March 30, 2011
MY STROKE AND FIBROMUSCULAR DYSPLASIA
At the age of 37, I had a transient ischemic attack (TIA) or small stroke. I woke one morning with a dull headache and over the course of the day my head became tender to touch. I decided to go ahead and go for my routine run and as I went to leave, my granddaughter, Ashley, asked if she could ride her bike along side of me as I ran. Since Ashley was with me we had to stop a lot so that I could help her with her bike at intersections. After returning home and showering, I noticed my pupils were unequal. My headache wasn’t any worse but my left pupil was very tiny and my right was huge. Being an emergency room nurse, I knew that these were neurological symptoms and my first thoughts were could it be a stroke, brain tumor or aneurysm. I thought there was no way it could be a stroke and became very anxious thinking I could have a brain tumor or aneurysm. I called a close friend of mine and she urged me to get to the hospital right away. After arriving at the emergency room, the pressure in my head was worse and I started getting a tightening sensation in my head. As I was sitting waiting to get triaged I was becoming more and more anxious and then the left side of my face started to you numb, inch by inch I could feel the numbness moving down my face, I started to cry I will never forget how scared I felt. When they triaged me my blood pressure was 210/130 being a runner I thought there is no way! Looking back I realized my daily run had not helped me at all that day and I am sure it made my situation worse. Had Ashley not been with me that morning I would have run faster and harder than I did, the outcome could have been very different.
The emergency room did a CT scan and it was negative, it showed nothing. My facial numbness was gone but my headache and unequal pupils persisted and my blood pressure was fluctuating. I was sent home and told to follow up with my doctor.
The next morning, actually just hours after leaving the hospital, I ended up going to another ER where I had friends working. I had a spinal tap and an MRI. The MRI showed that I had dissected (torn) my left vertebral artery. At this point I could not lift my head off of the bed as the pain so was so intense and worse when I would elevate the head of the bed. My pupils were still unequal and my blood pressure was fluctuating and all over the place. I spent the night in the hospital and after being stabilized, I was sent back to the first hospital because that is where my primary physician was on staff and where my insurance was accepted. By this time I had the “worst headache of my life.”
The admitting doctor tried to send me home stating that he did not agree with the findings and that he was going to treat my blood pressure and send me home. Mind you I could not lift my head off the bed and my pupils were still very unequal. Being a nurse, I challenged the physician and he re-evaluated my case. He came back into my room and stated that he was wrong, that it was worse than they had thought that I had also dissected my left carotid artery, due to the intensity of my headache and my symptoms I was scanned again and they also found a right carotid dissection, lucky for me I was already in the hospital and being treated.
Months later, I continued to be symptomatic and went in for a follow up scan. The tech doing my scan asked me what had happened when I told her she responded “I see your aneurysms” my thought was, what aneurysms. I called my doctor and he told me that I did not have aneurysms and that it was artifact from movement during the scan. I knew something else was wrong with me and I was scared to death. I still had so many symptoms that were not getting better or going away. I made an appointment to be seen at The Cleveland Clinic the doctor decided they should do an angiogram to look at the arteries. He confirmed that I had three dissections and two aneurysms. It also showed areas of stenosis and a “classic string of beads” appearance, which is characteristic for fibromuscular dysplasia (FMD), which was the underlying cause of my stroke.
My physician also looked at my renal arteries. My right renal artery was also affected with fmd, which explains the sudden onset of hypertension. Due to my arteries not healing and my continued neurological symptoms such as passing out and loss of vision I ended up having to have stents placed in my carotid arteries. In 2001, my first stent was placed and the second in 2002. I have been doing great! The stents really made the difference for me. Several years ago I was also diagnosed with fmd in my left renal artery. There is no known cause or cure for fmd. I go in for yearly checkups on my carotid and renal arteries. For now, I will continue taking blood pressure medication and aspirin. When I was diagnosed with fmd in 2001 it was considered to be a rare disease now they are estimating that 5 million people may be affected by fmd.
