Quote from: Unicorn888 on May 13, 2017, 12:05:54 PMNope, same 13mm. I already have 13mm on both legs from before and even if he wanted to give me an 11mm one (which he doesn't think is the correct one for me), he had to use a nail from a future patient in May.
He couldn't give you 11mm since you femurs has been reamed for a 13 mm rod. It would be probably to loose or something.
She means she walked with a walker after surgery. I for example waited for the second day to stand up because I was very dizzy with the anesthesia. At least even if the worst happen we can walk on crutches, unlike other nails which do not weightbear and if there is not enough bone formation you'll be stuck in a wheelchair. I think all nails should be weightbearing if Guichet nail can, then why not The others.
My God, Unicorn. I remember when I started reading your journal, you were so positive and hopeful, nobody could image you would have had such horrible experience. The risk of infection and amputation is my biggest fear, even biggest than death, I can't image how bad you felt; and the saddest thing, it's that you have nobody beside you. Your family, and in particular your brother, have been really horrible. Family is the only one always there, but I guess it's not always the case.
I don't want to sound selfish, but I'm glad I've read your story, so that now I know Guichet is a money-suk scum and I will avoid him at all cost.
I was so sure about him, if it weren't for your diary I would still thinking to choose him. Now I've decided to go with an italian doctor, Pili: he has experience and collaborates with another important doctor (Catagni). He seems more aimed at pathological cases, which means is not into this for money only.
Plus it costs far less than Guichet ( the difference is mainly in the preparation and physiotherapy, which aren't crazy-expensive as Guichet's), and, in case of complications, being italian, I'm covered by public healthy care.
I'll also make sure not to lengthen more than 0,50/0,60mm. The fact that Guichet makes everyone lengthen 1mm at day, not taking in consideration age and sex differences, it's another proof of his incompetence.
I really wich you all the best. This experience will make you stronger and, after this, you will be able to overcome pretty much anything.
Quote from: Body Builder on May 13, 2017, 02:48:46 PMWhat do you mean immediate mobility after anaesthesia?
If you mean that he forced you to walk then I believe this doctor is really dangerous and wants to torture his patients.
But I hope I understood wrong.
Hi Body Builder 
Immediate mobility meaning that after waking up from general anaesthesia, one of the PTs will come and get you up on a walker to hop around, go to the bathroom and even do stairs. I know it sounds risky and terrifying but having gone through it twice, I realize that it's what keeps my muscles/joints flexible and mobile. It's the same as LLers who discover that moving their legs about despite initial pain is what keeps them oxygenated, blood circulating, less inflammed and painful. Being immobile while reassuringly 'safe' is actually the less wiser thing to do for reasons of continued pain and potential thrombosis.
I do agree with Yellowspike and LLSouthAmerica's analysis that having a weight bearing nail is a game changer because it means we're not wheelchair bound for months. However, we've to click and that in itself also presents its pros and cons because it means automatic vs manual. Potential LLers should draw up a comparative chart of each device to properly weigh up their decisions. Any volunteers? 
Anyone who comes up with the next gen nail which is fully weight bearing and reliably non-clicking would be a clear winner!
Quote from: Annalisa on May 15, 2017, 03:19:47 AMMy God, Unicorn. I remember when I started reading your journal, you were so positive and hopeful, nobody could image you would have had such horrible experience. The risk of infection and amputation is my biggest fear, even biggest than death, I can't image how bad you felt; and the saddest thing, it's that you have nobody beside you. Your family, and in particular your brother, have been really horrible. Family is the only one always there, but I guess it's not always the case.
I don't want to sound selfish, but I'm glad I've read your story, so that now I know Guichet is a money-suk scum and I will avoid him at all cost.
I was so sure about him, if it weren't for your diary I would still thinking to choose him. Now I've decided to go with an italian doctor, Pili: he has experience and collaborates with another important doctor (Catagni). He seems more aimed at pathological cases, which means is not into this for money only.
