Internal Femurs with Dr Baumgart / Fitbone

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Aturro,

Any update?? are you well?

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Hey guys...thanks yagen for checking in on me, very kind!
I wasn't online for quite a while. for no specific reason but I was always tired and sometimes in quite a pain. I basically abandoned everything and just tried to get through...

I stopped lengthening a week ago and basically very happy with the result. Thats the good part.
The bad part which is really bothering me at the moment is the nerve pain I got 4-5 weeks ago.
My whole upper leg burns like hell, and from time to time I get these electric shocks, especially at night.
I know that this is mentioned in the forum a couple of times but I am still kind of freaked out. 

It got worse during lengthening period but I kind of expected that...
what really drives me crazy now is that its not getting better since I have stopped lengthening and almost feels it got worse since then.

If anybody has some advice to cure this or reduce the symptoms it would be very very much appreciated!!

I wrote Baumgart a couple of days ago but he hasn't replied yet.
I found some articles online that say this could last for a long time. musicmaker wrote that it took 4-5 months for her. This would be really bad, I can't sleep at night and its basically a 24h pain, sometimes low and sometimes quite severe. Compared to the "normal" lengthening pain it feels worse to me. Not just because of the pain level but because it feels really strange and I can't find anything that helps. Guess its also the psychological effect not knowing if or when it gets better...

I always knew that a lot of things can go wrong with this surgery and stuff. Still I feel a bit unlucky that everything went so well and now just that I am done with almost everything after one year I have this weird pain all the time...

I will visit a neurologist next week, hope for the best...

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Hi Aturro

I am very sorry for you to suffer from the nerve pain even after finishing lengthening.  It sounds quite scary not to know when it gets better.  However, according to musicmaker's experience, eventually it will disappear.  I don't know what to say to cheer you up.  Just stay strong and hang in there.  Time will tell you everything!

Wish you the best of luck and the fast recovery!   

ps) Do you have any idea why the nerve pain happened?  Is that due to too much lengthening?  Or not enough PT?  Or a subtle mistake during the surgery?  Thanks for your post and update!

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Quote from: Aturro on April 06, 2016, 10:18:00 PMHey guys...thanks yagen for checking in on me, very kind!
I wasn't online for quite a while. for no specific reason but I was always tired and sometimes in quite a pain. I basically abandoned everything and just tried to get through...

I stopped lengthening a week ago and basically very happy with the result. Thats the good part.
The bad part which is really bothering me at the moment is the nerve pain I got 4-5 weeks ago.
My whole upper leg burns like hell, and from time to time I get these electric shocks, especially at night.
I know that this is mentioned in the forum a couple of times but I am still kind of freaked out. 

It got worse during lengthening period but I kind of expected that...
what really drives me crazy now is that its not getting better since I have stopped lengthening and almost feels it got worse since then.

If anybody has some advice to cure this or reduce the symptoms it would be very very much appreciated!!

I wrote Baumgart a couple of days ago but he hasn't replied yet.
I found some articles online that say this could last for a long time. musicmaker wrote that it took 4-5 months for her. This would be really bad, I can't sleep at night and its basically a 24h pain, sometimes low and sometimes quite severe. Compared to the "normal" lengthening pain it feels worse to me. Not just because of the pain level but because it feels really strange and I can't find anything that helps. Guess its also the psychological effect not knowing if or when it gets better...

I always knew that a lot of things can go wrong with this surgery and stuff. Still I feel a bit unlucky that everything went so well and now just that I am done with almost everything after one year I have this weird pain all the time...

I will visit a neurologist next week, hope for the best...


The good thing is you've quit lengthening, so now hopefully the nerve will have a chance to heal from the trauma.

Nerve pain usually responds best to special neuropathic pain medications, rather than just the general pain medications you're probably taking. I would go with:

1) Pregabalin 75 mg, 1-3 tabs twice daily
2) Gabapentin 300 mg, 1-3 tabs three times a day
3) Nortriptyline 10-50 mg at bedtime

Those are the best nerve pain medications. You can't take pregabalin with gabapentin (it's one or the other), but you can use either of them in combination with nortriptyline. Pregabalin tends to be a bit better than gabapentin for most.

