Your story is heartbreaking. Seems like you were at the top of the world and now it could seem like you are at the bottom!
But on the other hand you are still a Harvard graduate, an international person with a broad horizon, smart, a former investment banker, still speak 7 languages, and are probably wealthier than 90% of world population! So please see the great person you still are and the great life you can still have ahead of you.
Do not be ashamed of the decision you have taken. In fact, be proud. You did not accept the status quo and were daring enough go ahead. In fact, I was taking to another patient about it and we realized that most patients we have met are far from being losers and instead are highly intelligent, successful and entrepreneurial.
UNICORN - Dr. Guichet Internal Femurs 8cm - Summer 2016
Quote from: The Kaiser on April 12, 2017, 12:18:24 AM
Its not crap at all, it support full weigh barring and a great recovery. The problem here is why Guichet delayed the surgery that much, it suppose to be done long time ago. Precice technically better organized but take much longer to walk normally because its not supporting full weight barring. We feel sorry for this Unicorn, Can someone write whats exactly going wrong with her beside delayed surgery, i want to understand her case.
Hi Kaiser,
To state it dryly :
1) Eggshell fracture happened during drilling at initial surgery
2) 2 weeks later, that surface fracture actually cracked even though there was no fall or accidents. Guichet initially thought the severe pain was fast consolidation and had me take Naproxen to slow down healing and increase my click rate. That made everything worse because I couldn't find any clicks and was in severe pain over 4 days
3) I had lengthened to 3.2cm at the point, and that length was completely lost as the nails weren't holding my bone anymore at the bottom - so my bones crushed back together
4) Had a second surgery on September 1st where Guichet re-nailed the pins on a lower site closer to my knees and with larger older pins
5) I had to wait for all the fractures including the previous femur osteotomy to fully heal and consolidate before recommencing the lengthening process again
6) By end January, X-rays showed that all the fractures have fully healed and surgery can begin
7) Guichet cancels Feb 1st surgery last minute
8 Guichet reschedules 3rd surgery for April 18th in Milan
9) The new procedure is to remove the nail, break my femur and put back the nail, that way I can start lengthening
10) This time, he wants to lengthen over 4 months on my left leg vs 2 months on my right leg which might have been too fast and caused the non-union
11) Because the nail was lengthened to 3.2cm, the most it can lengthen now is 6.8cm. So I will always have a height disparity of at least 7mm. Guichet says that if I wanted a new nail for my left leg that has the 10cm settings, it will cost me a lot
12) In the meantime, my right leg finished lengthening at 7.2cm but it won't fuse. And it continues to click by accident even up to yesterday evening
13) During next week's surgery, Guichet will extract marrow from my hip and inject it onto the ends of my bones, hopefully to stimulate growth and fusion. He will also injure the ends a bit to create inflammation and healing
Hope this is clear.
Quote from: snowcloud on April 12, 2017, 08:05:55 AMHi UNICORN, be strong, we all will support you. By the way, you mention you lose the lenthen in you right leg, is that true, I think maybe you want to say your left leg
Hi SnowCloud,
I lost the 3.2cm lengthened height on my LEFT leg when the fracture happened.
The fear that even Guichet warned me, is to be ultra careful with the RIGHT leg because if I fracture that leg, I will lose the 7.2cm lengthened height because there're no bones formed in that lengthened gap.
I've had several near slips when my crutches slipped on dry ice on the pavement.
My understanding is the lengthening nail is not great for holding support after lengthening. It should be switched to a regular non-lengthening nail to prevent potential fractures. But that's another whole surgery and I don't even want to think about it.
Quote from: helloworld on April 12, 2017, 08:16:18 AMYour story is heartbreaking. Seems like you were at the top of the world and now it could seem like you are at the bottom!
But on the other hand you are still a Harvard graduate, an international person with a broad horizon, smart, a former investment banker, still speak 7 languages, and are probably wealthier than 90% of world population! So please see the great person you still are and the great life you can still have ahead of you.
Do not be ashamed of the decision you have taken. In fact, be proud. You did not accept the status quo and were daring enough go ahead. In fact, I was taking to another patient about it and we realised that most patients we have met are far from being losers and instead are highly intelligent, successful and entrepreneurial.