Plus it costs far less than Guichet ( the difference is mainly in the preparation and physiotherapy, which aren't crazy-expensive as Guichet's), and, in case of complications, being italian, I'm covered by public healthy care.
I'll also make sure not to lengthen more than 0,50/0,60mm. The fact that Guichet makes everyone lengthen 1mm at day, not taking in consideration age and sxx differences, it's another proof of his incompetence.
I really wich you all the best. This experience will make you stronger and, after this, you will be able to overcome pretty much anything.
Hi Annalisa!!!
It's so good to hear that you're finally starting your journey. I'm really happy for you since you've wanted to do this for a long time now Please keep me posted and if you need any help, support, encouragement or simply to shoot the breeze, please don't hesitate to PM me, ok?
As I had said over and over again, I own the fact that I took this decision with both my eyes open (albeit perhaps hastily) and had kept my friends and family in the dark about what happened to me. So while my brother has been less than understanding, he also doesn't know the real truth. He really thought I was a careless sister who went rock climbing, recklessly fell off and had taken one bad decision after the next.
Please do look into cosmetic LL/surgery insurance and/or coverage by public health care if there're any complications It's always better to be safe than sorry The thing is, all LL surgeons charge for further surgeries in the case of complications, that's why I always urge potential LLers to ensure they've a backup plan in case it takes longer than expected and/or they need further funding.
I remember watching this documentary over christmas about an LL patient in China who did external tibias who suffered complications and ended up with 2 different lengthened legs. And she ran out of money to get it repaired. While she was being interviewed on TV about her experience and suffering, her mother was standing behind her screaming about how stupid she was ("wang-pa-tan") for taking so much risk and then not having the money to repair her limp.
It's cruel but I really couldn't help laughing at the hilarity of the interview setup because hailing from an asian family, I can see how my own mum would react in the same exact way if she found out I had limb lengthening too; and she'd probably do one better - chase me around the house with wooden clogs in hand while screaming chinese expletives I don't even understand. And Guichet would have been proud with how miraculously I could crutch to freedom.
Quote from: LLSouthAmerica on May 13, 2017, 04:48:33 PMShe means she walked with a walker after surgery. I for example waited for the second day to stand up because I was very dizzy with the anesthesia. At least even if the worst happen we can walk on crutches, unlike other nails which do not weightbear and if there is not enough bone formation you'll be stuck in a wheelchair. I think all nails should be weightbearing if Guichet nail can, then why not The others.
And I've to add that LLSouthAmerica being such a friendly sweet guy wanted to visit me right after I finished my surgery in the Milan hospital. In my daze and confusion, I gave him the wrong room number and he ended up getting a generous peek of a big black guy's ass - and he rightly concluded, it probably wasn't Unicorn.
In the meantime, I had an over enthusiastic PT who arrived to get me to stand up and hop about, I blacked out and almost vomitted. My blood pressure dropped and before you know it, there were 6 people surrounding me probably trying to find a pulse. Little did they know that I can feign death simply just to avoid PT and Guichet yanking.
So because of this, I never got to meet LLSouthAmerica 
It was horrible. After training a lot I went to Columbus, at the time I was not completely recovered so even walking and standing up was hard for me. When I arrived to the 3rd floor and knocked the wrong door! nobody answer so I peaked inside... nked guy hahaha then I tried to find Unicorn and a nurse told me she was busy and couldn't receive visits at the time. Given my extra curious nature, I peaked to the other side of the hall and you had the whole staff outside your room... hahah (good that we now can laugh about it... it was scary)
Hello. I'm French. I registered on this forum in order to have news of Unicorn.
Indeed I have read all his story and i'm so sad for her and i really wish that everything goes better for her.
She must know that even if it's a virtual relationship we are humans and we will support it ! (sorry for my bad english ^^'' )
Hi everyone,
A small update. It's been a pretty bad 6 weeks for me. I finally got 45-day xrays yesterday and it looks like my marrow graft didn't work. There's absolutely no bone growth or fusion. Am desperate. Xrays below.
