Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Sanity on February 21, 2019, 05:40:30 PM
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Planning to go to Dr Barinov in Volgograd russia. Hes an old doctor with years of experience and there are many old diaries from the clinic in Volgograd and their staff is veteran in this. The full final decision will be made after my visit to volgograd which is coming up soon. Considering LATN there. I am really inclined towards this. hoping now it all goes well.
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Let us know how much he is charging these days. Good luck!
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Hi contacted Barinov’s clinic and here are the current prices:
Ilizarov surgery is 14 500 euros inlcuding 1 month stay in the hospital: surgery under spinal anesthesia, meals and medical care. Each additional month at the clinic is 1 200 euros with accommodation, meals and medical care. With 7.5 cm it may take about 8 months till the end of consolidation when the frames can be removed. So, totally it may cost 22 900 euros. There may be some extra expenses, too, if you need supplements to speed up bone regeneration.
At our clinic LATN alongside with Iizarov is also used. With this method you can stay 5 months at the clinic but you'll need one more surgery to implant the nails which costs 4 300 euros., so the price is hardly cheaper.
It's possible to reduce expenses if you rent an apartment and the clinic may help you to find it. This way you can save 300-400 euros a month.
As for complications, if you follow the surgeon's advice and exercise daily, the process is without any complications but I must say that lengthening requires hard work and a lot of patience.
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Why Barinov and not Solomin/Kulesh?
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contacted both. the staff with barinov seemed more helpful. + ive heard its mostly kulesh doing everything so solomin is just there to be there. Also barinov is more experienced and has had more patients. prices are close (kulesh seems a bit cheaper)
In the end both doctors seem fine it comes down to personal preference and what the mind settles to.
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contacted both. the staff with barinov seemed more helpful. + ive heard its mostly kulesh doing everything so solomin is just there to be there. Also barinov is more experienced and has had more patients. prices are close (kulesh seems a bit cheaper)
In the end both doctors seem fine it comes down to personal preference and what the mind settles to.
Thanks.
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If we're being honest misalignment on Ilazarov frame by gold standard should never ever happen since any experienced Doctor can correct it
The only reason people would still go to Dr. Barinov is to be with hot correction girls.
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If we're being honest misalignment on Ilazarov frame by gold standard should never ever happen since any experienced Doctor can correct it
The only reason people would still go to Dr. Barinov is to be with hot correction girls.
what do u mean. r u refering to rgkey? his misalignment occurred way after the frames were removed.
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Its about 5 days after surgery. I can alrdy walk, stand, no pain. Move muscles in all directions.
Did have 9/10 pain 1.5 days the kind where u put hands over mouth to not scream. Well i was expecting it and fully prepared for it. Chose to bear it without painkillers for 2 small advantages.
To signal chemical production to brain. To desensatize pain receptors down a grade for future. Currently painfree and on the right path.
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Has any1 ever suffered the headache with the spinal tap? I didnt know it was something until now.
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You did surgery ?
Barinov have some bad diaries over there but good luck
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You are really strong to tolerate 9/10 pain without painkillers.
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You are really strong to tolerate 9/10 pain without painkillers.
Yea its funny story. I decided to tolerate because i thaught the worst pain was alrdy taken during the hours in anesthesia. I had only local anesthesia so always awake.so after the pain began i counted numbers while judging based on my highest possible tolerance level. I knew i will only get one chance at testing my pain limits in life so might as well play it as a game. Starting with a 3 after anesthesia started to wear of 4,5,6 came quickly. Then stayed there. Thts when i refused painkiller thinking high of me rofl. Mistake! Raised to an 8 8.5 and finally i rated that to be almost 9. 12-14 hours the pain wasnt reducing actually got worse. At this point i decided im gonna take the painkiller coz wgo knows how long it wil last. It was midnight and i didnt want to wake up ppl in the hospital. They also offered me earlier and i had refused. So counted every minute until sunrise. Longest sunrise ever. Then decided to scream painkillers to the nurses. But pain had alrdy reduced down to a 6-7. Thaught ok lets do this then. And hours later came down to 2-3. Lol cant say i didnt give in.
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You did surgery ?
Barinov have some bad diaries over there but good luck
Depends on personal choice totally.
Would u choose to fly with a pilot who has flown 8000 hours with 0 emergency experiences and all smooth landings and highest rated captain or a pilot who has flown 8000 hours with 4000 hours experience of emergency landings.
