Plzen's journey Precice II , bilateral femurs (South Africa, Dr. Birkholtz)

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1.2cm
Muscle cramps:
One thing that has been lately bothering me is muscle cramps right after distraction. It started last week when I reached 5mm. I was distracting 1mm at one sitting. The cramps were so bad that I wanted to scream and sometimes I would scream.
On Friday, the nurse changed the machine sitting to 0.5mm and I have been doing 0.5mm twice a day. Cramping is better but still there. I distracted  (0.5mm)about 2.5 hours ago and my left leg is still having some cramps and discomfort (left leg is my bad leg).
Any suggestions from the LL veterans?

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Quote from: Plzen on November 30, 2014, 04:20:18 PM1.2cm
Muscle cramps:
One thing that has been lately bothering me is muscle cramps right after distraction. It started last week when I reached 5mm. I was distracting 1mm at one sitting. The cramps were so bad that I wanted to scream and sometimes I would scream.
On Friday, the nurse changed the machine sitting to 0.5mm and I have been doing 0.5mm twice a day. Cramping is better but still there. I distracted  (0.5mm)about 2.5 hours ago and my left leg is still having some cramps and discomfort (left leg is my bad leg).
Any suggestions from the LL veterans?
I had the worst pain around 0.5-1cm mark right after distraction. I remember it would linger for several hours and painkillers did not work. After that I divided my distraction twice daily. Dr.B did mention that the pain would be worst around that point but I forgot the reason why. I think it's something related to muscle and bone elasticity or memory, sorry can't really remember. But the pain gradually improved and became non-existent after 2cm. And I went back to 1mm in one session.
Maybe you could divide your distraction to 0.25 4 times daily. That should decrease your pain.   

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Thank you TRS,
That is really good news. I hope the same happens to me (distraction pain diminishes after 2cm mark).

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What on earth? You're doing two .5mm sessions and started at 1mm ones? I always did four 0.25 session and had no pain right after. However when I did 2 mm(1 mm one after the other) it was excruciating pain.

It is insane that they are having you do it in sessions like that. Lengthening itself should be the easiest part of this, and lack of pain is one of the advantages of precice.

My advice is to insist on changing to that four session structure- I can promise a big difference. Also get on their back about those PT sessions.

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Thank you Programdude for your helpful input.
I will discuss with them. Right now my main concern is the reduction in Physical Therapy.

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Update 1.3cm
I am having a lot of muscle cramps today. Lengthened twice 0.5mm each times today. Last I lengthened was about 4 hours ago, but I am still very uncomfortable.
 
I did not want to bring up the issue of distraction rate (reducing it 0.25mm 4 times per day) today because I still haven't heard about getting my PT days back. I wanted to focus on that issue first.
Tomorrow I want to bring up the issue of both getting back my full PT days, and changing the distraction rate.

Today I had a different Physical therapist, and she was disappointed with some of my range of motions. She uncovered many weaknesses, both in terms of strength and flexibility.
So overall no good news yet, but I am hopeful and determined to improve my range of motion, once I deal with these terrible cramps.

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I know its not your fault, but thats exactly why you should have gotten full PT and why what they did is outrageous. Once you fall behind things can catch up fast.

Hope they resolve this asap since this speaks very poorly of their setup.

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Quote from: Plzen on December 01, 2014, 07:33:42 PMUpdate 1.3cm
I am having a lot of muscle cramps today. Lengthened twice 0.5mm each times today. Last I lengthened was about 4 hours ago, but I am still very uncomfortable.
 
I did not want to bring up the issue of distraction rate (reducing it 0.25mm 4 times per day) today because I still haven't heard about getting my PT days back. I wanted to focus on that issue first.
Tomorrow I want to bring up the issue of both getting back my full PT days, and changing the distraction rate.

Today I had a different Physical therapist, and she was disappointed with some of my range of motions. She uncovered many weaknesses, both in terms of strength and flexibility.
So overall no good news yet, but I am hopeful and determined to improve my range of motion, once I deal with these terrible cramps.
You can adjust the distraction rate to 0.25 by yourself. If you're uncomfortable with adjusting the ERC device then inform them asap because it seems that 0.5 is too much for you. I know the other LL'er faced difficulties with that amount and most diaries indicate that dividing the distraction to 4 times is less painful. I was able to distract 0.5mm and then adjusted back to 1mm in one session without any pain after 2cm so individual variation does apply when it comes to distraction.
I had physiotherapy every weekday but the sessions alternated from 1/2 hour to 1 hour plus the extra bike for 1/2 hour - 1 hour at the clinic without any charge. This worked out fine for me and the other LL'er.
Hope things do get sorted out asap.

   

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1.4cm
Crampings/pain much better. I changed the ERC sitting to 0.25mm, which I am doing 4 times per day. It makes a huge difference. Thank you programdude and therisingshorty.  I have cramps in my left leg for about 5 minutes after each distraction  (as opposed to 4-5 hours). I am hoping that will get even better because right now my legs are sore from last weeks distraction, so even minor discomfort upset them.

About Physical therapy- I was supposed to be only biking (stationary) today, I explained the situation to the PT boss, and he was nice enough to let me have PT today(just a one time thing). I don't know whether I will get all my PT days back or not. Hopefully, I will find out soon. I will be very upset if I don't get the daily PT, which I have already paid for.

I find it frustrating to wait for the decision about my PT days, when it clearly says in the package "75 days of daily PT included", and I have already paid the full package price.

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Quote from: Plzen on December 02, 2014, 04:39:34 PM1.4cm
Crampings/pain much better. I changed the ERC sitting to 0.25mm, which I am doing 4 times per day. It makes a huge difference. Thank you programdude and therisingshorty.  I have cramps in my left leg for about 5 minutes after each distraction  (as opposed to 4-5 hours). I am hoping that will get even better because right now my legs are sore from last weeks distraction, so even minor discomfort upset them.

About Physical therapy- I was supposed to be only biking (stationary) today, I explained the situation to the PT boss, and he was nice enough to let me have PT today(just a one time thing). I don't know whether I will get all my PT days back or not. Hopefully, I will find out soon. I will be very upset if I don't get the daily PT, which I have already paid for.

I find it frustrating to wait for the decision about my PT days, when it clearly says in the package "75 days of daily PT included", and I have already paid the full package price.

Glad to hear that your pain has decreased. This pain may have been the most likely cause for decreased ROM and tightness. Pain did reduce my ROM at times but got better when the pain settled down.
Anyway, I hope they do sort out the physio asap.