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'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.
Stryde nails were withdrawn to study the lysis effects they were causing.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.
there's still people who did it before the recall
Quote from: Movie on June 19, 2021, 04:50:05 AMI 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.
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
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
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
Quote from: Movie on June 19, 2021, 07:34:42 AMthere's still people who did it before the recall
I know. What I was saying was, why don't you get yours removed now?
Quote from: Ahd1978 on June 19, 2021, 12:26:18 PMI 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)
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