Just had my NS appt with Chiari Specialist in Las Vegas

I flew to Vegas to see a specialist. He sent me in for a MRI/Cine at a local imaging center. This imaging center is very well aware of what the doctor wants, and together they came up with a MRI detailed for Chiari patients, and also its a Tesla 3T.

I was told I have Chiari 1 Malformation. My MRI here in town (Oregon) showed 3mm low lying tonsils, with everything else being normal. This was done 8 months ago in January.

The new MRI showed 7mm. CSF flow was good. But I have a hypoplastic posterior fossa. Which in itself warrants symtomatic chiari.

I asked if my LLT where still at 3mm, he said its measured at 7mm but I dont think its that big. He said he wasn't to worried about that measurement. He was more concerned with the Hypoplastic Posterior Fossa. Saying the low lying tonsils is just another indicator that its Chiari.

I also said that Im feel 80% about 9-10 days straight per month. Then it slowly comes back over 3 days and headaches and stuff get worse and last for 10 to 16 days. He said he never really heard of it being cyclic like that.

He apologized for the short appt as he was called into surgery. I just have so many questions. He basically went over a few symptoms, and told me I had Chiari and told me about surgery details. He was not pushy about it. Just told me most people are very satisfied, but some do get worse.

*** Im just confused because the hypoplastic posterior fossa being related to Chiari is due to the CSF abnormalties and I dont have any. My CSF is ok. So I dont understand why it warrants it. I thought if it was only causing csf problems. ahhhh........

anyhow, my brain is just going crazy with all of this. Its like I thought I had this, and everyone told me no no no. One doc said I'm worried you are going to go find a surgeon to operate when you dont need it. So then someone actually tells me i have it, which I have been saying all along. NOW I dont know if I believe. Denial anyone...? I laugh at myself.

any thoughts would be nice...

Kgirl

I don't have any advice. I'm just wondering what Dr. you went to? I am looking for a good Dr. and I live in Las Vegas!


Dr Seiff.
April Lee Corbat said:

I don't have any advice. I'm just wondering what Dr. you went to? I am looking for a good Dr. and I live in Las Vegas!

Thanks!! I'm trying to get in to see him!!

Kgirl,

The specialist knows what he is talking about. Low lying tonsils are Chiari. It can be shocking when you get the diagnosis. It's normal.

I'm sure others will chime in.

Wendy

hi there. I know that LLT is chiari but from what I have read, if it doesn't create any csf problems then its not symptomatic. My csf flow is normal. This is where my confusion is coming in. Same thing with hypoplastic posterior fossa, symptomatic only if csf is abnormal.

wendyanne said:

Kgirl,

The specialist knows what he is talking about. Low lying tonsils are Chiari. It can be shocking when you get the diagnosis. It's normal.

I'm sure others will chime in.

Wendy

I got an appt.on 9/20 with him! What did you bring with you as far as records and such?



Kgirl said:


Dr Seiff.
April Lee Corbat said:

I don't have any advice. I'm just wondering what Dr. you went to? I am looking for a good Dr. and I live in Las Vegas!

Nothing really. I had a new MRI done there before I saw him. He is pretty cool, and really knows his stuff. I trust in him.

Good Luck

Kristina