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1.  Curious as to symptoms you have.?

2.  Have the symptoms gotten better stayed the same or worsened?

3.  How many years are you since the stroke? 

4.  What type of stroke or region?

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1.  I have tingling complete right side of body. Eye, throat, ears, tongue along with spasticity with varying intensities.

 

2.  I think the spasticity has gotten a bit better.  The tingling has had no change.

 

3.  5 years now

 

4.  Brain stem on left side.

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Left side weakness/numbness, especially arm and hand. After surgery and inpatient stay rehab improved things a bit. Learned to walk again, dress, talk a little better, improve manual dexterity writing, picking up objects etc. Outpatient rehab several months to try and prep me to return to work if possible. It obviously became clear that I could no longer perform my previous tasks in a dangerous environment where others needed me to preform proficiently and keep everybody safe being part of a team, I just couldn't let them down or compromise the job so I left on long term disability after 25yrs. Since I was an anomaly having suffered extreme neurological pain in my left eye after the surgery I started 24hr round the clock opioid maintenance to manage to pain. That was the worst side effect of the surgery stroke and my body, mind, spirit hasn't yet returned to post stroke condition.

 

Early in Nov 2007 out of the blue I suffered a ruptured brain aneurysm and though the surgery was immediate to stop the bleed and repair the hemorrhage I stroked during surgery. It's been 12yrs post stroke now and each day is a blessing and a learning experience. One day at a time, and learning new ways to make my life simplifier and help others whenever possible. God has a plan, this I'm sure of. I don't get hung up on the past, or really worry too much about the future, today is really all I have, and many days I do very little but it's all good.

 

I wish you well on your stroke journey..

 

 

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1.  Partially blind, memory deficits, fatigue (cognitive and physical), emotional lability, difficulty holding a conversation (especially with multiple participants),  perceived weakness of left leg, various itches/tingles/lack of touch, mostly on my lower legs, confusion.

 

2.  Visual defects, itches/tingles/touch, leg, confusion - same

     Cognitive fatigue, emotional lability - worse

     Physical fatigue - improved

 

3.  3 1/2 years

 

4.  Vertebral artery dissection, leading to a shotgun blast of small blood clots through my brain.  Hence the funny mix of deficits.

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53 minutes ago, will2 said:

Left side weakness/numbness, especially arm and hand. After surgery and inpatient stay rehab improved things a bit. Learned to walk again, dress, talk a little better, improve manual dexterity writing, picking up objects etc. Outpatient rehab several months to try and prep me to return to work if possible. It obviously became clear that I could no longer perform my previous tasks in a dangerous environment where others needed me to preform proficiently and keep everybody safe being part of a team, I just couldn't let them down or compromise the job so I left on long term disability after 25yrs. Since I was an anomaly having suffered extreme neurological pain in my left eye after the surgery I started 24hr round the clock opioid maintenance to manage to pain. That was the worst side effect of the surgery stroke and my body, mind, spirit hasn't yet returned to post stroke condition.

 

Early in Nov 2007 out of the blue I suffered a ruptured brain aneurysm and though the surgery was immediate to stop the bleed and repair the hemorrhage I stroked during surgery. It's been 12yrs post stroke now and each day is a blessing and a learning experience. One day at a time, and learning new ways to make my life simplifier and help others whenever possible. God has a plan, this I'm sure of. I don't get hung up on the past, or really worry too much about the future, today is really all I have, and many days I do very little but it's all good.

 

I wish you well on your stroke journey..

 

 

Thanks Will2, gives great understanding.   So surprised at surgery that caused so many strokes.  I never really even heard of a stroke till I had this one.

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42 minutes ago, PaulNash said:

1.  Partially blind, memory deficits, fatigue (cognitive and physical), emotional lability, difficulty holding a conversation (especially with multiple participants),  perceived weakness of left leg, various itches/tingles/lack of touch, mostly on my lower legs, confusion.

 

2.  Visual defects, itches/tingles/touch, leg, confusion - same

     Cognitive fatigue, emotional lability - worse

     Physical fatigue - improved

 

3.  3 1/2 years

 

4.  Vertebral artery dissection, leading to a shotgun blast of small blood clots through my brain.  Hence the funny mix of deficits.

Thanks Paul.  I find all these different side effects are interesting.  I still can't believe my vision has improved.  I no longer need reading glasses to drive.  I can get away with cheater ones now at the drug store. 

