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[james696969]

I'm sorry to hear that. Were you doing tibiae?

[Sanity]

yes tibias. the regenration is not too bad but its below average.

[wannagrowtaller]

Some depressing news. My regeneration is not so good so ive been told to stop lengthening. I really wanted to make it to 7cm or atleast 6.5 but if i do that now i may end up in the frames for a very long time. Im just at 5cm right now and really wanted 7cm but atleast push it to 6.5cm. This seems a bit depressing and overwhelming.

At least you don't need ATL. At least your doctor told you to stop in time and you will not have non union. Better than alternatives.

[Sanity]

yes i agree. The doctor prioritses my leg's health and well being over additional length gains. He did allow me 0.5cm for now and will judge after that if i can make another 0.5cm. To end it at 6cm would be awsome. I would be very much happy. But im also glad he prioritises my health over it. I hope time be on my side and God help me through this.

[Sanity]

Very tight skin and muscle on left leg on the front part. its where thebone is distracted im getting very tight skin if i bend the leg fully its very painful. hope this fixes in a week. left legs mobility is hampered due to that.

[Sanity]

I am almost done lengthening and will be waiting to get my legs in a better shape for the nailing surgery. We have discussed, although i wanted to complete 7cm initial goal but in that case the tibias will be unproportionally too long and its also not advisable from a medical pov so i settled for slightly less than 6cm. The remaining 0.3mm of the decided amount (which was allowed to me earlier by the doctor) i will distract once my knees are fully straighter. I am satisfied with the length I have gained considering the balance between the medical limitations and my needs.

The bone regeneration is average, not very good and not very bad. Walking with crutches and its still difficult especially when getting out of bed or chair, need more exercises and walking as the recovery phase begins. I am not fully satisfied with the functional side of the legs currently as I've yet to experience the recovery phase and the return of my normal walking ability. I did walk during the lengthening phase but the time walking was pretty average to minimal. But now as the recovery phase begins I am ramping it up. Things seem to be going good from here onwards and i hope the recovery phase brings the best with it.

[dreamingtall]

Hi sanity,

I know I'm late to the game but wanted to check up and see how you are doing and how your consolidation is going? Also how old are you? Sometimes I wonder if over early 30s is asking for complications. we may all have to take our chances.

[Sanity]

Hi sanity,

I know I'm late to the game but wanted to check up and see how you are doing and how your consolidation is going? Also how old are you? Sometimes I wonder if over early 30s is asking for complications. we may all have to take our chances.

Well im doing better. consolidation is medium, not too bad and not too good. altho i am getting brittle bones of tibias (shows in xrays that tibias and feet lost density) but i asume it has much to do with the stress+reduced weight bearing that ll brings with it. i hope to better it in the upcoming months with improved nutrition and more weight bearing exercises. im 25btw. i think uptil 30-35 shouldnt have many problems.

[Sanity]

x-rays https://imgur.com/a/AZlwA2n

i am feeling better, walking is slightly improved but still need crutches. Right now that is I am loosing bone density in tibias and feet bone overall and some significant osteoporotic bone can be seen at the bottom. Most likely due to not bearing weight for a long time and the stress on the bone due to lengthening has caused it. I finished lengthening about a month ago with just under the 6cm mark.

Will be getting the im nail soon probably in 3 weeks time. Until then i intend to exercises and walk as much as possible.

[dreamingtall]

I think the nail will help .. Do you regret doing it in russia?

[Sanity]

I think the nail will help .. Do you regret doing it in russia?

well honestly no, not uptil now atleast. things have gone pretty much normally for me i guess. dont know what the future holds tho.

[Montreal172]

Remember friend we are all with you.
Pain is temporary, glory is everlasting.

[Sanity]

have started to walk unaided but its a very sh**ty walk. regeneration on the right leg isnt good but left is better. Need more time for PT and walking to see where I stand. Pains are almost over since its been a month i put down the wrench. Also contemplating on the nailing decision and pros and cons nowadays.

