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[Leonardo2013]

Disobedient, give us some pics, please!

[Machine]

This is absolutely not a good idea to do CLL . There are far more other advanced techniques to do CLL .
I dont know how you ended up doing monorail and on top of that quadrilateral.
I m not trying to make you feel bad or something. But so far from my experience i think you are ruining your life.
I saw people do monorail on femurs and it dosent look good , the scars and the pain they had to go through.
If there are any reverse mechanism to do then i think you should it straight away. Forget about lengthening .
Now is your chance , dont think you u came this far and now there is no turning back or something.
Be practical , you were kicked out from old forum  cause they know this is dangerouse. Everyone around the world are doing external fixator cause its safe . If u can reverse this lengthning then i suggest you should do it right away.
This is my suggestion ... i will pray for you . 
Shame on the doctor who is doing this surgery. Do your research on limb lengthening experts and try to consult other doctors over the phone or email. Do it now or you wil regret your whole life , this is not a joke .
I really feel concerned about you .
Your well wisher.

[Sweden]

It is no use trying to talk sense to anyone. If you don't tell them what they want to hear they call you stupid and everything. They are not even ready to discuss your point of view.

A well, let them experience it the hard way....

There is so much more in life that you want to do than just being able to walk.

[Disobedient]

Sweden

She is already out of shape to begin with. I'd say she had 15kg over weight when she started

no I'm not... I'm 56kg what is over weight in this!!
and just to recall your thread in old forum  is not to ask for more unbiased advice


Machine

oh good  I was worry that I banned from old forum  because I asked about bicycle exercise..
BTW I didn't mention on old forum  that I'm gonna do the both parts.. so again what did you say they banned me for?

Leo

I don't think I'll post any pics of me anymore except my x-ray..

however shorty took many pics of himself  while he's standing, bending his knee and walking
I really want to post his pictures just to proof that the result and complications of ll surgery is vary from one person to another
me and shorty did the same surgery with same doctor, however he was able to left his leg from the 2nd day, he is bending his knee 85, he can stand for 5min, and he came to my room today by walking on his legs !!!
I think he did better than a "regular"  LL patient can do " when I said regular I mean who did one part" ...
anyway I'll see if he will let me post his pics ..

[BullSurfer]

I just don't understand the naysayers. Diso is fine and so Shorty. Why are you guys so adamant that this technique is inferior or will cause harm. I believe most doctors know what they're doing, unless that doctor never went to medical school.

Keep up that smile Diso, you're almost there. Some pics would be nice, just the gears and legs. I don't think you're overweight, these guys are perfectionists.

[An_Apple_A_Day]

An_Apple_A_Day

what will happen if I speed up the consolidation?  I didn't see any problem associate with that

I'm no surgeon or doctor so it is only conjecture with which I say this; but, if your bones are regenerating fast and you need to turn quickly to avoid premature consolidation you are going to torture your soft tissues.  Your bones don't need to stretch and be supply like everything else, the more and more one reads the more one learns LL is actually a case of looking after your muscles and nerves.  There are lots of trick to get bone non union to sort it self out.  Very little for nerve damage or torn muscle/tendon issues.

Just look after yourself.  You are a long time living.  You want it to be comfortable and happy, not messed up from rushing these few months of your life.

Take care.

[Sweden]

The thread on old forum  is out of track, I know.

There are several reasons why nobody should ever go with the monorails. If all LL-veterans say never to go with monorails there MUST be a reason behind it!

I cheer for you Disobedient, I really do.

It doesn't matter if you're a little overweight right now. Your body heals better that way.
We don't need to discuss your weight if you don't want to. For the future: Do a fat% measurement with a personal trainer and you'll see how you are doing.
It has nothing to do with being perfect.

Don't be shy to post pictures, this is the first out in the open quadrilateral LL-diary so far. What is the point of starting it if you're going to leave it like many others often do?

Didn't you wish there was such a diary before you left?

Ask shorty to start a diary too.

Regarding him standing. Ummm, well if his doctor tells him to...... I just know he really shouldn't do that but it's his decision.
I lived in India with a guy who did cross-lengthening. He could absolutely not stand up with the monorail on his femur.
Another guys femur totally shattered when he was carried up the stairs.

