Having Chiari is no fun and it can seem like no one is able to help. Please know that often times we have to be our own advocates simply because medical professionals do not know how to help us. We have to push hard to find the ones who can help. I have found that if I look at Chiari as a brain injury or a concussion, the world of treatments opens up considerably.
Given your age, I would suggest that you have someone step up to assist you in advocating. Someone with some medical back ground might help but is not necessary, some one who speaks well, asks questions, and is willing to attend appointments with you - not all but the important ones for sure. A family member, a family friend, a teacher, a neighbour… Now is not the time to be shy.
Get a binder together to keep all your medical information together.
Your main symptoms are vision and brain fog. You have not had decompression surgery.
I am assuming that you have had your vision screened and that there are no other problems with the physical nature of your vision system. If you have not done so it would be prudent to screen out other issues that could be affecting your vision. A lot of Chiari investigation is ruling out other conditions that affect health.
Chiari affects vision by affecting the visual processing centers. A typical optometrist will tell you that your vision is fine as they do not typically assess the cognitive aspect of vision. An ophthalmologist might tell you that you need surgery on your eyes muscles to help them keep in alignment. There is nothing wrong with your eye muscles as the problem is with your brain.
An optometrist or ophthalmologist specifically trained in assessing your brain’s role in vision is necessary to get you on the right track to improve your vision. They might advertise as treating concussion related vision problems. Hopefully, they assess the musculature of the eye but I have personal found that this does not happen. They assess, then often pass you on to a vision therapist who gives you eye exercises. No need to see them every week and stay away from the formulaic approaches where you pay $2000.
Please note that I personally did not improve my vision with a diligent approach to therapy before surgery. It did the trick after surgery. However, we are not all the same. I also did not do all the other therapy approaches I know now before surgery either. Perhaps that would have helped.
Brain fog needs a multi-pronged approach
Decrease stimuli and stress to maximize the brain function that you do have. Research concussion approaches to doing so. Auditory, visual, screen time, social, and physical all are drains on the brain when it is not working well.
Concussion Treatment Strategies to Normalize the Brain
Eye exercises themselves help with this. When the brain has to decode conflicting input from the visual centers, it has to work extra hard.
Physical therapists and other medical professionals who deal with concussion and brain injured people will have a wealth of treatment options. They are just not all equal in quality. It seems that a sub-par approach is to treat with a graded exercise approach - walk a little today, walk a little more the next day, monitor your symptoms, maintain, walk a little more. This is not enough as it does not deal with brain function just brain tolerance.
Medical professionals need to be able to assess:
You will not know what all these assessment areas are. However, who you see should be able to ASSESS and TREAT most of them.
With Chiari, the above listed brain abilities no longer provide the brain with good quality information. When the brain receives conflicting or confusing information, it has to work extra hard to figure things out - hence the brain fog.
I would suggest that you read my posting in “MRI - Why is my Chiari ignored” and know that you ultimately need to have a neurosurgeon review your MRI and hear your symptoms.
I have written a lot. It may be helpful to print this posting out and put it in your medical binder. Have your advocate read it and others that you find helpful. Make a to-do list in order of priority. Be in touch and ask questions.
Good luck in your journey