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

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Quote from: Unicorn888 on June 29, 2018, 07:10:44 PMI think perhaps one regulation that's out there for CLL is Precice, right?  It's FDA approved which is quite a rigorous process to get through.

Correct. This is the FDA approval for STRYDE. Though the European Medicines Agency should have something to say about the Guichet and Fitbone nails, I have no idea if they have been through any sort of approval process.

Quote from: Unicorn888 on June 29, 2018, 07:10:44 PMI'm in no way a promoter or sponsor of Precice but I'm just saying that Stryde will revolutionize LL forever.

Every case CAN be with less trauma, suffering, pain and non-union if :
-  Stryde is used (no more torturous manual clicking / weight bearing maintains muscle mass)
-  Callus formation is priority (nail reversal and stopping if bone consolidation is at risk)
-  Lengthening rate is monitored closely
-  Proper soft tissue stretching techniques are diligently followed from Day 1 (quads, hips, hamstrings, IT band)
-  Adequate painkillers are used

Then one day, CLL will really become a common goal for everyone.  Baby steps but we're getting there, all of us in this forum, sharing and learning from each other.

Agree with all of the above. Regarding painkillers, I do hope cannabis will be incorporated in the regimen, so patients can have an alternative to opioids.

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Unicorn, do you happen to know, or have any insight, as to how limb lengthening is done within the NHS?

Their process seems different from cosmetic, external fixator doctors. In this instance, it seems the NHS doctors would lengthen 4.5cm (~1.8in) over 2 years, doing an osteotomy on the bone twice rather than just once. At least, that's what I gathered from the main post. I wonder if it's supposed to be safer this way?

I hope you've been well.

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Quote from: OverrideYourGenetics on June 29, 2018, 08:18:41 PMCorrect. This is the FDA approval for STRYDE. Though the European Medicines Agency should have something to say about the Guichet and Fitbone nails, I have no idea if they have been through any sort of approval process.

The EMA does not control medical devices. For approval of medical devices there is no agency in Europe. To get the CE approval the manufacturer hires one of many so-called notified bodies, which are private companies and treat the manufacturers as customers. These companies then check, whether the paperwork from the manufacturer is correct. After getting the approval for the paperwork the manufacturer can put the CE marking on his product.
Most people are unaware of this. The EU is very strict with regulations about the curvature of cucumbers and bananas, but for medical products the manufacturers basically only control themselves.

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Quote from: hanshi on July 03, 2018, 02:14:22 PMThe EMA does not control medical devices. For approval of medical devices there is no agency in Europe. To get the CE approval the manufacturer hires one of many so-called notified bodies, which are private companies and treat the manufacturers as customers. These companies then check, whether the paperwork from the manufacturer is correct. After getting the approval for the paperwork the manufacturer can put the CE marking on his product.
Most people are unaware of this. The EU is very strict with regulations about the curvature of cucumbers and bananas, but for medical products the manufacturers basically only control themselves.

Thanks for the information.

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Quote from: myloginacc on July 03, 2018, 01:21:12 PMUnicorn, do you happen to know, or have any insight, as to how limb lengthening is done within the NHS?

Their process seems different from cosmetic, external fixator doctors. In this instance, it seems the NHS doctors would lengthen 4.5cm (~1.8in) over 2 years, doing an osteotomy on the bone twice rather than just once. At least, that's what I gathered from the main post. I wonder if it's supposed to be safer this way?

I hope you've been well.

https://www.rnoh.nhs.uk/our-services/limb-reconstruction

I've so far witnessed the use of Precice and externals.  They go very slow because they ensure calluses join at each step.  Definitely the opposite from my CLL experience.

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Quote from: hanshi on July 03, 2018, 02:14:22 PMThe EMA does not control medical devices. For approval of medical devices there is no agency in Europe. To get the CE approval the manufacturer hires one of many so-called notified bodies, which are private companies and treat the manufacturers as customers. These companies then check, whether the paperwork from the manufacturer is correct. After getting the approval for the paperwork the manufacturer can put the CE marking on his product.
Most people are unaware of this. The EU is very strict with regulations about the curvature of cucumbers and bananas, but for medical products the manufacturers basically only control themselves.

