Quote from: Kotiki on August 10, 2018, 11:54:57 AMI apologize if this question has been answered - I may have missed it as I skimmed over the thread. When one of the nails ran away to 10 cm, or better still, while that nail was running away and had passed the safe mark of 5-6 cm, WHY didn't Guichet perform an emergency surgery, take out the faulty nail, shortened the bone to the length originally planned and inserted a trauma nail?
Hi Kotiki,
No worries, there're a lot of pages to parse through as it was written contemporaneously (and I'm verbose) without the 20/20 hindsight I wished I had. So here's the brief version with a summary timeline :
Jul'16 - 1st surgery (London)
Aug'16 - Left leg broke due to eggshell fracture of 1st surgery
Sep'16 - 2nd surgery (London) to nail g-nail back on the left femur
Sep'16 - Right leg lengthening ended at ~7cm
Dec'16 - Discovery that right leg is non-union
Apr'17 - 3rd surgery (Milan) to start lengthening left leg
Jun'17 - Discovery that the right leg has run away to ~9.7cm
Jun'18 - 4th surgery (NHS London) to bone graft my right leg non-union (left leg fully fused with lengthening at my own pace of 0.3-0.5mm per day only, and I waited 1 week post osteotomy before starting to lengthen)
https://www.instagram.com/unicorn_gets_taller
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Guichet had stopped my right leg lengthening at 7cm. So I reached that height around end Sep'16 (about 65 days from 1st surgery). However, when my left femur broke, my pelvis started tilting very badly (see pic below) to compensate for the crushed 0cm on my left leg and a progressively longer and longer right leg.
So, Guichet sent me to see his chiropractor and during one of those sessions, she accidentally clicked me and it hurt like hell. After that, everytime I bend my legs to sit or put my knees together or when I lie sideways to sleep, clicks would happen on its own. I wrote Guichet asap and sent him a photo of a sitting position whereby, clicks would just happen. He said it was not possible with the g-nail. It is like when he brushed me off, declaring that it wasn't possible for my left leg to be broken from his eggshell fracture, and instead, diagnosed my 5-day excruciating pain as fast bone consolidation. He even had me take meds to slow down fusing (!).
At first, I was psyched that these accidental clicks will give me a little bit more height than what I finished at, like maybe 2mm more. But the clicking continued up to this May'18 before I had my right leg bone graft with the NHS. I wear a full length right leg brace to sleep so that I don't click by accident especially when lying in a fetal position.
That said, we were all under the impression that my right leg was lengthened to 7cm-ish. However, I was admitted to the Emergency Room because my skin started staining red (erythema) and my wounds sites from my 3rd Milan surgery of Apr'17 started oozing pus. I had shown Guichet the inflammed wound sites at his office, and he said it was normal following a major surgery but I went anyway to A&E to double check. When the head of A&E at Chelsea Westminster Hospital saw the weeping wound sites, he FREAKED, because it could potentially lead to infection of the nail and bone. So they hospitalized me asap, I was given xrays, blood tests and IV antibiotics overnight.
Anyway, when the A&E head saw me the next day, he showed me on the screen that I wasn't 7cm on my right leg but more like 10cm. I was quite surprised as I didn't think it could runaway that much. I kept telling him his measuring systems were wrong. I mean every 15 clicks = 1mm, hence, to achieve about 2.7cm (270mm) more, that'd entail about 400 clicks. The math just doesn't add up.
That said, when I had my (last) consultation with Guichet, I told him about the hospital's findings and he measured my xrays and said, yes it actually is closer to 10cm now. I was quite disappointed because I really thought my wellbeing and lengthening procedure were being closely monitored, especially for the steep price and sterling hospital reputation (HCA Group is the largest hospital group in the world and publicly quoted on the NYSE at a $36BN market cap - https://en.wikipedia.org/wiki/Hospital_Corporation_of_America) which gave me a (false) sense of security and blind trust.
Guichet has since not seen me, and I had thankfully met another Guichet non-union victim who kindly persuaded his NHS doc to take me on. Since then, Guichet's notes had been transferred over to the NHS and to my utter devastation, Guichet added in his notes that he warned me not to lengthen to 10cm but I had ignored him and went ahead in secret. This accusation shattered me because after so much trauma, suffering, loss of livelihood/self worth etc, the last thing I expected was for my own doctor to hurl me under the bus to exonerate himself. This emotional betrayal is not the kind of pain that I can easily relieve with morphine.
To move on, I started doubting myself because Guichet maintained that his nails can never run away. But thank goodness, one other patient kindly wrote me and shared that she too had non-union and her nail ran away as well. In her case, the other leg had fused and so she actually needed to go through a leg shortening surgery to rematch both legs 
Same thing, when Guichet maintains that his nails are fully weight bearing and never break, the person who got operated 2 days after me in Jul'16 suffered a complete nail breakage through the femur bone in May'18 - two years on and this LLer was beyond consoling. And I'm sure, if asked, Guichet would blame us. Period.
Since then, I've had more people write me about ISKD nails and how they can easily run away after a few months of clicking (if non-union) because it cannot stop without the tension from bone consolidation/calluses nor designed to reverse. So I am not crazy after all. All this has done quite a serious number to my head because I lost so much self confidence and doubted myself in everything I endeavoured.
I sank so deep that some days, I really believe I don't deserve help, because I brought this upon myself. That I'm even wasting precious NHS resources because of my reckless vanity. Everytime I've a physio, psychologist, psychiatric and/or orthopedic appointment at the NHS, I somehow feel ashamed for stealing the slot of more deserving patients.
At the end of the day, what cuts me deepest ironically enough is... my own doctor could so nonchalantly whip up medical notes to exculpate himself first. It's gonna take me a little while longer to regain my confidence. I feel like I lost a lot more than physical limbs, I lost a big part of my heart. The warm part that sees the best in people and believes in herself. Instead, I find myself hardened, cynical and mentally scarred. I'm learning to forgive myself everyday, it is the first step of my emotional healing.
SEVERE LEG LENGTH DISCREPANCY AND LATERAL PELVIS TILT
IMAGING (~curved spine, extreme pelvis tilt to compensate for the leg length discrepancy)
ONE WOUND SITE
HOSPITALIZED
). She warned me that it could happen again but at the very least, I got a first sneak peak at my right leg xrays and there are hypertrophic calluses/clouds around my whopping 10cm non-union lengthened gap. She says it's no guanrantee of anything because they could disappear as fast as they appear (kinda like the sun in London) but at this very moment - it was good news and that's GOOD ENOUGH FOR ME 