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Posted on Jul 18, 2017, 3:28 pm
#551

You're a beautiful woman Unicorn888 and you'll get out of this   thanks to NHS. Your instagram account is a LL cautionary tale. Bad cases go out of doctors' control and they are so arrogant they can't admit they committed mistakes. I'd wish other patients were as open as you because everybody would know the truth about the surgery that made them disabled but they prefer keeping silent coz they're terrified or want to protect the doctor. Hope for better news soon.

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Posted on Jul 18, 2017, 4:10 pm
#552

Hi Unicorn! Have you tried bone stimulators such as exogen? I read somewhere that some of Paley's patients were doing it.
I leave an article about them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762251/
I don't know whether they will have a definite impact on your case, but I doubt it would hurt to try.

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Posted on Jul 18, 2017, 7:11 pm
#553

Sticking with you Unicorn, nothing I can really do for you but I always check your thread for updates and hope you will be fine soon.

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Posted on Jul 18, 2017, 7:23 pm
#554

Quote from: jojo on July 18, 2017, 02:09:38 PMDo you know the device called darma roller. Regeneration of skin.

Lol dont be mad. Maybe it would Work. Haha

This was not for uni.
I talked  about regeneration of cells and how blood Works and Then i deleted it becouse doomsday Said Wtf.

Sorry. Never mind

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Posted on Jul 18, 2017, 7:27 pm
#555

I think you will come out of this alright in the end. I can tell by your perseverance and the progress of your xrays don't look bad at this point. Despite the pain you have right now, your x-rays give hope to your situation.

In the end despite the craziness of it all, you will likely turn out fine after all. If you can survive this far, you are going to make out a super woman, keep working out your legs in physical therapy. Thankyou for this diary and the pictures you provided. No one has painted a clearer picture than this.

Anyway cheers to your new x-rays, bone growth, and keep us updated.

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Posted on Jul 18, 2017, 7:38 pm
#556

BTW you look very young in your photos. Not your real age at all, that is something you should be happy about. I have no doubt you will resume your old life after all this is over with one day. You are intelligent, attractive, and now even taller. I see no reasons as to why you cannot get married or have kids. I know ladies who had children at 40, 42. Or even adoption is possible. Either way you can fulfill all these things. So never limit yourself in this thinking.

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Posted on Jul 19, 2017, 1:03 am
#557

Hi Unicorn,

Just read through your diary, I couldn't believe what I was reading tbh.

I'm no expert but it is mostly the pediatric orthopedic surgeons who do deformity corrections (lengthen, shorten, rotate bones) as children usually present with these conditions. I believe some of them also see adults to deal with these issues. For example, Dr. Paley and Dr. Donghoon are trained as pediatric orthopedic surgeons. The adult orthopedic surgeons trained in trauma, lower limb complex recon (guys that also do hip/knee replacements), and oncology also deal with deformities usually arising from trauma (surgery, accidents where bone not salvageable) but I believe their approach is to heal the bone first by shortening b/c you can still walk with a shortened leg. At this point, I don't know what your goals are but from my experience with tibia lengthening, when I asked the surgeon they told me it takes approximately 1 month/1 cm of lengthening tibia to union/heal. With so little callus and a 10cm gap with no reverse/shortening mechanism with the G-nail, it will take many months for consolidation while having an unstable base. I can only imagine the psychological/economical difficulties of healing that long.

It seems that you are a highly qualified professional with a harvard education. And too young to be throwing that away. If you cut your losses and if your ortho suggests closing the bone gap, it may take around 3 months for the femur to consolidate if you take the estimate for a new fracutre, and you would be walking pretty normally before that with equal leg lengths as you have maintained your muscle mass through regular exercise. You will have lost time, height, and money but none more going forward. The risk of more accidental clicks, infections, surgeries, procedures, and pulmonary embolism damaging your health and adding more time is frankly scary. Reducing to 5cm like others suggested also seems like an excellent option if this is possible, but I don't know how you can do this reliably in surgery; leaving a bone gap with a nonunion may be taking chances on its own. If height continues to be an issue, maybe you can consider surgery again way out in the future but with a smaller limit (probably 5cm max) on your femurs, and doing bone marrow right from the start. Doing more of this right now seems really difficult. And please please don't think of this as something you have to "beat" as you can't tell your body to grow more bone...

