Compendium of Outcomes

This surgery definitely is 50/50. I remember looking at this topic a while back and thinking just how risky this surgery is.

Also, a lot of the people that had poor outcomes were the people who went with bad doctors.

@Thatdude - Do you know who his doctor was and how much he lengthened? That sounds really scary. How's he now?

His diary is on the old forum - he used Betz and did 8-9cms.

I'd put myself in the neutral category to be honest. While there have been lots of problems during the journey, saying the outcome is bad is misleading.

The good:

Data is available from real people who have undergone this procedure and have willingly shared their experience.

The bad:

It's a limited sample set with a lot of variability. Realistically, most people that go through this procedure don't post or keep a diary. I met several folks going through CLL who have zero intention of sharing their experience. Add to that the hundreds, perhaps thousands that churn through the hospitals in China and India who undergo CLL for social reasons particular to their society. They would never dare reveal that they've had CLL, much less the outcomes, and that's a big number of patients.

How the good can help:

Correlate the data that's available with
- surgeons
- type of procedure
- segments operated on
- amount lengthened

to see if trends can be identified, even with a limited sample set (others have asked for this as well)

Caveat Emptor:

This is not a scientific study, and while good intentions are assumed on the part of the folks who share, the data can (again, read best intent first, but realize it's possible) be misleading, false, inaccurate for whatever reason, etc. Take into consideration different time frames for the procedure, various ages and states of health/physical fitness, etc.

IMHO and my .02.

Best,

--jbc

You shouldnt mix complications along the way (like programdude's and anderwiezeld or however you spell it) with bad outcomes. Outcome is the end result... If the end result is good than everything's good.

 For example, the Israeli I posted about abotu a year ago who did 9cm on femurs with betz said on a radio interview in Israel that both his nails broke (on different dates) so he had to fly 2 times to Germany to get things repaired. He also did a corrective surgery in Israel once lengthening was done. But the end result is that he is completely happy. His outcome from a personal perspective should be put on "good". But according to the list here his outcome would have been bad.

Also, it depends on what you base a good or bad outcome... A return to 100% pre-op capabilities in everything? That would mean no good outcome is possible... A good outcome in my opinion is when a sane LLer says "If I could go back and cancel the surgery, I wouldnt cancel it since i am happy with the end result".

 If someone is willing to sacrifice functionality to a certain degree it's their right (since there is no chance to a complete 100% athletic recovery)... Also, what one might consider an acceptable athletic recovery wont be acceptable for another.

^ Well put. If someone before I got LL said for a matter of fact: "Your outcome is going to be a bad outcome." I would have opted out of the surgery. However if they said "It's going to take longer to recover than you expect and you'll have a stress fracture" I wouldn't have the same reaction.

Also, great point about what is considered good outcome. No one is getting back to 100% after all.

we need to add heythereworld - or what his name is . who is back to 95 % normal


also i think it would be great to write how many cm people on the list have done. and there dr.

Very informative thread, with a lot of good posts.

It really would be great to have a dataset of lengthening, doctor, segment, interior/exterior and the outcome or possible complications.

The list should be updated. Consider all data. I have some information.