Had my first NS appointment

I like the guy, but I don't know quite HOW much he knows/understands about Chiari. Way better than the neurologist I saw, at least. He said he probably does a couple of decompression surgeries a year. He also encouraged me to get a second opinion if I want.

He got me a copy of my MRI from July:

The cerebellar tonsils extend approximately 7mm below the foramen magnum consistent w/ a Chiari 1 malformation. There is mild fullness of the third and lateral ventricles. The septum pellucidum is not defined. there is no mass or hemorrhage and no restricted diffusion. The sulci are normal and there is no extracerebral fluid collection. Flow voids are maintained in major vascular structures. Following contrast infusion, there is no abnormal enhancement.

Impression: Chiari malformation. Mild hydrocephalus. No acute finding.

Now 'I' don't make a whole lot of sense of that, but there it is. He was kind of surprised that this has gone on for so long... and that no one told me or my mom anything when I had the initial diagnosis at 15 (20 years ago). He's ordering an MRI of my spine... and I see my PCP next week Friday and hope and pray he gives me some sort of documentation stating that I can not work... or I'll be screwed by the disability department through welfare as of November 1... since the psych doc says I can work 20 hours a week... I NEED a medical doc to tell them 'not possible'... since it isn't.

No clue if I'll end up doing surgery or not yet. Waiting on the new MRI and then I'll see this NS again... and contemplate getting a second opinion.

Question for you all though... Does getting an MRI of your spine feel like when you get one of your head? I HATE the head one. The pressure from the knocking and how loud it is feels like someone pounding on my head w/ a hammer... It won't be around my head though, right? Or will it? Thanks for whatever info you can give me and thanks for listening.

Thanks. It's not a 'save your money' situation for me. It's either someone/somewhere that will take my insurance (100% coverage) or it doesn't happen.

Dang it about the MRI though! lol That is gonna HURT!! :(

You definitely have a good point about finding someone else though. This guy said my nausea isn't caused by Chiari yet it is one of the symptoms listed on the Chiari Center's website... If I DO go w/ surgery it definitely won't be for a while.

A couple a year definitely isn't a lot, but I live in Hawaii. There are hardly any neurosurgeons at all here... ;) I can definitely get a second opinion. The NS gave me a name (I'd have to get it from him again) of the person he'd recommend me getting the second opinion from. It's the pediatric NS though... he's the one w/ the most experience.

Valium is a definite no go. Me and meds do NOT get along.

Yeah, I do want to avoid surgery if at all possible. If I get disability approval it WILL be possible to avoid unless my symptoms continue to get even worse. They have increased over the past year or so though, so who knows what will happen w/ them.