So see it depends. Btw im not sure how many hes got but i know of 1 only which wasnt his fault completely.
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Depends on personal choice totally.
Would u choose to fly with a pilot who has flown 8000 hours with 0 emergency experiences and all smooth landings and highest rated captain or a pilot who has flown 8000 hours with 4000 hours experience of emergency landings.
So see it depends. Btw im not sure how many hes got but i know of 1 only which wasnt his fault completely.
Don’t forget to show pictures and X-rays
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Don’t forget to show pictures and X-rays
Just that? Follow me for it. Pics surely today and x-rays when i get my 1st xray done.
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http://imgur.com/a/hUSJ7WN
http://imgur.com/a/ytDND9k
http://imgur.com/a/A3hhZxk
This spinal headache has been the worst part of my experience now. I came in to get my legs done and got my head done. Ffs
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Good luck man, I basically did the exact same procedure with very similar Russian doctors. I'm 8 months post, I hope my diary can help you.
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Good luck man, I basically did the exact same procedure with very similar Russian doctors. I'm 8 months post, I hope my diary can help you.
Sure bro. I already followed ur diary until now. Ul find my comments in there somewhere. :)
Also I want to give a shoutout to stripes, it was stripes journal and his sharing that helped me tremoundously in preparing for this. Wow wat a man. I think hes already busy with his life and gone from here years ago. I wish to become a silent legend of the past too one day like him. Hope so.
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Currently in not so good spot. The spinal anesthesia has caused me bad headache when i sit. Its cuasing so many problems right now. I hoping it will go away but its been 8 days now and its still here.
Legs are i think how ther supposed to be but not improving as much as they shuld be because i cant do anything other lie down due to spinal headache.
I just want this headache to go away so i can do something.
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If you truly have a spinal headache, it is caused by spinal fluid leaking from your spinal tap site--not necessarily outside your body--you may not see the leak. The leak results in low cerebral-spinal fluid which presents with symptoms of a headache, especially when upright. Spinal headaches usually go away on their own but can last a couple weeks.
Hydration (drinking lots of fluids or taking fluids via IV) and consuming caffeine can help.
If hydration and caffeine do not improve things; then, you may need drugs or even a blood patch. A blood patch is injection of your own blood into the spinal tap site--your blood clots to form a patch that prevents fluid from leaking and gives your body an opportunity to close the leak and build-up fluid.
Best of luck to push through this unfortunate development.
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Thanks for that really helpful.
Ive been on iv liquids, caffeine and so much water. I cant sit longer than 30-40 mins and then it begins. Ive alrdy left the hospital and now in clinic, but if it lingers for another week im pushing for the blood patch idc.
This is just ruining everything. I cant focus on legs and my turning will begin soon and stil stuck with this t headache.
Doctor says i need to walk for hours. Yea right with this headache i can only stay in bed 24/7. If i develop some complication of leg it will be this anesthetist and stupid headache to blame. Still hoping it goes away in a few more days.
I dont know why da fck body cant even seal 1 little tiny hole for 8 days. Fml
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Remember that you are also probably on blood thinners so clotting is more difficult.
Also, I totally understand you want to get started but please believe that you will have plenty of time to turn nuts and bolts.
In my experience, things change on a daily basis during this process so try to think of your headache as nothing more than your "thing" for a few days rather than that you hit a big setback--you didn't--just dealing with a thing for a few days.
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Thanks for that really. Do u think it can seal the hole in 2-3 more days? Im not even on any blood thinners. I mean how big is that hole even. Just a needle sized hole it shuld be. Shouldnt take much longer. I cant understand the science behind it. How can it keep leaking. Really beyond me is the science.
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Please understand that I do not know whether you have a spinal headache--if your MD diagnosed a spinal headache; then, you should discuss treatment and time frames with him or her.
But for the fact that you reported a spinal headache, I would have first wondered whether you are having an allergic reaction that presents with a headache. If you self-diagnosed a spinal headache, have you also considered a potential allergic reaction to any of the new things to which you have been introduced? These factors can include not only the obvious such as different foods and medications but also less obvious factors such as the laundry soap or air freshener used by the hospital or clinic.
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Sanity, this is very unfortunate.
First of all you should not have gone to Russia to do this. All russian patients have long lasting nerve damages, dropfoot and other complications.
If the headache lasts for another 5 days i suggest you take off the frame and return to your home country for medical support.
Nothing is more important your life. Dont put it in such risk.
You can always do LL later if you still want to.
