Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Aturro on May 08, 2015, 09:48:29 PM
-
Hi everyone,
I just signed up for this forum as I am going to have my LL in about 6 weeks in Munich with Dr Baumgart. I planned to post my experiences here if that is of interest for the community. And of course I am looking for tips from people who have already gone through the process themselves...
I start with right femur with a target of 5-6 CM, left leg will probably only follow after healing process is completed.
My starting height is about 175CM, target 180CM. LL with Fitbone.
I have been thinking of having LL done for almost 7 years now and its now or never for me at the moment. Not an easy decision and I am pretty nervous, not so much about the surgery itself as for the time thereafter. I haven't told anybody, especially not my parents so that will be quite a discussion.
I´m keen to hear about your experiences, especially what to do for preparation besides stretching obviously.
Tough weeks coming up...will keep you updated.
All the best to all of you!
M.M.
-
I wish you all the best Aturro! Please keep us updated. Your initial height is pretty nice IMO so 5-6 gain only should be an easy task :P
btw, I don't see anyone doing bilateral Fitbone (one stage). I'm considering Fitbone also but I simply cannot do a two stage procedure :(
-
How much will you pay for the surgery? I've heard that he is the most expensive Dr. off all who offer CLL.
-
It will definitely be quite expensive. Costs for surgery, hospital, consultations, etc. will be approx EUR 90k plus any unexpected costs.
On top I expect around 3-4k for physio and I need to pay for apartment in Munich which is insanely expensive too.
So all in I guess around 110k...
-
Why didn't you go with someone like Guichet or Paley then?
-
Yeah. Why did you choose baungart over other doctors?
-
couple of reasons: I met with Dr. Betz couple of years ago. He made a good impression and its nice to have a full weight bearing device from day 1. however the clicking and the potential pain made me shy away.
I am by far not an expert on surgical techniques etc. myself but from my feeling and what I heard from others the fitbone and the technique Prof Baumgart is using, is a very delicate one with hopefully the least physically demanding postsurgical effects. (Fitbone is not inserted via hip area etc.) As I am aiming from 5-6CM I don't really need the Albizia which can go a lot further I guess...If I find out more from my pre surgery meeting I will let you know.
Apart from that I prefer staying in Munich which is not that far from my home town and trying to have a "normal" life, maybe working a little bit and be physically but also socially active as much as I can.
12 month is a long time, it would be hard to be abroad or on my own for the whole time.
Prof Baumgart btw made a very good impression on me at the first meeting. Doesn't mean too much but the office and the whole setup seems very professional and state of the art.
If I couldn't afford it I would have probably gone with Dr Betz or just don't do it. I don't know anything about the other doctors as I ruled out that possibility already couple of years ago....so thats just a personal thing. (On femur however I would never have gone for an external device, as I said, having the least painful solution and a somehow normal life during consolidation is key to me)
Its a bit disappointing that I need to do it in two steps but I agree with Baumgart, being able to walk and live on your own is probably much easier than sitting in a wheelchair for 5 months.
lets see how it works out...
ps. a diagnostic study has been done on the fit bone results couple of years ago. I think the link is also somewhere here in the forum. Cant remember the details but the general feedback sounded very promising to me...
-
Was it difficult to convince Dr. Baumgart to perform CLL on you at your relatively tall starting height of 175CM? I am 178CM, and your answer is of great personal interest to me. I would love to be 184-188CM, spending on how much my proportions and soft tissues can handle.
-
No it was not, it wasnt really a topic at all. don't think he would do any starting height though, 178 seems quite tall. he is a very reasonable guy, so if you make a good and mentally stable appearance he would probably still do it but I would assume not for more than 5-8CM. I personally would never do 10CM with a IMO of 175+ given increased risks, very long consolidation and odd proportions. So you might aim for 183-84 which would still be very tall (90% percentile).
-
I'm in the same situation as Taller, I think an increase of 6 or 7CM is the most I would do since proportions and function are very important to me. I would rather be 185CM and proportionate than 188CM and strange looking, would you agree Taller?
Also is 183-184CM really in the 90th percentile in Germany? I find that a bit hard to believe.
