Ariana, very frustrated

[Guest guest]

Well, as always we've hit a roadblock. After the MA for NSG was quite concerned,

the NSG called back and was completely dismissive. The first words out of his

mouth after asking me to explain what is going on were " we aren't going to go in

and open up her skull and do Chiari surgery just because she's having a few

worse headaches now. Most patients don't even get relief after surgery, and we

don't do something major like that until the pain is interfering with school and

life functioning. It's way too early in the game for that. " (I'm referred to a

tape recorder brain, and yes, this is what he said, more or less word for word.)

It took me a minute to get my bearings because I said nothing about surgery or

even her Chiari. We don't even know for sure that this is Chiari related. But

his response is how dead-set against treatment these people are!! He went on to

ask me about her Neurontin and if she is still taking it, which I said she is.

Then he asked if she's seen her pediatrician about this. I told him it started

up over the weekend and I have a call in to her today. The NSG then told me that

" the only thing we need to do is get the right pain medication for this rough

patch, and the pediatrician will help you do that " . So I said " you want to put

a bandaid on and drug my child when you don't even know what's wrong with her? "

He assured me that doing an MRI or CT scan is unnecessary, that without vomiting

or severe dizziness she doesn't have an " acute brain process " going on. He also

said that " Chiaris don't change quickly, so her Chiari wouldn't be causing any

kind of threatening situation at this point. " I don't know what he calls

quickly, but it's been 14 months since she was scanned last. His focus was

completely pain medication. I told him she's past due for her annual scans and

asked him to order those, unrelated to this new pain. He said he would put the

orders in, but he refused to order a new CINE study.

I'm really frustrated right now and unsure what to do. This surgeon is the chief

of the department and actually started the entire pediatric neuroscience clinic

here a couple of years ago. He isn't a Chiari expert but is an renown NSG;

point being, he isn't a moron. But I feel like he doesn't take us seriously in

the least, and I don't know why. Other than her Chiari and related disorders

and ADHD (well-controlled), Ari is fine. It's not like she's a hypochondriac in

the doctor's office every week .

At the moment, Ari is feeling fine and is her normal self. Maybe these pain

bursts are nothing serious, whether they are related to her Chiari or not. It

just makes me really uneasy not to know. I don't understand how it can be

completely dismissed without any evaluation. We have Kaiser until September 1

and then will finally be free of them. I'm halfway considering taking her to the

regional Children's Hospital ER closeby where several members in this group have

had great success for their children. I would just tell them we're uninsured, I

guess, and worry about it later. If I do that, would you suggest I tell them

about her Chiari?

Thanks for the responses today.

~Beth, with Ariana in NorCal~

Sent from my iPhone