UNICORN - Dr. Guichet Internal Femurs 8cm - Summer 2016

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how is your walking after itb release?

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Quote from: doomsday on June 25, 2018, 01:46:01 PMhow is your walking after itb release?

The IT band release literally solved a lot of my lordosis.  Suddenly, I can stand so much straighter with very little duckass left.

The left knee drainage also removed my chronic knee pain.  So my walking gait is non-valgus, straight legs BUT leaning side to side.  The reason is my glutes are still too weak to propel my hips and legs forward like a normal person.  But I’m working hard on that, so I see miraculous small improvements everyday.

Sometimes I get off my seat to open a door or fetch something from the fridge and realize later that I had forgotten to use my crutches.  It is a very liberating wonderful feeling to have my legs support me unaided again.

My current pain is in the non-union grafted gap area of abt 10cm.  It hurts a lot esp when I wake up from 8hrs of innactive sleep.  I sometimes take a spoonful of morphine and keep crutching to alleviate this excruciating bone achiness.  I hope it’s my bone army building a bridge over the graft to fuse.  In any case, pain is better news than no sensation at all (due to nonunion)

https://www.instagram.com/unicorn_gets_taller/

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Terrible what happen to you Unicorn. Im glad that you are making progress at least. You seem to be a fighter so i believe you will recover from this faster than you think.

I recently had surgery done on my femurs and everything has been fine so far, im still lengthening. Do you have any recommendations for people who does this surgery, that you have learned from yours? like, things to avoid etc. Im around 3cm right now and i do 15 clicks per day wich is like 0.7mm or so.

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Quote from: Unicorn888 on June 25, 2018, 12:36:21 PMSomeone alerted me that there's a post somewhere that I did 2mm/day.

Just to set the record straight, Guichet lengthen his patients about 5mm to 1cm during the initial osteotomy surgery.  Then for the first 2 weeks, his schedule is about 1.5mm per day and one reaches about 3cm by Week 2.  If we didn't follow his schedule, we get screamed at and verbally abused.

I made the 2mm/day claim, and thanks for correcting me. I still think the lengthening process you described above is crazy, and I'm shocked to hear about the verbal abuse

Quote from: Unicorn888 on June 25, 2018, 12:36:21 PMWe were told that lengthening lasts 2 months and 1 month of recovery, and then boom!  You're discharged fully recovered to go back to work and your friends/family without anyone the wiser.  Well, this is all BS!

This PRECICE patient of Dr. Mahboubian lengthened for 2 months and is walking unaided quite well 1 week after he stopped lengthening. He weighs 120lbs, 50% more than what the PRECICE is rated for.

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Unicorn, what is the prognosis following your surgery? Do they believe there is a good chance that this will help your leg heal and form a bone bridge?

You are doing really well, better than you realize. Keep at it. You'll be out of the woods sooner than you think.

Also, just wanted to add - had you went through what you went through, and I read your diary before I scheduled my surgery - I would have definitely picked a different doctor. My experience was obviously very different than yours. I didn't have any complications (still have to get the rods out still, though) and he was very different with  me...but yeah...reading your diary and your recent posts...I would have done the surgery elsewhere.

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Hey Unicorn, first of all best wishes for the recovery.
 I just read your diary. I strongly believe your non-union may be that due to the reason that significant percentage of your original bone is occupied by the nail, leaving little   of this bone to regenerate new bone.  In other words as you said that initially the callus was forming but later in just backed down, this may tell that your existing bone mass could have formed new bone upto a certain length, when  you crossed that limit the bones did not bother to fill the gap as if they knew they would not have succeeded anyways in fully bridging the gap.

So i just wanted to ask/suggest, did you consider either taking the rod out and putting instead a thin rod or reducing the distance between  the segmens by shortening the rod(if that is possible) or any other method in which bones would not have to make so much of new bone mass. I know taking out and putting in rod could be really dangerous esp seeing your frail bones but I guess it would have saved you from lot of trauma..