Right femur looks pretty good, and I'm above 4cm now. Am scared to know what my right leg length is currently because yesterday, the A&E doctor measured and it was 10cm which I'm very sure is wrong. It's been clicking accidentally very easily, even as I put my legs together to sit down, it clicks.
I don't know what options I have left.
Let me bring you back to where I last left off in May. I had recently moved and my old GP didn't want to refer me to an NHS orthopedist because I no longer fall under his mandate. So I had to wait 2 weeks to register with a new GP. By the time I got an appointment to see her, 1hr late and waiting in the rain, she couldn't do anything because the computer system kept showing me as registered under my old GP. She couldn't access my files, let alone refer me for tests.
1 week later, finally, I got myself updated in the NHS system properly (many shouting phone calls) and saw her again. She sent a referral letter off to get me an orthopedist and I didn't hear until 4 weeks later. And my first appointment with the ortho is only for July 6th (!).
So in the mean time, after being hospitalized for infection, I had no xrays or any tests unless I do them privately which would cost above £1k (xrays, full body DEXA, CTX blood test and ultrasound for blood clot). So I decided to try my luck at A&E yesterday. The doctors didn't want to give me any tests because they said I had no NHS orthopedist following me and my GP didn't qualify because she's no lengthening expert. So I'm left with no updates of how my lengthening is going, nor even an ultrasound to confirm that my blood clot is in fact gone.
I've been to A&E three times now since post Milan surgery due to the suspected blood clot and to this very day, 6 weeks later, NHS has refused to give me an ultrasound. My GP and Guichet insist it's important I get a scan in case a tail end breaks off risking pulmonary edema, while 3 A&E docs dismiss it altogether claiming that if a blood clot were to be present, my legs would be swollen by now. So there you go, NO TESTS.
I broke down emotionally right in the middle of the A&E triage, as I ran out of options, plan Bs, hopes. Finally, the A&E head sat me down and said he'll help me out and approved my xray request. That's how I got my images below. But the plot thickens... he kindly went to speak to the orthopedist I got referred to whom I'll see in July and found out the guy doesn't know the first thing about lengthening. So, I've booked yet another appointment back with my new GP next week to attempt another referral. And A&E docs cannot refer outside their own hospitals, I didn't realize that, and the one I went to had no specialty in limb lengthening. So by the time I get an NHS orthopedic appointment, it'd probably be Aug/Sep Perhaps my lengthening would have finished?
In the meantime, my neighbours downstairs are pounding on my door every day as their walls and ceilings are water damaged from my flat, allegedly. I've had to hire an emergency plumber since Friday, over the weekend until today and no leaks had been found. In the meantime, because my plumbing pipes are hidden under my floorboards, he had to dig up my new floors. And I'm in fights every day with the neighbours and building manager as I've destroyed my own floors trying to find a leak and there's none and they don't believe me. So I'm going semi crazy and my plumbing bill is prob more expensive than limb lengthening at this point. And the communal insurance doesn't cover the damage in my own house nor plumber cost to identify leaks. Ok, boring stuff but you can see how things just exacerbates in a nasty spiral that sends you completely off kilter, and you do want to go into hiding forever.
I even tried to apply for my UK citizenship, got my appointment and interview, to show up without my passports/IDs. I had left all my authentic docs at home. What a miserable fail! I'm just plain frazzled and distracted all the time.
In the meantime, I've heard from yours truly who's threatened me with lawyers, fired me twice and I don't even know how to deal anymore. My heart palpitates and I break down in anxiety and panic just thinking about the wolves waiting for me on the other side. When in doubt, I hide in the shower stall under hot pounding water and I get to zone out for a little while.
