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[hanshi]

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.

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.

[myloginacc]

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.

Thanks for the information.

[Unicorn888 by Elaine Foo]

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.

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.

[Unicorn888 by Elaine Foo]

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.

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

[Unicorn888 by Elaine Foo]

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.

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

[Unicorn888 by Elaine Foo]

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

[Sweden]

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.

[Unicorn888 by Elaine Foo]

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.

[Unicorn888 by Elaine Foo]

Hi everyone,

I noticed many LLers contact me regarding why their bodies behave a certain way (like wide legs, duckass etc), and like our old doc, we were never taught nor warned about these side effects and how to counter them.  So I thought I'd give you some of the stretching I found MOST HELPFUL, TARGETED and SAFE for femur lengthening (since I don't know the first thing about tibia LL).

REMEMBER that for every cm you lengthen, it takes even more time to lengthen/stretch the soft tissues to match, and soft tissue lengthening is not a linear process.  It is different for each individual's flexibility AND this is where most doctors wipe their hands off further responsibility because their job was simply to lengthen your bones, and not your soft tissues.  And soft tissues are waaaay harder to lengthen/stretch than bones are.  Of course, the longer you lengthen, the more time it takes to recover etc.

3 THINGS you need to overcome when you're lengthening/recovering from lengthening :
-  Short soft tissues resulting in wide legs, duckass
-  Loss of muscles (esp abs and glutes) resulting in side-to-side zombie walking
-  Stamina deconditioning resulting in extreme fatigue which you can correct via regular swimming and "walking/crutching" in increasing distances when you can/safe for you to do so

WIDE LEGS
It happens the moment your femur bone is longer than your IT band
SOLUTION > Need to stretch out your IT band (IT bands unlike muscles, cannot be lengthened, hence, when all else fails like me, you need to get your IT band released.  It worked magically for me!)



DUCK ASS (Anterior Pelvic Tilt)
It happens the moment your femur bone is longer than your quad, hamstring and psoas/hip flexor muscles
SOLUTION > Need to stretch/lengthen out your quad, hamstring and psoas/hip flexor muscles

PSOAS STRETCH


QUAD STRETCH


HAMSTRING STRETCH


Besides STRETCHING/LENGTHENING soft tissues, you'll need to rebuild your GLUTES and ABS

GLUTES (no squats please because it would add too much load on your LL nails)


ABS (regular sit up exercises are not optimal because it shortens your psoas/hip flexors)


These are what I found most helpful.  Over cycling (esp the ones where you're hunched over are not optimal either because it doesn't help your hip flexor/psoas stretching).  If you've weight bearing nails, then crutching slowly with a bit more distance everyday will help you recover your stamina.  If your nails are not weight bearing, swimming helps you on many levels (stretch/stamina/muscles)

Hope you find these helpful.  They helped me a lot because I can see how my body is getting straighter and stronger every single day.

[Android]

Really helpful posts Unicorn, thanks. I want opioids so badly! 😂

I'll definitely be doing these stretches too once I'm able. Great photos.

[Shadow91]

Thank you for taking time and effort to share much needed information.

[myloginacc]

[post]

What a rude post in so many parts.

Hi everyone,

I noticed many LLers contact me regarding why their bodies behave a certain way (like wide legs, duckass etc), and like our old doc, we were never taught nor warned about these side effects and how to counter them.  So I thought I'd give you some of the stretching I found MOST HELPFUL, TARGETED and SAFE for femur lengthening (since I don't know the first thing about tibia LL).

REMEMBER that for every cm you lengthen, it takes even more time to lengthen/stretch the soft tissues to match, and soft tissue lengthening is not a linear process.  It is different for each individual's flexibility AND this is where most doctors wipe their hands off further responsibility because their job was simply to lengthen your bones, and not your soft tissues.  And soft tissues are waaaay harder to lengthen/stretch than bones are.  Of course, the longer you lengthen, the more time it takes to recover etc.

3 THINGS you need to overcome when you're lengthening/recovering from lengthening :
-  Short soft tissues resulting in wide legs, duckass
-  Loss of muscles (esp abs and glutes) resulting in side-to-side zombie walking
-  Stamina deconditioning resulting in extreme fatigue which you can correct via regular swimming and "walking/crutching" in increasing distances when you can/safe for you to do so

WIDE LEGS
It happens the moment your femur bone is longer than your IT band
SOLUTION > Need to stretch out your IT band (IT bands unlike muscles, cannot be lengthened, hence, when all else fails like me, you need to get your IT band released.  It worked magically for me!)



