I initially replied to this thread when it first came out. I pursued the vertebral artery idea to a dead end and a farewell handshake with the neurosurgeon (what else did I have to go with!), saw a neurologist who declared that I had vestibular migraines (do not fit the criteria based on a couple of second opinions), was dismissed by my doctor as having fibromyalgia (again do not fit the criteria), … you see the picture. I was not getting anywhere.
Here is what I have found out. I do have increased flexibility in some cervical joints and stiffness in others. I do not use the terminology of “instability” as that is a trigger word of fear for people and does not adequately describe what is happening in the spinal column. The word “instability” also tends to paralyze people into thinking that they can do nothing about it except fixating surgery. There are many steps to try before the last resort of surgery.
I had habits of movement that inappropriately stressed some tissues while limiting movements in other areas. I was assessed by a physical therapist skilled in the assessment AND treatment of motor control therapy. This is the normalizing of movement patterns. Once I was aware of the faulty positions and what normal movement felt like, I was able to apply this understanding to the movement exercises. Now, I move my neck differently. It can be done.
I have worked on upper, middle, and lower cervical movement patterns. I am currently adding in shoulder normalizing patterns. To find someone qualified, they need to know what these terms are!
I also worked on neurodynamic exercises. This is the flexibility AND desensitizing of nerves. Initially, I worked distally (started with my fingers) and worked up my arm to the neck. This concept of assessment and treatment originates in Australia at the Neuro- Orthopedic Institute - a fine center of research and treatment application for physical therapists. Once at the level of my neck, it proved to be too sensitive (lots of pain and cognitive blunting if I moved it) so I had to back off and focus on a third form of treatment.
To get into the therapy that my head and neck needed, first I had to straighten out how my brain was perceiving and processing stimuli. A long-term consequence of Chiari was that my brain was processing movement, touch, pressure, etc in the head area as pain and resorting to cognitive blunting. I still may have actual brain damage as an underlying condition but cognitive blunting should not be brought on by head movement!
To sort out this sensory disconnect, I did graded imagery exercises - again from the Neuro-Orthopedic Institute. These are excellent for pain and conditions that do not make sense to traditional understandings of pain and anatomy. The brain and how it processes input is the source of our experience of pain. When there is no mechanical source of pain, and doctors are scratching their heads and thinking that yours needs to be examined, it is time to look at how the brain is processing information.
Chiari brains can and often do get processing wrong and this needs to be normalized through a long period of treatment to normalize the brain’s experience and how it is processing stimuli that should not cause pain. In short, the brain needs to work right.
So, graded motor imagery, motor control exercises, and neurodynamics are where it was at for me. These treatments have steadily improved my baseline function. They are not faith-based forms of healing but well-situated in research and long-term gains.
Am I pleased with how long it takes? No. But my condition has continued to improve long past the date of when doctors said I would have my maximum recovery. Am I normal in terms of function levels? No. But the list of things that I can do continues to grow.
I have always sought treatments that had an indication of improving my condition for the long-term not temporary fixes. This is what I have found. I would implore people to ask questions and explore these options. I must admit that I weary of people choosing to explore dead-end treatments with no promise of improvement. Please reach out and expect more from your medical community. Remember that if health care professionals do not have the knowledge-base that you require as a complicated Chiari client, move on and continue to seek others who might. it is truly a difficult journey of finding those who can actually help! What will your next step be to help yourself be the best that you can be?