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Quote from: tallertree on June 25, 2018, 04:26:22 PMTerrible what happen to you Unicorn. Im glad that you are making progress at least. You seem to be a fighter so i believe you will recover from this faster than you think.

I recently had surgery done on my femurs and everything has been fine so far, im still lengthening. Do you have any recommendations for people who does this surgery, that you have learned from yours? like, things to avoid etc. Im around 3cm right now and i do 15 clicks per day wich is like 0.7mm or so.

Just make sure you xray every 2 weeks and check that your callus fingers are bridging.  That's the only thing to look out for.  If the calluses are not growing, you should stop or slow down your clicks.

Everyone is different.  You could be a fast fuser and it might mean clicking even more to ensure you don't fuse before you reach your desired height.  You can always PM me your xrays, ok?  And I can give you an opinion then.  Whenever you feel in doubt, seek a 2nd opinion.  That's the safest approach.

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Quote from: OverrideYourGenetics on June 26, 2018, 03:37:04 AMThis PRECICE patient of Dr. Mahboubian lengthened for 2 months and is walking unaided quite well 1 week after he stopped lengthening. He weighs 120lbs, 50% more than what the PRECICE is rated for.

Yes, we had the same for a 19 year old guy in our class.  After lengthening for 2 months, he fused asap/too fast, and was back to walking normally after reaching about 6.5cm immediately.

Everyone is different but remember that the older you get, your genetics, your gender and your race will make a difference.

I am confident this surgery can be safely done for everyone, with the right checks in place.

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Quote from: YellowSpike on June 26, 2018, 01:16:27 PMUnicorn, what is the prognosis following your surgery? Do they believe there is a good chance that this will help your leg heal and form a bone bridge?

Don't know, will see surgeon this Friday.  Having severe pains in the grafted area and right knee pains now.  She said that 2 months is the minimum to see if my body accepts the graft.

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Quote from: totallyred on June 26, 2018, 02:05:18 PMHey Unicorn, first of all best wishes for the recovery.
 I just read your diary. I strongly believe your non-union may be that due to the reason that significant percentage of your original bone is occupied by the nail, leaving little   of this bone to regenerate new bone.  In other words as you said that initially the callus was forming but later in just backed down, this may tell that your existing bone mass could have formed new bone upto a certain length, when  you crossed that limit the bones did not bother to fill the gap as if they knew they would not have succeeded anyways in fully bridging the gap.

So i just wanted to ask/suggest, did you consider either taking the rod out and putting instead a thin rod or reducing the distance between  the segmens by shortening the rod(if that is possible) or any other method in which bones would not have to make so much of new bone mass. I know taking out and putting in rod could be really dangerous esp seeing your frail bones but I guess it would have saved you from lot of trauma..

Yes, thank you for your suggestion.  That is the plan if my bone graft fails.  The grafting method is THE LEAST invasive of the several solutions out there since it has been 2 years now and my 4th surgery.

Because my femurs were over reamed to ram in the 13mm nail, you're right, there are very little to no bone matrices/living cells left to consolidate.  Hence, as you say it, it is too far for the calluses to bridge, so they can't even be bothered.

Hence, if this grafting fails, the surgeon will remove the large g-nail, and implant a thinner Precice Unyte that will be pre-lengthened to 8cm, and we'll slowly shorten me until my calluses join.  And when it does, I will be lengthened back to 8cm.

We're just trying to avoid more unnecessary surgeries like shortening etc. because remember, my goal was not 10cm.  It's because the g-nail cannot stop and cannot reverse.  So when you suffer from non-union holding the nail in place, it can click very easily with every knee movement.  Hence, my doctor called it runaway lengthening.

It has happened to another girl who had one non-union leg that ranaway too and unfortunately, because the leg length disparity is too much between the fused and non-union legs, she had to do a shortening surgery.

I'm just hoping this is my last surgery (besides the nail removal).  I'm sooooo tired of myself and looking at my frankenstein scar riddled legs.  Instead of celebrating my height, I'm purely exhausted from how much trauma it has caused me (mentally/physically) and how it's made my life a living nightmare