I really hope you will make this journey! And ask Shorty to at least say he is doing fine.

[Taller]

Please continue your diary. Everyone that does something that others don't understand or do not approve of will be criticized and get shots thrown at them. Don't mind those people. This diary is your chance to show everyone who doubted you that they were wrong in doing so. Please keep writing. I wish you lots of luck with your LL journey!

[Adriano]

I just don't understand the naysayers. Diso is fine and so Shorty. Why are you guys so adamant that this technique is inferior or will cause harm. I believe most doctors know what they're doing, unless that doctor never went to medical school.

Keep up that smile Diso, you're almost there. Some pics would be nice, just the gears and legs. I don't think you're overweight, these guys are perfectionists.

I am actually starting to think that although monorail is not that good that Dr Sarin’s carelessness made it look worse than it really is.
Most of the guys who are very concerned are from Dr Sarin’s guest house or members who read stories about guys who did monorail with Dr Sarin.
DSB has already achived 5cm if I am right  AND with 4 broken ones.
She is in much better hands in terms of care. She appears to be getting adjustment operations as soon as a potential issue is noticed.
Now it urns out there is a guy who is doing Exactly the thing as DSB and is also in good spirits with no major issues to date.
I am starting to think that Dr Sarin’s failures with monorails had more to do with his actions than the device itself.
LETS NOT FORGET THAT THE MOST COMMON OR FAMOUS STORY ABOUT MONORAILS ON FEMUR THAT TURNED OUT TO BE A HUGE FAILURE WAS OF A CARAZY+6.
CRAZY+6 TRIED TO GAIN 4 INCHES WITH MONORAILS BEFORE RECOVERYING FROM ANOTHER SURGERY WHERE HE GAINED SOMETHING LIKE 3+ INCHES.
We also saw pictures of a guy who had been butchered alife by Sarin …. Haha aha ha h haa
The question is…Are monorails really that bad or were they in Dr Sarin’s careless hands
How many  ppl will never do externals because of Captain America’s bent illizarov fames?
Who was bad? … the frames or the doctor??..

[Sweden]

Monorails is that bad. I know of several stories from china and other parts from India.

America's device got bent bc he had very muscular legs. If the device were stronger I'm not sure that would happen.


There is so much more around monorails than just pulling the bones apart.

[BullSurfer]

I agree with Adriano, maybe Sarin ruined this method for everyone, also, no one in their right mind would do 4 inches, that's just too greedy. People who's greedy will always run into obstacles.

I compare LL doctors to artists, a good artist will make any canvas look good with his brushes. The bad artist will ruin the canvas by overdoing or under-doing.

To Sweden, I thought you had your LL in Sweden, am I wrong? When did you witness the Monorail derailed? Why don't you tell us a few stories about how bad the Monorail system really is.

[Medium Drink Of Water]

There's nothing inherently wrong with monorail fixators.  The Mitkovic fixator is a monorail design and I've known people who've had LL successfully with it.  Jungle could stand with them.  Bianca could walk with them.

[Sweden]

A patients femur broke:

Scars from another monorail patient:


Another patient suddenly got osteoporosis and had to change the monorail to an Ilizarov.

The muscles in your thighs get seriously damaged. Some patient report very sensitive knees and they can never go for a run, only slightly jogging.

Another reports from totally loss of feeling in the lower leg. Nerve damage. Got only slightly better after 2 years.

There is much more. The device can fail in a couple of ways, higher risk of infection, extreme muscle atrophy, way longer recovery time due to not being able to move, extremely painful physical therapy(sometimes my roommate screamed so loud the entire building got the shivers)

But if you're satisfied of only being able to have a very quiet life where you only exist then take the chance.
I want to do more than just walking around.

[Leonardo2013]

Disobedient, they're right when they say that what's the point of starting a diary and then leaving it. You're a pioneer in a way 'cause you're the first quadrilateral diary that has ever been posted. The whole CLL community is interested in yours as well as shorty's story. I send you my best vibes!
 

[Medium Drink Of Water]

Disobedient, they're right when they say that what's the point of starting a diary and then leaving it. You're a pioneer in a way 'cause you're the first quadrilateral diary that has ever been posted. The whole CLL community is interested in yours as well as shorty's story. I send you my best vibes!
 

