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I thought this never would happen to a 21 year old

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My 21 y/o recently suffered from annurism/stroke. It’s been a very sad week for us. Last we were told she complained about headaches late Saturday evening then went to bed. No one heard from her all day Sunday. Being in college she had a roommate that was not helpful to those reaching out to her in hopes of contacting my daughter Sunday. Her roommate insisted my daughter was ok and just in bed laying down. Monday came around and my daughter’s boyfriend mom suggested he do a welfare check considering they were a few states away. This was about Monday afternoon. A cop decided she met the criteria in possible self harm and had her go for a psychiatric evaluation. Big mistake! My daughter sat there another 12 hours with no care. Monday late evening the psychiatrist decides my daughter is not progressing and sends her to an actual Emergency Room. We are now at 48 hours with no proper care. We drove 6 hours and were told she has a brain bleed that is life threatening and will be flown to UCSF for emergency surgery. I was devastated thinking my daughter would not make it. It’s been a week now and she is finally speaking again and slowly walking. The experts say it may take up to a year to regain all her abilities and her youth factor is on her side. Life is crazy, instead of planning her graduation I’ll be planning her recovery. I don’t know what to expect and would like suggestions if anyone has any. 

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I'm terribly sorry that she had to wait that long before she was taking to the actual ER. I'm thankful that she finally had the surgery and is starting to talk again.  This is going to be a slow journey. She will be upset that she can't do what she did before , at first.

The doctor was correct when he said that her youth is on her side.

I'm glad you found our caregiver site  and we have a caregiver chat on Tuesday evenings from 8Pm (est) - 9 pm (est) http://www.strokechat.net/

We also have stroke survivor chats every afternoon from 3-4pm( est) and Monday, Wednesday, Fridays 8pm-9pm (est) http://www.strokechat.net/

 You are more than welcome to come to hear from survivors and when she is able to even come into chat to 'listen' 

 

I had my stroke at 34 and many others had a stroke at a young age and from many different causes.  Hope to see you there and it's a walk not a race.

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So sorry to hear of this. Strokes are sneaky, particularly for the many people who never expect to have one. My husband was like that... one Saturday morning in November of 2012 about a month before his 60th birthday he complained of what turned out to be a textbook case of a transient ischemic attack (TIA) -- temporary loss of vision in one eye, slurred speech, loss of balance. He retreated to bed, just like your daughter did, and once the TIA symptoms receded, he said he wanted to go to a walk-in clinic because he was still feeling a bit off. We went to the walk-in clinic and had to wait about 45 minutes to be seen. A blood pressure check showed that his numbers were through the roof. "Go to the nearest emergency room," the staffer told us. "And they will want to admit you" So, that's what we did, and that's what the ER did -- and promptly. By the following Monday, he had been planned for discharge home and I went to pick him up. But when I got to his room, it was empty except for an awful lot of medical litter all over the floor, which indicated that he'd had to be taken out in a hurry. The nurses' station told me that the doctor would be there to talk to me. Long story short, spouse survived with cognitive functions intact -- a rare good thing thanks to aggressive surgery done by a premier vascular surgeon who just HAPPENED to be available that day. Things could have gone so differently without that surgeon. But spouse does have lasting motor deficits, including left-side neglect (it's the opposite of phantom limb... there is a loss of sensory awareness of the affected side of the body). As you've said, your daughter's youth works in her favor. If the brain bleed was caused by high blood pressure, here's a bit of simple advice from experience. She should monitor her blood pressure and establish regular communication with a primary care doctor. Inexpensive home monitoring kits make this easy and accessible on a regular basis without having to make an appointment -- just call the PCP office if the numbers start rising outside of normal range consistently over a time period. Blood pressure readings can vary by time of day and when you had coffee, to give one example . If blood pressure medication is indicated as treatment, blood pressure readings should be taken at least an hour after taking the meds. There are other considerations we had but may not be relevant to her case. The reason I went on so long with this post is that there are ways to address the anxiety of being held hostage to a life-changing medical condition that sneaked up suddenly. There are ways to not let it 'get' you. My best to you and your daughter.

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One more thing: If your daughter's ability to read all the way from left to right is compromised as a result of this stroke, that should be picked up by evaluative tests. In our case, my spouse would consistently miss the first few words on the left of every line of set type in a book (right side neglect would be the opposite). However, the evaluative tests for this problem are a crashing bore to anyone with an active mind because they're just little bits of disjointed information, kind of like those spelling tests we got in grade school.  What I did with my spouse was to sit together and take turns reading one of my favorite books. Instead of having to fill answers in to those single-sentence bits, my spouse was motivated to go back and pick up the words he'd missed when I prompted him. If the story made sense, he knew he'd 'gotten' it and he could string together all the elements of the story -- not just read back some words. 

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Christina, Welcome to the forum.  That was a brilliant plan you devised to assist your husband with his reading. I've found that with stroke recovery there are many minor adaptations one has to devise to just exist. It is essential that one passes them on to other readers.

Deigh

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Your story of what happened to your daughter made me feel very angry. I cannot believe or understand why no one thought of sending

her to the hospital sooner.

  But that's not the important thing right now. The important thing is your daughter's care needs. It sounds like she's still in the hospital. When she's medically stable she may be sent to in-patient rehab. I know you want her home, and you're probably feeling disappointed she's not coming directly home from the hospital, but she needs as much therapy as she can get. In-pt may send her home with a prescription for out-pt. therapy.