This is absolutely correct.  To get an FDA approval, it's a very long, exhaustive and expensive process requiring a lot of R&D funds (~5 years).  And they stress test years of research results and requires every stringent requirement is met for consumer safety.
https://www.fda.gov/NewsEvents/ProductsApprovals/


A CE seal is simply a manufacturing approval to comply by European standards and can be a self-certifying declaration.  It is used to promote free trade within the EU and is NOT a seal of approval or guarantee of quality.  A CE label not only doesn't mean much, manufacturers need to report every device failure etc to keep their label current but because it's based on self-reporting, many CE labels are actually legally invalid.
https://en.wikipedia.org/wiki/CE_marking

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Quote from: myloginacc on July 03, 2018, 01:21:12 PMUnicorn, do you happen to know, or have any insight, as to how limb lengthening is done within the NHS?

Their process seems different from cosmetic, external fixator doctors. In this instance, it seems the NHS doctors would lengthen 4.5cm (~1.8in) over 2 years, doing an osteotomy on the bone twice rather than just once. At least, that's what I gathered from the main post. I wonder if it's supposed to be safer this way?

I hope you've been well.

I cannot think why lengthening 4.5cm might require a double osteotomy.  That said, because this is a very risky procedure that exposes you to an infinite amount of complications, I have seen 3 cases where double osteotomies were needed :

1)  One girl's femur was too curved, so the doctor cut in 2 places at the same time and she could lengthen a very small amount.  It's too bad for all the money and effort (private) with the old manual ISKD nail.  These days Precice nails comes in all kinds of diameters, curvatures, antegrade and retrograde.  A lot of options so this double osteotomy was not necessary.

2)  Another case, the person lengthened 5cm and recovered.  Went back to the doctor (privately) and did another osteotomy to lengthen that same leg another 5cm to the 10cm max.  Not really recommended coz the guy looks like a praying mantis.

3)  Last case, a guy was on a remote control nail and he happened to consolidate too quickly.  So unlike a manual nail where you can force yourself to 'break' your calluses, in his case, his bones were stronger than the remote control machinery.  So he had to rebreak his legs via another osteotomy to achieve the length he wanted.  In his case, he should do the Guichet express way because his consolidation was super quick.

Hence, here are 3 examples but I can imagine a myriad of other complications that we cannot even fathom.  I had a double osteotomy on my left leg cause the doc fractured it during the first osteotomy (broke 2 parts).  So I had to heal all before I can be rebroken again in a new bone site for leg lengthening.

This makes 4 reasons already

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Hi everyone,

A small update...  I've been suffering nonstop from deep bone aches in the grafted area and the doc says it's a good sign that the calluses/bones might be bridging.  That said, I'll know in my next xray IF my bone graft on my right leg works out.

In the meantime, I have been stretching myself nonstop to remove my lordosis and to strengthen my glutes so that I can walk like a normal person and not like the living dead (especially when I'm drooling and panting too due to exhaustion).  I swear, children see me on the street and they shriek and cry.  I feel like the evil clown in the horror movie 'IT'.

I still have weekly PT sessions at Kings College and I'm quite touched that they run an exchange programme with a Palestinian hospital.  So there is a guest PT who is here to gather experience to bring back to Palestine and I so wish one day I can give back to Kings (esp the Guthrie Ward and Trauma/Limb Reconstruction dept) and to the Palestinian hospital.  I'm just so touched that there are people out there to whom I actually matter and cares that I can one day rebuild my life.

Anyway, since this was my 4th surgery, I'm now a surgery veteran.  I packed my trustee pee funnel and Ziplock bags so that I don't need to struggle to pee on a bedpan (trust me, lifting your ass high enough post-surgery, to pee on the pan without spilling is a circus stunt in itself - why can't they just make a hole in the bed/mattress, so we can just GO whenever we want), stumble/crutch myself to the bathroom while high on Fentanyl or have a catheter attached to my ... (high risk of UTI).  Hence, with my ZIPLOCK pee funnel system, I get to drink (water) as much as I want, keep myself hydrated and never worry about the complex mechanics of post-op peeing. 

