Devastating to hear about your legs, but glad to hear that things are moving along with NHS. Best of luck with the bone grafts, and I hope that your left leg stabilizes as well.
Unicorn, thank you so much for having the courage to share your negative experience. I don't believe in prayers, but I know that science has been making steady progress, and I know something will become available in the next years to help you - if it's not here already and we just don't know about it. Perhaps osteoblast delivery via targeted nanoparticles? You seem super smart - maybe you'll want to dig into the science a bit after you feel better psychologically, and take the matter into your own hands.
Your story has inspired me to aim for the safe length - 4-5cm in both segments, and go quadrilateral despite the extra cost and pain. It's also inspired me to go to Paley vs. Guichet, even though it seemed Guichet patients recovered faster. You've also inspired me to post my journey on Instagram and Twitter.
Thank you again, and best wishes.
Thanks for updating us. Myself along with many others have been keeping up with your diary for it's entirety. Hopefully things improve for you.
If a surgeon didn't allow forum posts, then that's an instant deal-breaker for me. If I get this done, I'll discuss it in the initial consultation. Butchers can already get away with their crimes relatively unscathed as it is outside the US and the least we should have is this forum to discuss possible solutions.
Quote from: Out of Touch on March 08, 2018, 05:23:18 AMThanks for updating us. Myself along with many others have been keeping up with your diary for it's entirety. Hopefully things improve for you.
If a surgeon didn't allow forum posts, then that's an instant deal-breaker for me. If I get this done, I'll discuss it in the initial consultation. Butchers can already get away with their crimes relatively unscathed as it is outside the US and the least we should have is this forum to discuss possible solutions.
That's why certain surgeons keep moving countries. I finally realized, having met many more medical experts, they tell me never TRUST a doctor who practices in different countries, it can be for sinister reasons.
Quote from: Out of Touch on March 08, 2018, 05:23:18 AMThanks for updating us. Myself along with many others have been keeping up with your diary for it's entirety. Hopefully things improve for you.
If a surgeon didn't allow forum posts, then that's an instant deal-breaker for me. If I get this done, I'll discuss it in the initial consultation. Butchers can already get away with their crimes relatively unscathed as it is outside the US and the least we should have is this forum to discuss possible solutions.
Yes, please check your fine print because I also did get verbal permission from mine to contribute to this forum. But the moment things turn sour, it becomes insidious.
Quote from: OverrideYourGenetics on March 08, 2018, 02:31:43 AMUnicorn, thank you so much for having the courage to share your negative experience. I don't believe in prayers, but I know that science has been making steady progress, and I know something will become available in the next years to help you - if it's not here already and we just don't know about it. Perhaps osteoblast delivery via targeted nanoparticles? You seem super smart - maybe you'll want to dig into the science a bit after you feel better psychologically, and take the matter into your own hands.
Your story has inspired me to aim for the safe length - 4-5cm in both segments, and go quadrilateral despite the extra cost and pain. It's also inspired me to go to Paley vs. Guichet, even though it seemed Guichet patients recovered faster. You've also inspired me to post my journey on Instagram and Twitter.
Thank you again, and best wishes.
Hi Overideyourgenetics,
Yes, my NHS doctor is angry that I'm constantly trying out new solutions. I've written to many universities, labs, biotech companies etc. volunteering to be their test rabbit but no joy so far. Nobody has ever replied.
If you can afford Paley, you're very lucky, definitely do it! As I told you guys, I have met someone who's done both: a European doctor with a manual clicking nail and Paley with Precice, and this person offered me a rare glimpse of the massive difference in experience, comfort and care between the two. Take advantage of this person's journey (not posted on forum).
Unicorn, I have no words. I am so sorry you're still having to suffer through such a nightmarish experience. I also know that "certain doctors" have switched/operate in multiple countries, and it always seemed odd to me. I remember thinking it made everything so unorganized and scatterbrain-ish, but didn't really think it was for "sinister' reasons, as you put it.
