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[axelf]

Hey Aturro,

hope you are doing fine.


As I intend to go with one leg at a time, let me ask you a question:

My plan is to do first leg, then rest for a month and return to an office job for 3 days a week while lengthening up to ~6cm. I'd have to get there via metro.
Do you think that this is possible?

[Aturro]

Hey axelf,
Yes I think an Office Job should be possible after 4-5 weeks.
For me the Major issue would be that I need to elevate my leg after 30 Minutes otherwise I get pain in my knee.
If I could work in a comfortable position it would be ok. I couldnt do more than 5-6 hours though.

Metro Ride could be a bit exhausting, depends on the duration.


So all in all its manageable I guess.

[Aturro]

Hi guys, my last entry was over a month ago mainly because nothing spectacular happened...which is obviously good news.

I am roughly at 5.7CM according to the latest xray. going for 7CM so I still have 2 weeks to go.
Pain is ok but got worse after reaching 4CM. apart from that the lengthening itself got more difficult, the device didn't work as well, probably because of the increased tension. So instead of 3 times I am doing 4 times lengthening every day now. This gets me to .8 or .9 mm per day.

Good news is that my bone heals quite fast so recovery could work better and faster according to the Prof.
Weird feeling to walk around with one leg being 6CM longer than the other...the special shoe looks stupid too...but thats my least concern for the moment.

bad news is that I got numbness in my upper leg around my knee (in addition to the numbness in my lower leg which I´ve already had after the surgery) It just started a week ago. I hope its from the lengthening and the nerves will recover later...otherwise it would be a big setback. hope its gonna be fine.

daily routine is all the same, try to sleep as long as possible, go to PT, sleep during the day, watch TV, etc. Problem is that after an hour sitting the pain is very bad and I need to lie down. So going out to cinema or long dinner is not possible for me. I am really looking forward to finishing the lengthening. my PT told me that the pain stops immediately after that...

sometimes I am really happy and glad that I´ve taken this path, other times I think about the second surgery next year, the remaining effort and pain and it gets the better of me. Not being at home, not having a job and no friends around....its tough. As I said some time ago, the physical effort to me is much less than the mental one.

I try to imagine the day when all this is done here and I can start living a normal and hopefully better life again...

[Aturro]

best news is I am done with Leg 1! really happy I made it!
stopped lengthening on Friday and its great to spend a day without any need for the lengthening device...and without medication

According to xray I gained around 7CM on my right leg, so roughly 6 - 6.2 CM real height. I am very satisfied with that right now.
I started on June 28th, so it took me 91 days to get there, around .7 mm per day. Thats quite low, could have lengthened more per day I guess but at least it was a bit easier that way.

I have to admit the last 2 weeks were a tester for me, especially morally. Loneliness plus the handicap were hard to bear and my apartment started to feel like a prison cell...

I try to be more active now in the upcoming days. Go swimming, work out and do more PT on my own to improve bending level.
I was a bit lazy and didn't work enough on that so I am still below 90° and muscles are still very tight.

Stopped taking medication. Problem is that I got used to Tramadol 100mg per day, couldn't take the Novalgin, as my body didn't tolerate it.
The tramadol worked great but last night I felt some signs of withdrawal symptoms, shivering and general discomfort which is hard to explain. I expect that it gets better from day to day now...
I think 100mg per day is ok but I am glad I didn't take more. even better if you can avoid it completely...

Thats it for the moment, X-rays will be every 3 weeks now. Its all about bone healing now...before I take on my other leg of course...but thats a long way to go...

[ouroboros]

Congratulations on reaching your goal! 
I'm curious about two stage lengthening and what it's like.....having to wear that silly shoe with the lift, etc.

I don't know if it's been mentioned before but it might be a good idea not to strengthen your good leg too much before your get your second surgery.....excessive walking might build your muscles on that leg since it's carrying almost your entire body weight.       

all the best

[Aturro]

thanks ouroboros!

the lift shoe definitely looks stupid. In my case is somewhat ok, I have 4CM outside lift and 2CM inside the shoe. I chose a black Reebook with black sole so you wouldn't notice immediately. I´v seen people walking with much higher lifts and then it starts to look really odd.
If I go to a proper restaurant or bar which I rarely do, I don't wear the lifts at all. Just normal shoes and walking on my crutches...

I was lying in my bed last night trying to fall asleep and then I imagined how it would feel to have the same discomfort and stiffness in my other leg too. It would be much worse I guess so for me the two stage procedure was definitely the better choice.
It goes from being a more physical to a more physiological effort, less pain but much longer timeframe of course...
If the nail would be full weight bearing I might have gone with a simultaneous lengthening though.

I agree with you that you shouldn't build heavy muscles before the surgery but compared to my pre surgery status I am still below my normal muscle mass in my healthy leg. Since you lose a lot during the months after surgery I think its better to have average or slightly above average muscle mass.
What I am concerned is now how my lengthened leg will look like before I have the second surgery. I definitely need more strength there...

[glenn]

Hi Aturro,

Glad to know things are going well for you as well. A few questions:

According to xray I gained around 7CM on my right leg, so roughly 6 - 6.2 CM real height. I am very satisfied with that right now.

So, X-ray says 7cm and you think it's actually 6 to 6.2cm. Are you saying that x-ray discrepancy can be upwards of 12%? So for example, if another x-ray for another person shows 3.5cm then we can only assume it is 3 to 3.1 cm in reality? If you count the number of times you used the distraction machine, how many CM is according to those records?

I guess what I am asking is, how much should one discount the data to guess the actual amount?