-
183-184 can't be the 90th percentile, germans are known to be quit tall.
186-187 is the 90th (for 20yo males) percentile in america, so it's probably even higher in germany.
-
think an increase of 6 or 7CM is the most I would do since proportions and function are very important to me. I would rather be 185CM and proportionate than 188CM and strange looking, would you agree Taller?
I would agree with this. I'd be perfectly happy with myself at 185CM, but if I find that I can squeeze out one two or even three more CM's upon reaching 185, I certainly wouldn't be opposed to that.
When I wear shoes that make me 185, I look completely normal. I have arms only 2CM shorter than those of my 188CM father and my sitting height is only 2CM less as well. When we stand next to each other, our torsos appear to be the same length. So I'll attribute his taller sitting height to his fatter ass lol. Also, I know a 195CM guy who only has a 94-95CM sitting height. He has a big head, but looks very proportionate.
The point is I think that we'll be fine at 185CM. I posted pictures of some people with negative ape indexes in another thread. I think that they look very normal and that almost nobody pays attention to arm length.
-
I would agree with this. I'd be perfectly happy with myself at 185CM, but if I find that I can squeeze out one two or even three more CM's upon reaching 185, I certainly wouldn't be opposed to that.
When I wear shoes that make me 185, I look completely normal. I have arms only 2CM shorter than those of my 188CM father and my sitting height is only 2CM less as well. When we stand next to each other, our torsos appear to be the same length. So I'll attribute his taller sitting height to his fatter ass lol. Also, I know a 195CM guy who only has a 94-95CM sitting height. He has a big head, but looks very proportionate.
The point is I think that we'll be fine at 185CM. I posted pictures of some people with negative ape indexes in another thread. I think that they look very normal and that almost nobody pays attention to arm length.
Of course, what one person might consider fine, another might consider unacceptable. Myself, I am pretty strict on what kind of proportional deviation I will tolerate. 185/6CM is probably achievable though, although I will certainly be long-legged at that point.
-
Just a quick update: had my last pre surgery consultation with Prof Baumgart. Nothing too spectacular, basically the general warning of what can go wrong with the surgery and afterwards. Cant ignore the fact that there are risks but obviously I already made up my mind anyways.
Got my tailor made splint done which I will need to wear during the night so I don't start bending my leg which is important to avoid muscle contraction and reduced length.
Baumgart told me that it will take probably 6 months for the first leg before I can have my second surgery done. Its really a long timeframe but I really hope I can work and do something, not just wait for the 12 months to pass by.
I will not see Mr Baumgart anymore before the surgery.
Booked my physio therapies starting in July, two times per week is the minimum but I will do 5 per week. At least I have something to do...
So thats it for the moment, next update will probably be after the surgery in a couple of weeks. Quite nervous already...
ps. yes, it was my mistake with the height percentiles. 183,184 is probably rather a 75-80% percentile.
-
You could have done fitbone cheaper with Dr Mongeal but Baumgart is better Good luck
-
so I finally made it to the hospital. Surgery will be tomorrow morning.
so far so good, only setback was that my single bedroom was not available. I tried but didn't work so I have another Baumgart patient with me starting tomorrow.
Had a visit by Baumgarts assistant in the afternoon, everybody is very nice and I try to be as calm as possible.
We discussed all the details and I was able to ask all my questions, probably some stupid ones as well.
Given the fact that I want to gain around 5-6CM and the standard lengthening of around .6 to .8 per day, it will be a very long journey.
Motivation is key I guess so trying to start and stay as positive as possible.
I will be in the hospital until Saturday or Sunday most likely. Will update you with news if something happens. Lengthening itself will only start in 5 days.
Nobody knows what I am doing here in Munich which is quite annoying as I had to lie to basically everyone for the last couple of weeks.
Wish it would be different but couldn't do it.
I decided to make a video diary when I am at home and will write updates here in the forum too.
need to take my sedative tablets now;)
good night
-
Good luck Aturro.
You are in best hands.
Everything with Prof Baumgart will be Just perfect.
-
Hey Guys, I am very exhausted so tough for me to Write.
But wanted to let you know that everything went well. Will Post a more detailed version tomorrow.
