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Update on my chiari: I don't like to write messages like thi..
🕑 Added 2023-07-14 03:26:45 +0000 UTC Update on my chiari: I don't like to write messages like this but today I've felt very discouraged. My Chiari symptoms have been getting worse. As I've mentioned over the past few years I have experienced ongoing burning sensations, on and off dizziness, headaches, and tingly hands and feet for months at a time. And now my newest symptom to add to the list is a non stop ringing sound. I'm familiar with tinnitus as I've experienced it on and off throughout my life (likely due to the chiari) but this time it's different as the ringing won't stop. It's extremely frustrating. I've also been doing more research on the possible link between hearing loss and chiari malformation and I am curious if the decompression surgery could help me regain some of my hearing. It appears that some children with chairi that also have SNHL have regained their hearing after undergoing the decompression brain surgery. As you may know SNHL hearing loss is supposed to be irreversible and permanent. In any case I saw a doctor today and am going to try and see a neurosurgeon at leading hospitals in other states. The most unfortunate part of all this seems to be that there's still not much research out there on chiari as it seems to be more rare. I read today in an article by a doctor "that there are more than two pages of symptoms produced by chiari malformation" and "the fact that a typical patient will go three to seven years before getting an accurate diagnosis reflects an educational shortcoming in U.S. medical schools". Further that a frequent "scapegoat diagnosis is multiple sclerosis". So most of the doctors I've seen thus far haven't even been familiar with chiari. I really, really hope I have some resolution soon. 😭