Thank you HelloWorld. I drew the same conclusion from LL-ers I've met. Most people are successful, courageous, open minded, interesting and goal achievers.
The frustration I've had to face is how people draw a general bias of my physical failure to every other aspect in my life. Suddenly, every decision I've had to make are called into question too just because I'm struggling to walk. I even got into a fight with my brother because he blamed me for being cheated by my general contractor, my plumber and my cabinetry guy. He claims that "in my condition, I'm probably not thinking right".
If I was showing physical perfection, he would have probably chalked it up to having bad luck or even being a single girl dealing with tradesmen.
So perhaps there has always been a natural prejudice against people who cannot perform basic tasks like walking or feeding themselves, that they are also mentally less capable.
What really frustrates me is, when did I suddenly become such an imbecile? I cannot forgive myself for being cheated by Guichet, by my plumber, by my cabinetry man - it's all monetary but it is also what is plainly quantifiable. And each time I think about it, I feel a deep desire to punish myself. And this is where the dark self hatred rears its ugly head.
You won't notice it until you realise people are treating you like a drooling 5-year old. And while they probably care about you, they also no longer hold you in the same esteem, trust and respect, as when you were physically capable.
So my latest conclusion is, when one is physically incapable, people around you cannot help but draw the same conclusion about your mental capability as well.
I once accompanied a tycoon who was almost blind on a business trip (he had a congenital eye disease that in different lighting would give him the eyesight of a fly or sometimes total darkness) - and of course, I was very attentive to his disability but half the time I tried reaching out to guide or hold his elbows, he'll retaliate violently and lash out at me.
I cowered in fear every time I had to see him for a meeting. Now I understand him, he's not lashing out at me, he's just frustrated, resentful and ANGRY with himself for being so helpless and vulnerable. He didn't want to be the subject of pity by all of us lesser beings. And yet, we cannot help but pity him in spite of everything he has.
Quote from: Unicorn888 on April 12, 2017, 08:55:43 AMHi Kaiser,
To state it dryly :
1) Eggshell fracture happened during drilling at initial surgery
2) 2 weeks later, that surface fracture actually cracked even though there was no fall or accidents. Guichet initially thought the severe pain was fast consolidation and had me take Naproxen to slow down healing and increase my click rate. That made everything worse because I couldn't find any clicks and was in severe pain over 4 days
3) I had lengthened to 3.2cm at the point, and that length was completely lost as the nails weren't holding my bone anymore at the bottom - so my bones crushed back together
4) Had a second surgery on September 1st where Guichet re-nailed the pins on a lower site closer to my knees and with larger older pins
5) I had to wait for all the fractures including the previous femur osteotomy to fully heal and consolidate before recommencing the lengthening process again
6) By end January, X-rays showed that all the fractures have fully healed and surgery can begin
7) Guichet cancels Feb 1st surgery last minute
8 Guichet reschedules 3rd surgery for April 18th in Milan
9) The new procedure is to remove the nail, break my femur and put back the nail, that way I can start lengthening
10) This time, he wants to lengthen over 4 months on my left leg vs 2 months on my right leg which might have been too fast and caused the non-union
11) Because the nail was lengthened to 3.2cm, the most it can lengthen now is 6.8cm. So I will always have a height disparity of at least 7mm. Guichet says that if I wanted a new nail for my left leg that has the 10cm settings, it will cost me a lot
12) In the meantime, my right leg finished lengthening at 7.2cm but it won't fuse. And it continues to click by accident even up to yesterday evening
13) During next week's surgery, Guichet will extract marrow from my hip and inject it onto the ends of my bones, hopefully to stimulate growth and fusion. He will also injure the ends a bit to create inflammation and healing
Hope this is clear.
Hey Unicorn thanks for the details, I hope the 18th April surgery will change everything and put smile on your face. Also i hope Dr Guichet will not delayed it again. I want to ask you Two Question,
Do you think Dr Guichet is a capable doctor and his nails is a strong and good nail?
