Misinformation

There is a CRAPLOAD of misinformation out there. It’s kind of astounding. If you have a brain injury, you better figure out for YOURSELF the correct information and not blindly listen to everything your doctors tell you. This is all stuff that I’ve heard from doctors or from other stroke survivors and it is just plain wrong information. First, it does not matter if your stroke was ischemic(caused by a blood clot) or hemorrhagic(bleed in the brain). What matters is how severe the stroke was, where it was, and the size of the infarct. A hell of a lot more brain matter can be killed from an ischemic stroke than a hemorrhagic stroke. And vice versa. Second, it does not matter if the stroke was in the cerebrum or cerebellum. All strokes are capable of causing severe disability for years and years. Third, the fatigue caused by a lot of strokes can last for years and years and maybe for the rest of your life. I was told by a neurologist, a year and a half after a debilitating, disabling stroke, that my fatigue was the result of being depressed. Oh really Doc? Fourth, I was also told at a year and a half out of my stroke that my recovery was over and I need to deal with the mental effects now. I cannot WAIT until that MD sees me again. Fifth, I was told by my neurosurgeon that the PFO in my heart caused my stroke. Then my cardiologist told me it had nothing to do with it. I’m still debating this one. The first speech therapist that treated me – don’t get me started. When it comes to a brain injury, there is A LOT of wrong information being given out. The truth is the medical community does not know how to deal with these patients. The fact that I lay in a hospital bed for 30 hours before being diagnosed speaks for itself. Barb, I’m pretty sure I used ‘lay’ wrong. I’ve never figured out when to use lay or laid or lain or lie or lied.

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Categories: Brain stuff, Health, Recovery, Stroke stuff

Tags: , , , , ,

26 replies

  1. The only thing which is certain is that the brain was traumatized. Yeah, I’ve reached that year and a half mark too but I say watch me. I love to prove others wrong! Never ever tell me that there is something I will never ever be able to do again because that just makes me try harder to prove you wrong if it’s something I want to do.

    I keep hearing how little is known about how the brain functions, but like you I’ve listened to the experts with their “advanced knowledge” with a grain of salt. The fact is, while some people accept what has been dished out to them…there are the ones like us who break all the known rules and stereo types. Every stroke is different…bah humbug. Isn’t it easier to say, “I don’t know. Let’s find out together.”

    I went into the hospital on a Friday night and the first time I heard the word stroke was on Tuesday.

  2. A neurologist told me at 2 years that my muscle functions would not recover because the unused neurons in the brain would have demyelinated. What bullshit. I was never told I had a stroke. A CVA was mentioned and I had to ask what that was. In fact don’t listen to anything your doctor has to say about recovery, they know nothing.

    • Yeah, I’m convinced now don’t listen to the medical community about how much you will improve unless that doc or a loved one has been through this. That’s why I want to open a neuro rehab center.

  3. I think sometimes doctors and health professionals seem to think you need to be shielded from the reality of the situation, and that stroke survivors are somehow less mentally capable of accepting and dealing with what is going on. I have found this on more than one occasion. I guess they want to make sure hope is still on the top of the agenda, and are doing it with the best intentions.

    However, if you’re the kind of person that needs to understand what has hit you, these motives get in the way a little bit I think. I suppose a lot of people accept what they are told, and try to take what they have and move on.

  4. Great post Amy! Esp. like your observation on the PFO/Cardio/Neuro disconnect. Somehow our “professionals” still can’t trace the anatomy and see there is a connection between the heart and brain. After all these years, a coin toss is still as accurate as you’ll get if you ask the opinions of a Cardiologist and a Neurologist. I tell patients now to ask about financial disclosures when their professional gives a suggestion either way.
    As far as the rehab, it still comes down to hard work and taking what works and puting aside the rest despite what the popular “science” says. Keep up the good work!!

  5. I’m not the English authority that Barb is, but let me try to help out. It’s easy really: lay and laid are tenses referring to having intercourse, and that’s easy to remember because you should try not to be tense at that time. Lie and lied refer to telling falsehoods, and lying and lain are used when telling falsehoods about having intercourse. Simple. Let me know if I can be of further assistance.

  6. Who is that Iben Goofinoff person. He’s an idiot.

  7. and not just in the USA! here in Aust. no one knows and won’t discuss options. I have a long (over 30 yrs)background in Fitness & real Martial Arts, the Doctor was amazed I knew the muscle and nerve groups names. When I 1st started trialing I was warned to suffer the consequences, now I’m 70% active!, I was supposed to be bed bound originally! I know there is to much damage to fix all, but may as well try.

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