Another thing is the medication. When I was lengthening, I took tramadol on a regular basis. Only when I stopped taking them after lengthening that I realized, as an opioid, it was allowing me to feel almost zero anxiety about the passing time. When I came off I sort of woke up to the fact that all this time passed by in my life. Also, I was addicted to sleeping pills (benzodiazepines and imovane) when I was in my early 20's. I tried multiple times to quit, but only after ~2 years and going cold turkey for 2 weeks (when I didn't sleep at all) was I able to come off of them. Because the benzos also dampen anxiety, and when they come off the anxiety is worse, I made the mistake of lashing out and losing some of my friends. I am frankly scared of sleeping pills to this day for this reason.

Lastly, and this is my personal opinion, if having your own kids is what you want, you can plan to freeze your eggs and this will take some time pressure off and maybe change your decision about ongoing leg lengthening. Again, my personal opinion/observation, nowadays as men's appearance is mattering more and more and his financial abilities a bit less, if you go back to your good job and hire a personal trainer to get you a killer body I think that marriage is certainly not impossible (although I don't know your standards). If you are worried about your age, if you will consider guys who had prior marriage I think you will find yourself with options, especially nowadays when divorce is unfortunately very common.

I am wishing the best for you and hope to hear good news posted on your diary soon. Please remember to eat well (sufficient calories + lots of protein + calcium). Please consider telling someone, a family member; they will be angry at first, but in the end only family really can love you unconditionally and truly care. Please keep your optimistic outlook. Like old Mike Tyson said, after hundreds of millions of dollars, loss of his daughter, betrayals, etc etc, "As long as you are alive, you have a chance".

All the best and wishing you health.

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Posted on Jul 20, 2017, 11:47 am
#558

Quote from: jojo on July 17, 2017, 09:22:30 PMI agree. You need to find a Dr.

(Shorten or compress the finished leg 2-3 cm.  and then get some kind of graft or stem cell to regenerate.)

 a doctor would know better Then My guss
Have you wrote Palay or some of the top doctors?

Please do it.

Hi Jojo!

Thanks for the suggestion but my issue is I cannot afford to see another paying doctor anymore.  I've already blown through £100k with no employment prospects to come.  So my only hope so far is NHS.

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Posted on Jul 20, 2017, 12:00 pm
#559

Quote from: Datum on July 18, 2017, 03:28:04 PMYou're a beautiful woman Unicorn888 and you'll get out of this crap thanks to NHS. Your instagram account is a LL cautionary tale. Bad cases go out of doctors' control and they are so arrogant they can't admit they committed mistakes. I'd wish other patients were as open as you because everybody would know the truth about the surgery that made them disabled but they prefer keeping silent coz they're terrified or want to protect the doctor. Hope for better news soon.

Datum, you're right, unfortunately.  This surgery is plagued with complications that are under reported.  Most people don't bother or are embarrassed or do not want to get into trouble with their doctors.

How a doctor handles complications do say a lot about them.  In Guichet's case, I still believe he is very competent and technically skilled.  For all I know, every step he's taken for me has been the right one.  Only time will tell.  There are a lot of 'ifs' in this journey and there're absolutely no precedents for each individual LLer.

And the worst part is cause and effect do not really correlate in real time, so we're constantly grappling in the dark not knowing something we have or haven't done will or will not affect us tomorrow or 3 months from now.

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Posted on Jul 20, 2017, 12:05 pm
#560

UNICORN if your longer leg is not clicking, in your case I would push and match it. lets us know what will doc from nhs say. 

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