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[ChrisIsaak]

A while ago, before I began my LL journey as a patient, the information I received about LL had been from personal doctor consultations (Dr.Paley, Dr.Guichet, Dr.Inan, another Turkish doctor face to face, other doctors including Dr. Rozbruch by email) and from old forum , starting from the days of old forum A and years before SysOP.

While Dr.Paley does not prefer to use LON/LATN in cosmetic cases, I have seen many achondroplasia patients/children/other non-cosmetic patients at the rehab center at St.Mary's Medical Center with frames around their legs, including femurs. My physiotherapist, who has worked with (trained under) Dr.Paley in Baltimore has confirmed that he has treated hundreds of successful cosmetic lengthening cases with the intramedullary nails, both regarding the tibia and the femur.

The old forum  board strongly advocates against intramedullary/external lengthening in femurs, and advocates only internal methods for the femur. Crazy+6's case is presented as the ultimate example of "Why not to do external lengthening in the femurs". However, the lengthening, or as Crazy calls it, "The LL Nightmare", was done in India by Dr.Sarin, a doctor who now the old forum  board strongly advises against, and was placed on the "Doctors that I do NOT recommend" section.

A couple weeks before my LL surgery, the other Turkish doctor I met (NOT Dr.Inan, who has done Fitbone, Precice, and ISKD internal lengthenings in the past) told me that he preferred the classical approach" - he only used frames for lengthening, including femurs. SysOP and Crazy immediately warned me NOT to do this. (SysOP also offered to send me the Betzbone if needed, but I don't want to debate much about that..At the moment let me briefly say that I don't have a good impression of Albizzia equivalent-nails with ratcheting mechanisms).

After SysOP and Crazy telling me not to even think about doing LON on my femurs, I met an American patient in Istanbul, who recently had his THIRD LL SURGERY done (First one on femurs with Dr.Mitkovic, second one with Dr.Yasser in Egypt, third one in Istanbul, femurs for the second time with the OTHER Turkish doctor I previously mentioned). I could tell that he was suffering a lot. He was mid-30's, a doctor himself, and was doing LL all by himself, with no one to help him. He mostly did 2-3 cm's and had to leave, returning to the United States. At that time, I connected the dots, like anyone else would do, saw this patient's terrible condition, blamed the doctor, blamed the external frames on the femurs, and felt grateful to SysOP/Crazy for the advice.

Today, when I mentioned this patient to my physiotherapist, he knew who I was talking about. He had visited him once, saw his terrible condition, and was struck with confusion when I told him that the doctor directed me to see him (as an example of a patient). He said "Really? He sent you to his worse patient although he has many, many good cases?" I found out that the other Turkish doctor I blamed is quite competitive as well (though I still wouldn't go to him), he probably made a big mistake by admitting this patient for his THIRD LL surgery, a patient who obviously had psychological problems, had no one taking care of him, was a good guy as far as I knew him, but seeing his condition was indeed a sad sight. I also learned that this patient had medication addiction problems. (Not surprising, considering that doctors have easier access to medication).

Firstly, I apologize from this patient for sharing his story. I don't know if he still follows these forums, I haven't shared any personal information that would make him vulnerable or put him in a risk of being exposed. If you're reading this, I hope you're fine buddy.

Back to the main topic... Now that I've heard about many successful lengthenings with LON on femurs as well, I doubt that what we read on forums by patients are entirely believeable. My conclusion is that we should ask doctors regarding their opinion on LON/LATN on femurs (how about starting with Dr. Lee? He seems very responsive) and my final opinion on this matter is "It's been done. It's being done. It's possible. And safe, under the guidance of a good doctor."

Before you start bashing, think of how many people you know personally, or have heard about, who have lengthened with LON on femurs and had a bad outcome.

There are several parameters regarding this debate, for instance, you could have seen a terrible case in India, but how competent was the doctor? Was the PT care sufficient? How much did you pay? Remember that you're paying around $20,000 in India and close to $50,000 in Turkey, or in Korea. So is the quality of service you get is the same? I don't think so. Should we then blame the technique, or the doctor? My final opinion is weighted on the latter.

I'm open to discuss it with SysOP/Crazy on the old forum, but I need someone to convince me about why LON on femurs is a terrible idea. Not that I'm going to do it -I'm already doing internals- but for pure medical speculation/open debate.

[handy]

(SysOP also offered to send me the Betzbone if needed, but I don't want to debate much about that..

What does this quote mean? It's not a debate just please explain the details of what you mean.

[ChrisIsaak]

What does this quote mean? It's not a debate just please explain the details of what you mean.

I was made able to access my old forum  inbox once again recently, but that message isn't there at the moment, it's probably erased, unfortunately. Yes, SysOP did PM me a couple weeks ago before my LL surgery.

I recall it was something like "Maybe I can send the Betzbone to Turkey" or something of that sort, which makes it believable for me that SysOP really did invest in the Betzbone. It's not 100% proof or anything, it's just a hint though.

I honestly don't hate the man. I don't approve of everything that he did, such as censorship, disabling PM's, banning people and the such, but at the end everyone makes their own decision with their doctor. I know many people here are mad at SysOP for promoting an underqualified doctor such as Dr.Sringari, but I never really considered India as an option unlike most LL'ers, so I mostly chose to stay out of the Sarin-Sringari drama.

