Topic: Compendium of Outcomes (Read 74787 times)

Thatdude950 · « **Reply #62 on:** June 08, 2016, 11:51:08 PM »

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

programdude · « **Reply #63 on:** September 16, 2016, 12:54:24 AM »

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.

jbc · « **Reply #64 on:** September 16, 2016, 07:41:44 AM »

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

TIBIKE200 · « **Reply #65 on:** September 16, 2016, 03:50:53 PM »

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.

programdude · « **Reply #66 on:** September 16, 2016, 05:08:38 PM »

^ 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.

jojo · « **Reply #67 on:** March 28, 2017, 10:20:46 PM »

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.

Dreamer94 · « **Reply #68 on:** May 21, 2017, 06:56:02 PM »

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.

Datum · « **Reply #69 on:** June 21, 2017, 07:17:42 PM »

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

Four Inch · « **Reply #70 on:** August 30, 2017, 09:32:24 AM »

This is a terrific idea! A good start to providing useful information for those contemplating surgery.

I would prefer that the one compiling the information refrains from classifying the outcome as good to poor unless specifically stated as such by the diary author or made obvious by the authors final comments. Objectivity makes this information much more valuable in my opinion. Obviously, there are some outcomes that would be considered poor or disastrous to anyone. However, in many cases, what is a considered a positive outcome for some would be classified as unacceptable to others and likewise.

kakahi · « **Reply #71 on:** September 13, 2017, 06:37:14 AM »

Bumping this post because we really need to update this. Also as a relief from less important trolls

Thatdude950 · « **Reply #72 on:** November 26, 2017, 01:32:50 AM »

Quote from: Four Inch on August 30, 2017, 09:32:24 AM

This is a terrific idea! A good start to providing useful information for those contemplating surgery.

I would prefer that the one compiling the information refrains from classifying the outcome as good to poor unless specifically stated as such by the diary author or made obvious by the authors final comments. Objectivity makes this information much more valuable in my opinion. Obviously, there are some outcomes that would be considered poor or disastrous to anyone. However, in many cases, what is a considered a positive outcome for some would be classified as unacceptable to others and likewise.

That's a fair point. To counter that I've had moderators move outcomes from one section to another when there are disagreements with my assessment-- especially from the lengthener in question, so this removes part of my bias.

The positive of setting it out this way though, is that it gives a good overview that anyone can just glance over without having to delve deeply into the results.

& I agree that it's time for some updates-- anyone can post a brief overview of a diary if they'd like, it doesn't have to be me.

insearchofanswers · « **Reply #73 on:** February 17, 2018, 02:49:11 AM »

update compendium

backrandom · « **Reply #74 on:** February 17, 2018, 03:12:22 AM »

we need an update for sure

Honore · « **Reply #75 on:** February 17, 2018, 11:45:34 AM »

Great work, thx bro ... But even the most complete list, evaluated with the most advanced statistical tools , will not stop most of us doing this surgery or really help us find the right doctor for our operation. We should never forget that this is a very risky operation but that most of us cannot live with being short...

Optimistic1 · « **Reply #76 on:** February 20, 2018, 09:10:45 AM »

Thatdude950,

Thank you for putting the stats together. I just had my bilateral Tib/Fib operation with Dr. Mahboubian in CA. I’m doing my bilateral Femurs next month. He has done a dozen of these (stage surgery) so I hope to share my experience with everyone. Can you create a journal for me so I can start writing? If you can’t, can you point me to the right person? Thank you.

I’ve been sharing my experience on the old forum but the site is not that active. Thank you very much.

Optimistic1

Android · « **Reply #77 on:** February 20, 2018, 09:19:50 AM »

Quote from: Optimistic1 on February 20, 2018, 09:10:45 AM

Can you create a journal for me so I can start writing? If you can’t, can you point me to the right person?

You should be able to make a new topic yourself. Go to the right section and look for the New Topic button near the top right.

Optimistic1 · « **Reply #78 on:** February 21, 2018, 12:48:49 AM »

“You should be able to make a new topic yourself. Go to the right section and look for the New Topic button near the top right.”

Hi Android,

Thank you for replying to my question. Is it possible that you take a screenshot of that section where you referred to and send it to me lexuslflc500@gmail.com? It’s either me or the pain meds, but I can’t seem to locate that option.