I don't sleep much at night because of pain, I only take 2-4 paracetamol-codeines per day as I don't want to be addicted. Lengthening had been excruciatingly painful in the beginning, then became less painful when I hit 2cm onwards and now it's back to pain again, not surprisingly after I passed 4cm. At least I'm in pain and there're calluses, and for that I'm grateful for the silver lining.
My clicking angle now is at 180 degrees (it's inhumanly possible unless you're a FREAK like me) otherwise, I don't find the click. And I've 2 other clicking sounds near my knee and my inner thigh that are confusing as hell because I cannot tell if I've clicked or not. So I spend half the time trying to close a click that didn't happen or trying to open a click when in fact, I should be closing. So you can only imagine the agony. I told the PT and he didn't believe me until I finally showed it to him and he had to try record it on his iPhone to show the doc (this was 3-4 weeks ago). So you can see the schizophrenic land I've entered. He even tried to advise me when was a real click vs a fake click, and he got them wrong So, I cannot be all that crazy!
And I think the best mind fk about all this is that I'm told that I might have to go through more surgeries. Perhaps fragment bone grafts and ultimately, to collapse and shorten the lengthened gap on my right leg since it's too far apart now for the bones to join.
However, the giant irony is... I'm lengthening my left leg and to what length do I finish at? Can you imagine if I lengthen to 7.5cm and I have to shorten my right leg to 5.5cm. Does that mean I've to shorten my left leg to match as well at a later point after I've fused successfully? This vicious circle just never ends, and with every attempt to fix, it gets worst.
Do you see how this procedure and decision I've taken is turning into a living, breathing, piercing nightmare? Even if I wanted to get a job today, I cannot because I'm living every moment in trepidation of my next clicking hour, my distrust in everyone, being a social pariah and recluse... and sadly enough, most of my friends have shied away because they don't fully understand what's wrong with me.
People keep questioning how it is possible that I've not healed from broken bones after a year. They keep waiting for me to reveal some paralyzing disease but I don't. I guess we're entering the feared territory of having to deal with someone's misfortunes and hardship. People feel uncomfortable and do not know how to react, so the easiest way is to avoid you altogether. I cannot pretend to be that super funny confident successful girl anymore. These days, I'm grateful for any little emotional crumb and handout. Any small gesture of kindness and I'm touched.
I cannot even begin to tell you every other story of cruelty and discrimination that I've faced trying to go about my daily life in crutches, uneven legs, even my own mother criticizes me nonstop like I were 7 years old. It really hurts and as I said, these types of pain are perhaps less bearable than the physical ones that keep me up at night.
This is so revealing about human nature, the moment you're vulnerable, tables turn, powers shift and there are many who'll take advantage and quickly forget you were once human. During my house move, I had to hire help because I could not manage 80 boxes, renovations, cleaning etc and now 2 months later, I realize they have been stealing from me. I open up boxes to find them emptied out. Who steals from a bloody cripple, really?!
Another example is one of the junior A&E doctors yesterday didn't want to give me a wheelchair and said I should be able to walk (with a smirk - people DO judge you for cosmetic leg lengthening). The passage to the xray dept is quite far and I had already waited about 4 hours outside to be seen, and my leg had started throbbing in pain and I didn't bring any paracetamol with me. So I began crutching and it took a very long time, and I struggled with every turn and with every emergency door where you had to press a release button that swings out but I'm too slow to make it before the door swings shut again (!). And out of the blue, the A&E head saw me zombie-ing by, and with a swift motion, grabbed a wheelchair and zoomed me down the corridors to xrays, waited, intepreted, discharged and got me an Uber. How's that for the biggest contrast between kindness and cruelty, smarts and insensitivity, in such a short span of time with 2 similarly trained professionals?
I looked him up the next day on Linked In and it turns out, he went to harvard medical school. How's that for sheer coincidence? One alumna helping out another unknowingly. As I said, I'm touched
LEFT FEMUR
RIGHT FEMUR
Stop taking NSaids!
They slow or can even prevent the fusion of your bones! How long have you been taking them?!
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