So when we first found out that my 5 year old daughter has chiarri we were having trouble with her doctor to get us neurologist appt so I called a neurosurgin to see if she could look over my daughters MIR she did and got back to me ASP she did not tell me much but that she would like to see her so we have an appt set for april 16 but we finally had a neurologist give us a call and we have an appt with them tomorrow I don’t know if I should cancel the appt with the neurosurgin or keep both appts? My daughters docter said that if we see a neurosurgin they will want to so surgery even if she does not need it. I have no idea what to do any more she is only 5 if she does not need the surgery then I would rather her not but she wants to do flag football and cheerleading this summer but I don’t know if her headachs will let her I just want her to have a normal childhoood!
I agree with emmaline, I would definitely keep the NS appt!
Personally, I would keep both. That way you can get more than one opinion. While I agree with the other comments and believe that the NS is probably the best to understand Chiari, I have seen a handful of NL & NS in my time...and have met some on both sides that don't understand Chiari. I am a father of three so I can understand your concern for surgery and a normal childhood, and this is why, if I am ever in your shoes, I'll be seeking more than one opinion. Good Luck with whatever route you choose!
thank you! everyone on here has been so help full! the nl said that her head achs may not have anything to to with her chiari the neurosurgen we are seening on the 16th is not a pedatric surgen i did post a her MRI if anyone would like to take a look they said it 17mm
i called dr oro and they did not tell me much not very helpful at all! we just heard back from her NL about her spine MRI and he said that the chiari looks worse then what they saw in ther head MRI i asked him if its still 17mm he said yes so im not sure what he ment also he just kept telling me that i need to talk to the NS i dont know if he was just blowing me off or if he thinks we need surgery and just did not want to tell me i am really getting frustrated with the waiting game!
Hi..
Has your daughter had a full spine MRI...to rule out a syrinx?? When is the NS appt?? Keep us posted...I can only imagine how frustrating and scary this is for you all.