I got the images and the report today. Again, no mention of the Chiari or the retroflexed odontoid. Funny, it was the same radiologist that DID mention the tonsillar herniation on my second brain MRI.
I wonder how long they actually look at these images... and how many of glasses of wine they go through during each session.
The only things mentioned on this one is an abnormal cervical spine MRI due to several mild to moderate foraminal narrowing and a disk herniation. I have no idea what foraminal narrowing means. It says no Demyelination - I'm guessing that is saying no lesions related to MS???? It also says negative for a syrinx.
I don't know that my symptoms are related to a herniated disk. I guess I need to look that up, but I doubt it. My neck doesn't really hurt like I hear people with actual back injuries hurt.
I posted some pics of the MRIs to my profile.
The neurologist wants to see me Monday to go over the report.
I'm still going to send my images to a chiari specialists. I'm tired of feeling like poo.
Definitely get a NS to look at those MRI's. Radiologists leave so much out. It's not just the brain either. I have had numerous MRI's on my hips and low back and sometimes they say arthritis and sometimes they say unremarkable. I actually had the doctor doing my joint injections look at some old "unremarkable" MRI's of my back and hip because I couldn't understand how my arthritis went from nothing 4 years ago to where it is now and surprise it was totally showing up but a bit less severe on the unremarkable MRI and just wasn't noted.
Rebecca, looking at your images I can see a herniation and a retroflexed odontoid according to the Grabb Oakes measurement. I think you also need to check out the possibility of a sharp (kyphotic)clivo-axial angle. These are types of cranio cervical instability.
This is the best informational site I’ve seen…
CSFinfo.org
Videos
Metropolitan area
Cranio cervical instability and EDS videos.
I recently had my cranio cervical instability fixed -a cranio cervical fusion- with Dr Henderson. He works with a couple of Radiologists who specifically understand the types of cranio cervical instability. I met one of them for a video swallow study after my surgery and we discussed why radiologists don’t recognize the instabilities. I asked him if it was out of their normal scope, he said no. The reason they don’t diagnose CCI is because they ARE NOT AWARE OF iT!!! Traditionally a radiologist will look at one or two factors/measurements to diagnose CCI- this is one or two out of MANY. They were not trained to recognize CCI other than the few types. I had a flexion extension c-spine MRI done to look for CCI. The radiologist read it as negative for CCI. In reality I had a retroflexed odontoid, pathological clivo axial angle, pathological movement of my skull in relation to c-1, and various subluxed vertebrae. If I had not taken my imaging to the right docs I would have never been diagnosed.
So many NSs don’t understand Chiari, but even fewer who understand CCI and Ehlers Danlos Syndrome. There are very few places in the US that are able to recognize it and fix it. The places I am aware of who can recognize and fix CCI are:
Henderson, MD
A NS at Georgetown University- not sure of his name, Beeba knows
Rosner, NC
And TCI, NY
I had my first decompression done by a Chiari “expert.” And he actually probably is adequate with the decompressions, but has no clue about CCI or just plain doesn’t know how to surgically fix it. After my symptoms returned he advised me to see a NL in my own city for pain management or another NS if I thought I had CCI. He knew I was hypermobile too. Have to be very careful and diligent about who we choose to operate, especially if EDS is involved.