I just finished my bilateral Tib/Fib procedure about 5 days ago (2.15.18). My bandages are already off and I’ll be lengthening this Friday. The process wasn’t that bad. I hope doing my femurs which is scheduled for next month is going not to be be too bad. I read LAGrowin’s journal and looks like he’s been through a lot with his femurs. He’s a great guy and I got to talk to him before his surgery. Maybe it was easy for me because I did the Tib/Fib not Femurs. However, my procedure involves breaking 4 bones, not just 2. I’ve been in the hotel room taking care of myself fine. I excused my private nurses only after 2 days. Hopefully, it will continue to be this good onward.

Optimistic1

Android · « **Reply #79 on:** February 21, 2018, 07:43:02 AM »

Hey Optimistic, sent you a PM so you get this, but here it is for others to see if it helps too:

Optimistic1 · « **Reply #80 on:** February 23, 2018, 04:24:37 AM »

Thank you very much, Android. I got it.

Optimistic1

jojo · « **Reply #81 on:** February 23, 2018, 06:31:28 AM »

Is Anyone working on this ?

OverrideYourGenetics · « **Reply #82 on:** June 12, 2018, 08:31:41 PM »

Quote from: jojo on February 23, 2018, 06:31:28 AM

Is Anyone working on this ?

I could add my outcome over time, and those of several other Paley patients I know (e.g. Purushrottam - great outcome), but there are some problems with compiling outcomes here in this forum (and in general):

Technology improves. The outcomes from STRYDE patients should be a lot better than those from PRECICE 2.2 patients. This will make a number of diaries obsolete.
This particular forum doesn't allow the person compiling outcomes to update a post. Thus we'll end up with more and more posts in this thread as time passes by and patients move through stages (surgery -> lengthening -> consolidation -> walking -> sports -> nail removal). I've proposed to Admin that we upgrade the forum, but got no reply. The upgraded forum would allow editing posts, and also making them wikis, so anyone can edit, not just one person who started the thread.

totallyred · « **Reply #83 on:** July 13, 2018, 08:25:04 PM »

Moderators, this is serious. Neither are you commenting neither taking action on the above points. This is like you are playing with the lives of future LLers by making them unable to make the most out of the information posted here. Please comment(and if possible take actions or tell why the following is not possible):
-upgradation of the form as provided by OYG
-why spreadsheet kind of data of of former and current LLers can't be uploaded.
-why are you not commenting on any suggestions to improve the forum?
-are their any financial or technical constraints? If yes please share with us so that we can crowdsource the solutions for the same.
Hoping to get a fast reply this time.

emanuel · « **Reply #84 on:** August 21, 2018, 06:18:02 PM »

Quote from: Thatdude950 on January 05, 2016, 11:19:16 AM

Poor outcomes:
[Emanuel- Serious complications, multiple corrective surgeries, loss of functionality
[
[

The word "outcome" is quite misleading as it is all a big and yes for some long process, and "outcome" indicates a final result.
I am definitely doing well now. Doing everything normally and doing sports every week. Having beaten players in tennis lately that are better than I was pre-LL.
When the bone is there, everything else will come back as well. Unless some serious stuff like nerve damage has been done.

The list should be updated and corrected for sure.

taller_in_Kiev · « **Reply #85 on:** August 21, 2018, 09:37:50 PM »

Quote from: emanuel on August 21, 2018, 06:18:02 PM

The word "outcome" is quite misleading as it is all a big and yes for some long process, and "outcome" indicates a final result.
I am definitely doing well now. Doing everything normally and doing sports every week. Having beaten players in tennis lately that are better than I was pre-LL.
When the bone is there, everything else will come back as well. Unless some serious stuff like nerve damage has been done.

The list should be updated and corrected for sure.

Hi Emanuel. I concur with that) But if it's outcome, I'd say I had a good one and I'm not even on the list, so definitely out of date!

Good to hear you're doing sports and playing tennis. Tennis was my youth pretty much, probably what got me thinking about LL. I always thought if I was just a couple of inches taller, I'd have a much better serve. These days I don't play so much, but I follow the major tournaments and I'm a big Roger fan. You must be a Rafa fan with a Spanish sounding name). Disappointed Roger lost to Novak at Cincinnati but Roger wasn't in form, too many unforced errors. No chance in current form at US open.

emanuel · « **Reply #86 on:** August 22, 2018, 07:38:46 PM »

Quote from: taller_in_Kiev on August 21, 2018, 09:37:50 PM

Hi Emanuel. I concur with that) But if it's outcome, I'd say I had a good one and I'm not even on the list, so definitely out of date!