[Great321]

You are "only" 6 months in, now would be a good time to get the nails. Really compare your X rays and ask yourself how much really has changed whether your bones grow like average or if the growth is quite slow. Considering your low bone density I would highly suggest to get out of of the frames because to battle low bone density you need to work out and get strong muscles. Strong muscles make bones stronger too. I'm no expert but I watched that in a reliable german documentary about that topic a few days ago. I can tell you from my own experience that PT without frames is much better and you will be able to walk within a few weeks. You will win recovery time, life time and not loose more physical and mental health. Yes another surgery has its risks and costs but for me it was worth it and I wish I would have done it when my doctor recommended it when I was about 6 months in. 

I got more numbness in my right shin even after 6 months. My left leg got a really bad cramp in the 9th months. I could barely walk for a month, on some days my mother had to push me around on a chair.

In the end though you and only you have to make that decision. It is your body. And there are risks with internal nailing with every surgery but there are also some risks with staying in frames for too long.

[Sanity]

You are "only" 6 months in, now would be a good time to get the nails. Really compare your X rays and ask yourself how much really has changed whether your bones grow like average or if the growth is quite slow. Considering your low bone density I would highly suggest to get out of of the frames because to battle low bone density you need to work out and get strong muscles. Strong muscles make bones stronger too. I'm no expert but I watched that in a reliable german documentary about that topic a few days ago. I can tell you from my own experience that PT without frames is much better and you will be able to walk within a few weeks. You will win recovery time, life time and not loose more physical and mental health. Yes another surgery has its risks and costs but for me it was worth it and I wish I would have done it when my doctor recommended it when I was about 6 months in. 

I got more numbness in my right shin even after 6 months. My left leg got a really bad cramp in the 9th months. I could barely walk for a month, on some days my mother had to push me around on a chair.

In the end though you and only you have to make that decision. It is your body. And there are risks with internal nailing with every surgery but there are also some risks with staying in frames for too long.

Well thanks alot. That was quite helpful especially sharing your experience and thaughts. Yes I have certainly thaught about this too, the same thing i compare in my head like staying for a very long time in frames and probably saving money and risks of another surgery or just getting out of frames and focusing on recovery totally and walking and doing light PT in gym etc. I am always measuring which is better. Your opinion is what I have also heard from another patient who didnt do nailing and another guy who got the nail is half his time and recovered almost doubly. So yea i am weighing in on the nailing side more and more everyday.

[California2]

I did not read your entire log so please forgive me in advance if I do not appreciate a significant fact.  As I understand things, you did purely externals and are now considering LATN because you are concerned about bone growth and believe you will be able to increase weight-bearing after LATN.

I did LATN but did not bear weight until I had 75% consolidation -- which means that if a bone was a rectangle; then, 3 sides of the rectangle would show cortical bone (the hard white bone in x-rays) touching.

Even so, when you get the hard bone growing up from the bottom and down from the top so that it actually touches on 3 sides, calling it "75% consolidation" does not seem very accurate to me.  So much back-filling and fleshing out still has to happen that it is more like 50% consolidation.

In any event, you can see by my x-rays that once I started walking, the bone really began to grow.

So, my message is "don't despair".  If you are growing bone at all, the odds seem that consolidation will eventually occur.  If you haven't installed nails yet; then, doing so now may not be justified from a cost-benefit standpoint.

As will most medical decisions, I encourage you to talk with your medical team about the pros and cons of changing course especially if you are already walking unaided.

Last, everybody starts walking poorly at the start--like penguins.  I have been walking for several months and am just starting to have a more normal stride.

[Great321]

I overlooked your sentence that you are now walking unaided. If you are really walking unaided more often than using a walker then chances are good that your bones will grow better now. Just be honest with yourself. I did wait until the 10th month and I almost wanted to wait even longer just to save money but don't wait as long as me But giving it about 6 weeks more until deciding sounds still safe for you.

Walking, PT, proteins and supplements are the key I guess. I underestimated PT before but it's really important! But with the frames and its certain pains in my case it was almost impossible to do enough.

[Sanity]

I did not read your entire log so please forgive me in advance if I do not appreciate a significant fact.  As I understand things, you did purely externals and are now considering LATN because you are concerned about bone growth and believe you will be able to increase weight-bearing after LATN.

I did LATN but did not bear weight until I had 75% consolidation -- which means that if a bone was a rectangle; then, 3 sides of the rectangle would show cortical bone (the hard white bone in x-rays) touching.

Even so, when you get the hard bone growing up from the bottom and down from the top so that it actually touches on 3 sides, calling it "75% consolidation" does not seem very accurate to me.  So much back-filling and fleshing out still has to happen that it is more like 50% consolidation.

