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Hello All.

My name is Steve. I had a right-side ischemic stroke in July 2011 at the age of 42, thanks to a clot in my carotid artery. I was in the Neuro ICU for a week and in the step-down Neuro unit at UW Hospital in Madison, WI, a stroke center of excellence. Luckily I live 15 minutes from the hospital and received care quickly. I experienced balance issues and left-side weakness as a result of my stroke. 

 

The day before I was hospitalized I experienced blurry vision and a splitting headache at work. Thinking it might be a migraine, I left for home to grab an aspirin, take a nap and rest. Upon waking I did not feel better, although my vision improved. I picked up my daughter at summer day camp and went swimming with her. Powered through dinner and then early to bed.

 

Awoke feeling crummy the next morning. Made my daughter breakfast and then started to fold laundry. I could not figure out how to fold a towel. My wife at the time then called to me and I was not responsive (nothing new, LOL). She came closer and was able to catch my attention. As I turned to her my left side went out and I collapsed to the floor.

 

I was able to begin driving again after 4-6 weeks, return to work part-time after 8 weeks, and return full-time at 16 weeks, although my return to work full-time ended that first day with a trip back to the hospital in an ambulance. I was deemed fine after some observation and was allowed to return back to work a week later. My employer was fantastic in reincorporating me to the workplace, and I was back to full productivity relatively quickly. Today, I own my own business. I volunteer speaking to Stroke survivors at UW Hospital, and am active in the local AHA/ASA chapter.

 

My stroke was a total surprise. No genetic issues, no prior family history, no issues with BP/cholesterol/heart, not a smoker nor big drinker nor drug user.

 

I'd tell other new Survivors that recovery is possible. Its going to take time; you're running a marathon to recover; its not a sprint. Be patient with yourself and caregivers. Just focus on what you can do, and don't get hung up on what you can't do. And take time to journal what you are able to do day-to-day. Its something you can go back to to assess your progress and provide encouragement when you're feeling down.

 

Happy to answer any questions you may have. Looking forward to the conversation out here. Cheers!

 

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Hi Steve, my apologies, I must have missed your posts. I'm glad I saw this one and wish to welcome you. This support site has been a really great place for me. Validation, friendship, health information, support, a blog you can start, chat (scheduled), a picture gallery, and definitely a place to share, vent, and give support as well as get support. My name is Tracy. I had a bilateral cerebellar stroke in the PICA region July 5, 2015. I'm so glad to hear you have had a really positive recovery and transition back to working and getting back to life. It's an inspiration. 🙂

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Hi, Steve. Welcome to Strokenet. Sounds like you've had a remarkable recovery. And you're so positive that I'm really glad you volunteer your time to talk to talk to other survivors.  In the early days after my stroke,   I needed all of the positivity that I could get, and I bet other survivors get a lot from your messages.    Becky

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Hey Steve,

Thank you for sharing your story. 

Looking forward to sharing the journey with you. 

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Hello Steve, my name is Jan, Your stroke sounds a lot like mine! I had a clot in the right carotid artery! I have weakness on the left side,unfortunately I haven't recovered as well ad you. I want to walk so much, and be able to do just everyday normal things. It gives me hope to hear from others on the same journey, and having such good success! Glad to have you on stroke net, and I look forward to hearing about your journey! If you have any advice for us who are not as far along, I would welcome any suggestions you might have! It's so nice meeting you, and I'm very happy for your success!!

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Good morning Jan.

Sorry to hear that you continue to experience challenges that you have yet to overcome. I know how frustrating that can be. I have completely lost my eyesight in my right eye with zero chance of recovery- the optic nerve is dead.

 

Not sure I can give advice without knowing what you want to learn/understand. But reach out to me if you have specific questions and I'll do my best to offer my perspective. Otherwise my only advice at this point is to....Keep working hard to recover. Our brains and bodies have an amazing capacity to heal and cope. And there are so many near and dear to us who want us to be there for them. Keep smiling! Have a terrific Thanksgiving.

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Hi Steve, 

I am so glad you have regained as much as you have and had been able to do so soon after your stroke. I, too, have dizziness so I can relate to your struggles, if any. I'm almost 10 years out and , like you, am very lucky to have recovered as I have. We all have regained, some more than others, but I think we all here are in agreement that attitude is a huge part of recovery and we all get that, in our own time.  We all have that fire in our hearts to never give up .

 

Quick about me: 

Had a stroke from a chiropractic adjustment. The movement of the adjustment dissected my artery causing a bleed to the left side of brain. Then clots, that form naturally, traveled to my brain stem. All that being said, after 6 1/2 hrs. of surgery , to remove the clots to avoid a cataclysmic stroke,  a stent and a lot of therapy and all that jazz, looking at me you'd never know I had a stroke. BUT if you were to look inside of my head how life is, it's a different story. I have issues I deal with every day and that make life challenging but keeping a good attitude and wonderful support from this board, as well as elsewhere, I continue to amaze myself with how amazing life truly is. 

