One thing I recommend to every survivor: Get an MRI of your brain and keep a copy.
Why?
First of all, an MRI can tell you a lot about what parts of your brain were damaged. Knowing where the damage was can give you insight into potential recovery.
First of all, an MRI can tell you a lot about what parts of your brain were damaged. Knowing where the damage was can give you insight into potential recovery.
And an MRI (probably) comes with good news: You probs didn't suffer from as much brain damage as you thought you did. In fact, the average stroke (stress average) kills about 2% of the brain. And the brain is a highly resilient and transitory environment. It is very plastic. So that's good news, not much damage in an environment that can make up for its own weaknesses.
What is a massive stroke?
MDs often describe a stroke as massive. The problem is, there is no definition for that word when it comes to stroke.
What a free book? Here's you quiz...
Here I will offer a challenge. (If I lose, I will recant and send you a free signed copy of my book- yay!?). When a stroke is defined as massive, how much of the brain has to die to be considered massive? I'll take a % or a # of neurons, or any other quantifiable definition.
Here's what I suspect: The word massive has never been defined at all for stroke. MDs use the word like they use many words: to define what they can't define. Massive tells you nothing, as does hemiparesis, cognition, unilateral neglect, etc., etc. These are terms that are used a lot but provide no quantitative measurement. Take hemiparesis. This term runs the span from someone who can barely lift their shoulder to someone who you'd not recognize as having a stroke at all. And poorly defined terms like massive end up providing a self-fulfilled prophecy. "I had a massive stroke." It sounds bad and it may be bad. But because its not well defined, it may not be bad. It may be pretty small. How small? Get you an MRI of your brain, or if you had one (you probably did) get a copy. And embrace it. Frame it and put it on your wall. It might be the most inspiring piece of art you have.
8 comments:
I took my MRI when I saw a new neurologist, he had zero interest in looking at it. He was the one who told me that since it was two years since the stroke the areas that hadn't recovered would never recover since the neurons would have demyelinated by then. I asked why a feature of multiple scelerosis had to do with stroke. He hemmed and hawed and never answered. He was trying to use the big word demyelination to shut me up and not ask further questions. He was an idiot. And this was before I really knew anything about stroke.
I asked for a copy of my MRI when I had it, but was told that it was against hospital policy. I was peeved, to say the least, and argued about it, but it was no good, the doctor (who agreed that it was a silly policy) wouldn't budge, I assume that fear of lawsuits being the reason. I'll keep asking though. At least I got to see it.
Thanks Dean! Dogon: Weird... and wrong.
I was able to get a cd copy of my husbands MRI of his Massive Stroke . It will be 2 years on July 23 , 2014 since his stroke . He was 43 yrs old when he had a blood clot in his brain and had tpa administered to Relieve the clot , but since this did not work they had to go in to retrieve it surgically . The next day he had swelling on the brain and I think bleeding as well . On the 3 rd day he had to have a crainectomy to relieve the pressure on his brain and I'm assuming his spinal cord as well because they said that if it continued to swell it could crush your spinal column and he could of died . He wasn't out of the woods after that surgery because he wound up having a heart attack on the 5 th day in the icu and had to be resuscitated. He started to come around and be taken out of his medically induced coma on the 11th day . After 2 mths in the icu and 3 mths in rehabilation he was able to come home . My husband is still in a wheelchair. He is able to do some walking , but gets tired quickly and has shakes in his arm and leg . He has no use of his left hand . I would consider this a Massive Stroke.
I am intrigued by that idea of what a massive stroke is.
I hear that phrase thrown out there to families in a "be prepared for the worst" kind of way. I have also heard it used by survivors in an oddly competitive way.. "my stroke was way worse than yours and that is why I am not getting my own coffee."
I guess my answer to what I think a "Massive Stroke" is would be that this is a qualitative and subjective measure and not quantitative. I think it is when the person is so overcome with symptoms and the consequences of them that with time the person looses hope and does not build a new satisfying life. I suppose to that individual and their loved ones it was indeed a Massive Stroke.
When someone gets an MRI, they are looking to see if their stroke was ischemic or hemorrhagic. if the person had an ischemic stroke and doctors act quickly to care for the patient then the damage can be minimal. IF the physician gets the type of stroke wrong and gives them tPA, then it can make matters worse.But since MRIs take time and time is an issue if it is an ischemic stroke doctor's give tPA. However, a hemorrhage is normally fatal and rare the risk of making a mistake is minimal along with making the ischemic stroke worse.
With the whole massive debate, I think it is safer for doctors to overestimate than to underestimate for fear of getting loved one's hopes high if something were to go wrong and then you'd have to take into account of the doctor possible getting sued.
Thanks for your comment Jenna Scharfenberger. A bit of clarification: MRI is not used to determine ischemic v. hemorrhagic; computerized axial tomography (CAT) is. MRI is used to further define the size, borders, assess severity, and follow progress. "...a hemorrhage is normally fatal " -is incorrect. Although they have a higher death rate than ischemic strokes, hemorrhagic stroke are not usually fatal. Keep in mind; hemorrhagic stroke survivors recover more than ischemic stroke survivors. I'd suggest he following reading:
~ http://recoverfromstroke.blogspot.com/2012/03/bleed-vs-block-who-can-expect-better.html
~ http://eradiology.bidmc.harvard.edu/LearningLab/central/Hoki.pdf
~ https://www.researchgate.net/profile/Brett_Kissela/publication/7363760_Heart_Disease_and_Stroke_Statistics__2006_Update._A_Report_From_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Committee/links/55bf68a108aed621de1387bb.pdf
My neurologist said that the functional impact determined whether a stroke was massive, rather than the size of infarct or bleed. He said that stroke the size of a baseball, in a less vital part of the brain, could be less severe than a stroke the size of a pea in a very part of the brain. So from his definition, the quantitative comparison could be the number of icd codes generated with a subjective hierarchy applied.
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