Can anyone help me
Tue, 04/21/2009 - 20:58 — mtsorensen
I have an 8 year old daughter that has NF i dont know if it is NF1 or NF2. she has had 2 surgerys already on her leg and now both bones has broke again and her doc said he cant help anymore. I took her to anouther surgen at the shriners hospital in greenville SC and his sugestion is to take off her leg. that is the hardest thing for me to handle. does anyone have any past experiance or stories good or bad close to the same thing?
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Get a 2nd or 3rd
Get a 2nd or 3rd opinion....that sounds like a quack dr to me!
hello, i am sorry to hear
hello,
i am sorry to hear about your situation. although i am not a doctor, i work in the medical arena. my mother had severe nf1. i have dealt with a lot of doctors over the years and to me it sounds like you should seek another opinion, as it seems your first doctor doesn't know what he is doing and the surgeon should be able to discuss with you why he thinks such a drastic measure is the only answer.
i would also be reluctant to amputate a little girl's leg. how awful. please check out www.ctf.org and call them to ask for advice if you want to, i don't know what the result might be but they may be able to help you understand what is going on here.