Hi SLM
Good to hear your updates! You are doing great! I saw a patient with Stryde tibia and he was able to walk with a cane about 3-4 weeks. Since then, he was able to continue to walk with or sometimes without a cane until the end of lengthening. Now you are roughly at 4 weeks, if I am correct. So you have made a good progress! Walking with crutches is also a good idea especially in public or at work, since your posture is not stable. But when it is safe, try to walk with a cane as much as you can.
As for the pain, as you know, CLL always brings pain and most of patients have a bad leg and a good leg. I also have the right leg as a bad one. But it will get better. I think taking oxy when needed, it is not a bad idea. Most of time people tend to be overcautious about oxy for addiction. But with this low dose and limited amount of oxy, it is very unlikely to get addicted to oxy. So don't feel too bad when you need to take it. You can gradually reduce dose or increase interval and will eventually run out of oxy prescription anyway.
By the way, I admire you that you are going back to work soon. That really requires courage and strong will. You are a true warrior!
Good luck!
SLM Stryde Internal Tibia with Dr. Rozbruch March 2019
Quote from: ShortLivesMatter on April 03, 2019, 02:46:25 AMSo I have made some pretty nice improvements since the last update. I am now walking confidently on crutches. I was able to stand up from my bed without any support and took a few steps unaided today. I have another week before I return to work so need to get my strength back. I will most probably use crutches when I do return as I am terrified of someone bumping into me and even a slight breeze will probably make me fall over.
Unfortunately all is not well, the sharp shooting pain on my left leg is still present and comes and goes throughout the day but is most prevalent at night when I'm trying to sleep. The only way to alleviate it is taking an oxy which I'm trying to stop but it's near impossible. Hopefully it will get better soon.
The left leg has been my Nemesis leg to this day! Carry on SLM, as you know as a CLL veteren...it gets better. Good idea on crutches. Believe it or not; I've been sporting the crutches for 3 months. You're ahead of the game.
Will stand by to hear and learn more. Have a good night.
Hi SLM,
Thank you for this diary and good luck with your journey! While IFS's diary has been excellent and very informative, it never hurts to read another diary of STRYDE and especially with Dr. R with whom I will be having surgery next month as well.
I've read in other diaries of people taking pain killers with a Tylenol pm at night time to help them sleep, and this appears to have worked well. Perhaps you can give it a try as well.
Since you had your femur surgery already and with PRECISE, can you compare the pain levels between them? Which would you say was more painful so far and why?
Honestly pain is a very big concern of mine and frankly I am a little terrified of how bad it could get. Those shooting pains in your leg, can you put a number on them on a scale from 1-10 just to give us an idea? And perhaps the same for the pain in the mornings when you wake up with your legs locked?
Lastly if you have any recommendations or advice for pain management, please kindly send it forward. We all would greatly appreciate it!
Yeah I am taking tylenol pm and and oxy at night now and it is helping with the sleep but I still wake up in the morning in pain, mostly on my left leg. The sharp pains in my left leg I would say is about an 8 on the pain scale. In the morning it's probably a 6. The tibia surgery has definitely been more painful as there were two bones broken instead of just one like in the femur so you have 2 pain sites to deal with.
As for an update, it's been almost 4 weeks since the surgery, I have lengthened about 1.5cm and am now walking around the house without any support, slowly of course but it feels great. My hips do sway when I walk so I need to work on that but it's not that bad.
Thanks for your prompt reply. I am very happy to hear you are walking without any support in only 4 weeks man. Keep up the great work!
Just couple more questions from me. When you take oxy for that shooting pain, how much does the pain drop from the 8 level pain?
Also, you just said its been a month since surgery and you have lengthened 1.5cm. I don't remember exactly what dr. R said about the timeline of lengthening and please correct me if my measurement time scale is off, but I believe he told me within 3 months patients reach about 3 inches. If this is correct, your lengthening seems to be slightly behind, as it should be closer to 2.5cm right about now. Are you lengthening .8mm every day or have you taken breaks in between?
Quote from: tiggy on April 05, 2019, 11:25:02 PMThanks for your prompt reply. I am very happy to hear you are walking without any support in only 4 weeks man. Keep up the great work!
Just couple more questions from me. When you take oxy for that shooting pain, how much does the pain drop from the 8 level pain?
Also, you just said its been a month since surgery and you have lengthened 1.5cm. I don't remember exactly what dr. R said about the timeline of lengthening and please correct me if my measurement time scale is off, but I believe he told me within 3 months patients reach about 3 inches. If this is correct, your lengthening seems to be slightly behind, as it should be closer to 2.5cm right about now. Are you lengthening .8mm every day or have you taken breaks in between?
Hi tiggy
Regarding your question, normally you need to wait for a week after the surgery to start lengthening. General rate for tibia lengthening is 0.75mm a day. 4 weeks = 1 week after the surgery (0 mm) + 3 weeks x 7 days x 0.75mm = 1.575 cm.
You are on 4th week of surgery and yet have so much pain?
Quote from: Ghostfish on April 06, 2019, 06:53:21 AMHi tiggy
Regarding your question, normally you need to wait for a week after the surgery to start lengthening. General rate for tibia lengthening is 0.75mm a day. 4 weeks = 1 week after the surgery (0 mm) + 3 weeks x 7 days x 0.75mm = 1.575 cm.
Actually no, dr. R has his patients start lengthening 3 days after surgery (so on the 4th day from what I remember from my consultation). But this applies to the femurs, not sure if tibias are different, and I doubt they are.
Quote from: tiggy on April 06, 2019, 07:25:22 PMActually no, dr. R has his patients start lengthening 3 days after surgery (so on the 4th day from what I remember from my consultation). But this applies to the femurs, not sure if tibias are different, and I doubt they are.
I was instructed to start lengthening a week after the surgery so GhostFish's calculation is right. Started on the 18th of March, today is the 6th of April so that's 20 days * .8mm per day = 1.6 cm now
Quote from: wannagrowtaller on April 06, 2019, 04:26:31 PMYou are on 4th week of surgery and yet have so much pain?
No, most of the time my pain level is 2-3. It's just at times i experience the sharp pain that's like a 7-8 but it's gotten a little better in the past couple of days.
You must be logged in to post a reply.