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[dreamingtall]

as I prepare for CLL, I wanted to understand the likelihood of developing arthritis or other chronic ongoing pains experienced by CLL veterans. I do know that this forum tends to produce a lot of optimism (which I do appreciate) but to understand the realities of aging after having this surgery is a crucial factor to consider. I'm sure this discussion has been talked about but I am bringing it up again to find new data from Veterans.

Many people I've confided in about LL who have no plans to do it bring up the issue of chronic pain as you age. I think in my head that this is serious considering our natural joints may not have been wired to support the weight of the new bones. I also have a father who works for a medical implant company and I hope advancements continue to take place to curve discomfort and reduced life quality. I still would rather have physical pain than mental pain in regards to my stature.

[TemakiSushi]

I’ve heard that getting premature arthritis is quite high with this surgery when asked LL doctors but not cosmetics

Even in this forum there have been some videos of veterans, most of them post femur surgeries and some tibias, strange movements can be seen

Most diaries are stopped soon after lengthening is done or nails are removed.
But that’s not the end of the story.
Once started walking or running normally without limping or movement to cover pains, the joints starts to get full stress as much as pre op
Then many actually develop different problems in different parts of the body if alignment is not good or there’re hidden rotational deformities, or from the damaged soft tissues such as cartilages and ligaments
But then at this time most people don’t write a thing here
Most Diary ends incompletely saying I’m fine I’m happy
Then even if some of them comeback some years later with video, they still says  I’m fine, showing wierd movements

Yes, Not only short term complications, but also long term complications need to be researched
You’ll find out there are lots

And of course if a doctor has higher chance of short term complications, a chance of long term complications will be even higher

These open forums are full of traps, majority who only research about a doctor of their budgets or a doctor in convenience are in danger since most CLL doctors are really craps

[Tupac]

You focus too much on the surgeons I think. Most of the limb lenghtening comes from 2 things: the technology used and the patient himself (objectives, physical characteristics, optimal stretching ...).

We are impressed today by new technologies like Stryde nails because we don't know or we can't imagine at our level other methods that are surely better or even revolutionary.

A lot of work has been done to ensure that limb lenghthening ensure in good conditions but for long or very long term recovery, not much.


So you're right in saying that there's a lot of uncertainty about long-term recovery, but I really think it's more of the technology being used than the surgeon just applying the method to insert and remove the nail. What makes the patient more fragile in the end is the lengthening and not the insertion of the nail.

Only time will tell if patients using the latest technologies will have better long-term results than today's veterans who have mostly used external methods.

[dreamingtall]

You focus too much on the surgeons I think. Most of the limb lenghtening comes from 2 things: the technology used and the patient himself (objectives, physical characteristics, optimal stretching ...).

We are impressed today by new technologies like Stryde nails because we don't know or we can't imagine at our level other methods that are surely better or even revolutionary.

A lot of work has been done to ensure that limb lenghthening ensure in good conditions but for long or very long term recovery, not much.


So you're right in saying that there's a lot of uncertainty about long-term recovery, but I really think it's more of the technology being used than the surgeon just applying the method to insert and remove the nail. What makes the patient more fragile in the end is the lengthening and not the insertion of the nail.

Only time will tell if patients using the latest technologies will have better long-term results than today's veterans who have mostly used external methods.

I agree Tupac! I think anyone using Stryde has a very promising recovery possible. I really do believe that lengthening rate is pretty important here too... I think I may try to lengthen slower just to be safer.. I know it isn't ideal but considering the recovery time it might just make more sense

[TemakiSushi]

Already complications have been reported from Stryde LLers, one from the guy
did it in Turkey and then Giotikas couldn’t fix, other one from Singapore
Long term complications such as arthritis are not fixable by training if bones are misaligned, it’s totally doctors fault, not enough skilled doctors will fk up even with Stryde

[dreamingtall]

Already complications have been reported from Stryde LLers, one from the guy
did it in Turkey and then Giotikas couldn’t fix, other one from Singapore
Long term complications such as arthritis are not fixable by training if bones are misaligned, it’s totally doctors fault, not enough skilled doctors will fk up even with Stryde

Okay well Turkey is involved in horrible turmoil in the middle east(shouldn't be anyones first choice if you ask me). I have heard a big talk from you saying that doctors are so important but yet you make a point on the failures of the doctors you would never go to, nor would most. I'd like to know more about this patient and what type of complication was not fixable, is this person now handicapped? I am pretty certain Giotikas is more than capable of implementing surgical techniques to align bones and if needed, a successful bone graft.

I definitely am in the middle on the technology vs doctor argument... I do believe doctor choice is important but given the people doing stryde have a much different reality than external methods.

[TemakiSushi]

I wrote:

Long term complications such as arthritis are not fixable by training if bones are misaligned


http://www.limblengtheningforum.com/index.php?topic=64280.msg164727#msg164727

The guy wasn’t happy with Giotikas Reoperation
Check Giotikas X-rays of tibia cases at least on this forum
He doesn’t put thick screws to hold fibulas
It’s well known that the tibia surgery without these screws will leave some troubles with joints
Great321 one of his tibia looks bent and callus got C shape, after more than a year post op looks like there’s a dent
Jolien got something similar also
If Giotikas isn’t good at aligning bones then he may produce some troubles with femurs with prospective patients
Besides Giotikas telling patients that he put extra screws into heels for ballerina foot
Giotikas did extra surgery of foot flextor muscle extension to Zakika
Those surgeries should be avoided at any cost to protect soft tissues, ligaments and cartilages
These facts mean that he doesn’t pay much attention to PT to provide better prevention of contractures
Be aware of those detailed things before jumping into newly appeared doctors

There have been repeating histories of devastating experiences with doctors with not enough information
At least with Giotikas, there’re only a few diaries yet still there are enough red signs are put in the very short history of his cosmetic LL

[dreamingtall]

I can't speak for other people but I would say that it is likely Great321 underestimated the full scale of how difficult a tibia lengthening can and is for someone to recover long term. I think if you are going to do 2 segments, you lengthen the bulk in your thighs and then wait years before tibia's to ensure strength and stability. If ever I was to do tibia's, it would surely not be anything external and personally I think in regards to Giotikas, he is only guilty of presenting a two-step four segment surgical process which is twice as difficult/excruciating/life-changing appear to be a convenient package deal that is too close in proximity and double risky. While it's tempting for those under 5'4 to gain the MOST so quickly is a complete naive and disasterous miscalculation. I think the best thing to do is to take any of these surgeries as your one and only. I think you have to give your all to the femurs. The tibia's have two bones and you are asking for a rough time. I don't think it would be said that Giotikas has misaligned many femurs. Jolien also did external tibias and so both of them probably have more healing to undergo. These types of surgeries are of the past. I don't know why they are doing it but it could explain their complications. And I hope anyone reading this planning the surgery would 1. Stop doing anything external 2. Start with femur and put the bulk of your desired length there. 3. When and if you decide to do internal tibia do not go even a little bit over 4.5cm.

[PANDA:BEAR..]

I think it really depends on what surgery you do ? Tibia or femur lengthening...
How much you lengthen... and also the Doctors experience in this field..

[dreamingtall]

I think most people can get away with about 3 inches on femur. Recovery might be a tad longer but its so worth it. Tibia is