Good Luck to Mya tomorrow! I just finished lengthening my tibia out 6 cm w/ an ilizarov frame. I am now in a monolateral fixator for the consolidation phase. It is a long grueling process but very, very worth it to be be even! My primary diagnosis is arthrogryposis.
Thanks for sharing Tracey.. who did your lengthening? Our son, Luke who is 8 was in an Ilizarov frame for a year( 2 legs )in 2006. He has Ptyergium Syndrom- which is a specific arthrogryposis condition. Thanks for the encouragement! Was this your first lengthening?
My lengthening was done at Shriners in Philadelphia by Dr. van Bosse. He specializes in Arthrogryposis & also knows limb lengthening & reconstruction w/ ilizarov. He uses frames a lot for straightening out knees in AMC (which is why Luke had his, right?) & correcting recurred or untreated clubbed foot deformities. He also re-corrected my severely clubbed foot via the ilizarov then did the lengthening. I was in my ilizarov 442 days & he just changed it to monolateral. I grow bone super, super slow & now I'm consolidating slow too. He had never needed to lengthen out an AMC patient before so he is not surprised I grew bone slow considering my diagnosis! Dr. Standard is in Baltimore right? Thats where I was going to go if Shriners didn't agree to lengthen me out after fixing my foot bc I was already 21 when my foot was corrected.
Oh and yes this was my first & last lengthening unless I magically start growing again! My full dispranceny wasn't diagnosed until I saw Dr. van Bosse at 19, 3 pediatric othopedics missed it because my foot was clubbed on the same side.I also know several people w/ Ptyergium syndromes w/ in the AMC Support group!
Wow... you do grow bone slow... we know others who have done it and that is a long time.... we are hoping to gain it in 5 to 6 months.Both Luke and Mya have been patients at that Shriners...we would see Dr. McCarthy before he left Shriners. The brace Mya has been wearing and one pair of her shoe lifts came from them...but they are over a yr old.. we were holding out and trying not to have to get another pair until we knew what she will need once she is placed in the fixator. Luke did have a clubfoot on the l foot and his l leg was webbed but not as severly as his r leg.. which was folded like an accordian to the middle of his back...actually at Shriners they were overwhelmed with his case... and suggested amputation...we did not feel we had exhausted all of our possibilities and kept getting opinions... 5 of them... even the head ortho. at Childrens said Luke's case was too much for her and she sent us to Dr. Standard... if you ever need another ortho... let me know...we feel more like family with him and his staff than just a medical connection. He cares too! Good luck on the rest of your process and keep in touch with us....
The 442 days include my foot correction, fought off a massive foot infection & the the lengthening which took 148 days to get out 6 cm. I lengthened on average about 1/2 mm a day. 6 cm lengthening including consolidation will probably take a year! WOW I am impressed Dr. Standard got him walking when others said amputation. Since Shriners will give me the boot soon I need another ortho to follow me & I have heard nothing but good things out of Baltimore so I may need to get info from you about his office. I want someone who has frame experience even though I won't be in them anymore. If or when you go back to Shriners & have to see a doctor to get the braces request to see Dr. van Bosse, from what I've heard from other parents his expertise is higher then Dr. McCarthy's was. He isn't afraid of complex deformities like mine or like Luke's leg! Sounds like Dr. Standard is amazing! None of Dr. van Bosse patients are just another file! He is on the Board of Directors for AMC Support & came to the second AMC convention in Texas on his own & asked to speak!Good luck tomorrow!! Let me know when ever you may be back at Shriners, would LOVE to meet up if I am there that day for clinic! email@example.com
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