Thanks for your kind wishes!
And all the best to everybody around here!
-
Good to know your surgery went without complication, Aturro. It will be very interesting to read an account from a Dr Baumgart patient. Fingers crossed that your lengthening goes very smoothly for the duration.
-
Hey Aturro,
I hope you're doing fine! Maybe a two stage procedure isn't too bad at all!
Please keep us updated when you feel ready for it.
-
Hi guys, it took me quite a while but I was simply too exhausted the last couple of days.
let me give you a quick update on what happened:
Surgery was on Tuesday: everything went well according to the doc. couple of additional nails needed but else just fine.
Felt really good waking up afterwards knowing that there is no way back and that I finally did it! my leg was really swollen but that was expected....Didn't have too much pain the first day but obviously due to the intense medication
The nights were kind of horrible, but I was glad that the medication always helped. still not more than 2-3 hours sleep in total at night and I was waking up every thirty minutes or so...
It felt good to know that everything was ok but the level of pain plus exhaustion were still kind of hard to bear. I looked at my leg thinking about when its going to explode...
Wednesday was the first day I be carried to the bathroom in a wheelchair, after Thursday I was able to do that on my own with crutches. felt like an 8 hour hiking tour every time.
I think the problem was that I had no appetite at all and the food was not really good too. So I ate very little every day which obviously didn't help...
Apart from that I would recommend that you are physically fit before doing the surgery. I am not fit because I had done almost not sports for months because of my problems with my ankles...not good...
Medication was reduced every day until Sunday...that was ok during the day, but the nights were really bad. Needed some extra meds to sleep at least couple of hours...best time was between 6am and 1pm, almost no pain and motivation very high...decreased over the day though ;)
Pain in general was lower a little bit every day and was quite easily berable after Friday or so.
Tried to move or bend my knee but could hardly do an inch. I think its different for everybody. Some told me they could significantly bend their knee after a week and fully after two...I am far away from that and can hardly bend it all at the moment.
Back at home since Monday, nights are getting better slowly. Taking 3-4 pain killers a day. Couldn't do it without at the moment...
Its 38degrees outside so exhausting for everybody especially for me walking on crutches.
Watching Netflix all day long and getting kind of bored. Unfortunately I am too tired to do something reasonable but that might improve I hope.
Very good news for me was the reaction from my parents and couple of close friends. They didn't know anything but reacted very cool even if they are concerned of course. My father is visiting me tomorrow and friends will drop by in a week or so...that is really a great relief because that was one of my big concerns before.
I stand completely to what I am doing now and I think that form of honesty just convinces everyone. It certainly makes my life easier...
Last word on Prof Baumgart, as discussed before he is a very very good surgeon but also very helpful. I had issues with my device and he wrote me back an email on Sunday right away. that gives you a good level of comfort. everything works fine now.
next monday I have my first consultation. Will do my first xray, very curious...
Lengthening is about .6 or .8 a day now, maybe it will already show on the xray next week...
will keep you updated.
last thought of the day: someone wrote in a similar forum couple of years ago that for him the whole process was 30 percent physical and 70 percent mentally. I am not done by far but I can already strongly agree to that statement....
so trying to stay positive even without sleep;)
good night
-
Rough day today. Last Night was awful, lengthening during the day is ok but at Night the pain increases significantly.
couple of low moments already thinking, what have I done to myself...try to Hang in though
Biggest concerns are the swelling which seems to just stay the same.
And the uncertainty how the next couple of weeks will work out.
I definitely cant survive a day without medication. I so much hope they let me use it as long as needed...
the two stage procedure is probably easier but having to go through the same again is frightening
I have no idea about tomorrow but I keep dreaming that everything will ne easier when I wake up next time
-
Hang in there buddy!
Remember the pain will pass... but the height will be forever...
Stay strong, we are all cheering for you!
-
Thanks guys! feels really good to have your moral support!
Took one of the stronger pills yesterday night and slept for almost 5 hours! felt surreal. that was the best feeling for a long time...try to reduce the daytime medication to almost zero now and only take one before going to sleep.
Having slept a couple of hours makes such a big difference, motivation wise and physically...
