Winb143 Posted October 24, 2013 Share Posted October 24, 2013 Keep the info coming Daffs xx And Sandi xx if you get it x Love to You All WinB143 xx Quote Link to comment Share on other sites More sharing options...
iola Posted October 25, 2013 Share Posted October 25, 2013 I went to see my neurosurgeon yesterday. He is 4-5 hours away so it took awhile to get there. I just had to see him again and ask the typical questions. Things I've read on here and thought about over and over again. Something very important he said, "To be clear, you had an SAH". Did not matter how it happened, I had a bleed. We can call it an NASAH but it is first and foremost an SAH. For me, it was not caused by an aneurysm rupture (unknown etiology) but I still had this bleed and I am very lucky to be here. I guess I was trying to think it was different somehow because it was not by an aneurysm rupture. I don't know why. Most likely a venous bleed. That's what they think. He also said, all the physical and emotional feelings are normal. The tight head, pain points, short circuits, neck aches, tender temples, dizziness (the worst), crazy sleep patterns, anxiety, etc... All Normal. Feeling like I am progressing forward and then "slam" rolling backward. He said I will plateau at times and feel like nothing is happening. Most importantly, do NOT compare yourself to who you were before because you are NOT who you were before. It is a life changing event and you will never be the same because of this. He and the nurse both said there is 3%, or less, of a chance this will happen again. But, I could also get hit by a car on the way out. Who knows. That's comforting. Another important fact, he and the nurse both stated, is that it will take 12 - 18 months to start feeling "really" good and for the weirdness to calm down. I believe that. He told me to stop reading all the information on the internet (I'm obsessed with finding information) and maybe should try therapy. Maybe I should. Instead of calling my type of bleed perimesencephalic he liked calling it Negative SAH. Of course that begs me to look up all the info I can find. All and all it was worth the trip. I have read most of what he told me, on this site, but sometimes you just need to hear it in person. Hope is helps some folks. I have ranted on longer than usual. iola Quote Link to comment Share on other sites More sharing options...
Tony H Posted October 26, 2013 Share Posted October 26, 2013 Great post Iola, thank you. Getting used to the length of time that it is going to take to recover and having doubt about how well the recovery will go were really big issues for me. Also getting useful medical advice about what will happen has been a challenge. The advice that you received accords really well with my experience since my bleed in May last year. Best wishes Tony Quote Link to comment Share on other sites More sharing options...
Louise Posted October 26, 2013 Share Posted October 26, 2013 Join the club Sandi I will always have the problem has improved for me vastly over the years (not of late though) just keep doing what your doing honey... Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 26, 2013 Share Posted October 26, 2013 "I" You have come on a bundle so be proud of what you have achieved. All of us have, so 3 cheers to All BTG'ers for not quitting. Keep fighting it Love WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
kpaggett Posted October 29, 2013 Share Posted October 29, 2013 Iola...I used to look up any and all information too. Then one day it became apparent to me that it was only making me suffer more as I didn't have the full recovery a pmSAH was reported to get. Then I found out that only a small portion fully recover where they don't notice anything different. This only depressed me more. I stopped reading. I stopped searching. I found strength within. I began to heal myself as my attitude shifted. Health is a state of being, not of someone telling you how you're body is. How is your spirit? That is health. ~Kris Quote Link to comment Share on other sites More sharing options...
MaryB Posted November 6, 2013 Share Posted November 6, 2013 Daff, I am having a longer version of the test I had at nine months out on Tuesday. I am seeing a therapist that specializes in brain injuries. Now it is count back from 100 by 7's? I need to practice that one! And say the alphabet backwards as well! I did a personality test yesterday and kept going back and forth with before SAH and after SAH person and it is going to be a mess. I realized about an hour ago one question was "I like children?" and I said "false" Oh my lord, I was thinking screaming kids in Walmart children! I keep telling myself I cannot call her today and explain myself I will look more neurotic! Maryb Quote Link to comment Share on other sites More sharing options...
Guest Mike Posted November 9, 2013 Share Posted November 9, 2013 I had suffered the same as Sandy and still do It's very hard and frustrating to be honest. Trust your instincts your mind WILL adapt slowly but as in my case it has done me proud in the end. Having to do a safety check each time I leave the flat is annoying, as is trying to remember why I popped over the shop, then eventually it will become second nature for you, wishing you well. Mike Quote Link to comment Share on other sites More sharing options...
Winb143 Posted November 11, 2013 Share Posted November 11, 2013 Mary, It would take me an age to say Alphabet backwards, did before op !! We will all get there with off days and good days. Love to All and keep fighting xx WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
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