Ah dizziness! I had dizziness for another 9 months after my surgery and it always seemed really surreal when I would move my head and I would feel light headed and not quite right in my body. This would happen when I would turn my head in standing, or in the car, or rolling over in bed, or tipping my head back to shower, or walking. You get the picture. I thought that it seemed like something you would feel when on hallucinogens. The dizziness would fluctuate in its intensity but never went away. I had numerous tests for the source of my dizziness but nothing was positive.
At that nine month stage after my surgery, I was still boggling the neurosurgeon, the neurologist, and the general practicioner with my strange symptoms that would not go away. I then found a physical therapist who was familiar with Chiari folk and their symptoms. He outlined that Chiari patients also experience the emergence of primitive reflexes.
This happens as the frontal portions of the brain become stressed (that brain stem compression affects other parts of the brain too) and no longer function as effective suppressors of these brain-stem originating primitive reflexes that normally go away by 2-3 years of age. There are a whole bunch (about 70) that are known and there is no rhyme or reason as to which ones emerge again when you have Chiari. That is why some people are dizzy and some are not. Everyone's brain is different.
There is a group of primitive reflexes that are vestibular driven. What this means is that when the vestibular system is stimulated by head movements this elicits the primitive reflex and causes dizziness. It should not, but because the primitive reflexes are present, those head movements result in dizziness.
Nice to know what can be a source of dizziness but what to do about it? I was given a series of exercises for each of the primitive reflexes that I had and was affecting my equilibrium. The reflexes were, Tonic Labrynthine, Moro, ATNR, and STNR. I did the exercises 2-3 times a day and had no balance issues after two days.
DISCLAIMER: not everyone's results will be the same. I say that, but the physical therapist did say that these reflexes are fairly quick to respond to treatment unlike some of the other reflexes. If you are pre-surgery you will need to do them on a regular basis to keep the reflexes at bay as the brain still remains under stress. Also, pre-surgery neck extension can be a killer with bringing on the Chiari headache and other symptoms so care is necessary in minimizing extension but still doing the exercises.
Well, good luck in finding someone who can help with all those balance issues that are out there. Some centers for neurologically delayed children can be knowledgeable about this too. They just need to know how to extinguish the reflex not just elicit it. Fine distinction but necessary if you want the reflex to actually go away. No, you are not crazy but unfortunately our doctors tend to think that we are. So go out there and find someone who is knowledgeable in what you need!