Our 9 year old son is seeing a neuro for a host of reasons. Seizures (not frequent), OCD, ADD, Migraines. Last year an MRI was done and they only thing they found was a DVA. Another was just done and we got a phone call last night, the only thing they told us is that he has "low lying cerebral tonsils". We have been referred to a neurosurgeon. But have yet to hear back from them. Those four words are the only thing we have. Is that a Chiari Malformation? Does anyone with Chiari experience the symptoms that he has been having?
This afternoon we were finally able to get an appointment for the 10th. Dr. Fletcher in Houston. Googling him I find his name attached to alot of chiari info. Including conqueringchiari.org. We are trying to get into Dr. Whitehead with Texas Children's for a second opinion as well.
In the mean time expect to see me lurking trying to absorb all of this.
Any feedback on either of those drs?
I would appreciate suggestions of questions to ask at the initial appoinment.
Also, those with young children (my son is 9 and EXTREMELY intelligent) - suggestions on the first appointment? do you ask all of your questions to the NS with your child in the room?
welcome to the forum, sorry your son is having to go through this. Hopefully you will soon have answers.
My son is older, he was 15 when he had his surgery. Most of the time he was in the room when we were discussing the chiari and surgery. He is also very smart and it was very important for him to be there. If I had questions that I did not feel were ok, there weren't too many, I spoke with the doctor outside the room or just called later to ask.
Hang in there
My son is 16 now too. I thi"k he wanted to know a lot about the same things as you did. Most of all he wanted to know if he could go back to sports after surgery!!
I hope your surgery went well and things are better for you now. How long ago did you have your surgery?
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