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Hello, and welcome to my thread about brain injury. Ask me anything you like, I'll try to answer it to the best of my abilities. Some of my memories are hazy regarding my hospital visit, maybe because I repressed them, maybe because they gave me amnesic drugs to make me forget. If I get any of the medical facts wrong, I encourage you to correct me. In 2007, I was jumped by an undisclosed number of people while with my friends, all of whom ran in different directions, aiming to not end up where I did. I don't remember anything from that night, nor do I remember much of the day before, and I can't say for sure how many people were directly responsible, but my friends recall seeing a group of about 5 people running after me while running for their lives. While my friends made it out with a mild case of PTSD, one skull fracture and one severe concussion, I ended up with 5 cranial fractures, a subdural hematoma (bleeding in the lining of the brain), a broken nose, a broken right brow, 2 facial fractures, a severely-bruised ribcage and, inexplicably, my left ring finger fingernail disappeared at some point that night. Approximate timeline of events: Friends return to my buddy's house, realize they don't know where I am and nor does anyone else. They go looking for me, find me in a ravine. A friend moves me up out of the ravine onto a sidewalk, and calls my parents. Fun trivia: I bled quite a lot on that part of the sidewalk, and the blood stain was there for about 3 years afterward. Parents call an ambulance, it does not arrive. Parents call 2 more ambulances, which do not arrive either. Parents decide to take me to the hospital themselves as the system has clearly failed and I'm running out of time. I'm driven to a smaller, closer hospital and stabilized, then moved to another for intensive care. At this point, I'm intubated (breathing tube) and a machine begins to breathe for me. The reason for this is that I was given pancuronium bromide, which paralyzed my lungs and diaphragm. This is the same drug administered to victims of lethal injections. Incidentally, each day you have a breathing tube in increases your chance of pneumonia by about 75%. I had one for 2 weeks. This is a standard procedure for a severe traumatic brain injury; the fight-or-flight mechanism embedded deep in your instincts comes out and you thrash and squirm with inhuman force. It took 5 250lb adults to hold me down enough for the nurses to give me the paralyzing agent, and I'm only about 5'9" and, at that point, having come from a summer of back-to-back oral surgeries, weighed a jaw-dropping 105 lbs. At this time, I was operated upon by a neurosurgeon, to perform an emergency craniotomy. During a traumatic brain injury such as this, your brain's natural response is to swell up, and, if not for the removal of most of the right side of my head, it would have swollen to the point where I would suffer much more severe brain damage, or die. The operating surgeon described the bone shards, dozens of them, that he removed from my skull (and brain) as looking like the bottom of a bag of chips. After having the craniotomy, my fight-or-flight response is still very much present upon waking from anaesthesia, and I'm put into a chemical coma. The extreme thrashing and writhing provoked by an impossible surge of adrenaline was causing my intracranial pressure to spike, which is dangerous because there may be damaged tissue/blood vessels waiting to hemmorrhage or cause an aneurysm in the brain. At this point, I'm hooked up to a machine that pumps cold saline solution into my blood, to regulate my body's temperature while it is unable to. This, in part with the speed at which we arrived at the hospital (in spite of 911's lack of effort), is no small part of why I recovered so well. A jugular venous bulb, also known as jugular venous oximetry, was inserted as well to monitor oxygen use in the brain. My first memory is briefly waking up from the chemical coma, with a breathing tube down my throat, coughing up huge amounts of phlegm from the pneumonia I contracted. The amnesic drugs they gave me to make me forget did not work as intended. An interesting side effect of this medication is the desensitization of acetylcholine nicotinic receptors. After waking up and feeling like I didn't give a gently caress, I smoked cigarettes. But they did nothing to me, except make me dizzy from oxygen deprivation and carbon monoxide. No nicotine buzz or satisfaction of any kind. I gave that up pretty quickly. I had some weird/interesting experiences while in the chemical coma. At times, it felt as though I was awake, but in a dream world/version of my hospital room. I had a dream, if you want to call it that, about using a nintendo DS; later I found out they did bring me a DS, but I never actually interacted with it (being in a coma and all). I had another dream, where I was sitting up in bed in a brightly-lit room, with a stack of magazines on the bedside table that swings over your bed, and a magazine open to a certain page. Later, when I woke up, I was in that room with that same stack of magazines and the same magazine open to the same page. I also had a dream that I was being walked down the ward by two nurses supporting me under the shoulders on either side, taking me toward something I couldn't make out. When I was well enough to move to