I wonder at confusion is that an age thing or stroke thing.

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2 years in, left arm and leg not very usable. Able to walk with and without a cane, just not very far, left hand can hold things, like bottles to be opened, and exercise equipment, but arm and wrist are not functioning. Some fatigue, but not bad enough to keep me from activity.

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1.  Curious as to symptoms you have? Severely compromised propriaception, no practical use of left arm/hand, lack of autonomous systems like temp control in lower left leg, emotional lability, spacticity in upper arm, loss of stamina, fatigue has to be managed. "interesting" walking gait

2.  Have the symptoms gotten better stayed the same or worsened?  listed above are the ones I still have to manage.  Most things have improved vastly from initial issues, lots of rehab some surgery, occasional botox, drugs for emotional lability.  Its an ongoing process that will take me the rest of my life.  But I'm living alone, working full time, learning to run again, ...

3.  How many years are you since the stroke? 9 years

4.  What type of stroke or region? right carotid artery dysection resulting in ischemic stroke in frontal lobe. much worse than it needed to be because of delayed treatment and misdiagnosis. (a fist sized "hole" in my brain and no right carotid artery now)

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1. Dizzy, 24/7; numbness and/or tingling all over my left side, head, and in places inside my mouth; totally deaf in the left ear, substantial hearing loss in rt.; Nystagmus-both eyes; dysarthria-speech; dysphagia-swallowing; bladder unable to hold urine;lt. side paralysis, drop-foot, and lt. foot will roll to its side; spasticity and tone in different places; balance issues; generalized anxiety disorder.

 2. Dizziness and tingling went away except that I still get dizzy spells that last a couple of seconds 3x a wk or so. I still have numbness, but it seems less intense. Deafness-no change. Nystagmus still in lt eye, but not in rt. I still have both dysarthria and dysphagia.  While both are much-improved, both still pose daily challenges to me; I trained my bladder 13 yrs ago, and I haven't had to go back to wearing pull-ups, but I don't think that I can hold urine as long as I could BS. No change in my foot rolling over, spasticity, or tone. And the biggie is that I have been in a wheelchair for the last 12 1/2 years because of balance and other issues 

 

3. 12 1/2

4 Hemorrhagic, slightly to rt. in Pons (brainstem).

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1. When I had my stroke/symptoms: Serious Central Vertigo 24/7 for many months. Daily nausea, vomiting. Nystagmus (both eyes). Severe sensory overload. Severe PBA. Severe Post Stroke Fatigue (slept 80% of the time, only up to use a potty chair and to try to eat something at first then after a couple of months to the bathroom and up about 5 minutes at a time a few times a day. Aphasia. Severe lasting headache daily. Severe defecit in proprioception. Ataxia, dysmetria of movement, thought, emotions, everything. Unable to stand or sit upright or hold my balance. Movements were very slow, fingers didn't grasp right, intentional tremor, my voice became a whisper, wrote very small and could only do for a short time and it was chicken scratch, speech slurred, couldn't follow verbal or written directions very well at all (got them out of order or forgot them or left some out or just didn't see it). Lots of Cognitive issues, defecits in executive function, trouble with metalinguistics, visual spatial issues, trouble with mood regulation, issues with working memory, everything in my world moved even if it was stationary (at least that is what my brain decided). Cerebellar Cognitive Affectice Syndrome. Cerebellar Stroke Syndrome. Psychiatric issues. Severe anxiety with panic disorder. OMG too much...my brain hurts. 

2. Most defecits and symptoms have improved a lot especially the 1st 6 months. The nystagmus went away. I was not diagnosed during my acute stroke even though I was rushed to the hospital by ambulance (2 months BEFORE diagnosis and any treatment or therapy OT, PT and ST.). I had a very rare stroke. Today on most days I can walk, talk, use all 4 limbs, drive and maybe just looking at me you might never know. Every defecit except Nystagmus is still there but I have learned to compensate many. My defecits change daily or even several times daily. I have good days, bad days. Anything that stresses or tires me will increase my defecits and their severity. I still have a lot of Psychiatric issues and see my Psychiatrist every other month and have Cognitive Behavior Therapy weekly. 

