Good grief

Our neurologist will not return my calls – 4 times in the past month or two. Today, my daughter got dizzy, fell out of her desk and smacked her ear on her desk. It’s happened before. Doctor said probably stood up too fast. I have never fallen down because I got up too fast. Why would it happen to an 11-year-old? And why does nobody care?!

Hi Tina,

You've probably thought of this, but I'd suggest talking not with the neuor, but with your pediatric DR. Explain your frustration and see if he can recommend a different neuro. And ask any other people you know that go to a neuro who they like.

No one says you have to stick with a less helpful Dr. (I wanted to write jerk, but figured that wouldn't be nice, so I'm being nice, ok.)

Oh my Tina! Is she okay? That had to have hurt.

There is NO doubt in my mind - I would be getting a new dr. That's bull crap and don't tolerate it. Fire him and get somebody else. "Firing" just made it sound more dramatic (smiles). I guess if you think about, that is what we do when we go don't go back. Either way,.. she needs a dr who cares and knows what he's doing. Neurologists are a dime a dozen. Do some research and ask around. I'm sure you can find a good one.


Please found another neurologist. I may sound harsh, but do not lose any more of your time with that neurologist. Please do find a AVM specialist, someone with knowledge and experience. That is your child; do not be afraid to offend anyone! That is indeed not normal that your 11yo daughter is falling like that. I know because I have been there, and I am a adult. Your Dr. is saying that, because most neurologist do NOT know how to deal with their AVM patients!! Where are you from?

There’s a loaded question. We live in Iowa, so such specialists are rare. We have a neurologist at Mayo, but I do not know that he’s got a clue about AVMs. We have visited a neurosurgeon at Stanford. I know the Stanford doctor is an AVM professional, but I don’t know that any of the neurologists there are AVM experts.

Do I make a wild card visit to Mayo to see what they say? Or Stanford? I am lost.


Its so hard to find a specialist... I know because I had to travel 2000 miles to have the "inoperable" surgery that saved my life back in March... it sucks but the reality is that for most of us... seeing the best out there means traveling! Do a lot of research. The best specialists are often at some random hospitals. Dont just stop at what you know of the best "neurological" hospital... really dig and try to find the best Individual for what you need for your daughter.

Thanks. I guess it’s heavy research time!

Start here:

Looks like St. Louis, Cincinnati, Chicago, and Cleveland are the best places to go in the Midwest for pediatric neurological concerns.

I live in Cincinnati if you ever need a place to stay. I was put in touch with a local family thru a friend 2 weeks ago. Their daughter just had a Cavernous malformation removed here. It was not deep into the brain, but they were great, and she is doing great! Went home 3 days later! We do have an amazing children's hospital here. I dont know how specialized they are for this but they are #3 for kids in the country. Phoenix St Joseph hospital, Arizona, is #1 when it comes to neurology for children.