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Comment by Glen on January 30, 2013 at 4:20am

Thanks to everyone for your comments. I'm sure I remember being told I would notice things happening to me during the recovery so I'm trying not to let it worry me now. I have an appointment so see my surgeon in April and hope he will give me the green light to start running/cycling again. Fingers crossed! At the moment, it's like Groundhog Day for me. Little activity eat, wash, TV etc etc. however, I feel so lucky that I can function pretty much the same as before my bleed compared to some of the horror stories I've read on here. Btw. I am really struggling to get a good nights sleep due to pain in the area of my scar and then not being able to switch off from thinking about my experience with my AVM.
I hope all of you are in a good place and am grateful for your comments. All the best to you xxx

Comment by Nicole R on January 30, 2013 at 2:59am

Ask your doctor about it, but I can tell you that when I was 3 weeks post craniotomy, I had so many weird things going on, I could've written a novel! My scalp was numb, I had nightmares, crawling bug sensations in my brain, I got scared at very little things, it felt like a dark fog had settled over everything, the list goes on and on. Hopefully it will be something that fades away with time, but call your doctor and ask, it will definitely make you feel somewhat better to hear what they have to say.

Moderator Comment by Lesley S, Queensland on January 26, 2013 at 12:21am

Hello Glen. The best thing you can do is call your doctor! Please let us lnow how you go.

Comment by kristi on January 24, 2013 at 1:35pm

Hi! I don't know where you're avm was or whatever but I will share my experience as quickly as possible (I'm a rambler). I had an avm between my right frontal and parietal lobes that ran very deep (no idea just how deep). I had a 13 hour craniotomy, remained in the hopsital for roughly a month post-op. After my crani, I had experienced some strange things when it came to vision, taste and smell. I couldn't taste anything and my tongue always felt like I had just burned it with hot cocoa or something. I could smell anything and everything. I could smell flowers from a block away, body odor as if I stuck my nose right in your armpit while I stood in another room than you. I could smell gas everytime a car started. My eyes were...I felt like I was in the matrix. Everything was bright and clear, so vivid it almost didn't seem real, like life was in HD or something. Now, a year and a half later....a lot has returned to normal. I got my taste back, my sense of smell has stabilized and my vision is annoyingly back to where it was. It just takes time. I tried to think of it as a system restart, like my senses were re-evaluating, reorganizing....like the crani had defragged my brain and I went through a period where the files were being put back into place. But, it's always safest to note these changes and ask your doctor about them whenever possible.

Moderator Comment by dancermom on January 24, 2013 at 11:26am

Call your doctor about this, Glen.