3. A little over 4 years ago... 7/5/15.

4. Massive Bilateral Cerebellar Embolic Infarction in the PICA region. (Posterior Inferior Cerebellar Artery). 

 

Mark I'm not sure if this makes sense and I'm too tired to reread it because I wrote a book lol. 🤓 Say hello to my little brain. 😒

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This was a good topic. I was brief as possible in my reply but to read many other replies now, I feel I better know those that have replied. Having read a more detailed list from your symptoms I share many bits and pieces from parts of all of you. I'm glad to be here and fit right in. More importantly, understanding of what many here share in common. Stroke symptoms are infinitely complex as are the individual effects from different parts of the brain. Not static either, changing from day to day at times it seems. 

 

Most days I'm quiet, though a lot going on inside my head. And it's good to be here among others that know this all too well..

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The main thing that has become worse for me is incontinence. 

Every thing else is pretty stable, or very slow deterioration. 

 

Incontinence is terrible. 

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On 9/17/2019 at 9:46 PM, heathber said:

1.  Curious as to symptoms you have? Severely compromised propriaception, no practical use of left arm/hand, lack of autonomous systems like temp control in lower left leg, emotional lability, spacticity in upper arm, loss of stamina, fatigue has to be managed. "interesting" walking gait

2.  Have the symptoms gotten better stayed the same or worsened?  listed above are the ones I still have to manage.  Most things have improved vastly from initial issues, lots of rehab some surgery, occasional botox, drugs for emotional lability.  Its an ongoing process that will take me the rest of my life.  But I'm living alone, working full time, learning to run again, ...

3.  How many years are you since the stroke? 9 years

4.  What type of stroke or region? right carotid artery dysection resulting in ischemic stroke in frontal lobe. much worse than it needed to be because of delayed treatment and misdiagnosis. (a fist sized "hole" in my brain and no right carotid artery now)

Heather, I thought about this several times last night, that is remarkable! I remember having to pass a small obstacle course prior to my return to work and I had to follow my PT through the course. This was certainly one of my biggest challenges as I had just learned to walk without any aids a week or so before and I was still feeling kinda lopsided when I walked. Luckily my PT was leading in front of me when he picked the pace up to a slow trot, falling behind and feeling like each step was like one of those magnificent Clydesdale horses with those immense hooves trotting along and feet plopping on the ground, I managed to stay upright for a small distance of 3-4' thru a sandbox. I made it thru and not a second to spare as my balance was starting to lean to the outside, so I stopped and he turned around a second or two later and said good!

 

And that was my only experience with running post stroke. Heather, you are to be commended, I know walking is difficult as is for me but running isn't even in my mind yet, maybe some day, but that day will be a ways off. I say "well done!"

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Learning to run again...

It went like this, I sprayed a wasp nest outside and they were of course angry and wanted to take it out on me. I tried to run and realized I completely lacked any form of coordination for quick movement. I did however have the ability to fall and availed my self of it since I was next to the pool. Use the tools you've got.

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1.  Curious as to symptoms you have.? Nystagmus in both eyes, dizziness, right side weakness, sensory sensitivities, palsy in vocal chords,  palatal Myoclonus ( Palatal myoclonus is a rapid spasm of the palatal (roof of the mouth) muscles, which results in clicking or popping in the ear. The movements of the palate vary in rate between 40 and 200 beats per minute.) and <------ that is rare. YAY me 

 

2.  Have the symptoms gotten better stayed the same or worsened?

Gotten better because I've learned to cope better. Over all they've stayed the same

 

3.  How many years are you since the stroke? 

 11 in February

 

4.  What type of stroke or region?

Vertebral Dissection causing a bleed in left hemisphere then clots went into Post circular system ( brain stem, cerebellum, etc)   

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12 hours ago, GreenQueen said:

The main thing that has become worse for me is incontinence. 

Every thing else is pretty stable, or very slow deterioration. 

 

Incontinence is terrible. 

agreed. When I have to go.. that's it,, it's going to happen.. and all throughout the day

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7 hours ago, scottm said:

I did however have the ability to fall and availed my self of it since I was next to the pool. Use the tools you've got.

Good use of resources, so long as you have enough coordination not to drown!  My running is definitely not real yet, and I've been working on it for about 4 years so far. it's actually made a huge difference to my balance and stamina, and ordinary walking speed.  Worth it even if I never actually get to full flight phase running, But I'm stubborn and not giving up on it yet.

Obstacle courses are fun I do them in the gym quite a lot, but I have to remember the sequence as my trainer is mean and will only show me once and then expect me to do it. He does stand next to me ready to catch though. and if I stuff up he makes me go back to the start and do the whole thing again.

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