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Hi Steve

 

Nice to meet you.  I ha a similar trip, just more recent.  Vertebral artery disection which dumped clots into my brain (shotgun effect).  Went to ER with partial blindness which disappeared while I was there, diagnosed as migraine, sent home with a warning to call an ambulance if *anything* felt funny.  Two days later had some left-leg weakness, wife called an ambulance.  I was completely incoherent by the time we got to hospital.  I'm generally OK now other than losing one quadrant of my vision (both eyes) and have a *very* erratic memory.

 

This site has been a real life-saver, gives me a community that I can relate to and who understand what I am going through.  Also gives me a chance to try to help others.

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On ‎11‎/‎24‎/‎2018 at 6:03 AM, PaulNash said:

Hi Steve

 

Nice to meet you.  I ha a similar trip, just more recent.  Vertebral artery disection which dumped clots into my brain (shotgun effect).  Went to ER with partial blindness which disappeared while I was there, diagnosed as migraine, sent home with a warning to call an ambulance if *anything* felt funny.  Two days later had some left-leg weakness, wife called an ambulance.  I was completely incoherent by the time we got to hospital.  I'm generally OK now other than losing one quadrant of my vision (both eyes) and have a *very* erratic memory.

 

This site has been a real life-saver, gives me a community that I can relate to and who understand what I am going through.  Also gives me a chance to try to help others.

Every time I read your story I get so angry when I get to the part " sent home with a warning to call an ambulance if *anything* felt funny."   I'm glad you're still here and I know it's not always the fault of the physicians BUT I wish more, which they are now, would realize that strokes come in all ages and ways. :hug:

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Hey Kelli

 

Every time I read your story I get so angry when I get to the part " sent home with a warning to call an ambulance if *anything* felt funny." 

 

They thought that it might be a stroke.  I *think* that they sent me for a scan and could not find anything (vertebral artery), but not sure (I was pretty out of it).  The ER doc was about to call (still had my wife's phone number in her pocket) when I was admitted for the second time.  It took another day or two to find the dissection.

 

I am *beep* that they did not find the dissection.  I am *beep* that it ever happened.  But what has happened has happened.  I try to move along; some days are easy, some days are impossible.

 

But I guess that that applies to all of us -- some days are easy and some days are impossible.  And the upside is that I got to meet a whole bunch of really really nice people.  So maybe it was worth it 🙂

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Paul, Just curious. Did you go to the hospital in an ambulance? Did you or your wife choose to go to the ER you were taken to? Or were you taken there at random? Did the EMTs in the ambulance think you were having a stroke when you were en route to the hospital?

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I always feel super frustration when hearing of someone "overlooked". Having a cerebellar stroke put me in only 10% of stroke survivors. Having a bilateral cerebellar stroke at once put me in less than 2% of stroke survivors. It is extremely rare. It also does not fall under the F.A.S.T. acronym most often used to teach others how to recognize stroke. It also is the most misdiagnosed stroke due to CT scans are way less likely to catch it until about 5 days later. MRI will catch it but CT is still for the most part the 1st option to diagnose a stroke. The bones enclosing the cerebellum are denser than other areas of the brain. It was 2.5 months before a Neurologist diagnosed me with MRI. 3 years ago I was incoherent...eventually angry...turned down by every lawyer when I felt I had to do something. It was a certified stroke hospital. One of the best in the Nashville area. I was rushed by ambulance. I made a comment to my daughter who was by my side as I was on the floor having the acute stroke. I told her it was serious like a stroke or a heart attack which she relayed to 911. The ER doctors told my family that I did not have a stroke. Cerebellar Stroke has a high death rate because it is not diagnosed often. This is not an immediate concern but at about 5 days the swelling in the brain has a big chance of crushing the brainstem. I was extremely lucky. I feel extremely blessed to be here. I was told by a Neurologist during a seminar I attended where I have my stroke support meetings that ASA would probably not be changing the acronym to include my stroke. This means people will die. It is not acceptable to me. My passion and concern I had at this meeting stuck with someone who runs my group. She is a nurse in our local hospital stroke department. She went to the head of Neurology and pleaded my case. She told me in person 2 months ago that the department listened, requested new training for ER dept. as well as neurology from the hospital. That day she told me that the hospital had listened and acted...they revamped training and policy and sent notice to the entire hospital staff via email as well as new training modules to include the symptoms of cerebellar stroke. She said "The hospital is sending it out tomorrow." I was shocked. I felt like I made a difference. My plan is to help extend this concept to other hospitals and praying a domino effect will happen. I am so sorry you went through anything short of a diagnosis. I know mistakes happen. But people die when things are overlooked. My question to that Neurologist was "What about people like me? Is my life less important than another's?". He didn't know what to say. I'm so glad you are here. 🙂

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14 hours ago, BadgerSteve said:

Paul, Just curious. Did you go to the hospital in an ambulance? Did you or your wife choose to go to the ER you were taken to? Or were you taken there at random? Did the EMTs in the ambulance think you were having a stroke when you were en route to the hospital?

these are all good questions but, in hindsight, we can almost always look back and see things we could have done differently. We do what we think, at that moment, are the right choices. I believe at least. 

