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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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10-11-2015, 09:54 PM | #121 | ||
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again THANK all of y'all for sharing your information |
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10-12-2015, 12:14 PM | #122 | ||
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Junior Member
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Well, I'll take the question back a little further, and say what I wished I'd known from the time of my accident:
1.) Even if you go to the ER, they may have no protocol to test for TBI or to tell you/your caregiver to be watchful for signs or symptoms. I got handouts about my whiplash and shoulder pain, but nothing about possible concussion. 2.) Doctors -- no, the entire medical community -- have very different levels of knowledge regarding TBI. I understand that they all can't keep up with every study and journal article out there, but it's angering to realize that many of them keep repeating the same old statements (like the "It will be better in 3 months/6 months/a year" "The majority of people with head injuries go back to normal in a few weeks" etc) LONG after evidence-based studies have shown that there isn't really a definitive basis for these statements. 3.) Research on TBI is very sadly lacking. And if you consider that the main drivers in the last couple of years have been the massive numbers of vets with TBIs and NFL players 'coming out' regarding their own injuries, it's clear we wouldn't even know this much. 4.) "Powering through" and "life as usual" are not good plans immediately following the discovery of a concussion. Rest, cutting back (at least) on job tasks or school work, evaluation of diet, hormones, inflammation, and getting positive support from friends and family are invaluable. 5.) Having said that, you will find out who your true friends and loved ones really are. And sadly, that may not be who you thought. 6.) You have to advocate for your own care, even with your doctor. 7.) You might be finding new things that you can't do months after the concussion, especially if you were also dealing with physical injuries that kept you from activities for a while. 8.) You may react to medications very differently after a concussion, including things like anesthesia. Tell every doctor that you've had a concussion, even the dentist and the eye doctor. 9.) You may react to a LOT of things very differently after a concussion. You may react to slight stresses by bursting into tears or getting angry (surprising yourself and people around you ). You may react to weather changes, or heat and cold differently. You might not be able to deal with places with a lot of sensory stimulation, like clubs, or shopping malls, or even museums. 10.) You may have health affects that you wouldn't have connected to a head injury at first, such as endocrine/hormone issues. Everything is connected, and part of the endocrine system is in the brain, after all. 11.) A neuropsych eval may not pick up your types of PCS symptoms, especially if they are executive function issues. I knew I was having difficulties, but when I finally had the eval, the psychologist told me that I was mainly depressed. My IQ had gone from "very superior" to just "superior," so my problems weren't that bad. Luckily, though, after I told him that I could tell that the test wasn't picking up my problems, he sent me to a SLP, who gave me different tests that more clearly showed where my problems were. I also find that my SLP understands and has more insight into TBI/PCS symptoms and recovery than anyone else I've been to. 12.) It will change the way you look at everything. |
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"Thanks for this!" says: | Adenium (08-14-2016), Brenda1964 (01-17-2019), Concussed Scientist (03-21-2016), crfairley (05-02-2019), DianeB (10-14-2015), Headbanged (10-22-2015), lagoode87 (10-28-2015), Lara (10-12-2015), thorx89 (10-20-2015) |
10-17-2015, 08:08 PM | #124 | ||
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Legendary
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I think I figured out SLP, Speech-language pathologist. They are helpful for some but not everybody. Some need the help of a behavioral optometrist or similar specialist.
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"Thanks for this!" says: | Brenda1964 (01-17-2019) |
10-23-2015, 12:33 PM | #125 | ||
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New Member
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I wish I knew the following post-accident, post MTBI.
1. Doctors will tend to ignore invisible disabilities and try to tell you nothing is wrong. Fight for yourself. Go to Patient Relations if necessary. It took me one year with Kaiser before I got help with a Neuropharmacologist, physiatrist, etc. 2. Get a lawyer who handles disabilities. He/she can help you. I struggled for years losing jobs, getting fired, etc. and finally got on Disability. I was no longer able to focus, my short-term memory was bad, and my emotions were not well controlled. All caused big problems at work. 3. Learn all you can and hook up with a community such as this. Get into a support group. Don't let people tell you "you are fine". 4. DO NOT PLAN TOO MUCH OR PUT TOO MUCH ON YOUR SCHEDULE. GIVE YOURSELF PLENTY OF QUIET TIME. Being overwhelmed cognitively by driving, noises, demands, etc. aka "Flooding" is something I am currently dealing with. 5. Have more than one calendar. 6. See a Neuropsychologist and get a full battery of tests. Costs about $800 but well worth it. It pretty much assured me my Disability award. 7. Seek people who are supportive. You can do this. Grace F |
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"Thanks for this!" says: | AlmaVera (11-04-2015), Brenda1964 (01-17-2019), Concussed Scientist (02-07-2016), crfairley (05-02-2019) |
10-23-2015, 04:09 PM | #126 | ||
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Legendary
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A full battery of NeuroPsychological Assessment tests can cost up to the $4000 range. Insurance may leave you paying $800 as your share.
But, a good NeuroPsychological Assessment by a NeuroPsych who is not biased against mTBI will be worth it. |
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11-04-2015, 08:47 PM | #127 | ||
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Junior Member
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I feel very lucky to have her. |
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11-04-2015, 11:04 PM | #128 | ||
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Junior Member
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Yes, I also looked into NeuroPsych and was quoted $5600 by a provider in NYC. Who has that kind of money lying around for tests? Not even treatment. The results would be something I'd be bringing to my PCP if I were to participate with this provider. Madness.
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11-06-2015, 05:06 PM | #129 | ||
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Junior Member
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If you have hired someone to work for you, make them earn that money! Seriously, though, I'm not someone who goes to lawyers (the only other time was for my divorce), but I know I wouldn't have been able to deal with two insurance companies myself, while recovering from a head injury. Your lawyer can ask for a copy of the other driver's policy and see exactly what is covered -- that might help pay for missed work time for you, plus medications, doctor visits and tests, physical therapy, etc. |
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"Thanks for this!" says: | Brenda1964 (01-17-2019), lilyNYC (11-06-2015) |
11-06-2015, 06:03 PM | #130 | ||
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Junior Member
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Shoot, no no no. I keep meaning to find help on this. Thank you for reminding me. I'm actually applying for FMLA so hopefully this will help with any lost wages if I am approved.
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"Thanks for this!" says: | AlmaVera (11-07-2015) |
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