My 3 yr old has SYRINGOMELIA and TETHERED CORD....
 

the neurosurgeon at chops in philly,said any good neurosurgeon can do the 1st surgery for the tethered cord,BUT bc of the locationg of the syringomelia on my sons spine,that same neurosurgeon said he was to 'SCARED" to touch him and that we need to find another dr that is an expert on this condition and see if he is willing to do the surgery...i appreciate him being honest and not just quick to cut ...bc this is my son we are talking about..and hes only 3 yrs old...and from what the dr told me..if he doesnt eventually get the surgery,the symptoms are not good and my son is already dealing w a brain condition called schzencephaly and APRAXIA,and he can not speak..so i dont want my son to start feeling these symptoms bc like the dr said,he wont be able to tell us if he is feeling funny or if hes in pain....im fighting w insurance to cover a communication device but until that day comes we rely on sign language and an ipod w a app that speaks for him...so as u see,my son is already dealing with enough on his plate...so i am trying my best to find him the BEST NEUROSURGEON POSSIBLE that specializes in SYRINGOMELIA AND TETHERED CORD.....so they can tell us IF and WHEN he has to have surgery..and at that point ,after speaking w a dr that is an EXPERT on these conditions...i will have some what relief knowing they know what to do when they operate on my sons spinal cord.....i refuse to just let any local hospital touch my sons spinal cord...the neurosurgeon at chops said ONE WRONG MOVE AND HES PARALYZED FOR LIFE....i refuse to let some dr do that to my son ...i have been doing research online and im having a hard time finding drs in PA ....i live near the scranton wilkesbarre area...but i am willing to travel ANYWHERE for my son to get the best care possible....my first choice as far as hospitals that specialize in this condition is COLUMBIA IN NEW YORK...BUT i only have medical assistance and they are giving me a hard time about letting him go out of PA....so if they dont cover him to go out of pa...i have to try n find a dr in pa to do the surgeries.,...so thats why i am here...i want to know if any of u had personl experience with any pediatric neurosurgeons in PA and if so what are there NAMES good and bad opinions please and if u have any reccommendations for drs in PA and out of PA.....im so sorry for writing so much...but i am a mommy of a beautiful lil boy and i am just honestly a nervous wreck about my son having any surgery at all....esp on his spinal cord tho...so im just doing everything i can and doing as much research and getting him to as many 2 opinions as possible......i know he will have to have the tethered cord done very soon and the syringomelia will be then after ....so time is ticking and i dont have to much time to make a choice...but i want my choice of which dr that will have my sons life in his hands ..it needs to b the best choice possible...I AM PRAYING U ALL WILL HELP ME........THANKU VERY MUCH FOR LISTENING !! and by the way,im so sorry i should have introduced myself..i am a mommy of a 3 yr old lil boy w tethered cord,syrinomelia,schzencephaly and apraxia..n and i here to hopefully get some help in my sons journey...thanku all so very much! xoxo