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[FalcosJeanny]

Hello everybody...

I am a patient of Dr. Salameh. i am from germany...  please feel free to ask me your questions... hopefully you can understand my bad english *g*

I did have my operation dated 23.11.2012... but i am still on crutches. and my fixateur is on my legs... i cannot walk or stand without crutches.
my bone growth is veeeery very bad and i will have to take the fixateur on my legs for about another year :O(((
i am so sad..... i have no power anymore....

nearly EVERYTHING went wrong with me and my surgery... i did have many infections and weak muscles etc.

greetings
jeanny

[BilateralDamage]

Jeanny,

I'm so sorry to hear about your problems.  Could you please describe your journey to us and the complications you experienced in detail?  Please tell us about yourself as well, age, before height, after height, etc.

[Blackhawk]

Hi Jeanny sorry to hear about your complications.  Dr Salameh is someone I am considering.  How would you rate him as a doctor?  Do you know some of his other patients and have they had complications too?

Thank you and I hope you get better soon.   

[PrettyTall]

I'm sorry jeanny hope you get well

Hello everybody...

I am a patient of Dr. Salameh. i am from germany...  please feel free to ask me your questions... hopefully you can understand my bad english *g*

I did have my operation dated 23.11.2012... but i am still on crutches. and my fixateur is on my legs... i cannot walk or stand without crutches.
my bone growth is veeeery very bad and i will have to take the fixateur on my legs for about another year :O(((
i am so sad..... i have no power anymore....

nearly EVERYTHING went wrong with me and my surgery... i did have many infections and weak muscles etc.

greetings
jeanny

[FalcosJeanny]

Hello again :O)

i dont want to spread bad mood in this forum.....
but i have to be honest.... and after all i cannot tell you that the ll journey went good for me...

i still cannot walk.. not even stand without crutches... and i have terrible ballerina foot.... 6cm.. even if i do exercises very hard every day and going to the gym.

my age is 31... i was 1,56 m and did 10 cm lengthening. but i did the lengthing in ONE year.... i started lengthing at 01.12.2012 and stopped in the end of september 2013. my bone growth is very bad... i have to take needles (with bone growth hormones = Forsteo) every day in the stomach. it seems to work...
but it take very long................. it seems to take one more year to get rid off the fixateur....

i only know goodfootballer who did surgery with dr. salameh.... but he described his ll journey like a walk in the park...
i dont know if he told the truth... but the fact is: goodfootballer can walk .... and i cant!

[Sweden]

I'm sorry to hear that but that's the reality of doing 10cm.

It sounds normal to me.
That's the amount of time it takes.

Keep fighting.

[FalcosJeanny]

ok... thats sounds clear to me....

do you know how long it will take to be recovered (means for me at least walking without crutches!) from now on?

[Claude]

I cant imagine how it would have been if you did LON for your callus.
Im not a specialist like Sweden yo, but i would say about 6 months.
Do you try to walk everyday ?
Maybe you should post  some pics (or send them in private) of your ballerina feet /Xrays to veterans so they can answer you.

With time it will become close to normal so keep exercising everyday.

[BilateralDamage]

What was your experience with Dr. Salameh like?  Surely he can't be happy with your outcome.  Has he been assisting you along the way?

And please post any pictures of your legs/x-rays if you could.

[jerry]

Jeanny,  10cm is alot to recover from.  Perhaps write a diary with more details?  All the best.

[FalcosJeanny]

that is my main issue.... dr. salameh is not available for me... he is only 2-3 times a year in germany and when he look at my legs and my xrays he tells me everything is fine.... and i should do shortening.... this is his only advise....
that botheres me a lot...

i dont want to write a diary because i dont wont to blame the doctor.. surely he does the surgery and he did his best....
but my first physio session started in may 2013! from december 2012 till then i did not have any gymnastic sessions by a professional....
nobody told me what to do or what to eat..... every time i asked for help or advises the same answer was "everything is ok"... but it was not!

i did have painfully infections because he told me not to clean my pinsites to often.... and this is really the worst pain i ever had....
i did have it for month till the antibiotics works....

i can post my last xrays from january....