So what I did (as a compliant patient) is to dump these full pee bags into the Biohazard bin but little did I know, my Ziplock bags are not the authentic ones, they're from Morrisons (thanks Amazon!) so they LEAK and are not water tight.  So by morning, my entire room is flooded with pee.  The first day it happened, I was so embarrassed as the nurses were confused.  They sent a plumber over to look for leaks and I kept super mummmmm.  I wasn't going to confess to my pee habit.

Second day, when I woke up, I think my nurse used a gondola to row to my bed.  This time around, a good friend visited and brought flowers in a bag of water (no vase).  So I left the flowers on top of the Biohazard bin, punched a tiny hole in the water bag and blamed the flooding of the room to her flowers.  My poor friend...  the 3rd day she came to visit me, the head nurse gave her a thorough scolding about bringing flowers without vases...   

During my first 3 surgeries with my previous doctor and hospitals, I wasn't given sufficient painkillers, hence, suffered a lot of pain.  At Kings College Hospital, they're quite hilarious, they had me on morphine the whole time and hence, I suffered very little discomfort.  Actually, most of the time, I was high thanks to....  OPIOIDs.

After 2 weeks on syrupy sweet morphine, I decided that I should get myself off it lest I get addicted.  So I stopped cold turkey and that just killed me.  I never realized all those drug rehab movies are for real : heart palpitations, short term memory loss, deep depression (crying for no reason), anxiety, shivering in the heat of summer, waking up completely drenched in cold sweat, achy joints, headaches, nightmares, itchy skin, nausea, diarrhea and dry mouth.

When I saw my surgeon/nurses for the first time 2 weeks post surgery, they were all laughing at me because they said only stupid people would quit morphine cold turkey.  One is supposed to wean oneself off slowly (hey! I never got that memo!).  I was super curious during my 4th surgery at Kings, so I was requesting for morphine, fentanyl, oxycodone, oxycontin, percocet and whatever drugs that are Level 3 painkillers etc and it was quite fun coz we were laughing all the time (at least that was how I remembered it) and apparently, I was an incoherent chatterbox.  Now I know why there's an opioid epidemic, it makes you HAPPY!!!!!!!!!!!!!  And for that elusive moment when you're high, you escape the sad state of affairs in your life.

Anyway, so here I am, trying to rebuild my life, trying to make it to the end of each day productively/positively, willing myself to not fall into the vortex of self hatred and validating my existence by helping other CLLers who contact me with questions and second opinions.  I really believe now that LL can be executed safely and successfully for everyone.  Just GO SLOW, watch your calluses and STRETCH.

I've been in touch with many CLLers now, potential and current, where they are as badly informed as we were about the recovery period.  Remember, lengthening your bones is quite a linear process.  But your soft tissues like quads, hamstrings, psoas and IT bands will be badly strained.  And THAT takes a lot of time to lengthen/recover before you regain your normal walking gait again.  You'll need to build back your muscles, regain stamina and your body needs to relearn coordination with your longer limbs.  Trust me, these take a lot of time and for me, to recover from a runaway 10cm nail is quite miraculous (probably thanks to my hypermobility tissue/collagen) because my male classmates who lengthened only 5cm are still struggling to stand up straight or keep their legs together.

I would like to make a little video soon of why and how the body mechanics work when your bones are longer than your soft tissues.  The CLL docs seem to ignore this part and concentrate only on bone lengthening (and hopefully fusing).  But if you take a marionette doll and make the legs longer, you'll see that the legs will automatically spread apart because the IT band (which runs along the side of each leg) is now too short for the longer legs.  The marionette will start hunching too because the quads/hamstrings/psoas are now too short; so the marionette will be pulled forward by short quads and hip flexors/psoas (anterior pelvis tilt) and toes/legs might turn inwards. Try to imagine it this way and you'll understand the struggles of post lengthening soft tissue rehabilitation.

