My mouth dropped open when I read your post and just ordered your book through Amazon. I have the same condition, and in a very similar fashion to what you're describing I did not have any symptoms or issues until I hit about 31. I've had repeated visits to neurosurgeons and now two surgeries, both were unfortunately unsuccessful attempts at fenestration and shunt catheter. In both cases scar tissue took over and blocked the shunts and I continue to see growth in the cyst today. Its been a big interruption in my life and for my family - with symptoms that have steadily increased over time: headaches, nausea (especially worse first thing in the morning after laying down all night), lost sense of smell with a consistent phantom smell or "aura", exhaustion/lack of energy, and mood changes (although not sure if that's directly or indirectly caused).
I'm fascinated that I found this post (thank you for writing about it). Seems this is most common in children and I've found very few answers online or through the neurosurgeon opinions I've sought out. Very curious to read your book and to compare notes!
I'll check back on this post, please do feel free to reach out to me if you are interested in discussing further. I'd be happy to provide my experience or details on doctors/findings.
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My mouth dropped open when I read your post and just ordered your book through Amazon. I have the same condition, and in a very similar fashion to what you're describing I did not have any symptoms or issues until I hit about 31. I've had repeated visits to neurosurgeons and now two surgeries, both were unfortunately unsuccessful attempts at fenestration and shunt catheter. In both cases scar tissue took over and blocked the shunts and I continue to see growth in the cyst today. Its been a big interruption in my life and for my family - with symptoms that have steadily increased over time: headaches, nausea (especially worse first thing in the morning after laying down all night), lost sense of smell with a consistent phantom smell or "aura", exhaustion/lack of energy, and mood changes (although not sure if that's directly or indirectly caused).
I'm fascinated that I found this post (thank you for writing about it). Seems this is most common in children and I've found very few answers online or through the neurosurgeon opinions I've sought out. Very curious to read your book and to compare notes!
I'll check back on this post, please do feel free to reach out to me if you are interested in discussing further. I'd be happy to provide my experience or details on doctors/findings.
October 17, 2014 - 3:31pmThis Comment
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