Listen to your body and trust your intuition! I am very lucky to be alive and know that I have been given a second chance. For more information on fibromuscular dysplasia visit www.fmdsa.org
Pam Mace
Rocky River, Ohio 44116
USA
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October 31, 2010
DADDY, GET WELL SOON !
Our dads had massive strokes: A true story about the dads of a mom and her daughter
I had to tell our 7-year old daughter her father had a stroke on Oct. 29 of this year, the same day the World Stroke Organization (WSO) launched its World Stroke Day "One in Six" campaign, 1 in 6 people worldwide will have a stroke in their lifetime and every 6 seconds someone, somewhere will die from a stroke.
Seven years ago, my 62-year old dad also suffered a stroke. I was a new mom in the process of changing careers, working two jobs and a graduate student at Johns Hopkins University in Baltimore.
My dad's stroke damaged his muscles leaving him with difficulty eating, dressing and performing most daily activities. His left side was now completely paralyzed and he was now wheelchair bound. I remember the shock I felt after hearing the news.
Then, seven years later, I had to express to our daughter, her 46-year old dad, too, suffered a stroke, one very much like my dad's.
My head began spinning as I thought:
How am I going to deliver the news to our daughter about her daddy? How will she handle it? Can she handle it? What kind of effect will the news have on her now and for years to come?
My daughter's dad and I divorced when she was two years old. However, despite the separation, our daughter's dad remained an active force in her life. In fact, our little lady, had regular visits with her dad, knew his work schedule (oftentimes reciting it to me) and loves her daddy to death!
I had to tell her the truth. She deserved to know, if something more tragic occured, it would've been very difficult to face her knowing I had been dishonest and withheld important information.
Therefore, the message was relayed based on what our daughter knew about her Papa (her grandfather). I explained to her that daddy had an accident, very much like her Papa's, and this accident was called a stroke. I continued by saying, her dad had no feeling on the left side of his body, cannot walk, move his arm, fingers, and will be in the hospital for a while. I also stressed that we would visit her dad often.
As I shared this adult news to our daughter, she was crushed! She immediately began crying, repeatedly by saying "Poor Daddy!"
Then, I prepped our daughter more on our drive to Charlotte Medical Center by stating that her daddy is still healing. He may be sleepy at times, will be unable to get up and play with the computer or video games as he had previously done with her; and that right now, he would be unable to see her from his left eye due to his peripheral vision being affected as a result of stroke.
During the conversation, I emphasized the need for our 7-year old to be strong, that she had to encourage her dad allowing him to know that God will take care of him and that everything (despite all of the things that have changed so drastically in her dad's life and now our daughter's life) will be OK !
As I shared the news with our daughter, she listened intently, asked many questions and promised to be a "strong big girl!"
Then, after this very difficult conversation, she said "Mommy, I want to see him!"
We arrived at the hospital. Upon entering her dad's room, I could tell she was nervous. So, I held her hand. It was very clammy, as well as forehead. Plus, as soon as we walked in the room, she asked to go to the bathroom and then whispered "Mommy, my legs are shaking. I just don't know understand why."
Her dad was so excited to see her. He grinned as much as he could in his paralysis-stricken face.
We stayed at the hospital for a few hours on October 29.
On October 30, our daughter stayed at the hospital with her daddy from 11:00am to 7:00pm explaining to me after my mentioning at about 2:30pm, I had to leave and pick-up her brother from a mentoring program he bi-weekly participates in. Our daughter said, "Mommy, I will stay here with Daddy because I don't want him to be alone when he wakes up." Kids are so resilient.
My dad, a man who was employed at a historically African-American university in Maryland for over 30 years plus, my undergraduate alma mater, in fact, could no longer work.
My dad, who played weekly basketball with his friends, and possibly even a trash-talking session with peers during or after the game, was unable to walk, run... and, due to speech difficulties, now talk in the manner he previously did.
