I’m 49 years old and eight months post-Chiari decompression. Before I say the next bit, I want to say, I have the best team of drs. I don’t think anyone has done anything wrong and I feel like they are working hard to help as best they can. However, I think Chiari is rare, the area I live in isn’t big enough to be supported & my individual case is complicated by other diagnosis.
Although my neurosurgeon says the structural problem is fixed and everything looks good, I remain debilitated by daily tinnitus, dizziness, blurred/double vision, nausea, occipital and neck pain, radiating facial/jaw pain, sensory overload, and migraine-like flares. Ordinary activity and working often make everything worse.
I currently feel trapped in a treatment triangle: neurosurgeon says the structure is fixed and has referred me to pain management and a neurologist; pain management apt is in 2 weeks; and after four months of waiting, I’m still waiting to learn whether the neurologist will accept me as a patient.
In an effort to make myself feel like I was doing something/had some kind of control in my situation, I started logging symptoms in Chat Gpt since March. It keeps saying to ask my doctor about vestibular migraines and/or central sensitization/centralized pain. When I asked, my neurosurgeon referred me to a neurologist.
If I’m accepted as a patient, I don’t know how likely it is that neurology can actually help me?
My rheumatologist believes I should be evaluated at a Chiari center. She said there was a center in New York. I’m so scared and desperate, I’d head out tomorrow, but based on my past experiences, and my current experience trying to get in to see a neurologist… I’m assuming patients can not simply request an appointment directly?
So here’s my questions: Is it normal to remain this debilitated eight months after decompression surgery? Has anyone experienced symptoms like this this far out/post surgery? Anyone have this issue and it eventually calmed down? Did a neurologist, pain specialist, or Chiari center help—and how did you gain access to the right care?
My neurosurgeon wrote me a prescription for Emgality & it helps A LOT, but the relief only lasts 5-7 days. Pregabalin helps but causes my vision to be blurrier, & cognitively I don’t like it. I just feel off when taking a large enough dose to help. Muscle relaxers help, but sedate me. I worry about long term effects & they seem to increase blurred vision too. I’ve had an MRI last month and a slew of eye tests at that time too- all came back normal. I have a bleeding disorder & a stomach issue that prevent me from using NSAIDs or things like Celebrex. Is there a solution that’s not pain meds, muscle relaxers, or pregabalin/gabapentin? I’m hoping to see a Neurologist and to speak to him about migraine medicine.
Pain meds help calm symptoms down, but I’ve fought tooth & nail since my cervical spine fusion 7 years ago, not to be put on pain meds regularly. However, the aftermath of Chiari surgery has broken me. I’ve lost so much function. I wake at night with radiating pain down my jaw/face and am woken a lot by itching in my ears and scalp. I’ve resigned myself to pain meds or any medicine that restores function & gives me some quality of life, but I am praying for a better answer than the meds I’ve been offered so far. I’m hoping there’s a better way or a better treatment plan out there. Or at least for a neurologist to confirm which medication best for my condition.
If this is as good as it gets, I need to start selling some things and downsizing my life, to give me the option of quitting work as soon as possible. I’m barely keeping my job and only able to do it bc schedule is good with many breaks. I’m terrified of what my life will look like in 10-20 years? None of my drs can answer much of anything I ask concerning if this is normal or if it will eventually resolve. Other than my rheumatologist, who told me I really needed to be seen by a Chiari specialist.
I previously endured a cervical fusion seven years ago and have had surgery to shave the bone in lumbar spine (cyst removed & found a bone spur).
After everything my body has been through, I’m frightened that this is simply my life now. I rarely feel able to go out with my husband, I don’t visit my daughters at college, or enjoy ordinary life. There’s a short window daily from about 9:00-11:00 every day that I feel physically & cognitively able to function well enough to call it normal-ish. I have almost no quality of life. I’m living to work & barely keeping my job.
I’m desperately seeking honest experiences, practical suggestions, encouragement, or advice about what to pursue next.