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
Author
Topic: UNICORN - Dr. Guichet Internal Femurs 8cm - Summer 2016 (Read 256443 times)