This is a tough question. I have asked other’s if the have seen a difference in me. And the answer is usually I am the same as I always was. I think cognitive changes, though inevitable, are hard for us to recognize. They are too subtle. But I don’t think I am as sharp as I once was.
David Andrus, Hamilton, Ontario Canada
My subarachnoid haemmorhage (SAH) was in 2001 (I watched the Twin Towers exploding as they fixed my head "exploding"!) I had NO PAIN from that start, but came too after the operation feeling like my head had been scraped clean from the inside out. My SAH meant that although there was blood on the brain, I think the amount and location determine the outcome. 13 years later I think I'm sometimes "slow" to process information too, but have built up a raft of "workarounds" to try & compensate for any deficiencies. I think the thing to remember is that this was a BIG deal operation, and your body & mind will take their time to heal. Be kind to yourself, and give yourself some space. I notice improvements still happening- admittedly fewer than a few years back- even 13 years on!!! You don't say how old you are but of course that also determines outcome- that and the general state of your physical health/ daily exercise routine, etc. SO MANY variables.. Stay strong..and share, share, share!
I had 3 aneurysms clipped October 2013. I had difficulty processing information and remembering things. I insisted on cognitive assessment which showed no changes in language skills but a distinct slowing down of my processing skills. I also experienced a seizure. The neurologist put me on lamictal and I have to say I have been so much better. Of course everyone is different. I had to develop strategies too.
Yes I too have the same feelings that you do. I was coiled in April 2012, then had a brain stem stroke, and later in May 2012 had to have a shunt placed. I try so hard to be the way I was before but I’m not. I was an office manager of over 400 people and now it’s as though life has been turned upside down. I have short term memory loss and at times I beat myself up cause I could do those little things. I feel like I have to have a list for everything. Then I wonder why I needed the list. At times I feel so stupid and then I get irritated with that thought . Blessed to be here to watch my nephews grow up.
SAH a year ago and second coiling six months later. We paid for a psych eval before being asked by SS because I was having great difficulty processing. Psych eval turned out well enough the Doc said I didn’t need the brain cells I lost. It does feel like a big part of me is gone on vacation and I forgot to go along! I have an unusual accent now that gets heavier when I’m tired or strongly stimulated. I often list when I walk. I don’t always know the small words much less the big words. I can usually explain what the word means and someone else provides the word. It seems the longer I’m on here and since I’ve been helping out, my brain is accessing information better. I’ve also noticied that words, the big words, come to me more when I’m typing than talking. Maybe the difference between Wernicke’s and Broca’s. I also play games, I love The Secret Society which was very difficult when I got out of hospital. I make myself name the item or visualize an items shape before I allow myself to go looking. Oh and I see black and white, no gray, almost OCD about things. I don’t understand innuendos anymore. It makes it tough around my moms family as that’s how they speak.
Laughter at myself is probably one of the best things, allowing my loved ones to tease me is good to. If I don’t like their teasing I can try harder. But it’s nice to be with people who love you no matter what you sound like or say. In the beginning, I came up with the most off the wall words and they would have to guess at what I was trying to say. It made me better with words! Look back at the progress you have made in the last six years and pat yourself on the back. Talk to your doctor about your sleep habits.
Penny ~
I’m 3 yrs out from rupture, have 9 coils. I’m noticing more & more of what you’re explaining. Can’t honestly remember what it was like the first couple of years. I’m also noticing trouble spelling, comprehending. I can look at a phone # & by the time I try & dial it I’ve completely forgotten what it was. I tried to call my husband on his cell last week & had totally forgot his number. I also have a hard time with remembering words & when I try & tell things I forgot what I was going to say.
I’m seeing a neuro locally but not have been happy with her or her office staff so I’m going to see someone else next week.
I take trazone for sleep, it seems to work very well for me.
I wish you luck in finding the answers, sometimes it’s helpful just to know others are experiencing the same things.
Ginger ~
Did not have coil but clipp and also one burst . I do have cognitive problems it has been 14 years for me but my godsend I found a neuro therapist they specialize in helping people who have had brain injuries and such they Are different then regular therapist I have came such a long way when I first took that neuropsychological test they give for I cried at the results ask your neuro if there is a neuro therapist you can go to not just a therapist I still have problems but I am functional now when once I could hardly get through the day
I had a rupture/clipping over 10 years ago and the pipeline 2 years ago. I have struggled with short term memory issues and was having weird episodes of funny tastes and smells, I would then zone out for about a minute and be exhausted after. Sometimes floaters in my vision, which turned out to be mini strokes and the smells, we know now were auras from seizure activity. I ended up having a major seizure without warning or auras and fractured my spine in 7 places. So if your having any weird brain activity, I would suggest a sleep study. I haven't slept well since the first annie and I totally agree with you about heavy sleeping meds. I've heard one you start you will never sleep again without them.
What I use is benadryl, nyquil cough but just cough, not nyquil with all of the other stuff and my dr. prescribed me vistaril which is an antihistamine like benadryl but stronger and you can safely take it long term. Also try falling asleep while watching TV. That has helped me a lot.
Don't be hard on yourself! Any time there's brain involvement there is a chance for developing issues, that don't make sense to most doctors. The brain is still largely unknown. They claim my seizure had Nothing to with my pipeline(P.E.D) but the seizure was located exactly where my annie is.....