PS dont take advice from nutjobs like the guy over me. close to age of 60 with hip replacement, he did 9cm LL in russia because no sane doctors would perform it.
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It gets bad when i sit up and better to non existant when lying down. Also all other symptoms match to a spinal headache (literally everything) and doctors agreed it was a spinal headache.
Btw its gotten a bit better in the last couple of days. Improved a bit. And everyday the headache when i sit is reducing a little amount. For example I couldnt sit for longer than 30 mins in start now i can sit for 2-3 hours until it begins and i can start feeling pressure up there. And everyday i can sit little longer than before. So finally good signs.
Legs are doing good. I walk for long time and dont feel tired or painful. Seems good as far.
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Good. Seems like you are moving in the right direction.
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Good. Seems like you are moving in the right direction.
Yes for now and hopefully in future. All seems good.
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Distracting everyday at aproximately 1mm. Dont feel any pain. Only slight pulses of pain at night for a little time. Walking as often as i can. Feeling the normal tightness in soft tissue that comes with distracting.
Everything on track!
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Distracted around 1cm. Getting quite difficult to walk and its getting painful. Also walking is very slow now. I was expecting all this at maybe 4-5 cm but clearlyg not at 1cm. I thaught 1cm would be a breeze but no. Also a little numbing in right leg and discomfort.
Idk if anyone else felt all this so early on in distraction. Its kind of demotivating
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There’s always going to be unexpected parts in this journey.
Just keep going. Time your painkiller pills consumption so you’re not chasing but preventing the pain beforehand as much as possible, perhaps.
All the best.
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Read my diary. My first 2 months were the worst part. Pain management and motivation are key to the distraction phase, and a good doctor/nurse/physio to put your mind at ease. EVery new pain you will think is the end of the world, but in the bigger picture it's not. I literally distracted at a rate of 0.4 mm to 5.5cm so my distraction took double the time than normal. It sucked and the pain was so high that I couldn't go fast.
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Hi Sanity
I feel sorry for you. Looks like you have a very severe pain apparently due to a spinal headache. I didn't do external so I don't really know how you really feel but do understand how difficult cll can be. First 3-4 weeks are hardest due to the surgery. Your body needs quite long time to recover just from the surgery since this surgery is so invasive. Take any pain killers if available during this time. Pain management is the most important thing during the first month! Then you will feel better and better until your legs reach a moment of serious tightness. Although you may feel tightness already at 1 cm distraction, it may be due to complex reasons including surgery, inflammation, swelling, and pain, etc. After you get over the first stage of pain, you will face the real tightness which normally happens around 4-5 cm, as you mentioned.
Good luck!!
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Read my diary. My first 2 months were the worst part. Pain management and motivation are key to the distraction phase, and a good doctor/nurse/physio to put your mind at ease. EVery new pain you will think is the end of the world, but in the bigger picture it's not. I literally distracted at a rate of 0.4 mm to 5.5cm so my distraction took double the time than normal. It sucked and the pain was so high that I couldn't go fast.
I see, But all this mustve happened to you atleast after 3 cm right and not at 1cm?
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I see, But all this mustve happened to you atleast after 3 cm right and not at 1cm?
Mate I had struggles at 1cm. It was my hardest part. Things were bleeding and painful.
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1st xray and consultation. Things look very weird.
I turned around 0.9-1cm and on the xrays it shows only 2mm gain. I think 2 is probably even the space there is right after surgery. I dont know wats happening but i can swear i turned 1cm its recorded and even the rods are longer. Does this mean my bones have preconsolidated.
I started turning on 10th day of surgery and turned 1mm everyday uptil today my 10th day of turning. The Doctor used the key to make several turns instantly and he said it looks like i have very hard soft tissues.
Anyways did any1 else face this. Looks like im preconsolidated right? 1cm turning and 2mm which is usually the gap after surgery itself.
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I wonder what your surgeon thinks about your situation? Isn't he in the best position to advise you?
Nonetheless, when you hear hoof beats behind you, please don't immediately think "zebras". Stated differently, the simplest explanation for a situation is often the correct explanation.
If you are only seeing 2 mm of distraction; then, the simplest answer may be that you only distracted 2 mm.
It would be challenging to accept that you distracted 10mm but had the most miraculous healing in the world so that it looks like you only distracted 2 mm.
Bone simply does not heal like that. I encourage you to read some journal articles that explain the biological course of healing for broken bones. Once you do, you will likely agree that you are not pre-consolidated.
