Hi! I was diagnosed w chiari 1 in January 2021 and had decompression surgery July 2021… I felt relief for maybe six months after the surgery but after that have been in nonstop daily pain with the pain only increasing as time goes. I currently feel like my symptoms have completely regressed back to how they were before my surgery. I’m missing excessive amounts of work which brings its own stressors and am less and less involved in family/friend’s lives due to the pain and emotional toll this is taking on me. My main symptoms are daily headaches/migraines that start at the base of my skull and go behind my eyes usually resulting in a pain level 7-8/10, light and sound sensitivity, nausea, severe brain fog and fatigue, feeling lightheaded and like I will pass out frequently, a deep aching pain where my surgery was, weakness in my extremities and a burning sensation that comes and goes down my arms/legs.
Prior to the surgery my CSF was completely blocked through one pathway and mostly blocked through the other. This was what ended up pushing the surgeon to do surgery- on top of the symptoms. Now 2.5 years post op it flows normally through one pathway but “minimally” through the other. My surgeon and another neurosurgeon could not tell me the importance of the CSF flowing/if this could be a reason for my symptoms coming back and do not think I need another surgery. My neurologist has tried a wide variety of migraine medications but nothing has even remotely helped, and now thinks I have occipital neuralgia. I receive Botox and nerve blocking shots every other month and get minimal relief from these as the nerve blocks wear off quick for me. I’m told the next option is occipital nerve radiofrequency ablation, or basically burning the nerves to numb the area. I don’t fit all of the symptoms for that diagnosis but am willing to try that if it provides even some relief…
Has anyone else experienced anything similar or have any ideas or suggestions for relief? I feel so discouraged, drained and ultimately misunderstood by anyone that doesn’t have this diagnosis.