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Susan - New here and so happy to have found this forum!


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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!

Edited by Tina
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Hi Susan & welcome to BTG

I have to say a bleed is still a bleed & should be treated as a major event. Blood that is not supposed to be in your brain will cause damage wherever it touches so no wonder you still feel all at sixes and sevens at three months.

Fatigue is so common but most hospitals/neuros seem to say that is only for a few months however most of us will say fatigue remains wherever down the line we are, with that fatigue comes headaches, slurred or slow stuttering speech & dizziness which then affects your walking/gait.

I didn't have a bleed but I did have surgery & problems caused by vasospasms afterwards (like mini strokes where the blood vessels dilate). Almost everyone here will tell you you are normal & its only to be expected.

Lots of water should help with the headaches & rest when your brain tells you you need to. You need to be cautious about your future health but not scared to live.

I so wanted to send you a big hug when I read your post so here's a virtual one ((()))

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Hi Susan,

I suffered the same in April and was told I would have 100% recovery too. I am a little over 5 mos and slowly getting better. One thing I have learned is recovery is your own and takes time. Some good days and some not so good.

I thought a magical day would come and all would be wonderful. Nope. Baby steps are good.

I don't think the doctors know what to tell you so off you go on your own.

I am still patiently waiting for this 100% recovery. All that emotional distress I can definitely associate with. I still get dizzy and cry at the drop of a hat. When I am tired my brain shuts down.

But, it is slowly getting better.

Iola

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Warm welcome Susan, I'm 19 months on and still waiting for the elusive 100% recovery!

As others have said, take things slowly and do not expect too much of yourself. We each have to find our own pace of recovery, think of it as a jopurney of discovery and enjoy each new milestone.

Take care,

Wem

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Hi Susan,

Welcome to BTG

Try singing to see if it helps with words, I always say "whats her name said etc".

My Sisters used to come hospital and sing to me while I was out of it.

We will get there so never stress it isn't good for us, so promise you will not stress ??

Good luck on recovery

WinB143 xx xx

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I'm crying like a baby!!! I had begun feeling so guilty and so depressed because the old me is gone. Just knowing you are all there and are going through the same things is beyond a comfort to me!!!

I am afraid to be alone some days becuase of the forgetfulness. Today I left an iron on my bed plugged in and started a small fire in the bed. I have left the burners on after I was done cooking more than once. The day after I came home from the rehab I had a TIA (mini stroke) probably a vasospasm as my blood pressure spiked when I recieved some devastating news about my 5 year old son. The hospital assured me there was no bleeding just a small stroke. Recovery has been difficult emotionally as I don't have outward signs of illness or disability so everyone expects me to go back to being the strong one with the Type A personality who does everything for everyone. It's been hard but I've actually had to distance myself from my own mother because she just didn't get it and was causing too much stress.

The ICU doctors teased me when I finally became conscience and said you came in with a 160 IQ and your leaving with a 135 (still well above average.) I was the joke of the ICU because apparently even unconscience I talk with big words I learned from 12 years of catholic school! They called me Chatty Kathy! :lol:

I try to pretend to be alright for my son's sake. He was the one home with me when it happened and had to witness me pass out. My little man opened the front door for the police and brought upstairs to find me on the floor. I called 911 when I heard a loud POP between my ears and felt the pain starting in the back of my head. I don't remember what I said something to the effect of "Help! Brain! Pain! Pop!"

I'm sorry if I'm babbling but it feels so good to talk to people who really truly understand!!!! :wink:

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Yep been there done all that it'll get better though...

What a good little boy how old is he? yes be brave for him but sometimes fooling people isn't the answer (obviously depending on how old they are of course)

Your not babbling hun its great when people know exactly how you feel..

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completely get it. that feeling of difference, changes in yourself and your abilities. everything is slower. a black and white film! I described it to someone that it felt like my filing cabinet had been emptied out on the floor and hurriedly put back and not everything is where it once was and I fear some may have been chucked in the bin and lost forever!!

be Kind to yourself. there is no rushing this. persuade the type A within you that meeting your goals this time requires stealth and slowness, patience and more patience. get really good at that :)

the forgetfullness is really hard. I write things down and find I have remembered them wrong so put dates in the wrong place. only this weekend I cried because I just completely forgot something I had arranged and I was so disappointed. thing is it will get better, in tiny increments, sometimes you dont notice, but it will.

on the leaving electrical things on. honestly I just didnt use them early on, I couldnt trust myself to remember to switch them off. That said I had a wild haircut so never bothered with anything other than quick blow dry. I still leave doors open, pick up the wrong keys, but what I did was stick a post it note by the font door or on my mirror with one word just reminding myself. it did help.

tiredness, stress, worry, these are things that our brains do not cope well with now. As the parent to a 7 and 10 year old I know that its never easy to switch of the parenting mode but just take it all down a notch, actually take it way down, he wont mind , in fact you may have some fun in that pace.

youre doing well. its early days

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