I would have the same questions as you in your situation. (What do I do about the symptoms?) It seems that people with a host of symptoms and with evidence of Chiari on imaging are being told “no” to surgery. Which is okay after a rash of unnecessary surgeries.
But, I do not see much evidence that continued searching for medical answers continues. Some questions that you might want to ask is
“What are the effects of pressure on my spinal cord in the foramen magnum where the Chiari malformation is present”
“what about symptoms with pressure on my accessory nerve”
“What about pressure on the vertebral arteries or the spinal arteries”. Those vertebral arteries supply a lot of the brain. What if the blood supply is slowed sometimes? What are the symptoms? What can be done about it?
Might be helpful to research the different components present in the foramen magnum so they make a bit more sense. Be careful in your communication with the doctor.
(I can’t think of the name of the artery but the one that supplies the occiput nerve is in there too. What kind of pain can be attributed to an ischemic nerve?)
There are a variety of different structures in the foramen magnum, not just CSF flowing through the entire hole.
For head pain, I would suggest doing a systematic trigger point workout on yourself. Headaches are rarely attributable to just one thing. So before a doctor gets you on medication or nerve blocks, you might want to try it. Maybe you would not need so much medication with all that side-effects they can potentially bring! T
here is an excellent book called “The Trigger Point Therapy Work Book” by Clair Davies. It is written for an individual to understand and to work on their own body themselves. It might not be very flashy or cost a lot of money, but I have been very pleased with results. Takes time and effort on your part to read the book, understand, and then to do it. You do the ASSESSMENT and the treatment yourself
Motor control or Sahrman based physical therapy may be of some use if you can find a physical therapist skilled in ASSESSING and treating that if muscle co-ordination or stiff vertebra is involved.
Maybe your head pain is more attributed to neural sensitivity or poor neurodynamics? There are ways to ASSESS that too. I guess what I am saying is that your medical team needs to figure out the cause of your head pain not just start to throw treatment at it. Often the ASSESSMENT part is weak!
With you vision, a team of an optometrist and a vision therapist trained in concussion or brain injured clients with vision problems could ASSESS your vision and give treatment options. If the optometrist thinks a opthamologist or neuro-opthamologist is more suited they could recommend that too. Of, course your neurologist may have an opinion on your eye as well.
The investigative journey can be long. Good luck
We Chiarians hear about great new treatments available. I would very much like to hear about them. An alternative to surgery would be great.
