I think that it is important to note that the index categorizes how patients SELF-REPORT their symptoms after surgery. I would gander that upon MRI imaging, neurosurgeons would say that the typical Chiari surgery is a success from their point of view. We as lay people have to be careful when a doctor says that there is “permanent nerve damage”. Sometimes that is the case, but sometimes it is just that a neurosurgeon does not have the knowledge base in their wheel-house to address the remaining or newly emerged issues.
For example, it seems that I will have permanent hand weakness as a result of Chiari’s compression on my spinal cord - Okay. According to doctors, I should have had permanent balance and dizziness problems as well. It started after surgery, every day all day. I saw many different doctors and physical therapists who all said that they could not help me. At the nine month mark, I found new brain/vestibular processing exercises that fixed the balance and dizziness right up. I can climb stools and skate which is more than what was expected of me. I was able to retrain my brain to process vestibular information correctly and give good information to my brain so that it did not get confused. Sometimes our brains can figure it out after surgery, but sometimes it needs help.
A surgeon’s job is done post-surgery and now it is time for a patient to move along. Unfortunately, there are not so many options to ACCESS even though they do exist. We see so often that symptoms, doctors cannot explain nor address, are relegated to psychosocial issues - “Somebodyelse’s problem”. Not very helpful for the patient. What I would like to see is more understanding on the part of doctors that other treatments are necessary and to guide the patient in that direction rather than dismissing them as crazy.
You are right in that I have listed many different treatment options that work for Chiari people but also other people who find themselves with baffling pain, incisional pain, visual processing difficulties, balance and dizziness challenges, and many others. The point of the Chiari Severity Index, in my mind, is that people who are more affected with Chiari symptoms have more problems after surgery; it does not say that they cannot be helped. What is necessary is a shift in mindset and to go beyond a surgical treatment.
I strongly believe that the compression on the spinal cord and the cerebellum needs to be removed by surgical means in order for Chiari folk to make any head way in symptom management and improvement. Once addressed, symptoms often remain. I have found that symptoms that rely on brain processing can be addressed through the various therapies I have listed. We forget or are not told that Chiari affects how our brain works and processes the information from our bodies.
After Chiari surgery, we can retrain the brain to work better, but we need help, support, and direction to do it. It should not be a solitary Herculean journey wrought with false hope or dismissal. Treatment after surgery should be a matter of course and well-laid out. Therapy for balance, therapy for visual processing, therapy for that crazy head pain that does not go away.
After a knee replacement, it is understood that the patient will have to under-go physical therapy to regain mobility. People with poorer mobility before surgery need more assistance than people who are young and spry. Chiari treatment post surgery should be no different.
