CCI/AAI and uMRI measurement questions

[KKatie84]

I had an upright MRI at Medserena in London to look for CCI/AAI and I thought this would answer my questions but unfortunately I've got more.

I've had the report back with the following measurements:

BAI: 6.5
BDI: 4.1
CXA 151.5°
Grabb Oakes: 8.1

The report was done by a radiologist in London but before I got it I had a play around with the software myself and realised that these measurements could definitely be up for debate. Obviously, I am not trained in radiology, but has anyone sent their scans off for a second opinion and got anything different back? Mine said no signs of instability, but I'm a bit worried about my Grabb Oakes being 8.1. I'd really like to send mine off to Dr Gilete but I can't afford to at the moment, I just wanted to know is it worth it or are the measurements likely to come back the same?

 

[valentinelynx]

I suggest you join some of the CCI Facebook groups, where people give good advice about spinal (& brain) issues in ME/CFS and informal MRI readings. Here are some options:

"ME/CFS+ Brain and Spine"—started by Jen Brea and friends, is focused on things like CCI and tethered cord, as well as Chiari and other neurological issues. Has over 5,000 members and is a congenial, helpful and well-educated group. There's usually a waiting list to get in to this closed group, but also lots of info in the "pre-group" educational section. The groups has awesome resources from tutorials on reading MRIs to reviews of doctors. There are also multiple subgroups, the largest probably being "ME/CFS+ Surgery, Recovery, and Rehabilitation" which is for people who are scheduled for or post-op for spinal or brain surgery.

"Craniocervical Instability"—has almost as many members as ME/CFS+ Brain and Spine—is about CCI not specifically about CCI in the context of ME/CFS. Many (most?) members have EDS or other CT disorders, but many don't have ME/CFS. I find it somewhat less congenial than ME/CFS Brain... but still pretty nice for a FB group! Group members may be not as educated on average about medical matters. Some MRI reading. My opinions only.

"Beyond the Measurement * Chiari, EDS & Chiari w/EDS * Support Group"—I think this is the original private FB group focused on brain/spine issues in EDS. Started over 10 years ago and has over 7,000 members. Has more discussion of Chiari than the previous two groups, but still plenty on CCI and tethered cord. Very helpful people, lots of MRI reading. Again, not ME/CFS focused.

"Cranial Cervical Instability • The Brain To Spine Telephone Line •"—A UK based support group focused on CCI (plus tethered cord). Group has a very congenial, helpful tone. People read MRIs. Despite being UK based, there's a lot of discussion of US doctors because many in the UK and Europe need to travel here for treatment. Not ME/CFS focused.

These are all closed groups, meaning that they are actively moderated, that postings don't show up on Google (or other search engine) searches and that you must fill out a brief application stating your reason for wanting to join and attest to willingness to agree to the group rules. It can take a few days (or more in some cases) to be admitted. I'm sure there are more useful groups, but these are ones I'm active in. I'm also in a group just for patients of Dr. Bolognese and one called "Ehlers-Danlos Syndrome and Occult Tethered Cord", plus some EDS and ME/CFS groups for my local area. Whatever you think of Facebook in general, it can be a really good source of info for patients with complex or rare diseases.