Hi everyone. So on top of everything else I am dealing with in the last year it seems my symptoms fit the Chiari 1 Malformation (CM1) to a T. I mentioned this to the geneticist’s office I will be seeing in August to be checked for Ehlers Danlos and they asked if one of my local docs could order an upright MRI for the cervical spine with flexion and extension before my 8/15 appointment with them to speed things along.
I brought this up with my neurologist at the beginning of the moth who made it quite clear where he stood. He said he would order the test to “calm me down” because I get “so focused on things like this.” I got a copy of the images and educated myself on what to look for, especially as Ehlers Danlos (EDS) influences CM1 because the one complicates the other. The EDS diagnosis looks like a slam dunk at this point and it’s just a matter of what type. (I’m guessing hypermobility type, maybe classic type II. There is an outside chance for another less common type b/c I have eye and hearing issues as well.)
Anway, after waiting a week and finding out my neuro reads his own images I requested an appointment and had my follow up yesterday for his results. He declared my xrays normal and my MRI of my brain and cervical spine (in the supine position w/o any flexion or extension) normal. No chiari. I looked on stunned because I had posted online in an educated support forum and people were absolutely shocked at the changes in my brain from 2009’s MRI until 2011. My measurements using the MRI software the lab uses gave measurements anywhere from 3mm to 1.1cm depending on the view. 3mm was on one of the cervical neck images where it was hard to determine where the foramen magnum was (the bony opening in the back of the head where your cerebellum should not be exiting from) and most of the MRI images of the brain show 8mm to 1.1cm depending on which slice you are looking at. I didn’t argue with the neuro because honestly I had already made up my mind that if he was so determined not to be wrong I was just leaving and getting another neuro anyway. This guy doesn’t write reports for other doctors. When I recapped some of my symptoms (classic CM1 symptoms) including the “pressure headache” that is induced the moment I bend over and actively do something, like when I used to bend over to pick out my horses feet after a ride - I asked him to explain that. He went on a 20 minute tangent about how “positional headaches” are pretty much unheard of and he tried to pull an explaination out of his ass. I was amused at how much he wanted to not be wrong. I asked him where we go from here and he said “I don’t know.”
In his ramblings though he also said that my MRI showed that my neck lacked the normal curvature most people had. It was very straight and that could be causing some issues. I had one or two cervical disc that were bulging so that could be causing an issue and maybe pinching on a nerve that was causing an issue. I was just thinking, but WAIT I thought you said it was NORMAL? I didn’t argue b/c it was not my job to educate him on a topic I obviously knew more about than he did. Even his definition of what a Chiari 1 malformation is was outdated as he defined it to me. I was hoping to use him to order further testing such as a full spine MRI, maybe a CINE scan, and the actual upright MRI that was originally requested but he has made it clear he would rather dig his heels in and say “I don’t know” than go any further down this path.
On the upside, the therapeutic center was not going to let me ride without him signing off on it so I had him write me a release saying I was cleared to ride. I still will plan to only walk and will treat myself as a person with a Chiari b/c my brain is very clearly exiting my skull on the MRI, but at least he signed off giving me the all clear.
On to see the PCP and get another referral to a new neuro for a 2nd opinion. If anyone has neuro recommendations anywhere in a 150-200 mile radius of western NY let me know. Thanks
Oh, here are images if anyone is interested in seeing them.