In any event, you can see by my x-rays that once I started walking, the bone really began to grow.

So, my message is "don't despair".  If you are growing bone at all, the odds seem that consolidation will eventually occur.  If you haven't installed nails yet; then, doing so now may not be justified from a cost-benefit standpoint.

As will most medical decisions, I encourage you to talk with your medical team about the pros and cons of changing course especially if you are already walking unaided.

Last, everybody starts walking poorly at the start--like penguins.  I have been walking for several months and am just starting to have a more normal stride.

oh thanks for that. Yea i have started to walk unaided but real penguin walk. p.s  i understand what you mean but my doctors do inform me frames could be on me upto a year mark and most probably more than that considering my slow growth and slow consolidation. You did LATN so i wanted to ask you what are the advantages for it u think?

[Sanity]

I overlooked your sentence that you are now walking unaided. If you are really walking unaided more often than using a walker then chances are good that your bones will grow better now. Just be honest with yourself. I did wait until the 10th month and I almost wanted to wait even longer just to save money but don't wait as long as me But giving it about 6 weeks more until deciding sounds still safe for you.

Walking, PT, proteins and supplements are the key I guess. I underestimated PT before but it's really important! But with the frames and its certain pains in my case it was almost impossible to do enough.

Yes I will come to a conclusion regarding my decision in about a week. How much did u lengthen total and what will u say was the biggest 1 advantage you felt the nail gave you?

[California2]

oh thanks for that. Yea i have started to walk unaided but real penguin walk. p.s  i understand what you mean but my doctors do inform me frames could be on me upto a year mark and most probably more than that considering my slow growth and slow consolidation. You did LATN so i wanted to ask you what are the advantages for it u think?

I knew from the start that I would do LON or LATN because I did NOT want to be in frames for up to a year because I wanted to get back to work.  I couldn't see a good way to explain away the frames to the general public. 

I chose LATN on Professor Solomin's recommendation because he advised me it would provide greater stability because he could use a larger nail after distraction.

At the time, I did not realize (or maybe I did not fully appreciate) that I could NOT start walking immediately once the nail was inserted.  That is, I did not realize I still had to achieve 75% consolidation before I began to bear my full weight.

The overarching point of the nail is to facilitate weight-bearing before the bones are fully healed; and, weight-bearing promotes bone growth which speeds up healing.

However, if you are already walking unassisted, I am not sure the risk of another surgery is warranted.  Stated differently, you are already bearing weight so adding the nail really adds nothing in that regard.

It seems you are basically accepting the risks of a nailing surgery for the sole benefit of getting out of frames.  Don't get me wrong--getting out of frames is a big deal but you have made it this far and the finish line is in sight. 

[Sanity]

I knew from the start that I would do LON or LATN because I did NOT want to be in frames for up to a year because I wanted to get back to work.  I couldn't see a good way to explain away the frames to the general public. 

I chose LATN on Professor Solomin's recommendation because he advised me it would provide greater stability because he could use a larger nail after distraction.

At the time, I did not realize (or maybe I did not fully appreciate) that I could NOT start walking immediately once the nail was inserted.  That is, I did not realize I still had to achieve 75% consolidation before I began to bear my full weight.

The overarching point of the nail is to facilitate weight-bearing before the bones are fully healed; and, weight-bearing promotes bone growth which speeds up healing.

However, if you are already walking unassisted, I am not sure the risk of another surgery is warranted.  Stated differently, you are already bearing weight so adding the nail really adds nothing in that regard.

It seems you are basically accepting the risks of a nailing surgery for the sole benefit of getting out of frames.  Don't get me wrong--getting out of frames is a big deal but you have made it this far and the finish line is in sight.

when u say u couldnt walk even after nails u mean not walk without crutches? and how long was this?

[California2]

I don't remember my exact timeline but you might be able to decipher it from my diary. 

My LATN surgery was January 20, 2019. 

I was cleared to begin carefully bearing significant weight on July 4, 2019.

In between, I went from wheelchair, to rolling walker, to crutches, to a cane.  I was probably in a wheelchair until at least May 2019.  Once out of the chair, I progressed pretty quickly through the other devices.  After July 4, I stopped using the cane altogether within a few weeks.

