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Grand Member
Member Since Jun 2008
Location: WYLTK
Posts: 766
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#1
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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bpcyclist, Discombobulated, downandlonely, June55, MickeyCheeky, WastingAsparagus
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MickeyCheeky
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Legendary
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#2
I understand your Concerns, @jrae! It is definitely confusing when Doctors say different things. However, I'd still encourage you to report anything that you're experiencing to your B.I. Doctor. I understand your Fear, but Doctors have no reason to hurt us - they're there just to help us after all! Unfortunately it is hard to find the right Meds and it can take quite a bit before finding the right Match as everyone is different! Please talk to your Doctors about ALL of this as soon as you can. The longer you'll wait, the more difficult things will become. Express ALL of your concerns as well. I can relate to your frustration! Have Faith in Them and in God as well and I am sure things will work out sooner or later! We are also here for you if you want to talk and you can PM me ANYTIME if you want to vent, although I'm no medical expert myself unfortunately! But please do reach out here and to anyone you can and you trust IRL if you can find someone! I am so sorry you have no one to talk to! That is certainly hard! Sending many safe, warm hugs to BOTH you, @jrae, your Family, your Friends, your Doctors and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK?!
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Discombobulated, jrae, winter4me
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#3
I would also encourage you to be honest with your doctor. They can't help you if they don't have all the information.
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jrae, June55, MickeyCheeky
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Discombobulated, jrae, MickeyCheeky, winter4me
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#4
Quote:
Consider a chiropractor - yes there are some that help your brain reconnect patterns or brain injury clinic I wish you well! I will listen any time you need a chat. |
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jrae
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jrae
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Grand Member
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#5
thanks all!
the one thing I can't explain - it's something I will never be able to bring up to anyone, and will avoid the topic at all costs. so I'm just going with the idea, 'if it ain't broke, don't fix it'! things still work - not 100% but still function. and I'm fine as long as things aren't organ or body or life threatening, and they aren't for now. the other thing is I live in a rural area. it's at least 120 miles to the nearest 'big cities' for these specialty clinics and programs! the exhaustion and frustration that creates is incredibly overwhelming at times. there is one other thing I've noticed that I'm still debating about what to do about it. I wish my aunt was still here so I could talk to her..... |
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winter4me
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winter4me
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#6
I hope you find someone you can talk to about it, it sounds like that is really what you need and want to do. In doing research, I find (as a former healthcare professional and a person with difficulties) that over time you find what makes sense to you, what helps you to feel that you understand. There are many things we don't know, or that are not black and white or always of the same origin. It helps when you can, to talk with a doc/other who is open, who listens, and who responds to your needs. Diversion, unrelated activities also is helpful to stop ruminating, at least for a time. (((((big hug))))
__________________ "...don't say Home / the bones of that word mend slowly...' marie harris |
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jrae
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#7
Quote:
What Impact Will Moderate or Severe TBI Have on a Person's Life? | BrainLine Long Term Effects of Moderate or Severe Traumatic Brain Injuries (TBI) - TheraSpecs Old Head Injuries Can Linger for Decades - Brain Trauma 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. |
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jrae, winter4me
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jrae, winter4me
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Grand Member
Member Since Jun 2008
Location: WYLTK
Posts: 766
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#8
I didn't use to have this kind of fear. then came my concussion brain injury last year! (was not unconscious for this one) when things turned from 4 months to 6 months to 8 months and continuing symptoms, things got worse in a hurry!!! how the h**l was a person NOT suppose to freak out?!?
worsening head pain after 6 months really got me thinking. then add to that all the questions you have to fill out for the neurologist - wow! how the blank is a person not suppose to have TONS of fear given this: multiple head/brain injuries, over 20 years of D along with multiple other MIs, a family history of Parkinson's (grandparent), family history of migraines and headaches (granted mine are trauma/injury induced), and vision & hearing issues/changes! the emotional fear is mind-blowing at times..... then i focused on my own physical-health history: i've been forcefully knocked unconscious at least three times in my life; i've had four head injuries in the last 14 years alone, three of those were concussion brain injuries - only 1 got treatment; four years ago i was in a really bad car crash and got a TBI, which for a couple reasons not by me, actually went untreated! then add another concussion on top of a brain injury that wasn't healed, and bam -> the physical symptoms exploded. [ps- i'm not even 35yo] and none of that even touches the non-physical trauma i've been thru in the past four years, which is almost unimaginable! i've got fear coming at me from all directions. needless to say, i understand your concerns as well. StreetcarBlanche: thanks for the advice. i don't 'shop around' for doctors - i was just referring to the ones i have and the articles i've been reading online. and that's one of the unique challenges i face -> a majority of my brain injury symptoms are physical ones; plus with an injury on top of an injury, there's no way to know what cognitive issues i had/have - especially with so many years of MIs to mask or cover them up. and this only adds to the fear and other emotions |
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winter4me
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winter4me
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Grand Member
Member Since Jun 2008
Location: WYLTK
Posts: 766
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#9
@StreetcarBlanche ,
did you have any sleep issues after your brain injuries? if so, how concerned were you about them? |
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#10
@jrae I didn't sleep for the first year after my TBI. I think everyone is effected differently by their TBI. As long as you have a neurologist, you should stay in touch with them via email and ask them these questions.
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