I am so beyond frustrated. We had our first appointment with a neurosurgeon for my daughter yesterday. He was very arrogant and talked down to us the whole time. He told us that our daughters Chiari was only 7.6mm not 9 like the radiologist had said and that that was barely considered a Chiari. He said her symptoms were too vague to say that the Chiari is causing them and he pushed down really hard on the top of her head to see if it hurt. The more I think about it the more this doesn’t sit right with me. Is it normal for a doctor to push on a Chiari patients head like that? It doesn’t seem like something that should be done when part of the brain is already protruding down into the spinal cord
That doesn’t sit right with me either…and it sounds like he’s not up to date with his Chiari information. What disappointment. Keep going though, you will find the right NS for your daughter. How is she feeling?
Jenn
The severity of her symptoms comes and goes, but she has a headache every single day, that varies in intensity from day to day. A lot of times it’s hard to tell how she is really feeling because she doesn’t like to say she doesn’t feel good and will only do so when it is excruciating and she can’t take it any more. You can always tell she doesn’t feel good because she will hide out in her room or she is very grouchy when normally she is a very happy little girl. I am definitely not pushing to rush her in to surgery. I just want some relief of her symptoms so she doesn’t feel so horrible all the time and can feel like a somewhat normal kid. Last school year she was coming home 3-4 days a week early because she was in so much pain.
We saw dr. Riva-Cambrin who is also at primary children’s hospital.
The doctor was an idiot. 7.6 is not that small and can cause serious problems. My 13 year old has a 8 mm. He was gagging, vomiting, and had speech issues. We saw Dr. Feldstein at Columbia in New York City. My son had surgery in August--just a bit of spine taken and just a small scar. He is so much better! No vomiting, no gagging, and his speech is much clearer.
wow I feel for your daughter I have suffered my whole life with this and just the other day it got a name Chiari. that doctor or quack needs his head examined.
We saw a GI doctor today as abdominal pain is one of her symptoms and we were actually seeing GI before we moved to Utah and long before she was diagnosed. He looked at her chart, did his exam and said that Chiari can cause abdominal pain, she has had every single test and treatment for her GI tract with no improvement and he is positive that ALL of her symptoms are Chiari related as he has seen several other Chiari patients with all of her exact symptoms. He put in for a second neurosurgeon and also for neurology. Hopefully we get somewhere this time!
This is good news. What a difference it makes to talk to an informed doctor. Prayers and positive thoughts to you and your daughter!