UNICORN - Dr. Guichet Internal Femurs 8cm - Summer 2016

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Very informative, and well based opinion, thank you!

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Thank you Unicorn, thank you for everything you have done for us all in this forum. Despite the trauma you have been through you still get back to us with new vital information. Thank you!

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Quote from: Unicorn888 on May 26, 2018, 10:32:09 AMAfter being a patient of the NHS (free public hospitals) in the UK, I realize that limb lengthening has been around for some time.  It was primarily used for trauma/accidents/deformities when one limb is shorter than the other.  Doctors use the Illizarov method (external frames) to lengthen the femur/tibia and even arms.

So, in the UK for example, the RNOH (Royal National Orthopaedic Hospital) even has a guide to limb lengthening using Precice, which primarily instructs patients not to lengthen more than 1mm per day (https://www.rnoh.nhs.uk/our-services/limb-reconstruction).  So now that I'm a patient there, I realize a lot of people do undergo limb lengthening, just not voluntarily or for cosmetic reasons like we do.

At the same time, if one has been plagued psychologically with short stature neurosis, the NHS and certain medical insurance companies actually approve and pay for cosmetic limb lengthening surgery.  Yes!  I never realized that too!  And many of us would have qualified seeing that short stature is something that would have affected us since our teenage years and would continue to do so for the rest of our lives.  It probably does determine a substantial part of our destiny too.  And hence, we find ourselves in this forum together.

So the only thing I can reply is, it has always been legitimate with the right doctor and monitoring.  I think it helps to follow organizations like the NHS which has nothing to gain by its choices of methods.  They use Precice because not only is it FDA approved but also because it causes less mental anguish/trauma (of clicking/racheting), even if not fully weight bearing until Stryde comes out.

At the end of the day, when you think about the argument that you need to bear weight on your bones for it to fuse or grow, it doesn't make much sense.  Anyone who's ever broken a bone knows that even if you had it in a cast and you're hanging there helplessly in a hospital bed for 2-3 months, your bones would still fuse and heal up.  So the weight bearing part is not a necessity for bone consolidation but a practical optionality for many of us to continue on with our lives including returning back to work.

And while full weight bearing is practical, it actually puts us at a higher risk of accidents/falling etc., which happened to many of my classmates and myself inevitably just because we're crutching/framing/climbing into taxis/up & down stairs/streets to physios, tests and other unnecessary activities on a daily basis without the safety of a wheelchair to lean on when fatigued/chaotic.

So, is it legitimate?  Yes, it has been for a long time.  You just want to know what to look out for, monitor your own progress closely and be accountable for yourself. 
NHS/RNOH showed me how their lengthening process is usually monitored :

• Many doctors prefer to wait 1-2 weeks post osteotomy/initial surgery before starting to lengthen
• Be cautious and do not rush (it's not a race!)
• Lengthen less than 1mm per day
• Depending on gender and age of patient (and smoking habit), they choose internal or external methods (Internal methods require reaming of your bones, so healing could be slower)
• Then, bi-weekly xrays need to show callus bridging and the lengthening rate thus changes depending on how fast or slow the bone consolidation is
• Use a nail that can stop and/or reverse in case of non-union/runaway lengthening
• And they do not allow too much lengthening if the soft tissues cannot keep up (like IT band, psoas, hamstrings and quads etc). because recovery to normal walking gait might take forever or further surgeries would be required

Thank you very much, Unicorn. That is indeed a fantastic reply. Thank you.

I was aware about the deformity and discrepancy correction aspect of LL. I know that due to LL, parents now have a choice of attempting that route rather simply having to amputate their baby's leg, in case they are born with fibular hemimelia. I know Paley treats case like those in his institute. I think prospective CLL candidates should stick with centers/doctors that work mainly with deformity and discrepancy correction, and do CLL on the side. It is very suspect — to me — when CLL seems to be the main area of interest of an orthopedic surgeon.