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Thanks Kelli. I do not disagree. And I offer no criticism in hindsight. Just curious because I am considering promoting legislation to require training of EMTs and dispatchers to what the different levels of stroke care that exist at local hospitals, so that those seemingly suffering a stroke can get to a hospital that is better equipped to diagnose and treat a stroke, reducing the risk of misdiagnosis or adding to time for treatment that can take someone who would otherwise survive with few deficits to someone who has to struggle with many deficits unnecessarily. I hear far too many of these stories and I believe with the proper knowledge these types of situations can be avoided.

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Hi Steve

 

First of all, I do not think that there were are specific failings of the system in my case.  As far as I can tell, everyone acted rationally and correctly, given what they knew. 

 

So here is how it unfolded:

 

I took my son clothes-shopping early in the new year.  Shopping centre was over-heated, it was snowing outside.  Came outside, suddenly felt dizzy as I got to the car.  Sat in the car for a few minutes, dizziness passed, felt OK.  Drove home; on the way noticed that a stop-sign was missing at an intersection I drive through regularly.  Turned to see whether it had been knocked over by a car, and there it was, in its usual place,  Turned by head back, it was missing. I had lost my right half of my vision (both eyes).  Thought nothing special of it, bit mentioned it to my wife when we got home.

 

She rushed me off to a local hospital, where the triage nurse pushed me straight into emergency, jumping the line.  The did a scan (not sure whether MRI, CT, whatever).  Could not find anything, and shortly thereafter my vision was back to normal.  Doctor told us to call an ambulance if anything similar happened. Sent me home, all was well.

 

Skip forward two days.  I was brushing snow off my wife's car before she left for work, felt a bit dizzy, put it down to not having had breakfast yet.  She took me inside, quizzed me about details, call 911 and got an ambulance.  The medics did a bunch of standard tests, decided to take me to hospital based on history.  Walking to the ambulance, my vision went haywire (images from each eye rotated 90 degrees in opposite directions), felt like my head was being split it two.  Ambulance made record time through the morning rush-hour.  Same doctor was in emerg, still had my wife's phone number in her pocket.  Sent me straight through for a scan, still could not find anything.  Admitted me for observation.  I went downhill during that day and night, and again the next day.  Lost of repeated scans of every type known to man.  The senior radiologist then spent a couple of hours going over my scans, found a dissection in one of my vertebral arteries, figured out where the clots would have gone, found the lesions and then all was clear.

 

Not much that they could do in the way of treatment, they just kept me going until I was able to go home (about 10 days IIRC).  After that, rehab at St Johns (mostly learning to balance and to cope with the permanent loss of one quadrant of my vision.

 

A couple of take-aways for me:

 

-- the system is not geared up for "rare" strokes, with damage in unusual places.

-- the line between migraine and stroke symptoms is pretty much non-existent in many cases.

-- medical diagnostics can be really difficult

 

It *would* have been better had we gone to Sunnybrook initially (the major stroke hospital for Toronto), and also if the ambulance had insisted on taking us there.  Apart from being the stroke centre, it is also closer than North York.  That said, I now go to Sunnybrook for checkups, and have spoken to the boss of their stroke unit, who said that I would likely have had the same outcome had I go there instead of North York.  They would probably also have battled to find anything and sent me home with a diagnosis of Migraine.  The return trip would probably have received some more intensive diagnostics, more advanced imaging.  It would probably have made no difference to the outcome.

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Thanks Paul for the response. I see how it may not have resulted in a different outcome in your case. I appreciate you sharing your story. Quite scary indeed, but great to know you survived and based on what I've seen out here, continue to heal. Keep going. You can do it!

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Paul I feel you are exactly right. Rare strokes get the push aside far too many times despite their very real danger. I actually was rushed to a great stroke hospital in Nashville but I was still misdiagnosed. I even had a simultaneous stroke on both sides of my cerebellum...large strokes. I think to me it's clear that more research needs to be done and focused on as well as better protocols, training, and a realization that what I had or what you had or any other rare stroke is as dangerous and as serious as any other stroke when it comes to disability and death. I really don't like the answer of "well you had a rare kind of stroke"...it frustrates me. I am, you are, we all are as important as anyone else. Catch up medical field...please.

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Steve,

I was married to a fire/medic, and then Fire Chief for 25 years, he was a MSO (medical service officer) in the many years leading up to being Chief,and ran the ambulance divisions of the Fire Departments that he worked for.  I can tell you that where the ambulance goes when it picks you up is HIGHLY political game, in both private EMS and in public (Fire Department) paramedic services.  I applaud you for taking this on, and I think it will save many lives and prevent additional disabilities, if you can get it done!

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Thanks Tarina. We feel the same way here in WI. Appreciate your encouragement. I will do my best.

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