Does other patients have a better outcome, but you were unlucky with the outcome? is it Guichet's fault when the fracture happened?
Quote from: The Kaiser on April 12, 2017, 11:00:13 AM
Hey Unicorn thanks for the details, I hope the 18th April surgery will change everything and put smile on your face. Also i hope Dr Guichet will not delayed it again. I want to ask you Two Question,
Do you think Dr Guichet is a capable doctor and his nails is a strong and good nail?
Does other patients have a better outcome, but you were unlucky with the outcome? is it Guichet's fault when the fracture happened?
1) Is Guichet capable?
I think he is a brilliant surgeon and probably one of the best qualified out there technically speaking. However, you have to be very careful as he is also very disorganized, oversells his ability and is over confident. Always be weary of any doc who shows you miraculous success stories. Ask them about their WORST cases. Try to find out who they've swept under the rug. Don't be naive, thinking that bad things will never happen to you. You want to go in fully informed and prepared for every eventuality.
2) I think his nails are strong. But they're painful because you've to go through the physical and unnatural act of breaking your already broken legs 10-21 times a day, 3x a day for 2+ months. The trauma is beyond physical pain, it's mental anguish as well. For weeks after my lengthening ended on my right leg, I continued to wake up in cold sweat during my click schedule. I do think from reading other diaries that perhaps fitbone or precise is more supportable. But with the Guichet nail, it's like stick shift vs automatic. You can control every aspect of it whereas I understand the automatic ones sometimes stop functioning involuntarily or do not start at all.
The jury is out on this one but my right leg looks like there's valgus. It's curved outwards. When I asked Guichet, he said it's because I'm currently limping with a 7cm disparity, hence, it appears like valgus. I hope that's not the case because it looks bad right now. I look like one of those insects you crush but didn't die? And has broken legs sticking out at weird angles? That's me!
3) As you can read from the forum, they're other patients who emerged successfully. I was in contact with 8 patients who lengthened at the same time. They ranged from 1 teenager, and folks in their 20s, 30s and 40s. Their lengthening ranged from 3.5cm to 7.5cm. The teenager did exceptionally well and took no time to recover. The older ones suffered more pain and quit earlier. I was the only one with a fracture at surgery. So yes, bad luck for me.
4) Can you blame the surgeon if he causes a fracture when drilling? I don't know, maybe lawyers can answer this question. I think Guichet's fault might not lie in his technical abilities but his over confidence. My date was switched to replace someone else and he didn't have my data with him. He was severely delayed going into surgery and was frazzled. He even called me the wrong name and had the wrong birth date on my chart (imagine, I had to correct him while being strapped to the operating table). I think all these elements do play into the outcome of the surgery, as lightly and funny as I thought it was at the time. It's actually no laughing matter. He became more careful with the person whom I replaced, and gave her a double osteotomy because her femur was curved as well. So I was the first guinea pig and suffered for it - as they say, no good deed goes unpunished.
My advise would be, if the circumstances leading to your surgery is as chaotic and stressful as mine were, you have the right to call a stop to everything. Don't be naive like me, leaping on a prayer and hoping for a miracle.
Also, be vigilant with your follow up. Don't expect your doctor to look out for your best interests at all times. We were all very disappointed that he never had our results. His computer was always down, had IT issues, server issues etc. At any time, he never knew our achieved height nor even fusion rate. He is supposed to monitor closely, but I only realise this too late. He let me lengthen very quickly and ONLY in November (this is 2 months after I finished lengthening) does he show me my xray and exclaims, you've a fusion problem! This was when I realized how scary and precarious it has all been, and that I had entrusted my LIFE to someone I had met only thrice.
It's like naive people who think that their private bankers are spending every waking hour making money for their investments. Well honey, your investment banker is in St Tropez partying with models the moment your cheque cleared.
Quote from: Unicorn888 on April 12, 2017, 03:37:05 PM1) Is Guichet capable?
I think he is a brilliant surgeon and probably one of the best qualified out there technically speaking. However, you have to be very careful as he is also very disorganized, oversells his ability and is over confident. Always be weary of any doc who shows you miraculous success stories. Ask them about their WORST cases. Try to find out who they've swept under the rug. Don't be naive, thinking that bad things will never happen to you. You want to go in fully informed and prepared for every eventuality.