DUCK ASS (Anterior Pelvic Tilt)
It happens the moment your femur bone is longer than your quad, hamstring and psoas/hip flexor muscles
SOLUTION > Need to stretch/lengthen out your quad, hamstring and psoas/hip flexor muscles

PSOAS STRETCH


QUAD STRETCH


HAMSTRING STRETCH


Besides STRETCHING/LENGTHENING soft tissues, you'll need to rebuild your GLUTES and ABS

GLUTES (no squats please because it would add too much load on your LL nails)


ABS (regular sit up exercises are not optimal because it shortens your psoas/hip flexors)


These are what I found most helpful.  Over cycling (esp the ones where you're hunched over are not optimal either because it doesn't help your hip flexor/psoas stretching).  If you've weight bearing nails, then crutching slowly with a bit more distance everyday will help you recover your stamina.  If your nails are not weight bearing, swimming helps you on many levels (stretch/stamina/muscles)

Hope you find these helpful.  They helped me a lot because I can see how my body is getting straighter and stronger every single day.

Thank you very much for sharing all of these, Unicorn.

[Unicorn888 by Elaine Foo]

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.

By the way, being RICH is not a requirement for a successful CLL outcome.  We all somehow coughed up the money to pay Guichet £55k and was promised that we'd recover after 2 months of lengthening and 1 month of rehabilitation.

Hence, many of my classmates actually borrowed, took out loans and even remortgaged their parents' home to realize this dream.  So you can only imagine if recovery doesn't happen after 3 months but drags out past 24 months, the expenditures will seriously add up when your income stream is zero.

So just to be clear for potential CLLers, take out a cosmetic surgery insurance if possible (one recent LLer was quoted €300 in Germany), keep a spare £20k in case things go wrong... and in my case, even when I had more cash savings, I lost everything while trading during the trauma of 4 surgeries. I currently rely on kind friends and family to support the little life I lead and even with that, I am £100k in debt and am determined to pay everyone back in this life time.

Hence, yes, non-millionaires or billionaires are entitled to this surgery too.  But do set some money aside for complications or loss of job (3-4 of our classmates lost their jobs as they couldn't recover within the 3-month time frame that was promised by our doctor) and I am EXTREMELY lucky to live in the UK where medical is FREE and it happens to be a LOT BETTER than the private care that we all paid through the nose for.

[Sweden]

You lost $750.000 in tradings?

There is just so much I can say about this.

[Unicorn888 by Elaine Foo]

You lost $750.000 in tradings?

There is just so much I can say about this.

Please don't.  I made a lot of stupid decisions under duress and trust me, I hate myself and flog myself everyday for ruining my own life.  One moment, I was retired and had no money issues due to a steady trading income and other, and lo and behold, I find myself in debt by £100k

So, I don't need one more person to mansplain to me how stupid I have been, I know it.  I look at it in the mirror everyday.  And I realize that life is so fragile that simple things like trading requires a certain zen mindset and not the duress & desperation I was under.

So, this is my punishment and my own cross to bear.  I don't need more people judging, pointing fingers at me and secretly thinking I deserve all the misfortune that befell me because of my vanity.  I know it already, and I feel worse than what anyone can say to me or think of me.

[Shadow91]

Sweden get lost...and besides who are you to judge anyone, didnt you go to Sarin? A decision that you probably took under stress/anxiety over your height. Man you need to chill. Unicorn is sharing everything she knows to help us all and you are trying to put her down in her recovery?? Man fu*k off

[Tangled]

The lack of empathy of some people here is astonishing. I also made many stupid decisions and trusted people I shouldn't have trusted. I don't understand why I was so stupid. I also hate myself and flog myself everyday for ruining my own life, but I think that should be our own privilege and nobody else's. I don't want anybody else to point fingers at me either. We don't deserve this  TY judging and mansplaining from anyone. It's true we chose to do this, but that doesn't mean we have to be blamed when things go sore. I really hope insensitive people like Sweden and some classmates of mine get what they deserve. Go fk off you all.

[doomsday]

mansplain? ahahhaa are you a feminist?

[Sweden]

Aaahhhh, the low life haters. 

Apparently Dr Sarin was a much better choice. I got my 7cm for ~$19.000 and I’m healthier than most members of this board in here. Dr Sarin doesn’t have any case near as disastrous as this one.

Lack of empathy? You’re an idiot. I feel sorry for her. But it’s one thing to lose £155.000 to a expensive doctor and totally another to “lose” $750.000 just like that.
That’s an entire new level.
It probably took a lifetime to achieve and in an instant - it’s gone.