I try to be more active now in the upcoming days. Go swimming, work out and do more PT on my own to improve bending level.

When you say swimming, are you able to do the breastroke or freestyle? Or do you mean walking inside the pool?

Thanks for answering the questions, and good luck on the next phase of your journey!

Glenn

[Aturro]

Hi glenn,

Thanks again;)

Baumgart told me that I need to do 7CM on xray to be surely at or above 6CM in real height.
Two factors: xray has an optical magnification effect of around 8-10% and if the gap is eg 6.3 the real increase in height is a few millimeters less...so yes, 10-12% is a conservative but reasonable Discount I am told...

Maybe it is only 8% in the end but rather be on the safe

I tried freestyle and that works fine for me. I can do that almost without using my legs at all
But I did quite a lot of swimming in the past, so I am used to that...
Breaststrokes are impossible.

Sleeping seems already a bit easier, also because the side effects of the medication are starting to dissapear

All the best

[axelf]

hey aturro!!!

how is it going? please update

[LLuser1]

Is Fitbone accurate in your opinion? Some patients say it isn't.

[Aturro]

Hi guys, its been a while since I´ve been online and I just started to read through the diaries of what happened to all of you.
I haven't seen any horror stories so I guess everyone is doing fairly well...

On my side nothing spectacular happened so I spared you any boring updates in the meantime.
very briefly, I started walking without crutches beginning of December which was a really nice feeling. Especially because people started to mention my new height and how tall I am now etc. it seems the crutches distract people from realizing the height difference, probably because you never stand fully upright or they just feel pity for you.
anyway I very much enjoy my new height, except the stupid shoe I have to wear currently.

Speaking of which I have my second surgery later this month on the 27th. Not looking forward to that date though. I still remember the time in the hospital and the first two weeks after surgery. They were really tough but at least I know that it gets better pretty soon afterwards...
The flexibility and stability of my operated leg is ok but not that great so I assume I will be even more handicapped compared to last time.

For the moment its just stretching and pre-organising my life before the show starts again...

Hope you are doing fine and stay strong!

[Aturro]

hi LLuser, what I can tell you is that the amount you should have lengthened according to the device compared to the real lengthening can vary a lot. So the only way to be sure is to have weekly x-rays done and adjust the "clicks" accordingly. I had to increase from 3 to 4 times a days once the muscle tension got stronger after 4CM and the real lengthening started to decrease by almost 50%...pretty annoying if you don't notice since you start losing a lot of time...but otherwise its not a big deal I think...

[axelf]

hey,


great to hear from you again. I sent you a new private message in response to yours!
good luck for the surgery number two!

[Aturro]

So this is it, finally.
I am back at the hospital in Munich, just took my sleeping pill and tomorrow morning I will have my second surgery.

Its a bit weird and different to last time. At the first time I had no idea what to expect and I was worried a lot about the upcoming months, especially what to tell my family and friends.
Now this is not an issue anymore but this time, I know exactly what to expect, and its not pleasant. The first couple of days were really rough for me physically.
And this time I don't even have one fully functional leg, curious how that will work out...

No way back now, and I am happy to get it over with. Hope everything will be fine and I can move my leg when I wake up later.
Baumgarts assistant doc visited me in the hospital today, he is really a very nice guy. and quite relaxed too.

will send an update once I am able to do that again, happy to answer any questions you might have...

cheers

[axelf]

hey aturro

good luck for your big day tomorrow!

[yagen]

Keep on figthing aturro!!! Just tree bad days
 Cheers

[Aturro]

thanks axelf and yagen!

Had my surgery yesterday and everything went well, very happy about that!
Pain level is much lower than last time, I am wondering why. Maybe it the physiological effect but I have the feeling that the surgery went bit smoother too. And its ten degrees outside instead of 35 last summer, that was horrible.

I am taking Paracetamol now instead of Novalgin, my body seems to cope better this way.

so all in all I am really satisfied and relieved. Couple of rough nights ahead but I think I can handle that pretty well.
It really helps to have all the experience from the previous surgery.
Will put together a list of recommendations that I think make quite a difference if you undergo this whole thing.

[Ozymandias]

Will put together a list of recommendations that I think make quite a difference if you undergo this whole thing.

It would be very much appreciated!

[yagen]

how are you, Aturro??

 

[yagen]

Aturro,

Any update?? are you well?

[Aturro]

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...

[Ghostfish]

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!

[maximize]

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...

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.

[yagen]

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

[Aturro]

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...

[maximize]

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.

[Aturro]

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.

[maximize]

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.

[Lgazer]

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

[Aturro]

I hope it won't be a permanent problem, that would ruin the whole effort

the pain came gradually over the last 2 weeks of lengthening. I think it got worse because I lengthened quite fast the last couple of days. I should have paused but wanted to get over with it. that was a mistake.

Baumgart is totally relaxed, told me today that I should just wait and the pain will subside. Thats not really helpful but I guess I need to be patient now. The Pregabalin helps to get through the days...but no improvement at all so far...

 

[AimHigh]

Hi Aturro,
I had 5.7 cm RFemur lengthening with fitbone mid march 2015 - strangely it was the front of my Right lower limb (prob 150 cm2 area) that initially (2-3 months) felt "on Fire", and later over the last year has slowly subsided to a somtetimes annoying/distracting "itchy" feeling. I am pretty good now (no drugs), but it is still there in the background and can flair up (but not to bad).
Initially (first two months) I tried Pregabilin (150 mg/day) - this did help a bit.
I hope your pain also fades.