You will eventually come out on the other side of this. And you are helping so many people through keeping this diary. Looking back on things, I somewhat regret not going with Rozbruch (or Paley). While I had delayed healing in one leg, it eventually healed, and per Dr. Rozbruch, both nails are ready to come out (doing that in a few months - a bit nervous). So it took a while, but I escaped relatively unscathed. But I remember Rozbruch telling me that clicking rods, while they are better at working against soft tissue limitations (and actually getting you the height you want), they are terrible for bone recovery. My left leg probably would've healed much sooner. But, water under the bridge at this point...
I know that everyone loves to hate on Dr. Guichet these days, and I somewhat get it. But I also met a lot of patients (including female) who were very successful with him. I met a young lady who was on her second surgery with Dr. Guichet (re-breaking her femurs to get more height).
My takeaways from all this (including from having done LL myself are):
- If you can afford to stay in the US, spend the money and do so. I had the money, but went across seas because I wanted weight-bearing/no wheelchair
- The older you are, the harder time you'll have (I was in my late 20s/young 30s, so any older, and I don't know how things would've turned out)
- Women seem to have a harder time (but they also need it less, although I did meet some women who had dwarfism who were doing this, which I totally understand)
- With LL, no matter what doctor you go with, there are always risks. DO. YOUR. HOMEWORK.
Unicorn, I wish you all the best. I read your diary from start to finish. I am at a loss for words.
Quote from: YellowSpike on March 08, 2018, 08:07:40 PMUnicorn, I have no words. I am so sorry you're still having to suffer through such a nightmarish experience. I also know that "certain doctors" have switched/operate in multiple countries, and it always seemed odd to me. I remember thinking it made everything so unorganized and scatterbrain-ish, but didn't really think it was for "sinister' reasons, as you put it.
You will eventually come out on the other side of this. And you are helping so many people through keeping this diary. Looking back on things, I somewhat regret not going with Rozbruch (or Paley). While I had delayed healing in one leg, it eventually healed, and per Dr. Rozbruch, both nails are ready to come out (doing that in a few months - a bit nervous). So it took a while, but I escaped relatively unscathed. But I remember Rozbruch telling me that clicking rods, while they are better at working against soft tissue limitations (and actually getting you the height you want), they are terrible for bone recovery. My left leg probably would've healed much sooner. But, water under the bridge at this point...
I know that everyone loves to hate on Dr. Guichet these days, and I somewhat get it. But I also met a lot of patients (including female) who were very successful with him. I met a young lady who was on her second surgery with Dr. Guichet (re-breaking her femurs to get more height).
My takeaways from all this (including from having done LL myself are):
- If you can afford to stay in the US, spend the money and do so. I had the money, but went across seas because I wanted weight-bearing/no wheelchair
- The older you are, the harder time you'll have (I was in my late 20s/young 30s, so any older, and I don't know how things would've turned out)
- Women seem to have a harder time (but they also need it less, although I did meet some women who had dwarfism who were doing this, which I totally understand)
- With LL, no matter what doctor you go with, there are always risks. DO. YOUR. HOMEWORK.
Hi Yellowspike,
To date, 2 of my classmates successfully removed with Rozbruch, so you'll be in good hands! 
I'd add to your poignant advice :
- Watch your fortnightly XRAY carefully, needs to show growing and bridging CALLUS (no matter how faint), don't rely blindly on your doctor
- Don't lengthen too much, keep it within 6-7cm MAX - otherwise your soft tissue recovery time will exponentially increase (duck ass, IT band release, chronic TFL and knee pains, etc)
- Lengthen S-L-O-W-L-Y, it's not a race! Non-union could cripple you for years, so slow and safe should be your motto.
Wowy, I am reading your story now. You are a warrior, there is no question about it. I normally skip over femur journals since I never planned on doing the surgery. I witnessed a patient undergo shortening to undo lengthening when I did my surgery. But I really hope the bone graft works. Shortening by frames can be done, I witnessed it myself (on tibias). But from what I saw, it is much harder to do than lengthening in terms of pain management. I've never seen a shortening and then re-lengthening, but I'm assuming it can be done.
And I totally agree with your statement about maintaining a callus connection before going nuts on lengthening. I've seen some questionable non-unions/weak bone connections on x-rays. Those patients rarely had happy endings or are many months behind in terms of recovery. It's all about being slow and steady, but like anything with this surgery, there are no guarantees 
.
Edit: I followed your insta, there is some good stuff on it.
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