2) I think his nails are strong. But they're painful because you've to go through the physical and unnatural act of breaking your already broken legs 10-21 times a day, 3x a day for 2+ months. The trauma is beyond physical pain, it's mental anguish as well. For weeks after my lengthening ended on my right leg, I continued to wake up in cold sweat during my click schedule. I do think from reading other diaries that perhaps fitbone or precise is more supportable. But with the Guichet nail, it's like stick shift vs automatic. You can control every aspect of it whereas I understand the automatic ones sometimes stop functioning involuntarily or do not start at all.
The jury is out on this one but my right leg looks like there's valgus. It's curved outwards. When I asked Guichet, he said it's because I'm currently limping with a 7cm disparity, hence, it appears like valgus. I hope that's not the case because it looks bad right now. I look like one of those insects you crush but didn't die? And has broken legs sticking out at weird angles? That's me!
3) As you can read from the forum, they're other patients who emerged successfully. I was in contact with 8 patients who lengthened at the same time. They ranged from 1 teenager, and folks in their 20s, 30s and 40s. Their lengthening ranged from 3.5cm to 7.5cm. The teenager did exceptionally well and took no time to recover. The older ones suffered more pain and quit earlier. I was the only one with a fracture at surgery. So yes, bad luck for me.
4) Can you blame the surgeon if he causes a fracture when drilling? I don't know, maybe lawyers can answer this question. I think Guichet's fault might not lie in his technical abilities but his over confidence. My date was switched to replace someone else and he didn't have my data with him. He was severely delayed going into surgery and was frazzled. He even called me the wrong name and had the wrong birth date on my chart (imagine, I had to correct him while being strapped to the operating table). I think all these elements do play into the outcome of the surgery, as lightly and funny as I thought it was at the time. It's actually no laughing matter. He became more careful with the person whom I replaced, and gave her a double osteotomy because her femur was curved as well. So I was the first guinea pig and suffered for it - as they say, no good deed goes unpunished.
My advise would be, if the circumstances leading to your surgery is as chaotic and stressful as mine were, you have the right to call a stop to everything. Don't be naive like me, leaping on a prayer and hoping for a miracle.
Also, be vigilant with your follow up. Don't expect your doctor to look out for your best interests at all times. We were all very disappointed that he never had our results. His computer was always down, had IT issues, server issues etc. At any time, he never knew our achieved height nor even fusion rate. He is supposed to monitor closely, but I only realise this too late. He let me lengthen very quickly and ONLY in November (this is 2 months after I finished lengthening) does he show me my xray and exclaims, you've a fusion problem! This was when I realized how scary and precarious it has all been, and that I had entrusted my LIFE to someone I had met only thrice.
It's like naive people who think that their private bankers are spending every waking hour making money for their investments. Well honey, your investment banker is in St Tropez partying with models the moment your cheque cleared.
I saw many people said age matter with the surgery and give a better outcome which i don't believe. Teenagers and 20s should be the same at least there is no difference. As a patient do you think age really matter?!
Quote from: The Kaiser on April 12, 2017, 04:55:14 PMI saw many people said age matter with the surgery and give a better outcome which i don't believe. Teenagers and 20s should be the same at least there is no difference. As a patient do you think age really matter?!
In my experience, yes age matters a lot. The younger the less pain and the faster you recover. Also, gender matters, girls have less painful lengthening but have fusion problems. Guys have more pain lengthening because they're less flexible, but they consolidate faster, sometimes, too fast which makes the lengthening even more painful.
The younger people absolutely breeze through this operation in comparison to the older folks. Age matters a lot. As does flexibility.
Can confirm younger people have easier LLs. Mine was almost painless, so was Morrisette's and Asian123's, both under the age of 20 like me.
I'm very sorry to hear about your situation Unicorn, but you're still all those positive qualities you listed about yourself pre-LL. I hope you stop the self hatred and pull through. Easier said than done, I know, but regardless.
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