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    Old 07-13-2014, 08:32 AM   #1
    Cenjen's Avatar
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    Stroke damage

    My mother had a massive stroke. Blood clot on the left side of her brain, 70% damage. It's been 3 days. There is some swelling, which we were told would occur. The neurologist is telling us now that she won't recover. She's right handed, so was told she's left brain dominant. Therefore, she has lost what makes her who she is. That the best case scenario would essentially be her being a complete invalid and that we need to sign a DNR. The neurologist gave us not one shred of hope. She also told me that if I would have had a stroke of this size, I would be dead because I'm young (39). My mom's 63 so her brain has shrunk and there's a little room for swelling. We have never been under the impression that mom would be the same again. However, the day before talking to this neurologist, a RN caseworker talked to me about what rehab hospital I wanted her to go to. Said she would be transferred there later this week and have to stay 3-4 weeks. Has anyone else had an experience like this, and if so, what was the outcome?

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    Old 07-31-2014, 07:04 PM   #2
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    Re: Stroke damage

    Hi Cenjen
    I just joined today so thats the reason for a late post. I hope you get this. I'll give you a little background.. I'm the caregiver for my brother who had a massive stroke in 2009. They told us much the same thing as you were told. We were also told that he would be "as good as he ever will be" by six months after the stroke. BOY WERE THEY WRONG.

    My brother had what they call "neglect" which means to him the whole left side of his body no longer existed. He couldn't look to his left, he couldn't sit up and had to be propped with pillows. He had a feeding tube and was in very bad shape with failing kidneys, the start of congestive heart failure, a massive urinary tract infection and pnuemonia... The doctor basically said he would be a vegetable and wanted me to sign a dnr for him. I refused and told them to resucitate him if necessary.

    I took him home and gave him real food after a month with the feeding tube. He had no swallowing problems as long as he was sitting upright in the hospital bed. He started gaining weight and strength. Two months later we had physical therapy in the home, twice a week, just doing range of motion exercises and strenthening.

    He was always propped with pillows because without them he would just lean all the way to the bedrail. One day I was turning him in bed and ready to prop the pillows behind him when the therapist rang the doorbell. So I left him unpropped and answered the door. Thats the last time I ever propped him because he had to use his own sense of balance without the pillows. And he gradually regained his balance.

    A full 2 years after his stroke, he took his first steps. Its almost 5 years since his stroke and he is now moving his left arm and fingers as well. He will never be the same, but he is most certainly NOT the basket case the doctor made him out to be.

    And the reason for that is I did not believe the doctor, nor would I let my brother believe it. I had taken care of stroke patients for years and I knew what they are capable of. I started while he was still in ICU... I put my hand on his left hand and moved each finger at a time, telling him "this is your thumb, this is what it feels like to move your thumb"... I did that to his left arm and left leg every day so he could remember what it felt like to move and to help reconnect his brain cells to his muscle memory.

    It has been a long hard road, but if you don't give up, then your mother will try very hard. She needs to be in a stroke rehab center for a few weeks and get home health care when she comes home., esp. physical therapy. As long as the doctor orders it, your Mom's medicare or health insurance will likely cover it. I hope this helps

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    Old 08-06-2014, 04:36 PM   #3
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    Re: Stroke damage


    I am not a regular poster here anymore and I missed your original post. But I wanted to respond anyway in the hope that my response will help you or give you a measure of comfort – even in a small way.

    Here's what I think: Every stroke is different and every patient reacts differently. I had two left-side ischemic strokes in May 2010. Every doctor who saw me and my family after my strokes had a different take on what I might expect down the road. Looking back, I realize that none of them really knew what direction my recovery would take. I've had some major milestones and also some unexpected results (dropped foot, double vision) that have manifested over time.

    My feeling on your situation: Stroke recovery can't be measured in hours or days but more like weeks and months. Your mom needs time and love to let her brain heal and only then she and your family will start to get a sense of what life post-stroke will look like.

    It will be a long and difficult road, yes. Right now all you can do is start the journey.

    My heart and prayers are with you, your family and, of course, your mother.

    Please check back and let us know how she-and you!- are making out.


    Old 08-14-2014, 04:55 AM   #4
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    Re: Stroke damage

    Thank you both for your replies. It has been over a month now since my mom's stroke. She is doing much better than the doctors first told us she would. I really wish they would've just said "we don't know", because that seems to be the theme with stroke recovery.
    My mom is at an in patient rehab facility. She initially had right side neglect. Although that side is very weak still, she is able to use it. She is actually walking with a walker and minimal health. Unfortunately, she has developed 5 blood clots in her lungs so therapy has had to be scaled back tremendously for awhile. Her feeding tube hit plugged and, we found out during surgery to replace it, that it had been pulled part way out too.
    She is at a very good facility, however, we have still had problems with her care. Such as, her feeding tube site had not been cleaned for a week and she developed MRSA. Also, her leg cuffs which help prevent clots have not been on consistently. And many other things which could be avoided if the nurses would just read the doctors orders. It's very frustrating.
    Thank you for your words and support. I know this will be a long journey, but it's clear that my mom is a fighter.

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