If you spoke with a doctor who claims he can do this, then find out who he is and get to him! Ask how many of these types of sugeries has he performed, and his success rate. If I had gotten a second opinion on my son, he would still be with us. What one surgeon may not be able to do, another can, so I am so BIG on second opinions. You don't need your doctor's permission to see another doctor, just do it. You can have all her records released from the other doctor very easily, along with the operative report. I feel so bad for all of you, and these doctors jerking you around just angers me! I went thru this with my son. Please keep us posted, and act quickly.
I can really relate to a few things you wrote. My daughter was diagnosed with Juvenile Rheumatoid Arthritis at 5 years of age. She landed in the hospital because of a toxic level of asprin. I picked her up from the hospital to take her home with a terminal form of heart disease! Took her in for arthritis came home with a dying child. One of the forms of heart disease she was diagnosed with was WPW (although this is NOT a terminal form of heart disease) and at the age of 7 she was taken to Houston's Texas Children's Hospital for an open heart surgery. They ablated the tract during that surgery and she was in the hospital for 10-12 days following the surgery. Since then she has had several more tracts develop and several more ablated in the cath lab. (In her, these developing tracts are due to the thickening heart walls: she had Hypertrophic Cardiomyopathy (HCM) which is a terminal heart condition) One of the tracts in her could not be ablated; it's called a Maheim Fiber and it is near the ventricle, we were told to take her home and spoil her for what childhood she had left. We have had SO many of these ablations done; I can not understand for the life of me why any doctor would tell you that this can cause a sudden death event in your daughter and scare the heck out of you! Our daughter had Sick Sinus Syndrome and needed a duel chamber pacemaker because her heart beat was dropping down into the 30s, had both a Left and Right Bundle Branch Blocks,( a problem where there is a break in the electrical pathways going down to the left and right parts of both sides of the ventricle so the electrical impulse can't get through) the Maheim Fiber in the ventricle A-Fib requiring several electrical shocks and the ONLY reason she was at risk for a sudden death event was because all of her ventricular heart walls, themselves, were so thick (4cm.). You need to see someone at a good University Hospital where the doctors know what they are doing. WPW doesn't kill people; it's one of the most common electrical problems of the heart. There are a lot of different drugs that can be used to control arrhythmias in children. I would head straight to another good EP doctor. If he feels another ablation is warrented, he'll do it; he's not going to put your daughter at risk for anything unless he feels it is really necessary. Keep us posted, even if just to vent. There is also a Pediatric Cardiology Forum on here that you may be able to get more help on. I usually go onto that forum as well. Take care!
Thanks u all for ur concern and wish the best for all of you ... Actually the other dr who claimed he can do the surgery is my dr's partner and when he talked to me i told him i got no problem switching drs and he said we got no problem switching patients too .. but for the who last week my dr was on vacation and this other dr was saying i cant see ur daughter or decided in her case till ur dr comes back and i talk to him !!!!!! Today is monday and my dr is supposed to be back at the clinic i called hem left a msg and hopefully will hear back from them .. it is getting so frustrating tucking your 5 year old in bed at night and seeing her crying and asking you mommy y cant i do the things i used to do or why do i get the funny heart beat and feel tried and my friends dont !!! hard questions and the answers will be harder .. May God be with u all