I need a little help and direction. I'm going to apologize in advance because I'm sure I'm going to ramble.
I had a #chiari #decompression in January of 2009. Suboccipital craniotomy, C1 laminectomy, brain stem decompression and duraplasty.... in September 2016 I had a c2 area nerve stimulator implanted to help with #occipitalneuralgia and chronic migraines.
I have #EDS hypermobility. I met with the #neurosurgeon who did my implant, and discuss some of the symptoms I've been having. If I put my head back too far I can't pick it up without using my hands, I can't breathe properly or swallow when that happens. Feel like a bobble-head all the time, hearing crunching and clicking sounds whenever I move my head. Fullness in my ears and loss of hearing on a regular basis, high-pitched ringing and pulsatile tinnitus.
He thinks that it's going to be instability. The problem is I had a lot of bone removed when I have my decompression and his concern is that there's not enough bone on the back of my head and around my #C1 and #C2 to do a #Fusion without me losing too much range of motion. Has anyone else experienced any of this? I'm a little overwhelmed. Essentially I got told today that there's a 50-50 chance that no one is ever going to be able to help me. Devastated doesn't properly describe what I'm feeling at the moment.
I told my doctor, I understand that I am far outside the medical Norm. You might try treatments a b and c with a patient and end up at treatment q and still have no idea what to do with me. I'm used to people being overwhelmed buy my medical history. What I can't accept is when someone's Too Proud to tell me they can't properly help me. My life is more important than that. That was the reason I left my last neurologist. I have an amazing life. I wouldn't change anything. My concern is that my quality of life is being severely impacted by the fact that I'm afraid I'm going to be #InternallyDecapitated. I don't want to live my life like that. There has to be someone that can help me. I don't want to end up in a wheelchair yet.