Chiari and the effects it has on people continues to make me sad. It also saddens me when I see that the medical community does not understand the effects of Chiari and the impact it has on people. It also saddens me that people with Chiari do not understand how Chiari affects them and their brains.
Chiari is a physical manifestation that affects the tissue structures in the immediate surroundings. With surgery, people can see some immediate relief of some symptoms. We are often told that not all symptoms will resolve. We are not told why that is. We might get a shrug and be told “there is permanent nerve damage” or a shrug and be told that “the brain will only heal so much”. Platitudes with no help.
When the Chiari compression is present, it affects a lot of structures. Have a look at what is present in the foramen magnum. Any of these structures can be affected by the compressive forces at work in this small area. Chiari symptoms range so much and that only makes sense.
What medical professionals tend not to understand, and consequently do not pass on to their clients, is that the brain tries to make sense of the damaged information that it receives. Those compressive forces affect nerves, spinal cord pathways, blood vessels… When this happens, tissue structures send garbled information to the brain for processing. This information does not make sense to the brain, but the brain does its best.
An example is when the blood vessels to the occipital nerve are blocked, the occipital nerve is ischemic. When a nerve is ischemic, it results in pain. However, our brain is not designed to understand that our occipital nerve is vascularly compromised. The brain just senses pain in the occipital area, aka the Chiari headache, and nothing seems to help much. Can I get an ‘amen’ here!
Our brains are complicated and complex organs that work very hard to make sense of the stimuli it receives to keep us safe and out of harms way. When the brain gets mixed-up messages or information that does not make sense, it has a tendency to interpret the faulty information as pain. When our brain tells us that we have pain that is our cue to act. Unfortunately, when the brain itself is messed up, traditional ways of managing, reducing or resolving pain are not effective, and we do not know how to act.
Before I had surgery, I had the Chiari headache. It was a vague ache somewhere in the back of my head or maybe a centimeter away or maybe it was itchy. Did not make sense. After surgery, it went away, but lots of other strange things started up and the Chiari headache (but not!) came back. I had dizziness and vertigo but many vestibular therapists said that they did not know what was wrong with me. It seemed that everything around my head and neck hurt, scarves, collars, hats, hoods, head bands, all hair dodads It was crazy and getting worse. My neck hurt. Movements hurt. Thinking about movement hurt. Neck movements affected my cognitive abilities. Psychologists were repeatedly encouraged. My vision deteriorated even when optometrists said my vision was fine.
What I found out is that surgery was a success. Surgery removed the compressive forces on my tissues in the surrounding area. What surgery did not fix was the maladaptive strategies that my brain had adopted to make sense of all the years of crazy input.
How do you fix a broken brain? Not easily.
I did graded motor imagery (Neuro-Orthopedic Institute) for the crazy head and neck pain. It fixed the cognitive disruption. I followed up with motor-control neck exercises so that my neck could move normally. I did neurodynamic exercises (Neuro-Orthopedic Institute) to normalize neck and upper extremity nerves. I did primitive reflexes to get rid of the dizziness. I did vision therapy to normalize my visual processing abilities. Everything is brain-based with a focus on normalizing the brain’s processing and structures.
BigD the ex-physical therapist, you should be able to research this stuff, but truly anyone can. Of course, finding someone to assist is another task. Other than the vision therapy, these are assessment and treatment techniques that fall under the physical therapy jurisdiction.
My whole point, is that Chiari folk do not have to settle with a lousy brain that is not working right. We are now past the Decade of the Brain (1990’s according to George W Bush), and there is a lot of new research that came out of it. Please do not despair and lose hope. If I can turn my crazy brain around, or at least in the right direction, so can others.
Ask questions and demand better treatment options!