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Compendium of Outcomes

M
Medium Drink Of Water
Verified Member
Posts: 58
Joined: Oct 2013
Posted on Jan 7, 2016, 5:46 pm
#21
Quote from: Alittletooshort on January 07, 2016, 05:25:22 PMI don´t know if you have already answered this question in another thread but I´d like to know how your knees are doing besides the pain when kneeling on a hard surface?
Do you think that your patella is as strong as it was before the surgery? I´ve heard that the patella can burst when performing heavy exercises in the gym (heavy squats, leg press), that´s why I´m a little worried.
Would you do LON again if you had to make the choice again?

Besides kneeling on a hard surface being uncomfortable, nothing's wrong with my knees to my knowledge.  I'm not worried about my patella bursting.  I don't think the surgery does anything to weaken the actual patella.  But I haven't tested it out with hundreds of pounds on the leg press machine because there's no way I could lift that much anyway.  I'm not a big, strong guy.

I was forced into LON for reasons beyond my control (being rejected by Mitkovic and not being able to afford anywhere known to me but Beijing after that).  It wasn't my first choice.  I wanted to do external-only tibias because it's the least invasive method.  In retrospect, I could've/should've asked Dr. Xia to do external-only and stay at the hospital longer but I didn't think of it at the time.  They were offering a package deal with everything included for LON and it didn't occur to me to deviate from that.
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V
verlings32
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Posts: 279
Joined: Jan 2016
Posted on Jan 8, 2016, 8:29 am
#22
From Paley website:

"How much money should I keep in reserve in case of a complication?

Complications, although infrequent, can occur and may require surgery to treat and to prevent a negative outcome. An example is premature consolidation of the bone which requires re-breaking the bone. Another is nerve entrapment which requires nerve decompression surgery. Another is muscle contracture which requires lengthening of muscles, tendons, or fascia. Finally, there can be failure of bone healing after the end of the distraction phase requiring repair of nonunion. The cost to treat most of these complications ranges from $12–$35,000.  "

So it is not a matter if you get a complication or not, because if you do the procedure, you should be prepared that it can occur. It is a matter of how the doctor help you afterwards and follow up.
When choosing a doctor, you do the research of him (or her) and then you decide to invest in the procedure. The doctor is a human being, and allthough doing his best, things can go wrong of course. As a patient, you must want LL so bad that you are willing to take that risk, having your body operated on. If complications should occur, you must not panic, because you know this can happen, however, you should feel safe that your choice of doctor is so trustworthy you know he does his best to correct it and make the situation as good as possible!

Find a good person you trust.

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T
Thatdude950
Verified Member
Posts: 121
Joined: Oct 2015
Posted on Feb 5, 2016, 7:37 am
#23
Here's another post I found by Hanshi - he did something similar in 2014, going through each Betz diary.


QuoteI have read all the Dr.Betz diaries on old forum  and would like to share my findings:

There are currently 38 topics under the "Dr.Betz diaries" folder. 5 of them can't be used for this analysis: David-internal femurs, S-internal tiabias, Measurements, Nctham1, and Iwill. David cancelled his surgery, Nctham is not doing cosmetic LL and the other 3 don't contain enough information.
This leaves 33 cases, which is not a small sample and quite representative since these cases cover a long time span(over 8 years).

within this sample there are 12 patients  with confirrmed complications that required additional surgery:
1. Romegas (titanium replacement in 1 leg, reason unknown)
2. Tallix (titanium replacement in 1 leg due to delayed bone healing)
3. TibAndFemur (Nail bending)
4. Stillyoung (Nail bending/breaking)
5. Geheimes (Nail malfunction, bone rebroken and nail taken out and repaired)
6. Tall (Nail bending)
7. Badboy (Nail malfunction, nail exchanged, broken screw)
8. MasterHY ( wound opened and got infected, infected tissue removed surgically)
9. T.dot (nail malfunction twice. Twice nail replacement)
10. OldieButGoldie (2 broken screws)
11. Andrewshizzles (broken nail)
12. Apotheosis tibia (broken nail and delayed/non-union)

Further there are 5 diaries which end abruptly and have a high probability that the patient got a complication:

a. Timone (complains in his last post about bad bone consolidation)
b. Torontonian (vanishes very early during his lengthening)
c. Aymahano (has a lot of problems and vanishes)
d. NoSleep (vanishes just after finished clicking, was the 1st patient to use the new 11mm Betzbone)
e. DcLongFemurs (vanishes after finishing clicking, also has the 11mm Betzbone)

Are the others without complication? For my calculation i will assume so, but of course we cannot be 100% sure since we know that Other patients have tried to hide their complications. What's worth mentioning is that Lucky did have a nail malfunction. However she chose to stop lengthening at that point and therefore didn't undergo additional surgery. But she didn't reach her goal.
Also important is the vanishing of MasterHY. He had already a complication, but from his diary it is obvious that he has had a lot more problems. In my opinion he could very well have a dangerous bone infection.