Had a lymphatic drainage today at home which was also nice. Apart from that its really boring. I think thats one of the advantages of Dr. Betz and others... you are constantly surrounded by people sharing the same experience. I don't really have anyone to talk about LL who can give you some advice etc.
still hanging in...
Glenn, your plans still unchanged for August?
-
Hi Aturro,
Great to hear you are feeling better! Hang in there, I'm sure things will get easier and easier as you progress.
Yes, my plans are the same. I will arrive Barcelona on August 18 and have my surgery on August 25. I am excited and anxious at the same time :-)
-
Glenn, its good to hear that your are well on Track!
Nothing new from my side, swelling is getting better. Level of pain is ok but not improving. So I am still taking medication. Only thing worrying me is the stiffness and that I cant bend my knee, only very little. Muscles outside my knee are so thight...hope that is normal.
Will See the doctor tomorrow...
I dont know why but I cant concentrate for longer than a few minutes. Cant read just watch most stupid TV shows. In two months I will be brain dead...but hopefully taller...
-
I'm glad everything is progressing as well as expected for you to so far. Thank you for posting this diary! As someone interested in a two-stage fitbone procedure, it'll be very helpful.
hopefully the least physically demanding postsurgical effects. (Fitbone is not inserted via hip area etc.)
Could you expand on this? Did Dr. Baumgart say why it's better to not go in through the hip? It seems like it would be riskier going in from the knee joint. And would you be willing to post a picture of just your knee to show what the surgical insertion point looks like? Thanks.
-
Hi, quick update and answering some questions...
started my PT this week, but not doing much so far. just some easy exercises and some massage to release some muscle tensions which are quite annoying...
Trying to walk as normal as I can on crutches, i.e. bend my knee and improve flexibility. Far away from normal as of now. My knee is still swollen which makes walking etc quite difficult. But I think its getting better slowly.
On Wednesday I took the train to visit my parents for a couple of days. Train was ok for 4 hours being able to stretch out my leg but had to walk almost 300m once I got off. Took me 25minutes to get to the car, and together with the 50 minutes walking back and forth from my PT the same morning I was completely destroyed in the evening.
Had to sleep and rest for two days and only starting to feel better now. I think exercising is good but there are limits...
Lengthening is ok so far, starting to feel some pain after each lengthening but not too bad.
Still taking one pain killer before going to bed. Nothing during the day though
I thought I could start doing some minor work etc but that seems impossible. Getting up 3-4 times every night, walking around for couple of minutes to lower the pain and stiffness is somewhat ok, but I need to catch up that sleep during the next day. Working etc seems far from possible now, lets see...
Spoke to 2-3 friends and told them about my LL. I am gladly surprised that they all stand behind me on this. I guess they don't really like it but everybody tells me its ok if thats what I want to do. Good feeling to be able to talk about it and have their support. Guess times are much better for everyone doing surgeries etc as people and society are more tolerante towards these things.
I keep reading some other postings here and I am really impressed by people doing two legs at the same time. Obviously its good to save so much time but it must be really hard. One leg is tough already...
To JConnor:
I need to ask the Prof, I can only tell you that when I told him about other methods (like hip insertion) he replied that I get a very precise and state-of-the-art surgery technique for all the money I pay.
Personally I can think of two main factors: one is invasiveness, the other accuracy. In terms of accuracy he told me that lengthening is not just simply extending the bone as it has it specific shape. Therefore lengthening and the installation of the device must be very accurate using laser technique etc.
As I always felt being in very capable hands I didnt ask for all the details which I would probably not understand anyways. But if someone has a specific question I am happy to ask...
Posting a picture is fine with me, need to find out how to do it. Notice that my knee is still swollen so might look different soon.
In general the scars look ok, I am not worried about that at all
I have one or two more as I got 5 nails instead of 3 to make it more stable.
Going back to Munich on monday probably by car if my friend has time to drive me there. Xray in the afternoon which is the most crucial thing for me. I really want to here and see that everything is well on track...
LL really tests your mind, sometimes you feel good and highly motivated and then you are in pain, questioning yourself and feeling terrible.
but everybody knew its won't be an easy ride.
so far so good...