QuoteQuote from: On Fibular HemimeliaIn humans, the disorder can be noted by ultrasound in utero to prepare for amputation after birth or complex bone lengthening surgery. The amputation usually takes place at six months with removal of portions of the legs to prepare them for prosthetic use. The other treatments which include repeated corrective osteotomies and leg-lengthening surgery (Ilizarov apparatus) are costly and associated with residual deformity.

I've also heard doctors prefer doing limb shortening when limb discrepancies are small, but I am yet to confirm this with a professional of the area.

There are apparently emerging new routes for LL, grafting, and correction too. More on it.


Quote from: UnicornDoes this answer your 'legitimate' question?  My view is all cosmetic doctors are out to maximize profit especially those who manufacture their own brand of nails because they have the biggest profit margin to gain.  Hence, becareful of this conflict of interest, which is not 'legitimate' or legal in most countries.

Sad but true, even in the case of some of the best out there.

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Thank you very much for being so brave. People need to know that LL is complicated and there a lots of risks. You and Musicmaker are a good example of how things can go wrong. These surgeons should lse their license.
Good luck

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Most ortophedic surgeons do mainly reconstructive indication interventions (Paley is a clear exception, however despite his sales attitude he seems to be genuine in CLL, even Pili, however about Guichet I don't know too much), usually the number of CLL's is quite small (as eg. Birkholtz is doing 4-5 yearly, however he's been there for a while), and there is a healthy ratio between cosmetic-reconstructive indications (for instance in plastic-reconstructive surgery it is a professional status quo, that normally it has to be not higher than 1/3 - 2/3, but as we know the evolution of it lead to completely different direction). I still think in ortophedic surgeries the key is the initial assessment of each case (psych, physical), and the desire of the patient (how much exactly would someone to lengthen) comes second (the biology of the body determines everything, like it or not), plus the most advanced/secure method available. I'm manly talking about western medical field (Europe, US).

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The NHS and insurances will cover LL for psychological reasons? Does anyone have more information on that? I can imagine only people who are objectively very short (something like the bottom 5th percentile of height) will receive that privilege.

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Quote from: lostwing1993Quotethey dont use internal fixation ，first our government dont allow，second they did some internal fixation，find chinese bone size is not  suitable.

Some interesting words from the new diary by Chinese user lostwing1993.

People with thinner bones need to be made more aware they're a riskier group for internals (possibly also externals - I'd have to confirm this with a CLL doctor that can be trusted). The doctors never seem to tell you that. Instead, some of them only seem to try to drag you into doing the surgery.

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Quote from: myloginacc on May 31, 2018, 12:59:30 AM

Some interesting words from the new diary by Chinese user lostwing1993.

People with thinner bones need to be made more aware they're a riskier group for internals (possibly also externals - I'd have to confirm this with a CLL doctor that can be trusted). The doctors never seem to tell you that. Instead, some of them only seem to try to drag you into doing the surgery.

CLL docs rarely turn away a potential client.  For East Asian/Chinese lengthening especially female ones, here're what I learnt (fact or fallacy) :

1)  Femurs tend to be more curved (that's why companies like Precice have a range of internal nails w different curvature)

2)  Bone consolidation in East Asians tend to be slower (compared to South Asians for example)

3)  When an internal method is chosen, bones might consolidate much slower due to the reaming process which makes an already small bone even thinner and thus, a higher risk of fracture due to thin cortices

4)  The appropriate diameter size of nail should be inserted (for example, Precice's largest nail is only 12.5mm) whereas we were all given 13mm

5)  Precice nails also come in antegrade and retrograde whereas our g-nail was only available in one direction, hence, could be a root cause of my valgus/knock knees

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Hi everyone,

Writing from the hospital bed.  Was admitted on Wednesday 7pm and was given a 2-hour heads up.  Don't even want to think what a 'free bed' entails, someone flatlining or happily discharged?

Checked-in, was shocked by how posh the ward is.  I have a private room, private bathroom, 24/7 room service menu, air-conditioning, cable tv, balcony, sparkling water, gourmet coffee and even a sofa bed for friends who are entitled to meals too.

