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my 3 year old son had pseudarthurosis of his right tibia. has any one had this or know about it i know as much as i can find out but know one knows anyone that has had it of the op to put it right witch alfie is due to have in gosh london in october it's been a 3 year wait for it. can anyone help.......
I have pseudarthurosis and can tell all I know about it. What operation is he having?
hi he is having 8cm of bone taken away and ring put on witch i have to turn 4 times a day then they will close it with a bit of bone from his hip.... thank you x
Hey yep hes having the illizaroth fixator. I have had that 6 times and though it left scaring, it worked a treat. Those fixators allowed me to walk it took time and a few of them 3 on each leg, it helped so much.
I have only had the ones you turn twice but they were the ones who did the most for my leg.
Fixators in general are painful, uncomfortable and not a nice experience, but! They do wonders. most people with nf and psudarthrosis have success with fixators. Its not to say it solves everything I still had many other operations to mend my bones but the fixators combined with the other operations allowed for so much and saved my legs.
Psudarthrosis means a long road for your son but dont give up and keep fighting as its worth the pain and the battle.
hi, my son had a fixator on when he was 8 months old. it is a struggle with young children as they dont know whats going on, and keeping it infection free is a nightmare, however it did work wonders and he is now in just a cast, he had his operation in london, well just outside and his dr was great, unfortunatly retiring ahhh. unfortunatly the operation is rarely a one off and my son will be due to have another in time. he has never known no different so accepts his condiotn. unfortunatly many other kids struggle to accept it.
i was told my son couldn't have the op till he was 4 so we have had a long 2 year wait for it...
Yeah I had to wait till I was older as the bone needed to grow a bit more and I needed to be strong enough to move with it as the metal weighs a bit.
It is a struggle but is soooo worth it
i would just like to say a big thank you to everyone. alfie is having his op on the 12th oct... they told me it would be 6cm of bone but now they say it's going to be 8cm.. i am so scared but feeling strong at the mo his doctor mr bradish is fab.....
My dd is 7 and has this, we are now starting to think about amputation to give her her childhood, we have protected the leg for so long and now the leg is pretty messed up. It is a struggle and I hope do what is right.
Good luck with the surgery.
i have been told this can happen but i look on it as whats the point in keeping a leg thtas no good and u have nothing but problems with... surly it's better if it comes to that to not have then to have problems and apin with. when alfie was porly last year due to an infcted pin in his leg i told then to take it. but they luckly got rid of the infec and had the pin removed..... i hope all goes ok i'm sure she will be just fine kids are stronger than us most of the time xxxx
I ad this. and recently had my leg ampuated, after years of many failed operations, my leg broke at 8 months old in a cast. It was placed in a cast to protect it! The leg usually breaks before age 2. And once it dose it almost never mends. The bones grow apart not together. I was in a long plaster cast for 3 years stright for each surgery then in a long leg brace after that and back and forth, I had bones taken out of both hips at different ages for bone grafting in hopes it would mend. I had pins, rods, fixaters, nuts and bolts in my leg. The cast and brace kept my leg from growing. my leg was 3" shorter and 4 size different in shoe size. It was very painful and veru useless. Amputation was suggested many times to my parents but they rejected and choose many 16 operations that did not work. Just 6 years ago I developed a major bone infection and no choice but to amputate. Odd since this was suggested all my life. When in the long run it would have been the best thing that I should have had. The more pain a amputee has before amputation the greater pain after. and this I find is true. If amputation was done in place of all the time wasted and pain I would not have the continued pain I have today. Becaue of all the cutting of the nerves and tissue I have extended pain today. I know a few chidren on anothe site The Children's Tumer foundation, who have choose amputation and the child is much better off if it is done young and before any major operations on the leg. People would say to me what I still had my leg. "at least you have a leg" ! how stupid is that? Yah but its useless. Good luck with this situation its a life long problem and very searious. The thing is not much can be done for this problem noting new, the kids are having the same exact procedures I did that is mind blowing. Until they find a way to mend the leg amputation is the best option in my opinion. I wish you my heart felt best.
what a sad story my son as u said broke his leg when he was17 mounth has so far has only had 2 pins put in 2 years in casts this is to keep him going till he is 4 in october.. then the fixaters done in oct. but if that doesn't work i will not be putting him thou any more!!!!! my doctor mr bradish does not belive in keep doing things that may or may not work.. witch i think is good. so there for if it doesn't work then thats it. at least he is young and can adapet.. i wish you all the best. too. i have been told alfie's op is being done in a differant way as the are only taking the tibia and the fibia they are leaving that in tact... i have hered this is not very offten done. so lets hope. xxx take care x
Thank you ! for your understanding, I'm sorry I don't have a more positive story about this. Iam happy you have a good attitude about this, Like I said yeah I had a leg but what good was it? Another thing to remember is that the more operations and the more they monkey with the leg the greater pain after amputation. So the less operations the better.. Best of luck and my deep understanding..
Hugs,
My leg kept braking too but my parents kept up the operations, my leg was very bad. I had 5 fixators before it worked completely but now I am very active.
I am glad they kept up the operations... I am glad to have my legs.
My legs broke while in a cast and brace, and a few times after operations, but eventually it started working but it took a few years of operations....
I hope people dont give up because it seems the only option when theres so much more that can be done.
my bones broke time and time again but im thankful my parents kept at it... if the bone is beyond repair fair enough but please dont give up unless its the only option.
i def would not give up unless that is it nothing more can be done.. don't worrie we have come to far to give up..as my mum says she looks at his little feet/toes and knows we must do what we can. the doctor says the only way he will loes his leg is if his foot or ankle become dis formed but his are prefect.... take care xxx
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