# Upper Cervical Instability Upper Cervical Instability (UCI), often called craniocervical instability (CCI), is a condition in which the skull and first cervical vertebrae, or first and second cervical vertebrae, are not securely connected. This can lead to impingement of the brainstem, vagus nerve (it exits the brainstem right at the level of C1) and other important structures which may present with neurological symptoms, autonomic dysfunction, pain, and a feeling that the head is too heavy for the neck to support. > [!NOTE] Update > April 2025 - I am just starting to learn that hypermobility in other areas of the cervical spine may also be a cause for ME/CFS and related symptoms. It is not fully clear to me yet the mechanism. UCI is a controversial diagnosis and not well recognized by the medical community. It appears to be more common in cases of connective tissue disease ([[Hypermobility|hEDS or HSD]]) but may also result from trauma (e.g. car accident) or traumatic chiropractic manipulation. Several studies have associated structural cervical abnormalities (including cervical canal stenosis and craniocervical obstruction) with symptoms of ME/CFS.[^1] [^2] Most patients respond to conservative management with physical therapy to strengthen the muscles surrounding the unstable joint (I recommend doing this only with UCI specialist. If neurological symptoms are present, a flexion/extension upright MRI may be indicated, especially if red flag symptoms are present. I recommend the Expert Consensus paper by Russek et al for more information on UCI diagnosis and management.[^3] ### Sources [^1]: Bragée et al. Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. *Frontiers in Neurology*. 2020;VOL(ISSUE);828.10.3389/fneur.2020.00828 [[Retrospective Study - Intracranial Hypertension in MECFS Patients 2020]] [^2]: Edwards et al. Case report: Recurrent cervical spinal stenosis masquerading as myalgic Encephalomyelitis/Chronic fatigue syndrome with orthostatic intolerance. *Frontiers in Neurology*. 2023;VOL(ISSUE);1284062.10.3389/fneur.2023.1284062 [[Case Study - Recurrent Cervical Stenosis in MECFS 2023]] [^3]: Russek, Leslie N., Nancy P. Block, Elaine Byrne, Susan Chalela, Cliffton Chan, Mark Comerford, Nicole Frost, et al. 2023. “Presentation and Physical Therapy Management of Upper Cervical Instability in Patients with Symptomatic Generalized Joint Hypermobility: International Expert Consensus Recommendations.” Frontiers in Medicine 9 (January):1072764. https://doi.org/10.3389/fmed.2022.1072764. # Upright Flexion Extension MRI Upright MRI locations across Indiana, Illinois and Kentucky: - St. Vincent in Carmel, IN - Upright MRI of Deerfield, IL - Vertical Plus of Hazel Crest, IL When getting your MRI, bend your neck in your upper neck (which is where we want to observe the instability) and do your best to go to your full end range of motion. > [!QUOTE] A patient's experience at St. Vincent in Carmel, Indiana > I wanted to describe my upright MRI experience in detail while it’s fresh in case it helps anyone else. When you’re prone to anxiety, the more detail you get about stuff ahead of time, the less your mind has to make up. I don’t mind MRIs. The noise doesn’t bother me. But some people get so nervous.  > > There’s a dressing room for you to remove and securely store your belongings and anything with metal: jewelry, bra, etc.  > > The machine is open. It’s not a tube, and you’re not fully enclosed. They do move you back “into” the machine, but there are just walls at your side. You can see out and for mine there was a TV with the History channel playing with closed captions on.  > > There’s a chair — this one in Carmel was white and kinda creepy looking. It’s a high-backed chair with padding that’s on rails on the floor.  They sit you in the chair and put a collar on you. The collar is about 3 inches thick and 12-14 inches or so, so it sits kind of on your collar bone, not tight around your neck. It’s connected by a cord to the machine. I was given a thin hospital blanket because it was cold.  > > You can have earplugs if you want. I was given a squeeze button so I could signal the tech if the machine was too loud and I wanted them, or for any other issue. They raise the chair — it’s all electronically controlled — and tilt it back. The first set of images in this “neutral” position takes about 25 min. For me, the worst part was the chair was uncomfortable, and sitting perfectly still for that long when you’re hypermobile is hard. > > After that first set, they bring the chair back down straight, then place a headrest in front of you. You take two more sets, each about 5 min. One with your forehead resting on the headrest (facing down), then with your chin up on the headrest. And that’s it!  > > A few things about the Carmel Ascension location. They tell you entrance 5 because you have to go in there to check in. But the actual upright MRI office is right near entrance 4. And there’s almost no parking at entrance 5… it’s a long walk from 5 to where the machine is, so get a wheelchair if you have trouble walking. I was in a chair and they were very kind about it. If you have a driver, have them check you in and then park at entrance 4. You can exit from that entrance but you can’t check in there (it’s stupid). ## Resources [J PIllow](https://j-pillow.com/) [Dr. Russek's Website](https://webspace.clarkson.edu/~lrussek/) [Wendy Wagner's Website](https://www.wendy4therapy.com/) ## Pre-surgical preparation Pelvic or cervical isometric exercises several times a day in anticipation of the surgery. Review body mechanics for how to operate in a Vista collar as they may spend a few days in it postoperatively. More recently, I think Dr. Henderson has been sending patients home without one, though. Dr. Henderson will likely recommend limited rotation postoperatively, so perhaps go through some body mechanics of how to move about your day and through your activities of daily living without much cervical rotation.