[FalcosJeanny]

Here are my latest xrays.

iam awaiting your opinions )

[FalcosJeanny]

i do walking every day with crutches for several hours...
and i am working since january 2013 again.. in the office.

hopefully i can get rid off the crutches as soon as possible!
thats no life.... such a long time with crutches.... 

the fixateur is weight bearing... so my idea is: can i excersise my muscles in the legs a lot every day so that they will be strong enough to take my whole weight?
and can i THEN walk even with broken bones?
goodfootballer did this.... but after a few monthes.... i stopped lengthening in september 2013... so perhaps can it work for me too?

dr. salameh did not give me an answer of this question.... he only told me that a few patients did walking without crutches.... a few not.....
so what is that answer good for?? is it possible for me or not??

[BilateralDamage]

Jeanny, while you lengthened a large amount, it seems like there is a lot of doctor negligence going on too... I suggest you write a diary because it would really give people a lot of insight into what kind of doctor Dr. Salameh is (we only have goodfootballer's diary and his story seemed too good to be true).

Did Dr. Salameh tell you how much weight-bearing you could allow on his device?  I don't understand how he couldn't give you a clear answer as to whether or not you can exercise with the fixators on.  Also, physio after a whole 6 months is ridiculous!  What were you doing during the lengthening process?  How did you prevent ballerina, etc.?

[giuan 1965]

hi Jenni,breaking my posting cherry here,just trying to put your mind at ease
from what i have read over the months and seen in pictures your bone cloud looks ok
for someone who has lenghtened 10 cm it generally takes i month per cm according to docs and veterans
as for your ballerina only physio walking and time will sort that out
hope this helps

[Orlando]

Nine months to lengthen (December to September)  is long time even for 10cm.  Was this your own decision or the doctor's? 

Doctors have stated that it takes 1 to 1.5 months for every cm gained for consolidation.     The earliest date is July if the bone recover very well.    End of the year is also possible.   
 

[Claude]

Hi jeanny, from looking at your Xrays your callus doesnt look good. Maybe its possible to walk without crutches depending on your weight, are you in contact with goodfootballer ?
I dont like Salameh's answer, you cant weight a lot so you have probably less chance to break something than GFB, it doesnt mean something cant go wrong.
I cant give you any advice because i think its your choice.
But everything will be fine with time.

[FalcosJeanny]

thank you so much for your answers!
Yes.... i am a little desperate right now..... because at first i only knew goodfootballer (in real life too!) and all what he told me and what i did see was so perfect and easy....

and from the start i asked dr. salameh how many cm i can make and he said as much as i want! he told me from his patients and showed me videos who lengthened 12-16 cm! and this was my goal too... 13cm... but... dr. salameh did surgery on me... and then... there was not a really plan to go... or what i have to do... what exercises i have to do... even not how i do crutch walking in the right way.... everything i learned by myself and asking other people who once had crutches in their lives.

goodfootballer wrote emails to me about his ll and his process... but his ll life was much better than mine?! and i couldnt imagine to do all things wrong!

i needed even a second surgery on monday after the first surgery dated on friday for removing 4 screws in both legs because of nerve pain... the screws has been set imminent to nerves in the knees.... the second surgery was not good for me.. after that the legs has been swollen sooo much and i puke a lot....

so... after 11 days in the hospital i went home... and started lengthening for the next monthes...  first i started with 4 times lengthening a day. every 6 hours even in the night. this i made until march 2012.. the xrays showed nearly NO callus.... NOTHING... it was all black... i can post the xrays later.
dr. salameh told me to do 1 lengthening event a day... instead of 4 times.... so i lengthened not 0,08mm but 0,02mm a day...
but this helped not to increase the bone growth.... so he shortened me about 1 cm in april and july .... for stimulating the bone growth he said.... but it works not for me....

i use physiostim and exogen 4000 machines.... but the didnt seem to work for me at all... i take calcium, vitamin d and magnesium.. and a protein shakes. the bone stays very weak.

the explanation of dr. salameh is that i have a fail in the genes from birth..... and there is nothing to do than wait or shorten again....

