My son has one leg longer than the other

My 4 year old and my 22 month old son have both been diagnosed with NF1, while my youngest boy has it relatively mild with just a few cafe au lait spots, my older boy has a few problems with speech delays, overall child delays, and also one leg longer than the other, he has had to get a raise for his shoe to balance his legs out. Has anyone else got a longer and bigger leg. xx

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yes, My left leg a a bit shorter than my right. I also have scoliosis. I really never had to much a problem with my leg until now. My lower back has been hurting so I'm not sure if that has anything to do with it or not. I have gained some weight lately so it's possible it could be that also-lol. Has your son been tested for scoliosis?

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Left leg is little longer than the right one. I just use a lift my podiatrist gave me and I'm good. They have bone-lengthening surgeries out there, but it's really not that critical.

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Hi Missy,

My son also has one leg longer than the other and he also has a lift in his shoe. He does pretty well with it. Good luck

Amy

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http://www.ilizarov.org/casemore.asp?id=219

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Fortunately my son does not have it as severe as that little boy in the link you posted Cardsharp.

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Hi,

Sorry to hear you are going through all this. Our youngest son (2 1/2 yr) has NF-1 and his left leg is longer than his right by ~3.5 cm. X-rays showed his left femur doesn't bend into the hip socket like normal. His left thigh is visibly bigger than the right and the left thigh is covered by cafe-au-laits that have "joined" together to form a large spot from his groin area to over his left knee. Those 2 things made his Geneticist suspect a plexiform on his left hip and upper leg, confirmed by MRI in December. He'll have another MRI next month to see what the plexiform has done in ~6 months. Several years after his bone docs fix his femur, they will temporarily shut down the growth plates around the left knee...basically a medical staple across the growth plate. Their goal is to get his legs within 2 cm of each other.

He wears a lift in his right shoe and that helps, but he walks okay without it too. He sees his Rehab doc to see what he thinks of the lift and his walking.

Good luck! Feel free to email me if you want to chat.
~Kelly

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My oldest son has one leg longer than the other and he has to have a 1/2" lift put on to the bottom of his shorter leg shoe. I now suspect my youngest son may have the same thing as I have been continually keeping an eye on my younger two for scoliosis and leg length descripancies. My oldest and younest two children have NF.

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I had to have a lift in my shoe.
At first everyone thought *for me* it was just one leg longer then the other. But *for me* it had to do with my hip. With my huge tumor on my right side the traviels down to my leg. I walk on my tip toes on my right side.
you can tell how bad it is .

Lift isnt so bad something else is leg braces they may be really ugly and kinda hurts. It should help

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Our 4 year old son has a discrepancy of 2 cm. His orthopeadic explained it is related to the plexiform neurofibroma that is in his left leg. When children have a plexiform it causes overgrowth in bones due to the massive blood supply of the plexiform. He also has a hyperpigmentation on that leg as well. It was diagnosed only becuase he was having calf pain and they were trying to discover that and on the MRI the plexiform that goes from his hip all the way down to his calf. We have his shoe built up at a cobbler since the discrepancy can't be fixed by a lift anymore.

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YES!...my leg was severly deformed and 4 inches longer than the right....1st surgery at age of 2 till the age of 27 when i finally had it amupted...best thing i ever did im wayyyyy better off with prothstetic leg... they did do a sugery at age of 12 to stunt the growth (length) so my legs evened out and i no longer needed a lift on my right shoe......hit me up if ya have any more questions..Id be happy to talk with ya more about my experiences dealing with it

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yes i had one leg longer left was longer then other they put pins in longer leg to keep from growing till other one caught up it worked fine

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I have the same thing my left leg is shorther than m,y right and when I walk it sounds kinda funny my left leg comes down with a clomp but I don't wear a riser in my shoes I just walk as I do everyday people say I walk like I am breaking in a new pair of shoes so Ok lte them believe that Don't worry you will be fine

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My daughter Amber has a tibial dysplasia in her right leg which causes the bone to bow...and that leg was slightly longer when she was a toddler...but now as a 14 year old...it's about 2.75 inches longer than the other one. Make sure that they check the bone in the leg...because tibial dysplasia is rare but it's important that you know if you have it or not...because it can develop into pseudoarthrosis...and the bone fractures very easily...and some kids even require surgery or amputation.

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my son has allready had plates put in his long leg last year but thay have not stoped his leg growing he has to go back in to hospital next week he has a difference of nine centermeters we are hoping this op will work this time becouse it is starting to bend his spine

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