-
Hi Aturro-
You are doing great. LL is difficult journey and really test your guts, patience and temperament. I was one of the highly motivated guy when I had femur done last year. I too some time (may be one or two occasions) was at low point. But I never regretted it. It was blessing to exit from unacceptable to acceptable height. My gosh we have a solution to height neurosis!!!
You will be 180. I will need two more LL to get there :o. Not possible in this life time but no regret either. I am happy for you and you will enjoy your new height when all of this is behind.
Please keep us posted.
God Bless!
-
Hi Cooper! Thanks for your supportive words. I read your diary, its great! And good to hear that you are in almost no pain.
I admire the fact that you are doing this for a second time. You must be really strong mentally. Well done.
Its a bit similar to my situation as I will have my second leg only done in 6 months or so...
I hate the First two weeks After surgery but its good that boredom is my main concern at the moment.
One issue I am having is that my foot always rotates to the outside when I walk. pt told me its normal and caused by the IT band. But I hope it doesnt get worse or influence my walking later on...try to bend my knee while standing and work against the Automatic rotation of my foot, feels strange.
Anybody has an idea on that?
I read about IT Band release. What does that mean and why could that be neccessary?
I am impressed some people are really flexible After 2-3 weeks. I can stretch out completely but bending is at 30 degree at best not improving...swelling can stay for months my PT told me..
I dont really bother but I am curious as it is very different to other experiences...
Having the next xray tomorrow, everything Should be Fine I hope...target 2.1 CM...
good Night to everyone and lets focus on our goal!
-
its been a while and I thought about giving a quick update on the last ten days.
good news, Prof Baumgart is happy, everything looks ok. xray showing 2,8CM by last monday and it feels even more using 3CM lifts and standing even...
and although its only 3CM it feels like a different world. curious what it will be like at 6...
bad news is that pain started to increase last couple of days. I somehow expected that but its still a bit tough. Sleep is getting worse and without pain killer I couldn't go to bed at all.
Most of the pain is in my knee, but coming from the muscles above the knee that run past it...started using warm pads and that kind of helps a bit.
Pain overall is still ok but I really hope its not getting much worse the next 5 weeks.
Walking around and being 3CM taller makes up for quite a lot. always laughing at myself when I am walking on the street.
Baumgart told me that the X-rays are not showing the real bone gap and that you need to deduct around ten percent to get to the real gap. that also means that if I aim for 6CM for my right leg I need to go up to around 7CM to be sure get there. (i know thats not exactly ten %)
I am bit skeptical but don't really care at the moment. lets see in 4 weeks....
-
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?
-
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.
-
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...
-
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...
-
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
-
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...
-
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
-
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
-
hey aturro!!!
how is it going? please update :)
-
Is Fitbone accurate in your opinion? Some patients say it isn't.
-
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!
-
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...
-
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!
-
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
-
hey aturro
good luck for your big day tomorrow!
-
Keep on figthing aturro!!! Just tree bad days
Cheers
-
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.
-
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!
-
how are you, Aturro??
:) :) :)
-
Aturro,
Any update?? are you well?
-
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...
-
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!
-
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.
-
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 (https://farmacialasagrera.com/2105-large_default/alanerv-30-caps-blandas.jpg)
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
-
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...
-
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.
-
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.
-
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.
-
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
-
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...
-
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.
-
Hi AimHigh,
thanks for the feedback! I am in week four now and the pain is still the same, extremely annoying. Good to hear that it subsided for you after all. 2-3 months is quite a timeframe though...
I take 150mg Pregabalin which helps most of the time and allows for some sleep at night.
still kind of nerve wrecking at the moment...
-
by the way, does anyone know why this nerve pain actually happens?
is it because the nerves are stretched to their limits or is it because they are damaged and need to regrow? any other ideas?
thanks
-
by the way, does anyone know why this nerve pain actually happens?
is it because the nerves are stretched to their limits or is it because they are damaged and need to regrow? any other ideas?
thanks
I would have liked to have seen the results of this diary as there aren't many Baumgart diaries at all. Hopefully Aturro can chime in sometime and update us on his progress.
