Chiari Advice Please
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My journey is lengthy and frustrating like most of us on here II would suspect, and I'm still not there.
I've had several years of debilitating migraines and about 3 years ago they went up a notch where they started to last for days, with pain in the back of my head and zaps, nausea, plus extreme tiredness, pain behind my eyes, light headedness and an 'out of it' feeling in my head I can only describe as 'dropping' like on a rollercoaster. I suffer sinusitis a lot, and a full feeling/pressure in my ears plus flickering/twitching eyes from time to time.. Additionally I get a lot of neck pain, pain between my shoulder pains, chest and thoracic pain, lumber pain and calf pain/weakness, and red and burning toes.
The list is ridiculous and endless! I have been pushed around specialties and had diagnosis such as vestibular migraines and chronic fatigue which really weren't correct.
I finally thought I'd been diagnosed correctly when L4/L5 stenosis was found and I had a laminectomy 3 months ago. As part of the preparation for this I had several MRIs and tonsillar descent of approx. 2mm was reported. I asked my neurosurgeon at the time as seemed to be more appropriate for all my symptoms but, he fobbed it off as mild Chiara Malformation which wasn't an issue for me.
So, surgery performed, dural tear incurred in surgery, CSF leak and stitch given in surgery and bed rest following a chronic migraine post surgery.
Recovery has gone pretty well back-wise but I am getting a lot of migraines again and the same old symptoms....could this be Chiara Malformation rearing its head exacerbated by the CSF leak as know this can happen?
I have written to my neuro surgeon requesting a follow-up MRI but a) I do not think he is experienced in Chiara Malformation as proven above and b) I don't really know what to do next.
Do my symptoms sound like Chiara Malformation? Any advice? And, any recommendations for a specialist in Sydney, Australia?
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