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tea_hoarder3 karma

Fellow zipperhead!! :) kudos for the awareness boost. what symptoms do you still have? Are you able to work stll?

tea_hoarder2 karma

The way my doctor discribed it is that areas of your brain that used to not be able to communicate, or at least not properly, suddenly are getting CSF. Essentially it's waking up. The problem would be if it doesn't go away with time. I got all kinds of weird effects on my body that would randomly show up after that surgery. I completely understand spacing out. Part of my ST is working on attention. It's like I was able to hear EVERYTHING and focus on nothing. She's helping me learn to tune out the background noise and focus in on one person or what I am doing. I've been making improvements but I honestly don't know if that will ever get 100% better. The tiredness should go away. The brain healing is a lot of work since it essentially controls your body... it's exhausting! How far post op are you? I believe there needs to be A LOT more research done on procedural options for this condition. Taking out a piece of your cerebellum seems to have a lot more effects than they are saying. I'm not sure if you know the history but way back when, they attempted surgery on 5 patients with a chiari and they all died so they didn't start surgically treating it again until the 80's. That's not long ago whatsoever when it comes to learning and treating a disorder of the brain. There are some really good support groups on fb if you are ever interested. They can help because some of the doctors are ignorant and it's nice to have someone to vent to that understands.

tea_hoarder2 karma

I feel ya. Give yourself adequate time to recover before worrying about memory therapy. A lot of it comes back with healing. Try lumosity for some at home stuff. My ST told me it's a great brain work out. So far it seems pretty useful. Sorry to hear about seizures though. I didn't have that. They did keep checking me for it prior to surgery though. What symptoms are leading them to believe you have seizures now?

tea_hoarder2 karma

I feel ya. My memory was pretty shot after and still is. I am going to a speech pathologist to help and so far ive seen improvement. For the dizziness see if they can give you something for vertigo. I had mad issues with that immediately after bit meds help. Its a huge misconception that chiari is just a head ache. Im a year post op. Feel free to pm me.

tea_hoarder2 karma

I completely understand. It's so hard. Even functioning some days I hard. I lost a lot of ability to spontaneously think of what I need to do. Like, if I'm sitting here, and I need to do laundry, I better have wrote it down. It's gettingbetter... somewhat... Or I'll be mid task and completely forget how to do what I'm doing. You don't need a psych eval. They do. lol The lack of knowledge about Chiaris and decompression surgeries is outrageous. Sorry you had to go through all of that. I doubt that we all are psych cases with the same symptoms after the same surgery. My surgeon said her patients all go back to normal life. I think she just doesn't follow up.