Good to hear you're doing sports and playing tennis. Tennis was my youth pretty much, probably what got me thinking about LL. I always thought if I was just a couple of inches taller, I'd have a much better serve. These days I don't play so much, but I follow the major tournaments and I'm a big Roger fan. You must be a Rafa fan with a Spanish sounding name). Disappointed Roger lost to Novak at Cincinnati but Roger wasn't in form, too many unforced errors. No chance in current form at US open.

Actually Emanuel is just my fake name for LL

But you guessed right about Rafa, it's my favourite player.
When playing tennis my stamina is still worse than pre LL. Running speed feels fine, though I haven't measured it. I hope it will all come back 100%, planning to play league games and tournaments again next year.
Service feels somewhat easier with the extra height (better angle), especially as I had been very short before.

How about your stamina when doing sports, is it back to 100%?

taller_in_Kiev · « **Reply #87 on:** August 22, 2018, 08:22:26 PM »

Rafa is the undisputed king of clay! 11 f***ing French opens! How??! I didn't like him in the beginning, but I have a lot of respect for him now.

I'd say my stamina was as good as if not better than before? I ran for half an hour yesterday and hardly ran out of breath. The only think that's lacking is flexibility around the hips, but that's because I haven't worked at it so much.

Don't forget you're not fully recovered yet. You still have rods inside! Once you take those out, then the real recovery begins as your bone marrow fills up again as well as any holes from screws etc. Your bones will get stronger and you'll feel better as time goes by. When are you planning to come to Kiev? I have to return to the UK in the first week of September, sadly my father is very ill, but I may return later, I'll see.

ramaka · « **Reply #88 on:** August 22, 2018, 08:41:03 PM »

Quote from: taller_in_Kiev on August 22, 2018, 08:22:26 PM

Rafa is the undisputed king of clay! 11 f***ing French opens! How??! I didn't like him in the beginning, but I have a lot of respect for him now.

I'd say my stamina was as good as if not better than before? I ran for half an hour yesterday and hardly ran out of breath. The only think that's lacking is flexibility around the hips, but that's because I haven't worked at it so much.

Don't forget you're not fully recovered yet. You still have rods inside! Once you take those out, then the real recovery begins as your bone marrow fills up again as well as any holes from screws etc. Your bones will stronger and you'll feel better as time goes by. When are you planning to come to Kiev? I have to return to the UK in the first week of September, sadly my father is very ill, but I may return later, I'll see.

How much did you lengthen bro and was it both femurs and tibia or just one segment, glad to hear athleticism is still good after surgery

taller_in_Kiev · « **Reply #89 on:** August 22, 2018, 08:44:23 PM »

Quote from: Racurz on August 22, 2018, 08:41:03 PM

How much did you lengthen bro and was it both femurs and tibia or just one segment, glad to hear athleticism is still good after surgery

I put a cm for each French open Rafael Nadal won - that b@stard! (femurs only)

ramaka · « **Reply #90 on:** August 22, 2018, 08:48:13 PM »

Quote from: taller_in_Kiev on August 22, 2018, 08:44:23 PM

I put a cm for each French open Rafael Nadal won - that b@stard! (femurs only)

Wow big amount so would you say your fully recovered and if so how long did it take on your recovery, do you have a diary?

taller_in_Kiev · « **Reply #91 on:** August 22, 2018, 09:06:10 PM »

Diary (some gym clips on page 2):
http://www.limblengtheningforum.com/index.php?topic=9000.0

More photos:
http://www.limblengtheningforum.com/index.php?topic=9023.0

ramaka · « **Reply #92 on:** August 22, 2018, 09:18:37 PM »

Quote from: taller_in_Kiev on August 22, 2018, 09:06:10 PM

Diary (some gym clips on page 2):
http://www.limblengtheningforum.com/index.php?topic=9000.0

More photos:
http://www.limblengtheningforum.com/index.php?topic=9023.0

No problem thanks

Limb Lengthening Forum

Author Topic: Compendium of Outcomes (Read 74787 times)