Anyway, my 2 cents for today since I get a lot of questions regarding wide legs, duckass, valgus and non-union.  It's not just a matter of lengthening too much, it's more a matter of lengthening TOO FAST.  Once the calluses are separated, they just give up trying to fuse.  That's why you wanna make sure it's constantly bridging (I put my left leg fusion progress on my instagram and that was lengthened very slowly at 0.3-0.5mm per day myself and no lengthening 1 week post-surgery), hence, SLOW is SAFE.  And ensuring that you discipline yourself to stretch your soft tissues to match your new height.

We were ALL under the impression that it was normal not to have calluses while we were clicking to lengthen and the MOMENT we stopped lengthening (reached our height goals), our bones would magically consolidate.  We were so NAIVE to believe this load of BS when to this very day - we're not all fully recovered yet, 2 years post CLL.  My surgery was July 25, 2016.

https://www.instagram.com/unicorn_gets_taller/?hl=en

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I’ve now read this from start to now.
CHRIST!!
I remembered I got upset bc you took the Uber taxi. I can understand why now, although I don’t like Uber.

Guichet was one of my options, but forget about that now. This is insane.
If it were me having all these problem I’d hire a guy to kill him. Or just do it myself if there was no light in the tunnel. You don’t treat people like this.

I’m sorry all of this happened to you.
I understand you had a better life before(of course).
£155.000 is a lot of money but if all of this made you broke today you weren’t rich to begin with, only financially stable.
If you’d secure a passive income that can’t fail even if all of this happened to you, first then you’re somewhat rich and money wouldn’t bother you.

I’m glad you get a better treatment with the NHS. Hoping for the bone graft right now, but for 10cm it doesn’t look bright.
All I can say is try chia seeds, which you did, together with coconut oil. The oil makes it easier for the body to take up the calcium from the seeds.
StRionary bike is also effective. At least better than laying still in bed all day.

I went to a “shady doctor” according o this forum but we had many successful outcomes from the guesthouse and I’m in pretty good shape too even though i have Xlegs from short muscles now.
Even the guys who used Monorail on their femurs ended up alright after some time.
I payed $15.000 for all inclusive in about 5 months almost. I overdosed Red Bull, candy, chocolate and pizza. I never stood up once bc I was afraid of pin bending and had terrible ballerina.
6 months later I could walk rather descent.
Today I can run, sprint, jump(not as high as before) and kick just as before LL.

Some patients in India dreamed of going to Dr Guichet, me included. It seemed like the perfect doctor for LL.
I guess we were wrong and I was right thinking that I get the same amount of centimeters in India as I do in France.

If I do my femurs I will opt for Stride nail. A lot thanks to you.

I really hope you will get well enough to be able to run and enjoy life again. And don’t bother about having children. This world is insane. It’s better to buy a motorcycle and have even more fun in your life.

I met a guy who was butchered by Dr Mirzoyan in Armenia, ilizarov on both tibias and femurs 6+6cm, and spent years recovering and he ended up fine in the end anyway so I think you’ll do too.

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Quote from: Sweden on July 25, 2018, 11:37:24 PM
I understand you had a better life before(of course).
£155.000 is a lot of money but if all of this made you broke today you weren’t rich to begin with, only financially stable.
If you’d secure a passive income that can’t fail even if all of this happened to you, first then you’re somewhat rich and money wouldn’t bother you.

I’m glad you get a better treatment with the NHS. Hoping for the bone graft right now, but for 10cm it doesn’t look bright.

And don’t bother about having children. This world is insane. It’s better to buy a motorcycle and have even more fun in your life.

The £155k didn't bankrupt me.  I lost my cash savings of $750k while trying to eke out a livelihood trading while suffering from physical and emotional trauma of my endless lengthening complications/doctor treatment.  Beyond that, I don't keep liquid investments, hence, the cash crunch I'm facing today and the inability to find a job that sympathizes w my disability. 

I never really believed in PTSD before but I fully get it now ~ how I can have panic attacks with certain triggers and I'd just shatter into a million pieces.

Well, I'm still hoping praying and wishing that the grafting will work.  I cannot keep a negative mindset that 10cm is hopeless.  But that's on me, not you.

As for children, I respect your love of motorcyles and how they are more fun than changing diapers, but everyone has different dreams.  Me having a kid would trump getting the coolest Ducatti on any given day.

Thank you for your well wishes.