-
Hi Aturro:
You are very and very stong and courageous. i am always watching your diaries in a couple of days, i hope to hear good news from you. The journal for me just like having the feeling of reborn. i i am always shy of my height when i grow up, it is only 153.5cm(my dream heigh is increase to 6.5- 7 cm). i want become to a normal heigh woman(standrad heigh:160cm)
I also want to find the Dr Baumgart for the imternal femurs of surgery. i try to prepear for making a lot of money for the surgery. i am thirty-seven(37), but i am afraid of my age.
Do you see the other ages of some patients like me in Dr baumgart's hopital for limb lengthening? do you see some girls do the surgery in Dr baumgart's hopital? From your diaries, i can feel the pains that result in can't sleep at night. How much pain a girl can endure? I am so worried.
-
Pain should be your last concern, cognitive Dysfunction after surgery is the worst!!
-
Isn't cognitive dysfunction after surgery only transient ? It won't interfeer with your surgery as much as pain does. Also it's more common in elderly people with preexistent conditions and with heart surgery
-
Pain should be your last concern, cognitive Dysfunction after surgery is the worst!!
This is maybe your worst fear.
The most serious risks of LL is embolism and infections. The first may lead to death while the second to amputation in very rare cases.
Both can most of the times be prevented.
So Lilxiaomi stick to these which are what doctors say about LL and not to what fear anyone here has in his head.
And being a woman at this age make the whole situation more difficult because bone growth won't be veey strong and fast and it may lead to non union which is another risk with LL.
So think again about this procedure.
You won't gain much as you are not young (especially for a woman) and also height doesn't matter for women but you may lose a lot.
-
This is maybe your worst fear.
The most serious risks of LL is embolism and infections. The first may lead to death while the second to amputation in very rare cases.
Both can most of the times be prevented.
So Lilxiaomi stick to these which are what doctors say about LL and not to what fear anyone here has in his head.
And being a woman at this age make the whole situation more difficult because bone growth won't be veey strong and fast and it may lead to non union which is another risk with LL.
So think again about this procedure.
You won't gain much as you are not young (especially for a woman) and also height doesn't matter for women but you may lose a lot.
Solid advice. Factors for non union: Asian, women, age, smoking, pre existent conditions (diabetes, aterosclerosis) and lack of physical activity. In the worst cases, some fractures take years to heal (even if there is no distraction) and depending on the nail there might not be weight bearing (stuck in a wheelchair until healing occurs. Be very careful.
-
Isn't cognitive dysfunction after surgery only transient ? It won't interfeer with your surgery as much as pain does. Also it's more common in elderly people with preexistent conditions and with heart surgery
Cognitive Dysfunction can be for all your life And yes happens more in old guys but can happen to whoever You can be of the Lucky group ir not, impossible to say. In Young people GENERALLY doesnt last more than there months, it shouldnt be just my worst fear should be of the majority, because has unknown causes And is impossible to prevent. Fat And infections are very known and can be fixed, in case of fat with INRA And infections with internals are rare.
-
I hope your name isn't true and you don't plan to lengthen one more foot because if that is the case you have a LOT more things to worry. Maybe you can ask for epidural anesthesia which avoids the use of general anesthesia thus preventing this complication
-
Hahaha, 30 cm, I am not Apotheosis dont worry. So epidural prevents this?
-
Dear all guys:
Thanks your advice. Tell about my situation: i never go smoking, i do some yoga excrises per week. i have no high blood pressure,my weight is 52kg, i know the Precice 2 Internal Femurs with Dr.peny can weight 60kg. So, i think i can do surgery about Guichet's nail or fitbone or precice 2 according my situation.
so, i have a question, the non-union is not happened in gerenally according my sitation,is it?
-
Dear all guys:
Thanks your advice. Tell about my situation: i never go smoking, i do some yoga excrises per week. i have no high blood pressure,my weight is 52kg, i know the Precice 2 Internal Femurs with Dr.peny can weight 60kg. So, i think i can do surgery about Guichet's nail or fitbone or precice 2 according my situation.
so, i have a question, the non-union is not happened in gerenally according my sitation,is it?
Nobody can predict non union, but in your case is not very probable.