I have a 9mm chiari malformation and have noticed mainly dizziness and cognitive decline (I can not find the right words and have noticed more slurring/speech difficulty) along with swallowing difficulty and fatigue but I do not have the classic severe pressure at the nape of my neck after sneezing/coughing. I feel getting a minimally invasive surgery would be best, one that involves just getting rid of some bone so that there is less compression instead of placing a mesh plate in the back but I was wondering if anyone has had experience with this surgery/advice/recommendations? A lot of what I hear is that the surgery only helps the pressure/headaches in the back of head but not the other symptoms, and I'm just at a great loss at what to do.... My neurosurgeon says the decision is up to me which is confusing because I'm looking for someone experienced to tell me what the best thing is to do, not to have to make a huge decision like this myself ???
-B
I have had just the bone removed from the foramen magnum. The neurosurgeon that I saw prefers that technique and its outcome over the dural patch method.
Your doctor is mostly correct in that surgery address the occiput pain and your more obvious neurological findings like nystagmus, swallowing and voice issues, trapezius/sternocleidomastoid function (though you still need to train the post surgery), and urinary incontinence (may still need help here too) to list a few.
The effects of chronic pressure on the vertebral arteries is a little more vague in how well people recover from those effects. I have had those effects described as the secondary effects of Chiari. Post-surgery, vision exercises and motor control exercises for the neck and shoulders specifically are often indicated though not prescribed. Primitive reflexes may be needed to help with balance issues and smoothing out your movements.
The secondary effects can be addressed (not solved but at least improved!) with those therapies that I out-lined so you may want to investigate and see if they jive with your thoughts. However, I do get concerned when you mention cognitive impairments. For me personally, I declined from a smart cookie well on the ball to having poor cognitive function as measured by a neuropsychologist before my surgery. I have now been retested post surgery and am severely impaired in only two areas (which I was not prior to Chiari wreaking havoc in my life. I am in a profession career and have had to make significant adjustments to resume working after surgery.
There are ways to address a lot of the symptoms that are not cleared away by surgery. Good luck in your search for information
My main concern at this point, is honestly, the cognitive degeneration. I am at a complete loss for words all the time. It's awful. I was never a fluid thinker before as I was diagnosed with ADHD at ten years old (although arguably a symptom of Chiari Malformation- the doctor says it was congenital and that perhaps I'm feeling the pressure now because as I've aged my cerebellum has grown tighter and tighter to my spinal cord?) I definitely lean towards the bone decompression without the dural patch but worry that my droopy cerebellum will not fall back into place and just slide down further... I don't even know if that's possible or makes sense as I am not a doctor. Thank you so much for all the information provided. You gave me hope concerning your cognitive functioning improving after that surgery. That is what I'd love back the most. At the end of the day if you do not have your brain, you feel like you've lost everything. I originally thought I was developing some early onset Alzheimers when this all first went down. What doctor performed your surgery by the way? Anywhere near MA? He seems knowledgeable :)
-B