the rehab ward, I was moved in this manner by the nurses, and I recognized the ward even though I had never been there before. You could easily attribute this to the severe brain injury, or to some weird cosmic hippie poo poo, whatever's your style. But I'm getting ahead of myself. The part of my skull that was removed is known as a bone flap, and it refers to a number of bones on the side of your head. For the purpose of simplicity, place your right hand on the side of your head with your fingers together. The size of your palm, depending on your hand/head size, is approximately how much of my skull was reduced to shards. The aforementioned shards, or one of them, ended up stabbing into my temporal lobe, near my ear. Consequently, they removed a piece of my temporal lobe approximately the size of a fresh pink eraser found on those pencils you used in school. After waking up from my coma, I was completely unable to walk or talk. I would try to speak to my friends and family, waiting with trepidation by my bedside, who were told that I would either not make it to Christmas (injured in September), or that I would wake up as a poor damned soul confined to a wheelchair, unable to do anything but rock back and forth, drool, and make awful noises for the rest of my life. I would hear myself speaking normally in my head/in my own ears, but it was a garbled mess of unintelligible sounds and syllables to everyone else. For a week or two afterward, I was able to communicate only by writing my thoughts down. This is not only scary, but immensely frustrating as someone leans over your shoulder midsentence to try to guess what you're trying to say in an effort to help you out. Every day you stay in a chemical coma, you develop the risk of bed sores, and you lose about 1% of your muscle strength. Having lost at least 14% of mine, I spent several weeks in physical therapy, testing and honing my balance and hand-eye coordination. Interesting note: I'd done gymnastics for about 5-6 years as a kid, and yet prior to the brain injury I could barely spend 5 seconds on a balance board before falling to one side or the other. Post brain injury, I was able to stand for 30 seconds at first, then later 2 or 3 minutes. During the coma, I was also in a special bed with air cushions that deflate and inflate periodically to ensure no pressure is keeping blood from flowing to an area, to prevent bed sores and clotting. I was also given heprin, a blood thinner, twice a day via intramuscular injection and had cuffs on my legs that also inflated and deflated to help stimulate blood flow. Because I was unable to talk, I was also unable to eat or drink. I woke up from a 2-week coma having drank nothing at all, and was not allowed to drink anything for between a week and two weeks afterward. I was allowed to have a cup of water by my bedside, into which I could dip some green sponge-on-a-stick type affair to rub around inside my mouth to keep it moist. I worked with a speech-language pathologist for those weeks, learning to speak again day by day. After what I believe was two weeks (this whole time is somewhat of a blur in my memory), I was given the chance to eat solid food, and had my feeding tube and saline drip removed. Since I failed to choke on it, I was given the all-clear to do what I wanted more than anything in the entire world at that point: drink some loving water. It was the best day of my life (relative to the recent events), and my friends still recall with fondness that they had never seen someone so happy to be told they could drink water. Generally, at this point, the surgeon(s) will collect your skull and put it back together. Since mine was too badly damaged, I underwent a large number of highly-precise and detailed MRIs, CAT scans, and x-rays, in order to create a 3D-printed prosthetic plate that would fit me perfectly. Until it could be created, however, I was sewn up without bones on the vast majority of the side of my head. I had hair, scalp, dura(s) and that's about it between the outside world and my brain. If you ever thought you got some weird looks in public, try walking around for 6 months missing part of your skull, while shaved bald with an incision held together by staples. After 6 months, they put the PEEK (polyether ether ketone) plastic prosthetic plate in my head. This is where the fun begins. PEEK is a widely-used material in prosthetics for its biocompatibility. It is rejected less often than other plastics by the body, but I fell into that small portion of persons for whom a negative result is achieved. For a bout a month, it was fine, though I could not shake the feeling that there was an alien piece of plastic in my head, and it felt very strange when I touched my scalp, like a basketball-type texture. This is intentional, to allow/aid the dura to bind to the plastic as it would to your skull. Then, my head began to swell up with a mystery fluid. It was like a ziploc bag full of milk between my prosthetic and my scalp. At first, doctors thought it was a normal reaction to the foreign body. A few weeks afterward, I woke up in the middle of the night to find my head was gushing strange orange-yellow-clear fluid onto my pillow. We would go to the hospital, it would get stitched up, and we would be told to come back if it happens again. It happened again about 5 more times before someone got the brilliant idea to take a sample of