My dad, who, he and I would occasionally meet for a good Maryland crab cake or sushi at a restaurant conveniently located by my grad school, could no longer drive!
Now, seven years later, my daughter's dad.
When my dad suffered his stroke, he was unmarried and being his next of kin, I was thrust into making decisions that would affect the rest of his life, such as determining if he had medical insurance, to find out due to university Administrative changes and requirements, my 62-year old dad, who worked with his employer for over 30-years, was considered a contractual employee at the time and had no medical benefits.
While lying in the hospital daily experiencing the effects of a massive stroke, Dad's medical hospital and rehabilitation costs were growing exponentially, and due to personal limited finances, I could not provide ample support.
During the time, I also learned information about the application process for Social Security, Disability Insurance and Medicare. I found a new wheelchair accessible home for my dad due to his current home being no longer conducive for his present condition; and, while all these things were occurring, two young children remained at home, a son of 9-years at the time and our daughter, as well as full and part-time work, and graduate school.
Honestly, sometimes, during these days, I thought I would lose my mind! However, I knew strength was the key, but Lord knows, it was challenging!
My daughter and I have experienced the effects of a stroke first-hand within our immediate family - you could too!
We will continue visiting my daughter's dad, supporting him as he goes through rehabilitation.
In addition, give thanks, for our dads were two of the fortunate ones.
shared with WSO by:
Adriane M. White
Charlotte, North Carolina
USA
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July 14, 2010
NAVIGATING THROUGH THE FOG: THE STORY OF A STROKE SURVIVOR AND THE WOMAN WHO LOVES HIM
Hello,
My husband and I have written a book called "Navigating through the Fog: The Story of a Stroke Survivor and the woman who loves him." On August 5, 2009, Brian had a severe hemorrhagic stroke to the basal ganglia part of his brain.The first night and the days that followed were harrowing. Brian went through months of therapy. Seven months after the stroke, Brian returned to work as a mechanical engineer for Toyota. This is a story of survival and perseverance. It is also a love story! Our goal is to help the caregivers and stroke survivors. We hope that they can learn from our story. We have a website called www.navigatingthroughthefog.com which will tell you more about our story. We were also written up in American Periodicals beclose.com/slon http://www.ocregister.com/news/healy-255729-brian.stroke.html
Please use our story in any way that you can to get the word out there.
Thanks so much,
Jan Healy, USA
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August 16, 2009
JUST ANOTHER EVENT – EXCEPT IT WAS ME
I hadn’t counted on all the introspection.
Sure, I fully expected a few side effects. I expected a little survivor guilt. I expected to feel overwhelming love. I expected all that. I received all of that. But I didn’t expect the introspection.
After all, when someone runs a red light and almost broadsides you, your knees may shake for a few minutes, but you don’t wake up in the middle of the night thinking about it. You don’t stare at walls. You don’t cry about it. You just get over it. Quickly.
But not with a stroke.
A stroke wakes you up in the middle of the night…thinking. A stroke makes you stare at the walls…thinking. A stroke makes you cry spontaneously. A stroke makes you grateful you’re still alive. A stroke makes you very, very introspective.
Assuming of course you can survive the crazy thing to begin with. Like I did. Quite luckily.
I have found another introspective twist on having had a stroke. You are now a walking ghost. Or at least that’s how I feel anyway.
For example, if a friend and I were to pass someone on the street who has had cancer we would both just think “he had cancer, hope he stays ok” to ourselves. If we were to pass someone who had a heart attack we would barely nod. But pass someone who has had a stroke! That’s different. As soon as you’re out of earshot it’s all “there’s that guy who had a stroke……”
Or. Maybe not, maybe that’s all just my personal reaction. I probably need more time staring at the wall on that one. Sigh.
How did the word “stroke” become associated with such a monstrous event anyway? After all stroke is a word usually associated with something gentle and caring. Or something “sweet,” like Tiger Woods’ golf swing. But when you combine the word “stroke” with the words “had a” or “have a” the meaning changes very quickly.
