Any updates, Unicorn?
Hi Penguinn,
Yeah, lots of updates! Since I last saw the new doc at Kings College Hospital, she had in the space of 2-3 weeks ordered up about 12 tests immediately. I've now done full bloods, xrays, CT scans, physio, therapist, ultrasound, vernacular scans etc. I'm so impressed seeing that everything has been free, speedy, polite and super efficient.
Having spoken to a few patients at the department, it turns out that it's well known for being super professional and effective.
That said, I've not had any glimpses of the results yet. All I know is I no longer have any blood clots, there are no cysts growing in my lengthened gap. I'll be seeing the doc in person tomorrow and I'll post what she says.
A few things I have learnt : no matter which doctor you go to, please always ask for second opinions.I learnt that there is NO WAY a marrow graft can fuse a 7-10cm gap. Also the fact that I underwent a marrow graft procedure on a leg that has runaway from 7 to 10cm with nobody noticing - is downright scary. There were ample xrays prior and post surgery so you'd think anyone responsible would check for length, if not out of professional obligation, perhaps out of courtesy seeing that this entire surgery costs an arm and a leg (no pun intended).
You'd think that anyone who performs surgery claiming extensive experience, would check before and after that there's no runaway lengthening since I had reported accidental clicking since last year and there are no calluses/non-union formed at all. I was even put on a 3 clicks/day schedule from April on. It was actually the A&E folks at NHS who measured my xrays and said I was close to 10cm.
It befuddles me whether I was intentionally put through a useless surgery for financial gain or did a world-class surgeon actually believe that a marrow graft can fuse 7cm when the entire world knows that it cannot? That was one unnecessary pain and cost
I've also met up with more LL patients in these last few weeks and it is so true that the garish stories do not go published for fear of doctors or shame. An example : One LL patient recently committed suicide and another suffered life altering gangrene infections which required flesh being grisly carved out on a daily basis.
We all noticed that when LL patients undergo racheting, the pain is so intense that everyone is crying all the time taking hours to click but once the entire ordeal is over, people tend to understate how painful or how much they suffered. I guess it's human nature, I don't know. Nobody wants to admit to being a coward and a crybaby perhaps. And our brains quickly surpress those traumatic memories anyway, as self preservation.
Clear example is the guy I had first met at Isokinetic when I went through my first cyber test who told me that the pain was so negligible, the cyber test was more painful. It turns out that he bare face lied to all of us (us being the gullible pack of bankers, lawyer and a doctor). When we confronted him later, he said he didn't want to scare us (!). In addition, we found out later that he was addicted to opioids as well.
So you cannot trust one source of info, and I definitely did. I heard only what I wanted to hear. Everything else was noise and bad luck that would NEVER happen to me, the fit and flexible former gymnast