Hi all! I am a 47 year old woman who survived a Perimesencephalic SAH in my pons and brain stem area on June 7th of this year. I was in NY Presbyterian in NYC and am so thankful I live close enough to have received such excellent care! The follow up is a litte lacking but that's another story! LOL I spent 4 days in ICU and another several days in the regular hospital unit on the neuro floor. After that I spent a few weeks in Kessler Rehab for brain/stroke. Again, I am so grateful for living close to such amazing facilities!
I feel like I shouldn't have any residual effects but I do. My follow up doctor at NYPres did not treat me in hospital and keeps telling me I had the perfect bleed! That I should be 100%! But then when I say okay than I'm going to have my shoulder surgery (long story related to hemorrage event) she screamed NO! So at over 3 months out, she gives me mixed signals. She tells my what I'm experiencing is normal and temporary (mood swings, pain, fatigue) and I am 100% and then two seconds later will say "No flying, No vacuuming, No lifting anything over 10 pounds, No asprin, No ginger or anything that thins the blood for risk of re-bleed and you still need to rest as much as possible." That doesn't sound 100% to me!!!!
I have minor speech issues that mostly come in the form of a stutter or reaching for the words making my way of speaking much slower than before SAH. I have some minor difficulty walking from unexplained weakness in my left leg and spinal pain. (I walk like Tim Conoway on the Carol Burnett Show!) I have what the Director of the ICU Neurology described as a permenant "ice cream headache"! And I have serious mood problems as in not being able to control them! I cry for nothing or I flip out into a rage for no reason. Not a great effect considering I have a special needs 5 year old who can push my buttons and stress me out on a good day! The doctors keep telling me these symptoms are "likely" to be temporary but after talking to my brother who had a double aneurysm rupture 10 years ago, he said "You are never exactly the same."
I'm just happy to have this forum because for the first time I think I may have found a group of folks who WILL UNDERSTAND how I feel and what I'm still going thru!!!! Sometimes I miss living at Kessler where everyone was in the same boat and we all quietly understood when someone cried or limped or got angry!