Anyhow, due to the analysis we come to the following result:

Complication rate for Dr. Betz patients in our sample is between 36% and 52%. 36% is the best case scenario, 52% is the scenario where the 5 abruptly ending diaries all have had complications.
The real figure probably lies between both numbers in case some of those 5 didn't have complications.

I would recommend to read those diaries with open eyes. I have found some interesting information which seems to characterize Dr. Betz quite well. I will write about this at a later time.

I had listed "badboy" as having a good outcome, but only glanced through his diary. Looks like he had some complications along the way that I missed.
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T
TIBIKE200
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Posts: 378
Joined: Jan 2016
Posted on Feb 7, 2016, 1:44 am
#24
with which doctors the guys with the medicore and poor outcome did LL?
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V
Vendetta113
Verified Member
Posts: 440
Joined: Feb 2016
Posted on Feb 7, 2016, 1:57 am
#25
Quote from: TIBIKE200 on February 07, 2016, 01:44:15 AMwith which doctors the guys with the medicore and poor outcome did LL?

We need to know the amount lengthened and which segment, too. I think the ones with mediocre/poor results either went to the advertised doctors in the old forums or lengthened beyond the optimal length, or maybe did internals.

Too lazy to go through all of the diaries to check

BTW, KiloKAHN and bluebarbie's diary should be in positive outcomes. I guess Dozer too but he didn't finish his diary.
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T
texasbruce
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Posts: 48
Joined: Jan 2016
Posted on Feb 7, 2016, 10:35 pm
#26
Quote from: musicmaker on January 07, 2016, 03:59:36 PMI got that info from medical sources. I don't know if this person was a member of the forums.

I would not believe you sorry, unless you mention specifically the "source".

There was no life loss case ever in this surgery, even in China and Russia.
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T
texasbruce
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Posts: 33
Joined: Jan 2016
Posted on Feb 8, 2016, 1:00 am
#27
Quote from: musicmaker on February 07, 2016, 11:20:59 PMNo life loss case? Which are your sources? Some people have died as a result of this surgery and all doctors know about this. Some doctors have even described these disastrous outcomes in scholarly articles (e.g. Catagni). Paley is no exception to this. When you operate on many people some of them die. It's a matter of statistics.

I want to clarify that none of Monegal's patients has died (just in case...).

Yes people die in all types of surgeries, even the easiest ones. But I have yet to find a specific report of life loss of this surgery if you can link me to one.
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K
KiloKAHN
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Posts: 413
Joined: Sep 2013
Posted on Feb 8, 2016, 5:21 pm
#28
BilateralDamage "Big D" can be moved to positive outcomes imo, based on what he told me. As of January last year he said he was lifting weights, walking miles a day, and running on the treadmill.
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P
Penguinn
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Posts: 427
Joined: Jul 2015
Posted on Feb 8, 2016, 7:04 pm
#29
This is a very good idea. If it's not too much work, someone should list the patient, amount lengthened, doctor and diary.
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T
texasbruce
Verified Member
Posts: 23
Joined: Jan 2016
Posted on Feb 8, 2016, 8:11 pm
#30
Quote from: musicmaker on February 08, 2016, 01:43:28 AMOne of the most common causes of death during LL is fat embolism. Have a look at this (I am copying from a post by Kilokahn):

Some patients who visited Catagni confirmed this fact.

Secondly, Dr Monegal explained in some of his first posts that there had been some deaths happening as a consequence of fat embolism during LL:

Thirdly, there have been some cases of kids suffering from dwarfism who also died as a consequence of the procedure. Some of them have been mentioned in this forum. One person said the girl was a patient of Monegal, but she wasn't. She was a patient of a different doctor in Barcelona.

https://es-es.facebook.com/Justicia-para-claudia-452811688217408/

http://ccaa.elpais.com/ccaa/2015/04/13/catalunya/1428953407_417126.html

http://www.8tv.cat/8aldia/videos/uns-pares-reclamen-aclarir-la-mort-de-la-seva-filla-en-un-quirofan/

In Malaga there is another famous surgeon some of whose dwarf patients also died. 

And so on...

Read your quote...
This fatal outcome might also occur during limb lengthening, particularly in bilateral procedures. To our knowledge, fat embolism has not been reported with the use of centromedullary nail for limb lengthening.

Monegal said yes there are 3 cases of limb lengthening death, but they are all dwalfsm case and not cosmetic. Claudia did not die of surgical complication - her organs disappeared after the surgery
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