I don’t buy it.
Sure, we all do our different choices in life but being financially retired has a lot more doors open. Many other possibilities to go and see another doctor to begin with.

Being 42, in debt, crippled, starting all over again. This has to be for sure one of the worse CLL cases in history. And yes, I have empathy and feel sorry for her.

I really hope you find your way back to life Unicorn888.

[Bosnian2018]

Aaahhhh, the low life haters. 

Apparently Dr Sarin was a much better choice. I got my 7cm for ~$19.000 and I’m healthier than most members of this board in here. Dr Sarin doesn’t have any case near as disastrous as this one.

Lack of empathy? You’re an idiot. I feel sorry for her. But it’s one thing to lose £155.000 to a expensive doctor and totally another to “lose” $750.000 just like that.
That’s an entire new level.
It probably took a lifetime to achieve and in an instant - it’s gone.

I don’t buy it.
Sure, we all do our different choices in life but being financially retired has a lot more doors open. Many other possibilities to go and see another doctor to begin with.

Being 42, in debt, crippled, starting all over again. This has to be for sure one of the worse CLL cases in history. And yes, I have empathy and feel sorry for her.

I really hope you find your way back to life Unicorn888.

\\




Theres no reason to point out the obvious when she's going through so much already.

Were all rooting for you Unicorn.

And yes Sarin is still doing CLL and there is one thread in particular on this forum that talks about a girl doing it currently.
Apparently its not such a bad choice. Who knows. Guichets like the UK paley and you have this case and what Unicorn claims about her classmates.


Then you have Sarin the butcher with good outcomes and currently more people still going to him in confidence.

[Thatdude950]

Aaahhhh, the low life haters. 

Apparently Dr Sarin was a much better choice. I got my 7cm for ~$19.000 and I’m healthier than most members of this board in here. Dr Sarin doesn’t have any case near as disastrous as this one.

Lack of empathy? You’re an idiot. I feel sorry for her. But it’s one thing to lose £155.000 to a expensive doctor and totally another to “lose” $750.000 just like that.
That’s an entire new level.
It probably took a lifetime to achieve and in an instant - it’s gone.

I don’t buy it.
Sure, we all do our different choices in life but being financially retired has a lot more doors open. Many other possibilities to go and see another doctor to begin with.

Being 42, in debt, crippled, starting all over again. This has to be for sure one of the worse CLL cases in history. And yes, I have empathy and feel sorry for her.

I really hope you find your way back to life Unicorn888.

Given the choices you've made over the past 5 years, you're in no place to lay the boot in here.

[Body Builder]

Aaahhhh, the low life haters. 

Apparently Dr Sarin was a much better choice. I got my 7cm for ~$19.000 and I’m healthier than most members of this board in here. Dr Sarin doesn’t have any case near as disastrous as this one.

Lack of empathy? You’re an idiot. I feel sorry for her. But it’s one thing to lose £155.000 to a expensive doctor and totally another to “lose” $750.000 just like that.
That’s an entire new level.
It probably took a lifetime to achieve and in an instant - it’s gone.

I don’t buy it.
Sure, we all do our different choices in life but being financially retired has a lot more doors open. Many other possibilities to go and see another doctor to begin with.

Being 42, in debt, crippled, starting all over again. This has to be for sure one of the worse CLL cases in history. And yes, I have empathy and feel sorry for her.

I really hope you find your way back to life Unicorn888.

Sarin is a butcher.
Like almost all LL doctors on India. Going there for LL is a ridiculous choice. You are lucky to be good Sweden, but that doesn't mean that your choice of doctor was good.
And yes, Guichet is a butcher too but much more expensive. Thats what makes him the worst LL doctor out there right now.

Anyway, I believe that Unicorn you'll be fine at the end. Even if your last surgery won't work, Stryde will!
So don't give up hope, you are lucky like all of us that a magnetic fully weight bearing nail is out there and it truly can fix all of our problems better than ever before.

[Shadow91]

Sweden, didnt sarin butcher your legs??? And dont you still have x-legs? And do not forget that your knees will be destroyed if you take out the implants ( according to you).You also said that after 5 years you stamina is still bad and that your left leg is still twisted 4 degrees. These are just some of the complicatios you mentioned. For f'ck sake you have been complaining for years over the complications you suffered in hands of Sarin, even in the old forum. Now you are telling us that he was the better choice? You lying piece of sh*t. You were a low life in the old forum and you are still a low life.

[IwannaBeTaller]

@Unicorn888: You don't need to justify your financial situation or distress to anyone in this forum. It's your own life and you should only share what you're comfortable with. Please ignore the insinuations coming from some posters.