Most of my significant bone growth occurred after July 4 as shown in my October 2019 x-rays that I posted.

Even so, Professor Solomin told me to expect full recovery by March 2020 -- that is 2 months for every centimeter of distraction.  His advice seems right on target so far.

[Great321]

@Sanity I advise you to ask your doctor wether the LATN nail will be full weight bearing and how many weeks or months it will take you to leave walker/crutches/cane behind.

As you can see California2 and I have been through different experiences so far although we did the same surgery. Dr. Barinov might have a different approach aswell.

Below I quoted a passage out of one of Rozbruch's studies about LATN:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628243/

Bone healing in the LATN group was substantially quicker than that seen in the classic group.

We speculate the reaming through the regenerate enhances and speeds bone healing. In our patient group, bone healing was sufficient to allow full weight bearing without pain within 6 to 8 weeks in most patients. We have observed extraordinary radiographic healing during the first several weeks after IM nailing. This is in comparison to our 8-year clinical experience [24, 29–31, 33–35] observing bone healing after conventional distraction osteogenesis.   

[California2]

I don't know Great's healing timeline so I cannot speak to our differences or similarities but write to remind you that two schools of thought exist on the topic of weight-bearing before significant consolidation. 

One says walk early and often and make bone grow.  The other says walking before 75% consolidation is too risky because it is easy to break your ankle screws and drive your nail through your heel.

My surgical team strongly holds the latter opinion.  I suspect I could have began walking earlier; however, I decided it was prudent to follow the advice of my surgical team.

But even after understanding this split in doctrine, you are already cleared for walking so your issue seems to be more of "will LATN improve my recovery at this stage?" And if so, "does the probable improvement justify the risks of surgery?"

Best of luck whatever you decide.

[Great321]

oh thanks for that. Yea i have started to walk unaided but real penguin walk. p.s  i understand what you mean but my doctors do inform me frames could be on me upto a year mark and most probably more than that considering my slow growth and slow consolidation.

But how often and how long per day do you walk unaided? If you really want to save that money and the risks you could try to walk unaided as much as possible. I assume your bone growth would be faster than now. But that would require really a lot of walking and PT. You have to know for yourself if that is possible. But if your doctors told you that you could wear the frames for at least a year that’s also important to factor in your thoughts.

You did LATN so i wanted to ask you what are the advantages for it u think?

Before LATN I was mostly tied to my bed. Walking (with mostly the walker) was painful. On some days I couldn’t walk at all. My bone healing was below average like yours. I was wearing the frames for 11 months and I could not imagine them to consolidate anytime soon. Getting out of the house or even the bed or a chair seemed like a challenge. Now that time is over.

-   2 weeks and 3 days after LATN surgery I changed from walker to crutches.
-   1 day later I tested walking unaided (a few steps) and it was possible (video available)
-   3 weeks after LATN surgery I was able to walk for 21 minutes straight (with crutches)
-   4 weeks after surgery I for the first time was able to leave the house without a wheelchair, and use the front stairs by
holding one railing, I could walk for 21-30minutes

-   5 weeks and 3 days after surgery I could leave the house and drive the car completely on my own (still hold the crutches for safety reasons)
-   At the same day I published a video of me walking unaided (I was allowed to walk unaided but I was in frames 11 months prior so every case is different)
-   6 weeks after surgery I started walking completely unaided at first only inside the house, soon after also outside.
-   7 weeks after surgery I was on my feet for 2 hours straight (walking, standing) without pain

LATN will definitely improve your recovery and the surgery will be worth for everyone who has to be in frames for at least a year. I was far from consolidation even after 11 months. Jfk (a member of this forum) also did externals with Dr. Barinov. After 8months he did LATN and was happy about his decision until this day.

[Michael01]

Before LATN I was mostly tied to my bed. Walking (with mostly the walker) was painful. On some days I couldn’t walk at all. My bone healing was below average like yours. I was wearing the frames for 11 months and I could not imagine them to consolidate anytime soon. Getting out of the house or even the bed or a chair seemed like a challenge. Now that time is over.