Was extremely nervous the next morning at 6am when they asked me to shower with Hibi Scrub.  I spoke with the surgeon 3 times before we finally prepared for the operating theatre.  She wanted to release both IT bands, do a bone graft with DBX on my right leg, take a biopsy of the non-union area AND wanted to lengthen/release my psoas and hamstrings.  I vehemently didn't want cuts on my hip areas and my hamstrings because I know my recovery will take so much longer.  Imagine, I wouldn't even be able to sit up in bed if both hips were cut.

Right before surgery, the surgeon came in with a panel of doctors because apparently, I'm an 'interesting case' of ALL THE THINGS that can go wrong with CLL.  So my operating theatre was like an auditorium and I swear I caught a whiff of buttered popcorn.  All my xrays were up on the walls and I was trying to explain to these doctors that I didn't want to cut my hips and hamstrings because my lordosis can be slowly stretched out.  And if I take too long to recover from the additional cuts, I would lose 2 years of conditioning, stamina, flexibility and pain tolerance.

Anyway, boom, under general anaesthesia and I was told later that they bent me in all directions and discovered that I had a sac of fluid in my left knee.  That got drained and was probably the cause of my chronic knee pain.  They then released the IT bands on both sides which allow both my legs to stay together.

I woke up around 5pm and was in quite a lot of pain.  I think half of my suffering was due to the sheer trauma and PTSD of undergoing my 4th surgery.  After that, everyday just blended into each other, eat, wash, PT, I crutch a lot around the hospital and have a ton of medical students/doctors who come to interview me about how I ended up a monster.

Apparently, I won't know if the bone graft will be successful for another 2 months.  In the meantime, I'm put on some rigorous stretching exercises to correct my lordosis and valgus.  The surgeon is pessimistic that the bone graft will work, all of them agree that they could see the nail and nothing has grown.  So they think I'll be back for a 5th surgery where they'll remove my g-nail and insert a pre-lengthened Precice Unyte at 8cm.  They'll slowly shorten me until my calluses join and then lengthen me back to match the 8cm on my left leg.  And hopefully, the extra 2cm of flesh will slowly tighten back.

I found Kings College/NHS to be so different from my previous private Princess Grace Hospital experience.  Guichet was constantly trying to get us to leave the hospital ASAP whereas here, they want to keep for at least 2-4 weeks to monitor any potential bone infection.  I'm also given proper painkillers like morphine instead of just a paracetamol drip.  Also, at Princess Grace, they left me for 4 days without showering/cleaning me whereas even though I was quite hopeless here during the first few days, they came and wiped me down entirely with soap and warm water every morning. 

Even the pee situation is different.  At King's College, everytime I pee into a funnel, they'll check my bedsheets and they'll change my entire bed whereas at Princess Grace, they simply put an incontinence diaper on the bed and told me that I can pee as much as I wanted on it because it will absorb everything (right!).  And I woke up marinating in a pool of urine with a very itchy butt rash.

I was told by all the patients that, it's really hard to get a bed at NHS and that, while it's free, one has to contend with the waitlist.  I had to wait about 6 months before I got a surgery date.  However, because they're non-profit, they don't cut corners.  Whereas my experience with Princess Grace and Guichet have been the complete opposite.  Everything was calculated to the 9th degree, was disorganized and we risked and suffered a lot because we had to catch taxis, and frame hop to the gym everyday and all the various test centres which are strewn all over London.

Here, the PT comes to work out with you, the nurses come to you to collect urine/blood samples, I'm wheeled to the xrays/CT Scans/MRIs, my dressings are checked and changed daily etc.  There is no unnecessary stress and cost.  I really wish I had this experience before.  No wonder I was sooooo petrified to go under the knife.  What I endured before was cruel and inhumane.  And now, my hospital experience couldn't be more different and best of all, it's free.  For this, I am eternally grateful.

HIDING UNDER SHEETS BEFORE SURGERY

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I bet they will put you together sooner on later just hang on and stay positive! Modern medicine is absolutely miracle so stay strong and keep listening to them