What's more, so long as the top of your fibula is captured by at least one screw; then, pre-consolidation is nearly impossible with external lengthening. This is so because when you distract, you will merely pull apart your bones at the osteotomy site because the site is the weakest part. (If your fibula is not captured; then, the cartilage at the top of your fibula can be the weakest point; thus, a risk of pulling that cartilage exists.)
While I encourage you to discuss your project with your surgeon and to take your guidance from him, two possibilities come to mind to explore. First, it is not uncommon to turn nuts in the wrong direction so that you cancel out turns in the correct direction. Some folks wrap tape around the rod just below the nut to help ensure you become used to turning the nut away from the tape.
Next, it is also possible that you merely "took up slack" in your first week of distraction; thus, you will see more normal distraction next week.
All-in-all, it is probably too soon to sort things out definitively. I encourage you to talk with your surgeon. This is a new experience for you. It is likely NOT a new experience for your surgeon.
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I wonder what your surgeon thinks about your situation? Isn't he in the best position to advise you?
Nonetheless, when you hear hoof beats behind you, please don't immediately think "zebras". Stated differently, the simplest explanation for a situation is often the correct explanation.
If you are only seeing 2 mm of distraction; then, the simplest answer may be that you only distracted 2 mm.
It would be challenging to accept that you distracted 10mm but had the most miraculous healing in the world so that it looks like you only distracted 2 mm.
Bone simply does not heal like that. I encourage you to read some journal articles that explain the biological course of healing for broken bones. Once you do, you will likely agree that you are not pre-consolidated.
What's more, so long as the top of your fibula is captured by at least one screw; then, pre-consolidation is nearly impossible with external lengthening. This is so because when you distract, you will merely pull apart your bones at the osteotomy site because the site is the weakest part. (If your fibula is not captured; then, the cartilage at the top of your fibula can be the weakest point; thus, a risk of pulling that cartilage exists.)
While I encourage you to discuss your project with your surgeon and to take your guidance from him, two possibilities come to mind to explore. First, it is not uncommon to turn nuts in the wrong direction so that you cancel out turns in the correct direction. Some folks wrap tape around the rod just below the nut to help ensure you become used to turning the nut away from the tape.
Next, it is also possible that you merely "took up slack" in your first week of distraction; thus, you will see more normal distraction next week.
All-in-all, it is probably too soon to sort things out definitively. I encourage you to talk with your surgeon. This is a new experience for you. It is likely NOT a new experience for your surgeon.
Il agree it is not premature consolidated i meant pre-consolidation by which i meant was soft callous putting resisting forces especially fibular
Anyhow what you said would not apply to my case because before my 1st day of turning i specially put a mark with a red marker pen on each lengthening screws that are inside the rods and that mark has gone past below lower and also the top of the screws has lesser space and 2 screws were finished and the doctor needed to replace them with longer screws. Lol i was particularly attentive to not turning it backwards each and everytime. I was always attentive and 100% focused during turning and turned 4 times everyday for 1mm. Its clear.
Something else is going on which I dont understand. I talked to the surgeon he says its because my soft tissue is resisting alot but i dont know about that one.
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I am glad to know you are being attentive and implemented a protocol to better ensure you turn the nuts in the proper direction.
The body puts tremendous pressure on your rods. If your body was not allowing distraction, you will often see your rods start to bow. If that happens, additional rods are sometimes added to spread the load.
If you see no bowing of your rods, I would speculate that you just took up slack with most of your first centimeter; however, I defer to the judgment of your surgeon.
It seems unusual to replace rods already--usually rods are installed with at least a few centimeters available for distraction.
It is apparent you did significant research before undertaking this project and approached the project with a good level of knowledge. I encourage you to rely on the input of your surgeon and your understanding of the process while listening to your body.
Best of luck!
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I am going to give you a bit of advice, the Russian medical system is a lot different than the western ones. In all honesty, they are much less attentive, they seemingly care less, or push problems to the side compared to, say, Canada. This shouldn't worry you, Every week I was thinking my legs were either infected or I've pre-consolidated and I complained about it, and every week I was just fine. We get very pampered and are used to doctors attending every one of our needs, but it is a different world. If your doctor says it'll be okay, you have to trust him.
If there is a major problem, then the doctor will mention it. This surgery has been preformed a lot in this side of the world, and they should know best. It's very hard to not have this monkey on your back thinking everything is going to shiit, but try your best, trust your doc, and keep on training.