-   2 weeks and 3 days after LATN surgery I changed from walker to crutches.
-   1 day later I tested walking unaided (a few steps) and it was possible (video available)
-   3 weeks after LATN surgery I was able to walk for 21 minutes straight (with crutches)
-   4 weeks after surgery I for the first time was able to leave the house without a wheelchair, and use the front stairs by
holding one railing, I could walk for 21-30minutes

-   5 weeks and 3 days after surgery I could leave the house and drive the car completely on my own (still hold the crutches for safety reasons)
-   At the same day I published a video of me walking unaided (I was allowed to walk unaided but I was in frames 11 months prior so every case is different)
-   6 weeks after surgery I started walking completely unaided at first only inside the house, soon after also outside.
-   7 weeks after surgery I was on my feet for 2 hours straight (walking, standing) without pain

LATN will definitely improve your recovery and the surgery will be worth for everyone who has to be in frames for at least a year. I was far from consolidation even after 11 months. Jfk (a member of this forum) also did externals with Dr. Barinov. After 8months he did LATN and was happy about his decision until this day.

Good reason to do stryde.
http://www.limblengtheningforum.com/index.php?topic=9814.0

[Great321]

Good reason to do stryde.
http://www.limblengtheningforum.com/index.php?topic=9814.0

of course stryde is superior but in Sanity's case LATN would be the better option now

[Sanity]

But how often and how long per day do you walk unaided? If you really want to save that money and the risks you could try to walk unaided as much as possible. I assume your bone growth would be faster than now. But that would require really a lot of walking and PT. You have to know for yourself if that is possible. But if your doctors told you that you could wear the frames for at least a year that’s also important to factor in your thoughts.

Before LATN I was mostly tied to my bed. Walking (with mostly the walker) was painful. On some days I couldn’t walk at all. My bone healing was below average like yours. I was wearing the frames for 11 months and I could not imagine them to consolidate anytime soon. Getting out of the house or even the bed or a chair seemed like a challenge. Now that time is over.

-   2 weeks and 3 days after LATN surgery I changed from walker to crutches.
-   1 day later I tested walking unaided (a few steps) and it was possible (video available)
-   3 weeks after LATN surgery I was able to walk for 21 minutes straight (with crutches)
-   4 weeks after surgery I for the first time was able to leave the house without a wheelchair, and use the front stairs by
holding one railing, I could walk for 21-30minutes

-   5 weeks and 3 days after surgery I could leave the house and drive the car completely on my own (still hold the crutches for safety reasons)
-   At the same day I published a video of me walking unaided (I was allowed to walk unaided but I was in frames 11 months prior so every case is different)
-   6 weeks after surgery I started walking completely unaided at first only inside the house, soon after also outside.
-   7 weeks after surgery I was on my feet for 2 hours straight (walking, standing) without pain

LATN will definitely improve your recovery and the surgery will be worth for everyone who has to be in frames for at least a year. I was far from consolidation even after 11 months. Jfk (a member of this forum) also did externals with Dr. Barinov. After 8months he did LATN and was happy about his decision until this day.

Yes i can walk unaided but there is this one thing. Somedays there is pain and difficulty moving muscles due to the restrictions of the pins on hte leg musculature. So thats that but i would say its very achievable to walk unaided if a practice more. im more lazy.

-walking undaided is not in equation as i can already do that somewhat.
-cost for staying such a long time in a foreign country could almost be upto the cost of surgery at the end of it all (80% possibly)

Right now its only like staying in frames for a long time VS getting to life quicker(also working out and stuff). thats pretty much it.

[Sanity]

I don't know Great's healing timeline so I cannot speak to our differences or similarities but write to remind you that two schools of thought exist on the topic of weight-bearing before significant consolidation. 

One says walk early and often and make bone grow.  The other says walking before 75% consolidation is too risky because it is easy to break your ankle screws and drive your nail through your heel.

My surgical team strongly holds the latter opinion.  I suspect I could have began walking earlier; however, I decided it was prudent to follow the advice of my surgical team.

But even after understanding this split in doctrine, you are already cleared for walking so your issue seems to be more of "will LATN improve my recovery at this stage?" And if so, "does the probable improvement justify the risks of surgery?"

Best of luck whatever you decide.

Yes you are pretty much on point with my case. I know it shouldnt be such a tough decision but i equally weigh both things(pros and cons) and im stuck in the middle really. :/

[IwannaBeTaller]

How are you doing, Sanity?

[Sanity]

im doing good. new xrays showed good progress, i wil probably upload the xrays sometime these days.