My neurologist appt/long

[Guest guest]

Hi All,

Well, I had a most enjoyable (sarcasm) neurologist appt. today. This was my

second appt. with him. When I saw him in December, he felt that all

of my symptoms were still post surgical, but sent me for an MRI to

rule out scar tissue (I thought it couldn't be seen on an MRI). He

told me today, the MRI shows no scar tissue and that the surgery was

successful, because it is a " minor " malformation (7-9mm) and the surgery

decompressed the tonsils. He bases Chiari on the size of the

malformation.

I told him how awful I feel everyday and the only symptoms that went

away after surgery is the vertigo and the passing out. He feels that

since I am having the same symptoms as pre-op, that the Chiari has

probably been not causing my problems all along, even pre-op. Where was he

to save me from the brain surgery ordeal then? What a dork!

So, I asked him....what is making me feel so damn awful. (headaches,

burning pain, neck pain, etc) He believes that it is being caused by

the problems with the craniocervical junction and the defects that

exist back there........so wouldn't this still be Chiari, based on

the new definition? He never gave me a name of this, so what is he telling

me I have some type of no-name or generic condition, great that has got to be

even rarer than Chiari! He also pointed out that my clivus is tilted back to

far, is this not the forward part of the posterior fossa? I’m really

confused.

I asked him about my balance problems, i.e. walking into things and

such, he said, that’s probably the medication. I also asked about the

problems with my legs, the weakness and cramping, he said since the

klonopin seems to help this, he’s not too worried about it right now.

I felt great comfort with that answer.

I told him that when I sneeze, it feels like my head is going to explode, he

said, that happens to a lot of people.

He changed my medication and told me to come see him again in 6

months....I think I’m done with this guy. So my plight to find a

Chiari knowledgeable specialist continues.

My GP sent me for a ton of tests because of the nausea I have been

having, all tests were normal....gee, I wonder what is causing that?

I didn’t even want to ask the neurologist about this, with the other

answers I had been getting, (maybe my hairs to curly or something) though he

did have the report from my GP.

It’s amazing, we all have Chiari, some of us have not done better after the

surgery, we all share the same symptoms, but the Chiari is not causing

the problems......what a heck of a coincidence, don’t you think? My NSG

told me before surgery, that it was a treatment to try and help reduce some

of the symptoms, but there are no guarantees.

So I will continue to find a specialist to help me, I am not living

the rest of my life feeling like this. I may consult with Milhorats

office.

Thanks for listening!

Judy R.

wondering when this ride is going to stop

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[Guest guest]

I sent this quite a while ago, it never showed up in my mail, but I have

gotten a few responses....whats up with that? Judy

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