Agreed 100%.  Don't get discouraged, keep us all informed.  We're interested in your LL experience!

[BullSurfer]

I would like to see you continue this post too Diso.

Thanks Sweden for the Monorail pics.

[BilateralDamage]

Ignore the haters Diso!!  Be proud and get through this, we're all rooting for you!

[Disobedient]

hello everyone

I do  appreciate your continued support

anyway I just take permission from shorty to upload his photos


 hospital room, he stayed here around 10days





this is him bending his knee in 2nd day after the operation 



in the hotel after removing the dressing





and watch him standing 2 days ago

[KiloKAHN]

Thanks for the update, Disobedient.

I consider myself a daredevil, but I know I couldn't ever do all four segments at once. It's taken me years just to consider doing my tibias. I hope it goes well for you guys. Remember to be very careful though and don't overdo it by trying to lengthen too fast or trying to walk all over the place.

[BullSurfer]

Thanks Diso for the pics.

Btw, how many cm have you managed to distract in each section? Any pain, normally after 5 cm you would feel it.

Something to cheer you up, here's my pet rabbit, I nicknamed him "Tiny".

[sadboy]

Disobedient,

 I hope everything goes well, I will pray for you 

[Leonardo2013]

diso,

You know if they also apply a male penis catheter after the operation? BTW, how hard/easy is to change clothes -- especially underwear -- with these frames on? Please, tell shorty to start a diary, too. I'm sure the moderator of this forum can start one for him if he wants.

[Shorty]

diso,

You know if they also apply a male penis catheter after the operation? BTW, how hard/easy is to change clothes -- especially underwear -- with these frames on? Please, tell shorty to start a diary, too. I'm sure the moderator of this forum can start one for him if he wants.

Yes u will have catheter.

And easy for me to wear a short not underwear.

Anyway I will not do a diary and maybe I will do after the final result. if u have any questions I will be happy to reply.

- Today I just start distraction     and I still feel OK.

Finally, I would say every one's body different don't compare ur self to me.



many people they do the same surgery with same doctor but with different outcome.

[Russianblues]

Cheers Shorty!

Are you standing without a walker!? That's amazing! I can only  tily stand with an Ilizarov on my tibias. Props bud!

 


Shorty whats your time frame for things? Lengthening amount/frame removal/crutch walking/walking etc?

[Shorty]

Cheers Shorty!

Are you standing without a walker!? That's amazing! I can only  tily stand with an Ilizarov on my tibias. Props bud!

 


Shorty whats your time frame for things? Lengthening amount/frame removal/crutch walking/walking etc?

Yes .. confirm with my friend  Dis,,, I STAND & WALK for 5 minutes  with no help and go to her room ... but after a while I feel  tired I ask for help
 



I wont go past 8 Cm ,, but if things go ok I will do 10


I really have a good supervision
 

[Machine]

Machineoh good  I was worry that I banned from old forum  because I asked about bicycle exercise..BTW I didn't mention on old forum  that I'm gonna do the both parts.. so again what did you say they banned me for?


Diso you were banned because they dont want you to encourage ruining one's life .
I m really sorry for you . I dont want you to feel low , just trying to help.
If you made up your mind then you better be ready and strong in future miss.

[Russianblues]

Really impressive stuff Shorty! 



May I ask why you chose to go with the quad monorails over a more standard Ilizarov as 8cm is achievable with both?

[BullSurfer]

I wont go past 8 Cm ,, but if things go ok I will do 10


I really have a good supervision
 

Let me understand this, 8 or 10 cm for both femur and tibia or just one section?

[Shorty]

Really impressive stuff Shorty! 



May I ask why you chose to go with the quad monorails over a more standard Ilizarov as 8cm is achievable with both?

I saw Dis & she is doing good so far, another thing I don't want any thing inside my bone and I want the same increase in my both part and do it once .and also fast ,,,just wait the result 

[Shorty]

Let me understand this, 8 or 10 cm for both femur and tibia or just one section?

for both 4 or 5 each part  total 8 or 10 ..

[Claude]

I hope you are doing fine Disobedient, please don't grow too much.