[Sweden]

My legs aren’t butchered you idiot. I’m still competing in martial arts.

How is that Sarin’s fault that my stamina is still bad?

My left leg is twisted 4 degrees because of immobility. Inner thigh muscle is too weak. Very difficult to regain.
Everything regarding the bone and nails are just the way it is supposed to be.

Everyone’s knees will get destroyed when you remove the nails. What do you think? You have to cut open and drill right through. Of course it willleave a permanent mark.

My friend who did cross lengthening even with monorails(femurs) is doing fine. 7 on tins and 4 on femurs. Many more are doing fine.
Dr Sarin still gets many patients every year who ends up fine.

So apparently he was a much better choice than Dr Guichet since I got my 7cm for a total of ~$19.000.

Maybe we’re not getting told everything right here.

[naimah99]

I think women should also get this surgery if they want to. Has anyone tried being a 19 year old girl who is 4'8" and has been teased her WHOLE existence for being short, despite her good qualities and personality? That's me. Also, I want to say that I truly hope "Unicorn888" recovers from this tragedy. I a, sooooooooooooooo thankful to find her diary because Dr. Guichet was literally my top option (for someone who is on a low budget like me). Thank you so much. I hate to have to learn from other people's tragedies, and I truly wish the best for "Unicorn888".  :-

[..]

Sweden did LL at the age of 35 with a cheap Indian doctor and overlengthened and now still competing in martial arts at national level at the age of 40 with rods remained in his legs. This has to be one of the best LL cases in the history.

[Shadow91]

You moronic dellusional.........

[Unicorn888 by Elaine Foo]

Hi guys,

Someone asked me about a list of questions to ask potential CLL docs.  I came up with some and thought I'd share with you as well.  Always listen to your gut and don't let the docs off with evading difficult questions.  Insist on seeing walking videos and not merely photos - as desperate docs will get their patients to perform short bursts of stunts to look normal.  Feel free to add to these, as it's not comprehensive of course.  Just stuff that I wished I had asked more clearly and had insisted on transparency.  My attitude going into it was, "...others are stupid, I'm not, so it won't happen to me."  How arrogant and naive I was!

QUESTIONS
1. How many have they done so far in total?
2. How many with Precice and Stryde?
3. Breakdown by male/female, race and age group?
4. What’re the oldest and youngest candidate?
5. What complications have they encountered?
6. What was the worst case?
7. What is the smallest lengthening, biggest lengthening, average lengthening?
8. Do they repair congenital deformities or trauma or are they uniquely cosmetic only?  % btw CLL vs trauma cases?
9. How many nails broke?
10. How many non-union?
11. What does the price include (are complications included in the package price?)
12. Can you speak to several candidates (current and successful or failed?)
13. How do they filter who is a good candidate for CLL according to them?
14. How do they monitor during lengthening to ensure safety?
15. How do they minimize duck ass, X legs, wide legs?
16. What kind of painkillers do they use and supplements they recommend?
17. What are their preparation recommendation for undergoing surgery for potential CLLers?
18. What is the average months/years of their patients from surgery to normal walking gait?
19. What are the pros and cons of Stryde vs Precice vs ISKD vs externals?  What is their preference?
20. Do they prefer femur or tibia CLL?
21. Are pre and post xrays/medical testings/scans etc included in pricing?  What are extra costs to anticipate?
22. Have they turned away potential CLLers?  Why?
23. Do they let you go home to lengthen or do they insist you stay w them during the entire lengthening period?
24. What are the absolutely maximum length they'd let you do for tibia and femur?
25. Do they do unilateral and quadruple CLLs?
26. Are there ongoing lawsuits?  Past lawsuits?  What were the verdicts and why?
27. Has the doctor moved hospitals/countries etc.?  Why?
28. Has there been any death of any patients during/after CLL even if unrelated (like suicide due to mental instability?)
29. Has the doctor ever been suspended/banned or placed under investigation?  For what reasons?
30. Where did the doctor learn his CLL trade?
31. Who else would the doctor recommend if you didn't go to him?
32. How realistic is it to resume pre-CLL athletic ability including skiing?
33. Has the doctor observed long term effects from his patients like early onset of arthritis etc (does he even keep in touch?)
34. Can they suggest CLL surgery insurance?
35. Realistically speaking, if one runs out of money and there are complications, what is the doctor willing to do?

[hanshi]

An important question is missing:
How many times has the doctor been sued by their patients.

[JohnOdin]

hey unicorn, i read through your diary and i wanted to say you are so brave for going through what you are! and also i saw your pictures you are very pretty XD!