Carter kindly asked me if I supported SysOP simply because I write my diary on the other website also. The answer is simple - I don't support anyone, frankly. I'm sort of a lone wolf. I've seen such terrible things in my life that I'm a bit indifferent to the whole old forum -SysOP drama. I just care about my own business. Writing a diary is mostly a catharsis. A way of relief for the LL patient.

[Medium Drink Of Water]

Beijing doesn't like the all-internal devices.  I heard rumors that they tried a few Fitbone cases and the devices broke down, so they scrapped the whole idea and just kept doing LON.  Also, like you mentioned with Dr. Paley, for corrections the external frames are always going to be better due to their customization potential.  If any misalignment happens, it can be fixed by doing uneven lengthening on one side of the leg until the bone is straight again.

This is a clinic with a lot of experience and a proven track record of success.  If they offer LON exclusively, I agree that external femurs should be a debate and not a settled issue.

I only know one patient who got his femurs done there, and he said it was agonizing.  But he got them done.  The agony is now over and his femurs are now longer.  And he got it done for a low price without having to go to a questionable clinic.

[Doflamingo]

My guess is doing LON or LATN with any good doctor is perfectly safe.

[Sweden]

My guess is doing LON or LATN with any good doctor is perfectly safe.

It's not.
You will get messed up for life.

[Carter]

It's not.
You will get messed up for life.

Why? Are you saying everyone who does LON or LATN will be messed up for life?     

[crimsontide]

seems like a few here have done lon and are fine, though I'm a little wary

[GROWtalORdieTRYING1]

some doctors say that there is a percentage of patients that get knee issues for LON tibia due to the insertion of the internal nail through the patella.

are their any soft tissues that get cut (for LON femur) to insert the internal nail?

for some reasons some doctors only like to do pure external and not lon, there was a thread discussing this for a doctor from india, I cant find it right now because I am on dial up.

[Taller]

You asked how many people I know who did LON/LATN femurs and then got screwed up? Well, the answer is none. The problem is that I don't know anyone who had a good outcome doing it either. I've only heard mention of such people twice for cosmetic cases (Sweden's roommate and The guy MDOW mentioned).

The problem is that we don't have a large enough sample size to make any judgements about LON femur just based on the information available on the forums. We'll have to do some more digging off of the forums and try to meet with Drs. and current/former patients to get a better sense of what LON/LATN femurs is like.

[crimsontide]

if  doing lon femurs and the pain was extreme... id just pop tramadol everyday for 1 month.... problem solved

[TRS]

You asked how many people I know who did LON/LATN femurs and then got screwed up? Well, the answer is none. The problem is that I don't know anyone who had a good outcome doing it either. I've only heard mention of such people twice for cosmetic cases (Sweden's roommate and The guy MDOW mentioned).

The problem is that we don't have a large enough sample size to make any judgements about LON femur just based on the information available on the forums. We'll have to do some more digging off of the forums and try to meet with Drs. and current/former patients to get a better sense of what LON/LATN femurs is like.

I feel that the reason why so many people who undergo external femurs do not write up a diary is because the forum is anti-exfix.femurs. The patients fear of being judged and wrongly treated by the members. A good example is Disobedient. She had to endure so much attack because she chose exfix femurs and quadrilateral lengthening. Generally if it's outside the LL norm (e.g.quadrilateral lengthening, cross lengthening, unilateral tibia+femur and exfix.femurs), then people would feel quite reluctant to post a diary.
I think that the complications of exfix. femurs is over exaggerated. Pain and discomfort in a normal CLL patient is generally the main reason why doctors discourage femur exfix when they have the option of internal nails. Plus the lower chances of developing contractures. But then again, as MDOW stated, LON/LATN femurs does get the job done but at the expense of more pain and discomfort.
If I had really considered exfix femurs, then I'd look into monorails and not the Ilizarov frames. I can't imagine myself being in those frames for several months
The best thing for people who are considering exfix.femurs is to go and get the doctors opinions.
 

[Greek-Semidget]

I feel that the reason why so many people who undergo external femurs do not write up a diary is because the forum is anti-exfix.femurs. The patients fear of being judged and wrongly treated by the members. A good example is Disobedient. She had to endure so much attack because she chose exfix femurs and quadrilateral lengthening. Generally if it's outside the LL norm (e.g.quadrilateral lengthening, cross lengthening, unilateral tibia+femur and exfix.femurs), then people would feel quite reluctant to post a diary.
I think that the complications of exfix. femurs is over exaggerated. Pain and discomfort in a normal CLL patient is generally the main reason why doctors discourage femur exfix when they have the option of internal nails. Plus the lower chances of developing contractures. But then again, as MDOW stated, LON/LATN femurs does get the job done but at the expense of more pain and discomfort.
If I had really considered exfix femurs, then I'd look into monorails and not the Ilizarov frames. I can't imagine myself being in those frames for several months
The best thing for people who are considering exfix.femurs is to go and get the doctors opinions.

I have talked to doctors and most of them (in Russia don't use monorails) and say illizavor is so uncomfortable and they are right....Lets just find a good monorail doctor like mitkovic

[TRS]

I have talked to doctors and most of them (in Russia don't use monorails) and say illizavor is so uncomfortable and they are right....Lets just find a good monorail doctor like mitkovic

Best of luck in getting a reply from him. I believe he would be a very good option and offers LL at a reasonable price. Another doctor that specialises in monorails is Dr.Bai Helong in China. But he is bloody expensive