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I am going to give you a bit of advice, the Russian medical system is a lot different than the western ones. In all honesty, they are much less attentive, they seemingly care less, or push problems to the side compared to, say, Canada. This shouldn't worry you, Every week I was thinking my legs were either infected or I've pre-consolidated and I complained about it, and every week I was just fine. We get very pampered and are used to doctors attending every one of our needs, but it is a different world. If your doctor says it'll be okay, you have to trust him.
If there is a major problem, then the doctor will mention it. This surgery has been preformed a lot in this side of the world, and they should know best. It's very hard to not have this monkey on your back thinking everything is going to shiit, but try your best, trust your doc, and keep on training.
Yea im keep on turning and i hope ur right there. This is intense.
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On my right foot at a certain movement i get intense pain like 10/10 for 2-3 secs and the muscles of foot spasms and shakes like an electric jolt. Then its completely fine. Sometimes it can happen at knee extended and sometimes on bent while trying to move foot im not sure at what exact position it can occur.
Due to its fear of happeneing im not moving my leg at all. Also not walking at all even to toilet because if this jolt occurs while standing il definetely fall. I don know if any1 experienced this weird jolt and extreme pain for 2 secs acxompanied by a total foot spasm.
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How's the pain been?
What about painkillers?
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improved. apparently much of the pain and problems were because of right foot. Its a flat foot before surgery and now its pronated even more.
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I had a little pronated feet and now after doing 1cm i have even more pronation.
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What does the doctor say about it?
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not much. he said if u have pronation before it will remain or increase with lengthening. He told me to use orthotic supports. Well things are only in the begining as of now and i still have to lengthen alot and i'l see what else are my options. I know it can be fixed with surgery but i dont wana go that route. hopefully exercises, stretching and orthotic support will be enough.
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Hi sanity how are you?
Are you doing LATN ? What’s difference between LATN or LON and why you choose this .
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Hi sanity how are you?
Are you doing LATN ? What’s difference between LATN or LON and why you choose this .
Yes im doing LATN. Mainly because having only ilazarov during distraction is usually better for controlling bone. Im sure you can look this up in detail somewhere.
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today while standing up from a chair my crutch slipped and i fell straight down on the chair with a jolt. Although the shock wasn't very strong but it was enough to give quite a jolt thru my legs, but i dont know what damage it could've caused to the regenerate bone or the alignment. There was only a slight pain for a few minutes and then back to normal. I don't know if i should be worried or not.
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I am have high pain in left leg. 1st it was on the upper shin area and now it has has moved to the calf and ankles. I was scared it could be compartment syndrome but there is no swelling watsoever. So possibily its a nerve pain.
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The intense tightness! Feels like everything will rip apart
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At 4cm mark the fight against contractures begins
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At 4cm mark the fight against contractures begins
No gain without pain. Focus on your stretches it’s just a piece of cake for a big dream.
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Things should actually be getting easier for you now. It's just the first month that is beyond brutal. I was relieved after I did 1+cm, because then my bones weren't rubbing against each other when I got up to take a walk. You timed lengthening just right. I started in July and wish I had started in the spring. I was fortunate enough to get the nail before the snow really hit. I got the nail a year and a half ago with Barinov. It sounds like you got the infamous headache. I lucked out on that, but I've heard stories... My friend told me she was stuck in bed for almost a month due to the pain from that. Unfortunately, I felt a lot about this surgery involves luck and mainly good genetics. Anyone that downplays the pain either sat in bed at all times or didn't wear the foot-holders. I would get 2-3 hours of sleep if that per night because of those damn foot-holders, but I'm glad I stuck with them. (Be sure to have the tailor make the straps for you.) I felt like those were key to me going for the extra length. Over-all, the entire experience was like Pai Mei's training from Kill Bill 2--definitely not for the weak, lol.
But Parahot takeout and Alexy the delivery man are your friend if you haven't already discovered about them. Be sure to tell the clinic Mike from the U.S. says hi! The real fun will begin after the 5.5-6 cm mark. That's when you'll have to really watch out for ballerina and pre-ballerina. Mainly just make sure you walk with your feet straight and don't let them fan out to the side.
