My granddaughter is 18 years old and a senior this year in high school. She was diagnosed with Chiari at the age of 2 and had surgery at 4. She has been and still in pain of some kind every single day, but at this moment she is in a nursing home for rehab to try to walk again. It all started several weeks ago when she complained of tingling, numbness and pain in her feet and legs. It worsen over the next several days to the point where she could hardly walk. She went to our community hospital ER and they sent her to one of the main hospitals in the city. She was admitted that evening and by the next morning she could not stand, could not walk at all. They ran tests for the next week. MRI of the spine (lower back) EMG and many blood tests. At the end of the week, the neurologist assigned to her announced that there is nothing physically wrong and it’s all psychological. He recommended a nursing home for rehab and a referral to a neuro psychologist. That was 2-1/2 weeks ago and she has made no improvement whatsoever.
My question: has anyone out there had these symptoms post op and if so could really use your help in determining what this is. I’m not convinced it’s psychological as she has heard this very same thing many times throughout her life, even before the Chiari and each time it proved to be something physical.
Your heart must be breaking to see your granddaughter go through such difficulties.
Please note that I had a short bout of not being able to walk or move my limbs with any co-ordination BEFORE my surgery. Other Chiari symptoms steadily got worse until I had surgery which overall improved most of my symptoms. However, I had a core group of symptoms which would periodically worsen.
I am waiting for testing that will examine my bloodflow to my brain. They are thinking of something called vertebrocasilar insufficiency (Bow Hunter’s Syndrome). Previously, I have had different types of CT scans and MRI’s and loads of blood work that was all normal (barring the Chiari malformation which now looks fine in imaging).
I do not know exactly what the names are of the tests - just that they are dynamic imaging of blood flow where they will be looking at how my vertebral arteries are compromised by head movements (usually neck extension and rotation). I have to go to a larger center than my little city.
I am always leery of getting a psychological diagnosis from medical professionals who do not practice in that area. It seems like they are blaming the patient because the professional does not know what is wrong with them. A neurologist only has a small pool of knowledge and if symptoms and presentation do not fit with what the neurologist knows then they are not able to help a patient.
Bottom line - perhaps a vascular issue would be worthwhile to investigate. I do not know what that route would look like for you.
I pushed to be referred back to my neurosurgeon who was then able to refer me for other testing and specialists. My family doctor and the two neurologist that I have seen prior have been unhelpful at best. I do not know who I will end up seeing. It may be an endo-vascular surgeon.
Good luck in assisting your grand-daughter find the help that she needs
Thank you for taking time to answer my post. The information you provided is extremely helpful and is truly appreciated. I will definitely share this with my granddaughter. I wish you all the best.
As my granddaughter says and actually has it tattooed on her leg, 'STAY STRONG" - CHIARI These words surround the Chiari Purple Ribbon with a butterfly worked into the ribbon!