lasted the better part of a month. some people went that route yes.

[dreamingtall]

Movie do you have any remaining neurosis or are you pretty confident where you are now??