Quote from: tiggy on June 06, 2019, 10:54:50 PMHey guys, I've hit 22cm today and I'm having somewhat of an issue. Since yesterday the front portion of my right tibia has been getting numb. First it would appear when my leg was motionless for a few minutes, for example when sitting or laying on my stomach. Today it's been more frequent and the numbness extends to my knee if I don't shake off my leg and switch positions. I've contacted dr R and he advised that I slow down to 3 times a day. I'm very upset about this because it means the lengthening phase will be extended. My question for those LL veterans reading, have you experienced something similar and has the numbness subsided for you? If so what caused the numbness to go away? I'm just worried that if it doesn't go away after I drop down to 3 sessions a day, I may be forced to stop so as not to cause nerve damage. Any and all responses are welcome
Hi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary. I first became numb in the left and then in the right. These are superficial nerves that are being stretched out and hence are starting to feel numb. At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol). Other discomforts are at night time. Almost felt like tiny little explosions/tingling as the days would wear on. 2 months now, post lengthening, I have most feeling back in shins and it continues to improve. I would not worry about anything until you absolutely need to. When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order. You're good to go; but of course monitor closely. My main take away I want you to have from this post is to not worry about this. Most all CLL patients will experience numbness in at least one of their shins. It's something that you usually will push through and feeling comes back.
Let me know if you have any additional questions.
All the best,
IFS
Rozbruch- Internal Femurs with Stryde
Quote from: InFullStryde on June 06, 2019, 11:02:17 PMHi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary. I first became numb in the left and then in the right. These are superficial nerves that are being stretched out and hence are starting to feel numb. At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol). Other discomforts are at night time. Almost felt like tiny little explosions/tingling as the days would wear on. 2 months now, post lengthening, I have most feeling back in shins and it continues to improve. I would not worry about anything until you absolutely need to. When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order. You're good to go; but of course monitor closely. My main take away I want you to have from this post is to not worry about this. Most all CLL patients will experience numbness in at least one of their shins. It's something that you usually will push through and feeling comes back.
Let me know if you have any additional questions.
All the best,
IFS
Hey IFS,
Thank you so much for putting my mind at ease. Dr R said it sounds like a stretch on a sensory nerve and dropping down to 3 sessions a day usually resolves the problem. I really hope he is right because if numbness came on this early, dealing with it for another 2 months is going to be hell. Did you slow down your pace of lengthening after the numbness came on?
Hi Tiggy,
I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days. As a result, I would skip sessions here and there all the time. My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process. I even took as much as a day or two off in order to ease the pressure. If not for the 'breaks" I would have never gotten through to 3 inches. As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.
Quote from: InFullStryde on June 06, 2019, 11:43:02 PMHi Tiggy,
I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days. As a result, I would skip sessions here and there all the time. My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process. I even took as much as a day or two off in order to ease the pressure. If not for the 'breaks" I would have never gotten through to 3 inches. As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.
All of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!
Quote from: tiggy on June 07, 2019, 12:42:28 AMAll of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!
I understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th. :-)
Quote from: InFullStryde on June 07, 2019, 12:55:40 AMI understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th. :-)
Ah so you were almost in that 90 day span! Good to know, I'll keep that in mind. Thanks!
Hey,
Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet. I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.
Quote from: tiggy on June 10, 2019, 12:37:25 AMHey,
Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet. I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.
Hi tiggy
I think that is probably due to the extension of nerve. I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs. I don't know whether you did IT band release. If not, you may need to do that. If so, you just need to hang in there. Stretching, walking, and slow extension could help.
The thing is after lengthening done, this burning and numbness have been gone 
Stay strong!
Quote from: Ghostfish on June 10, 2019, 12:57:37 AMHi tiggy
I think that is probably due to the extension of nerve. I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs. I don't know whether you did IT band release. If not, you may need to do that. If so, you just need to hang in there. Stretching, walking, and slow extension could help.
The thing is after lengthening done, this burning and numbness have been gone
Stay strong!
Thanks for responding Ghostfish.
Yes I did have IT band release on both legs. It's good to know that your symptoms went away after you stopped lengthening. Do you recall how long after you stopped lengthening that they went away? Also, did you take anything for the pain while your symptoms lasted? If so, did that help you manage the situation?
Hi tiggy
I didn't take any special medicine for nerve pain other than oxycodone which doesn't really do much for nerve pain. The problem went away about one month after lengthening, perhaps a little longer. Other patients also did have similar pain or problem but they managed to finish lengthening. I am not 100% sure about your case, since I am not a doctor. So discuss it with Dr. R.
You must be logged in to post a reply.