I “had a” stroke on July 30, 2009.
That was only 7 days after having one of those carotid artery screenings to make sure I wasn’t a stroke risk – and passing with flying colors.
It turns out we all have more to worry about than the condition of our carotid arteries. They aren’t the only ones carrying major blood to the brain. You have two others, called the vertebral arteries. As you might imagine they go up the back of your neck, sort of winding thru your vertebrae and they supply the brain stem, and in turn much of the rest of the brain.
The good news is that we are all born with 2 such vertebral arteries. The bad news is that some people only have one that ever really works. Maybe that’s where the phrase “half my brain tied behind my back” comes from. But anyway, that was me. I was born that way, with only one.
Granted, I can’t point to a lifetime of perfect self care. Until a few years ago I had largely ignored highish (OK, high) blood pressure. But I have never been overweight, smoked or drank. I never ate more pizza than the next guy. Full fat milk on my cereal? Yeah, maybe twice a month for gosh sakes. No, in my case it came down to having only one artery to do the work of two.
So when the detritus of a lifetime of eating (I’m 63) ended up in my blood stream it only had one vertebral artery to coat, instead of two – so sooner or later it was destined to close down like a greasy kitchen drain. Which it did on July 30.
Now, there is such a thing as Drano for such situations in the form of clot busting drugs. But not all hospitals keep them around, because they’re not like giving a penicillin shot – you need a neurologist to administer them properly. As my luck had it, the hospital in my small town was among those marked “no Drano here.”
There was another option of course, which was to get my by now right-side-paralyzed-keister to a hospital that did have clot busting drugs. Except this meant a 60 minute ambulance ride, or 15 minutes by helicopter. “Okay, gimme the helicopter,” I said. “Ahhhh, sure, but it takes the helicopter 20 minutes to get here.” And then it was another 10 minutes to handle the paperwork, load me in and probably go for donuts.
Anyway, by the time I got to the big university hospital the doctors cheerfully informed me I was now “past the window” during which clot busting drugs can be used. “Yes, we have clot busters, but, sorry, you took too long getting here…”
Momma never said there’d be days like this.
But as you have probably guessed by now, things got better from then on. This huge and very concerned team quickly stuck me into an MRI machine (the noise was barely noticeable) and amazingly right after that a bright looking surgeon ebulliently informed me there was a procedure that could fix my situation. I didn’t ask him if he was crossing his fingers behind his back. I said “Do it!”
It meant carving into an artery in my groin and threading a little wire cage up to that blocked vertebral artery (yeah, inside my skull), knocking the blockage out of the way with a balloon or something – maybe a knitting needle, I forgot to ask – and releasing the cage (called a stent of course) to hold the artery open. Forever.
Two hours of surgery and 24 more hours of intubation and amazing family bedside vigils later and the doctors were asking me to squeeze their fingers, smile, stick out my tongue, raise one leg, then another and stuff like that. The paralysis was gone and everything was working wonderfully, I couldn’t believe it.
Sure, it hasn’t been a party since. I spent the first couple of days in bed gripped with fear that the room would spin when I walked. But it didn’t. Returning home floored me for a few minutes. I realized I never thought I’d see the place again as I was dragged out the door to the ambulance on July 30. But that passed quickly.
It’s the introspection though. That hasn’t passed. And I am not sure it should, I am not sure I want it to. After all, when you dodge such a bullet, who wants to just forget all about it and go back to the same old way of looking at things?
Introspection brings an unbounded world of new appreciation. Of friends, of family, of sunshine, of sleep, of, love, of everything.
You know how from time to time you hear someone who has survived an accident or a disease say “the experience was good for me?” You’ve heard that, right? Well, I used to think that was just a coping mechanism. Poppycock basically.
Now I know different, it is the real truth.
1734 Jasmine Ave. Villa #4
Fairfield, IA 52556, USA
642 4729036
bdaniels@tm.org.
Copyright 2009 by Robert T. Daniels