Regardless of your income, you may want to check into SSI for her, as it's about all that you can do for her now. Stroke recovery can be very expensive. My first power chair was $15,000.00.  My Medicare and Secondary paid for it, but we had to pay co-pay. Just one of my prescriptions was $65.00 per month. And many other expenses that you can't possibly anticipate. When she finishes in-pt., you will have a better idea of what she needs.

.  Post any concern here. We'll try to help. Chances are that for any concern you may have that someone here has had experience with it. GOOD LUCK, Becky

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I'm sorry to hear of your daughter's condition and will certainly add her in my prayer column. The time line you provided and the sequence of events are tragic. Having suffered a brain aneurysm bleed and subsequent stroke during surgery to repair the bleed I can empathize with you. Though my event occurred at the age of 55 yrs old, with a long productive dose of both in-patient and out-patient rehab after about a year I was able to return to work but due to some deficits that caused me a bit of concern working in a hazardous electrical environment, I thought it best to go out on long term disability and eventually just retired. I'd imagine your daughter being young as she is, working hard and staying with a good rehab program will get her into good shape. I had to relearn to walk, dress, and all the other daily normal functions. So she has a very good chance of getting back a lot. 

 

I just had to learn what needed attention and worked thru rehab to meet those goals. I've accepted that just due to the bleed and damage that was repaired with coil embolization in my left vertebral artery, certain things haven't gone away, like the left side weakness and numbness. There are other small nagging issues but a lot might be attributed to my current age of 67yrs and normal aging. She has so much going for her being young as she is. Often I'm told many strokers regain nearly all their normal functioning. Additionally, there are many here that still work hard on keeping strong and fit to stay healthy. 

 

It's good albeit kinda sad that she had to get to a point that she received the necessary treatment that potentially saved her life. Many times I reflect on some of the boondoggles that were made in my diagnosis and treatment if catching it sooner could have changed things damage wise during the bleed. When they did finally make the aneurysm bleed connection, I was immediately stabilized and air lifted to get to a proper ER for surgery. Yea, there were some mistakes made but ultimately those skilled doctors and specialists saved my life, for that I'll always be eternally thankful.

 

I will mention her in prayer tonight and wish you all well in this Holiday Season, things will improve. Please keep us in the loop.

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Many blessings to your daughter, you, and family. Such a terrible time of year too. I have met so many survivors and their strokes were around the holidays as well... I have always wondered about that. I feel her Dr's are very right... her youth is the awesome factor. The younger the brain the more plastic our brains are ( i.e. plasticity).  Seems like she has a great support team as well... Mom this includes you. 🙂 It's true, progress will be amazing and then slow way down but it doesn't stop (always remember that...always something to work on). It may take a while during her recovery journey but it will get easier with time. Many prayers and may your family see all the the little things in a world so busy. Weird thought I know... but it is exactly what I learned from my stroke experience. All I ever needed was to slow down and take them in. Happy Holidays!

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I am so sorry about your daughter to suffer stroke at such an young age, but doctors are right, she has her young age & supportive family  by her side, she will do great recovery with that two factors  in itself. post stroke life is not good or bad its just different. one can still achieve all their hopes & dreams with good attitude & that will lcome with good family support & support group like these.

 

I stroked at age 34 which left me paralyzed on my left side & having young family at home  & also retiremed from the job I loved. I never thought I would find joy in living again, but having just 7 year old son at our home, I persisted & didn't give up, having very supportive family & finding these online stroke support group was my savior, It literally pulled me off the ledge I was ready to jump off from. I found blogging & chatting with other survivors very therapeutic for my soul,  &  I can truly say my stroke brought lot of good things in my life. It woke me up from my sleepwalking through life. I truly view life with lot of meaning. today our son decided to pursue degree in medical field.  my post stroke ourney was not easy but thanks to support of my family, life is wonderful again & today I am proud 50 year old survivor who volunteers at drop pf the hat everywhere, when kido was little it was in his school, then redcross, hospital & now on this site.

 

As a parent just be very sportive of your daughter & tell her to keep her head above water & keep on breathing even when it feels like drowning, life is wonderful & she survived for a reason .

 

we do have scheduled chats every day from 3-4 EST in survivor room #2  & 8-9 EST on M,W,F. actually I do host chats on wednesday evening chat in survivor room #2) & friday evening chat which is usually in coffeeshop, where you can meet others & gain lot of insights on how to deal with life after stroke.

 

hope to see you & your daughter around there soon too.

 

Asha (now happy 50 year old survivor)

 

 

 

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On 12/25/2019 at 5:13 AM, coneill said:

One more thing: If your daughter's ability to read all the way from left to right is compromised as a result of this stroke, that should be picked up by evaluative tests. In our case, my spouse would consistently miss the first few words on the left of every line of set type in a book (right side neglect would be the opposite). However, the evaluative tests for this problem are a crashing bore to anyone with an active mind because they're just little bits of disjointed information, kind of like those spelling tests we got in grade school.  What I did with my spouse was to sit together and take turns reading one of my favorite books. Instead of having to fill answers in to those single-sentence bits, my spouse was motivated to go back and pick up the words he'd missed when I prompted him. If the story made sense, he knew he'd 'gotten' it and he could string together all the elements of the story -- not just read back some words. 

I had a variant of this when I first stroked too. It wasn't left neglect, or not completely. It was my right to left scanning. I couldn't follow the line back to the left side of the page without losing my place so I'd skip whole lines of text when reading. My OT got me to cover the page with a sheet of paper so only the line I was reading was visible then I had to move the paper down when it was time for a new line. It only took a couple of weeks of this to retrain my eyes/brain to scan properly.

Remember whatever the deficits she is left with after all this, most things can be relearnt or you create workarounds.

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