BUT the process of shortening is VERY painful and a full weak after he set me back from 1cm in one piece my legs are so swollen and the knees are hurting so much, that i cannot even walk with crutches... AND i did not help at all....

in all this time i am soooo gladful to have dr. schmidt in frankfurt (at his place the surgery was performed) ... he gave me a prescription for injections (every day) with forsteo (hormonal treatment).. and this seems to work now... the bone does increase in callus producing in the last 2 monthes rapidly.

i am little bit depressed.... and if i knew now what i didnt knew then... i would never do it again........................

I post first xrays now

[FalcosJeanny]

Here are xrays from the middle process of lenghtening.... at this time both doctors were not happy with the bone... but did nothing against it!

[emanuel]

Hello Jeanny!
I am happy that you finally decided to write on the forum. Maybe you will get good advice here, but at minimum you will find mental relief by telling your story.

We are in a similarly difficult situation and I assume that both of us really have bad genetics for LL 

Since when do you get the forsteo injections? Do you have to pay for it or are the costs covered by insurance?

[emanuel]

how long it will take to be recovered (means for me at least walking without crutches!) from now on?

maybe 1 year

[emanuel]

i only know goodfootballer who did surgery with dr. salameh.... but he described his ll journey like a walk in the park...
i dont know if he told the truth... but the fact is: goodfootballer can walk .... and i cant!

Well, there are those type of diarys that simply omit negative things, complications etc. I sincerely hate such diarys, because they are misleading and dangerous for future LLers. No LL is a walk in a park, but some diarys make it seem like that.

Usually, you can't even blame the writers of those diarys, because the reason why they do it is entirely psychological. People don't like to talk about negative things. People don't like to admit that they have made a bad choice (e.g. of a LL doctor or of deciding to do the surgery). People don't like others to believe that they have made a bad choice. And so on.

[Claude]

The XRays with no callus must have been so scary for you but now you are back on track so its just a matter of time before you get back to walking normaly.
You made a good choice by talking to others so you can have some advices. And did you ask Dr Schmidt about walking without cruches now ? I think Dr Schmidt's reaction by injecting you hormones was the best thing to do.

[FalcosJeanny]

Dr.schmidt started to give me the injections in the middle of december. The injections are covered by insurance...
Perhaps you can get it to Emanuel? It Speeds up the Bone growth rapidly.

Thank you for supporting me Emanuel... Now i have the Mood to go in public With my experience in the Forum...

[Orlando]

A good diet helps bone recovery, espcially protein and calcium.   Check out this guide, it has list of supplements and exercise routine.  It's for internal LL, so avoid swimming with frames on.   Go with walking on crutches and stationary biking.  http://www.limblengtheningforum.com/index.php?topic=10.0
 

[FalcosJeanny]

Thanks a lot for your help!

[PrettyTall]

Hi hope you doing fine ,how much did you pay? thanks

[Medium Drink Of Water]

I don't know if you can afford it, but if I were in your position I'd consider LATN so you can at least get out of those fixators.  You must be miserable having had them on all this time.  Knee pain is a risk but not guaranteed.  Dong Mei (a famous Beijing patient who lengthened a whole lot) had really bad bone growth too and had to leave the internal nail in for years.

[Blackhawk]

Hey MDOW,  did you ever meet Dong Mei?

[Medium Drink Of Water]

Yes I did.  She and her boyfriend came to visit the hospital when I was getting my nails removed, and she still had hers in. 

[Blackhawk]

I saw some pics of her and I thought she looked ok for doing as much as she did.  Do you think her legs looked ok when you saw her in person?  Did she really do 12cms?