You have to be your own advocate, so if it starts impacting your life in a big way, pursue some answers and don't give up!! I'm soooo sorry that you are having to go through this. Best wishes and I will pray for you. <><
Hi Penny,
I had my annie clipped Feb. 3, 2011. It took me a very long time to get to where I am today. I experienced everything that you have mentioned and I know exactly what you mean. I still have days when speaking is difficult. I find when I'm tired, stressed, emotional etc., it really does worsen. I can't speak fluently during those times and I struggle to find the simplest of words. I will also slur when I'm tired, and if I'm talking to family or friends on the phone who know me well, they know right off the bat if I'm tired because of my speech. I'm also slower on some days to process information. I become emotional very easily as well. Some days can really be a struggle!
I just started back to work this past September. I wasn't able to return to my previous occupation due to the changes. Thankfully, I work for the Municipal Govn't and I didn't lose my full time status and they found me a position that I'm presently doing. I had to take a pay cut, the job is 'no brainer' kind of job (no disrespect intended toward us survivors) but honestly, I have days that I really struggle doing it. My fuse is much shorter now and I have a difficult time putting a zip on my mouth some days and I'll "tell it as I see it" kind of thing. I find that my level of patience not what it used to be and some days I really have a hard time just getting along with people! Lol not even kidding. It's a journey, that's for sure.
I know that I've improved but I'm also beginning to think that this is as good as it's going to get. That in itself can be disheartening. Keep your chin up and be sure to talk to people that truly 'get it' and can give you understanding. I find that is so important.
All the best and keep us posted on how you're doing. :)
Tina
I am 3 years post coiling and I have the same issues. Short term memory is awful. It is all definitely worse when I get exhausted or tired. :) :) I call it, the new norm.
Hey Penny,
Sorry to hear about your issues. It’s now going on 4 years for myself & I am still figuring out the " new" me. I also have cognitive issues, specifically recall… Wait what did I say? Lol… No, seriously for me it’s recall, short term memory & processing. Some days good, some days not so good. A couple of the things I do, & if you can, I would strongly urge you to try is:
Exercise— run or bike
Vitamins-- our brains lost a lot, so gotta replenish… B12, Rutin, Neuro Optimizer, Omega 3… I Had a train wreck of event ( read my story) & I believe I’m way further along (along w my Docs) had I not done this regimen. I know the doctors don’t really involve themselves w nutrition, but you have to be your own advocate. The vitamins will only help.
In regards to your sleeping aid, I strongly recommend a vitamin called Gabba Gabba ( no not the kids show called Yo Gabba Gabba…lol). It reduces stress & you will have a sound sleep waking up refreshed & not groggy. It aids in healing of the brain. A Win win.
I hope this helps. Best of luck!
Merry Christmas & Have a Healthy & Happy New Year!
Daryl
I had 2 coilings, and I do have some impairments, my speech is slurred sometimes, and I have a Hispanic accent which makes it very hard to understand me.. I'm not sure if the impairments are from my coilings or from my bleeds.. its been 2 years for me and I still have a hard time and the strangest thing is that I just can't remember the "Lord's Prayer'' not in English nor Spanish - weird eh?
Have you a chance to speak with your doctor about these symptoms? We know everyone is different. I have the symptoms you describe.the big difference is my aneurysm has not burst nor can it be repaired successfully. It is two large for coils and in a place that can’t be reached through surgery. I wonder if we both have symptoms of disturbed vascular blood flow to the brain? Best wishes for a speedy recovery!
Hi Penny,
Executive function was the main cognitive problem. Basically I had the problem of finishing a project.
Other problems same as you regarding process info. Loss memory big time, so bad didn't remember the names of my kids. Talked too much, unable to control emotions, and a real bad one, still unable to balance body which also affects walking. Along with patience and time been able work out most of these problems. Took only natural medicine: Gingko Biloba, Kava, saint johns wort, mediation/prayer and many others to list.
Hang in there, it's my hope that you get better.
you have described the last 6 years of my life EXACTLY! Exhausting at best! but we are alive and I try to find each day what it is exactly that I am to do,since who gets two chances at life!
Penny,
It's been 7 years since my rupture, and like you, I have days that I think I've improved greatly and others that I feel like I haven't improved at all. Memory re-call (recent) seems to be the most difficult for me. It's strange, I can remember events prior to the rupture very well - not so much with what I did this morning. I get overwhelmed easily if I try to process too much at once. I feel like I have to listen extra hard to REMEMBER something. I agree that it does seem like a slow walk to recovery. But hey - we're here to recover!!! Yay!! Happy Holidays!
My aneurysm burst in May 08,I have a coil,and share your exact feelings. I got so frightened by my short term memory problems I questioned my doctor if I was developing Alzheimer’s?
he assured me NO, but oh the constant struggle and fear! Unfortunately no one around me wants to hear my concern any more,so I muddle along taking notes and praying!
Slow and steady!
Hi Penny! yes me too, 5 yrs post sah, tc
4 yr survivor here! Ruptured with SAH. I still get overwhelmed when to much is going on, its like overload, to much stimulant at once, leaves me with headaches. I still get slurred speech or drop words when I dont get enough rest. Short term memory issues, I have also lost older memories. With all that I am just grateful I am alive, that I have family who support me, and that I am able to work, I am a nurse and nursing is part of who I am! Happy Holidays all!
Hi did you have a voluntary coiling procedure or only after your aneurysm ruptured? I hope you don’t mind me asking but I have an unruptured aneurysm and trying to decide whether to have it coiled or not?
Thank you so much.
Daniela
Hi
Did you have a voluntary coiling procedure or only after