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thanks alot man. yes ur right this thing is a real test of ones patience and strength. at the moment im at the 5cm mark and im experiencing pin cutting on 1 of my pins. its been a week and the pain on movement is hell (worse than any pain ive ever had leave nerve pain). i dont know if u had pin cutting or not and how long it lasted. I havent discovered about alexy but som1 else. There wernt many ppl when i came here and a guy named alex who was almost done and going back home after a very long stay here, which i dont know if you know about or not. We developed a very good friendship but unfortunately he was all done and left for home a couple of weeks ago. The other guyz are more like mind their business and ive learned to survive on my own like a lone wolf.
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Yep, I met him before I left and still have his contact. We all shared our collective knowledge from one generation of patients to the next. Glad to finally hear he left, he probably had Volgograd down to a science by then, so you had a great teacher! If you have a delivery guy already, that's good. Alexy was perfect for us--especially when my roommate and I lived in an apartment. He even helped take me back to the airport in the dead of morning. Alexy was the same guy Stripes and many others used. That online grocery store wasn't too bad either, i don't remember the name of it.
I had a little bit of pin cutting, but mostly pin "angling." But I do remember it getting to a point where "paryvaska" became a torture session because our bandage nurse loved getting right into the cut :). I was kind of a weird patient where I didn't get too many common issues like everyone else. I didn't even get a single pin break, which was kind of odd (Stripes didn't either I don't think). But we were LATN patients, and most of the pin breaks I witnessed happened with patients in the consolidation phase of the classic method.
But I did get some really bad burning skin pain that was one of the worst things I had when I was there. It happened at around the 5cm mark. I think I was the only patient in our batch that got it, but Barinov said it happens when the soft tissue membrane or whatever hasn't caught up yet. It felt like constant fire ants on my skin. I think I took a break from lengthening for a week or so.
But yes, I guess every batch of patients is different in terms of culture. Most people think it's nothing but hot correction girls, but that wasn't the case for me until I left the clinic. Most of the Russian patients left as soon as possible for cheaper apartments after only a week or so. It was mostly older women with money that stuck around in the guest houses. We all kind of formed our own cliques as well. (Mostly due to language barriers or one's walking abilities. Ex: It's hard to hang out with someone that walks like a snail in the hallway when you can walk at a normal pace outside.)
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sanity - i was there in 2014/15 - u have to stay positive and embrace it all over there - i loved volgograd and even went back last year for the world cup!!
viva mamyev kurgan!!!
ps barinov is an excellent doctor... :)
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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.
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I'm sorry to hear that. Were you doing tibiae?
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yes tibias. the regenration is not too bad but its below average.
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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.
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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.
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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.
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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.
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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.
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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.
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x-rays https://imgur.com/a/AZlwA2n (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.
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I think the nail will help .. Do you regret doing it in russia?
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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.
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Remember friend we are all with you.
Pain is temporary, glory is everlasting.
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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.
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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.
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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.
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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.
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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.
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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?
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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?
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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.
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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?
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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.
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@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.
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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.
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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.
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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
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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 :D
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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.
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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. :/
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How are you doing, Sanity?
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im doing good. new xrays showed good progress, i wil probably upload the xrays sometime these days.
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1 frame is off. 1 to go....soon
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ok so the frames r off, walking is pretty normal much better than i expected. the only thing is there is slight weird kind of pain in the right knee while walking. i cant even classify it as pain but more like a weird tingly feeling. i hope it goes away once i resume walking normally coz its only been a couple of weeks walking without frame. if any1 had this experienceplz share.
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Hi Sanity, how was the recovery like after the removal? Were you advised to start walking unaided as much or told to stay off walking?
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Hi Sanity, how was the recovery like after the removal? Were you advised to start walking unaided as much or told to stay off walking?
i was only told to use crutches for a few days thats all. anyways recovery is fine. just the right knee feels a bit choppy, but i guess resuming normal functions wud remove that. the fcking height neurosis is gone so thats the biggest achievement.
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Wow good to hear! Hopefully my recovery post removal will be a smooth sailing one.
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i dont know if il be able to respond or come here again and write. what i will say is at the end of it all, dont do this surgery if u think gaining 2 inches will change everything and make u happier. it will not make you happier or atleast it didnt for me. I still need my cigretes and zone out sometimes in my head. yes it will help remove height neurosis tho if u had it to begin with. thats probably all.
at the end i will say just use ur time instead to better ur lives, make good friends and try not to focus too much on physicality of urselves and others, even tho thats how this social media generation is coming up to be. just use ur time wisely please. i honestly dont know where true happines lies....
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Do you suggest don't do this surgery?it is doesn't worth?
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do you recommend dr barinov and why you chosed him
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Hey man.... Any Updates?