Quote:
Originally Posted by jrae
I've been doing some reading and research online, trying to gain at least a little understanding on brain injuries and the things that go into them & surround the people who have them. yet at the same time, it is incredibly frustrating cuz many medical professionals contradict each other, and it seems many say differing things. so what the h**l is a person suppose to do and who/what to trust?!? 
in basic terms, a B.I. are changes in the brain, ranging from subtle ones to severe ones. i'm looking at gaining info on what is happening - cuz the why people just don't know that!
and the more reading I do, the more 'things' I notice, and the more time that passes, I grow increasingly nervous. and not just cuz this is turning into a long-term medical issue for me.
I'm nervous about telling my B.I. doc about some of these 'subtle changes' I am noticing. cuz if they don't fit into the "right categories" (like behavioral or cognitive), I'm super concerned they'll start thinking these are like psych induced/related symptoms -> and that's a road I AIN'T going down with my B.I. doc! especially since my scans have come up negative for any major changes/damage. [plus the pain-topic is a touchy subject with people who have MIs]
so... how can I truly trust doctors when they contradict each other? how can I believe the doctors have my best health-interest in mind when they do things like suggest/prescribe medications that are not safe for me?? how can I talk about my health concerns/fears when I have so much trauma inside me that there are things my mind keeps from me?!?!?  and how can I deal with all these emotions and things when there's no one IRL I trust enough to talk to?  |
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As someone with a brain injury, I relate to your fear of the unknown with regard to what happens to people over the long-term who acquired a TBI (traumatic brain injury).
The answer is: no one really knows. Sure, doctors can make predictions but they don't know what will happen.
I worry all the time about my brian injury's long-term effects. Frontal lobe dementia, is probably my biggest fear. Going blind. Developing schizophrenia. going deaf. Developing Parkinson's Disease or ALS or MS. Having a stroke or seizure. Who knows what will happen to my brain.
I had polytrauma with my brain injury. I suffered an occipital fracture, some of my scalp was torn off and had to be staple back on to my head, my eyes were swollen (eyelid edema), the skin around my eyes was badly bruised, I had a knee fracture, a bruised kidney and scrapes up and down my arms and legs and all over my face from skidding on the road pavement after a mobility truck knocked me off of my road bike (10 speed).
Two years AFTER my first brain injury, I was driving my car and was T-boned by a driver and suffered yet another brain injury on top of my not-yet-healed brain injury. So technically, I have 2 brain injuries. (The fact that I taught for a few years after that, and went to graduate school is a miracle.)
Stick with one doctor. Do NOT go around asking multiple cognitive psychologists or neurologists for their opinion. You will get multiple opinions from multiple doctors.
Do NOT go to a chiropractor!!!! Sorry for the folks here who believe in chiropractors but they are not medically licensed professionals. As in, they did not go to medical school for 4 years. They do not have an M.D. and some don't even have a bachelors degree. They are not medically qualified to care for an injured brain. I realize my strong opinion will offend people who love their chiropractor.
I only trust my brain's health with a board certified/licensed neurologist.
To keep my brain "exercised" I do a lot of crossword puzzles at night. That also helps with my anxiety.
If you are anxious about the subtle changes, then you NEED to talk to your neurologist. They won't force you to take a medication. They may have you complete some cognitive testing. It's the best way for a neurologist to measure your brain's cognitive functions. Through testing.