Unfortunately there's not really usually anything besides continuing your physio that can be done to 'heal' the nerve which was irritated by the stretching process. You just have to treat the pain to quiet down the nerve and hope it heals. Make sure you're getting good nutrition of course as well.

Good luck and awesome to hear that things have otherwise gone well. I imagine this will go away over the next few weeks-months.

I will be curious to hear how your knees feel from the retrograde femoral insertion (insertion at the knees).

Thanks for sharing so far.

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Great job Aturro!! You have finished the worst part, Now you are in the next stage.........recovery time.

I had the same these electric shocks but of low intensity, for me it was like electoesstimaltion about 4,5 cms, you can feel it more at night, like you.

How I took off two weeks off after reach 5 cms, It went out in 3 days. Now that I am doing extra click I have not this problem.

All the patient say that you feel an improvement two weeks after stoping lengthening.

In order to prevent this sympthoms I take avery day Alanerv 

How is your flexibility now??

Good luck with neurologist, but I think you need a few weeks to let your body recover. Be positive!!

Cheers

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Thanks a lot for the help and good advice! @maximize @yagen

I got myself some "Pregabalin" today without consultation and some vitamin B pills. Will see how that works out. Otherwise I am cooling my skin which seems to relief some of the pain for some time.

Got a call from Baumgarts assistant today. He was very nice but didn't have any specific recommendation. He just told me to wait a couple of days and see if it gets better. He suggested to wait with taking any medication but I think I am not going to do that.

@ghostfish: thanks! the nerve pain is definitely due to the lengthening, not the surgery. Could be couple of reasons, I had more muscles in my left leg because I was basically only using that leg for almost 6 months. I might have stretched less or at least not enough before the second surgery. The sensor device in my leg might be putting some pressure on the nerves...or a combination of various factors...

Lengthening worked quite well actually until 4CM, better and faster than with my first leg (maybe too fast!?) after 4CM everything got very tight, my PT told me its good that I am almost done at that stage.
I had this numbness in my first leg as well, but it was just numb without any real pain (by the way, the skin on my right upper leg feels still a bit numb around my knee area after 6 months now...nerve damage really takes a long time, my PT told me that this light numbness could also stay forever)
That would be ok with me as long as this burning skin sensation fades.

@maximize: my knees feel good, no pain at all. But there is some crunching sound when I bend and stretch my leg. PT told me that this is normal as the muscles, patella and tendons need to adjust to the new situation....will see...

@yagen: I expected the pain to go away after a couple of days too, didn't happen unfortunately. Flexibility is around 90° maybe a bit more if I try hard. Not really concerned with that, guess it will eventually come back over the next couple of months...

long night ahead now...

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Sounds good Aturro. How did you get the pregabalin? Do they sell prescription drugs over the counter there or did you have another doctor to prescribe it to you?

You should take maximum 50-75 mg twice daily for the first week, then you can increase to 100-150 mg twice daily for the second week if tolerated.

I think the retrograde knee approach Baumgart champions is interesting. It certainly does give greater precision for control of the leg axis after lengthening. But the worry is of damage to the cartilage at the knee where the rod is reamed/inserted.

Baumgart seems like a really sharp guy so if he thinks it is worth it, it probably is.

I would trust your physio - they're used to dealing with this stuff and know what to worry about or not.

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taking Pregabalin 75g twice a day for 2 days now. It helps, especially at night. I managed to sleep for couple of hours which was nice. Got it from a friend who is a neurologist but I didn't personally visit him.
I guess that doesn't solve the problem but it helps to wait until it gets better...

Sometimes I get the feeling it might be the sensor that causes this heavy nerve pain...will see...going to Baumgart tomorrow.

I am not an expert on this knee issue, I basically just trust Prof Baumgart with this. He is really a perfectionist and extremely cautious.

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Most likely you are getting nerve pain from stretching of the nerve itself associated with lengthening. Did it come on slowly as you lengthened (eg. progressively over the span of 1-3 weeks)? Or did you just wake up with it one day?

Nerves can stretch but it is slow. Over time, the nerve should lengthen, relieving the stress on it and decreasing the pain signals you're getting now due to that stress.

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Monegals patients had that problem too. In some cases it subsided and in other cases it's still a problem perhaps a permanent problem. LL comes with these side effects