it; it turned out to be seroma, a pocket of clear serous fluid, which is essentially blood plasma. I was given a spinal tap, to check the colour and consistency of my cerebral-spinal fluid. These are actually not nearly as bad as you might think, you simple lie on your side in the fetal position and feel a dull pressure in your spine and it's over. They gave me ativan for this, but I really felt like it didn't do anything for me. While getting up to go to the bathroom, it came out as it caught on the bed railing. The nurses gave me hell while putting it back in, warning me of the plethora of diseases I could have contracted through my straight-into-my-brain-fluid hole in my back. Several days later, in a fit of oxycodone and brain injury-fueled rage, I ripped it out in an act of defiance. They were very very angry with me, but gave me yet another spinal tap/lumbar puncture. After this I was alright for several days, until I got up to go to the bathroom and accidentally pulled it out again. At this point the nurses were fed up with me and ignored my (and my family's) cries for help. Spinal fluid was leaking out of my back, and I was in literal blinding agony. I've never felt that much pain in my life. Something that was explained to me, not in great detail and I'm probably getting this wrong, was that your brain is not unlike a sponge sitting over a drain in a sink. If enough of the liquid drains to the point where the sponge/brain closes off the drain, you die. It took 3 days for the nurses to listen to us and remove the tap for the last time. After the spinal taps, I had a shunt installed with a balloon attached to it inserted under my scalp to drain the seroma, as the spinal tap had not alleviated the swelling in my head. I had a rubber tube attached to a rubber balloon that looked not unlike the pump for a blood pressure cuff hanging off my head for about a week. When they pulled it out, they literally just pulled it out from under my scalp, leaving a weird depression on top of my head for several hours. They stitched it up and it was on to the next adventure. During the time when they were testing my CSF samples, they found out I had MRSA (Methicillin-resistant staphylococcus aureus), a hospital-born superbug, inside my head. I got up to go to the bathroom, waited long enough after sitting upright for my blood pressure to equalize throughout my body to avoid a head rush, and found myself losing vision and blacking out. I was then given a PICC line (peripherally inserted central catheter). This involves an ultrasound of your arm, to locate the largest artery, then a very wide-bore needle being inserted into it, which then feeds a tube roto-rooter style into your chest cavity, where it rests near your heart. Then, I was given (attached to) a small electric pump that ensured I was given 1 gram of vancomycin (a drug of last resort, essentially the most powerful antibiotic we have) every day. For 6-8 weeks, I lived with a fanny pack that contained a small electric pump that would periodically make noise as it pumped me full of drugs, and nurses would come every other day to change the batteries and ensure proper function. For these 6-8 weeks, I was plagued with unbearable, godlike nausea. I would wake up and spend the first hour of each day retching or vomiting up nothing over the toilet. After these tests, and consulting with brain surgeons around the world, the surgical team charged with my care decide to remove the bone flap and leave it out for six months, at which point they would operate on me again, deciding right then and there on the table if I was to be reconstructed with titanium plates and screws, or if they would give me a titanium mesh to replace the bone (think a screen door, but titanium). It was decided that their opinion from 1.5 years ago was perhaps a hastily-made one, and the bottom-of-a-bag-of-chips that was my skull was reconstructed with 30 titanium plates and 60 titanium screws. After this surgery at around 6 pm, I went to bed in the hospital for overnight monitoring. The next day when I woke up, all of my pains, aches, the blinding migraines and chronic back and neck pain I was plagued with, disappeared completely. In fact, I took a single tramadol and checked out under my own recognizance. After living on 3-400mg of oxycodone per month, I was completely free of pain and the need for painkillers. It was as though my body recognized the parts of my skull that had been sitting in formaldehyde in the hospital basement for almost 2 years and decided that everything would be ok, and it was. Until a year later, when I had my first seizure. I had developed epilepsy as a consequence of the brain injury. Ironically, the temporal lobe operation I underwent is very very similar to one often performed to cure or alleviate epilepsy in patients with severe conditions. I have full-on grand mal, tonic-clonic seizures, lasting 1-2 minutes at most. In spite of 5 craniotomies, a 2-week chemical coma, and some strangers' best efforts, this is the most deleterious longterm complication I ended up with. I ended up with OCD as well, but that's easily managed by medication. All things considered, I'm an extremely lucky person. I have no visible handicaps, and no fine motor skill problems, or memory or sensory processing issues that plague brain injuries in general, but especially injuries to the temporal and parietal lobes. In fact, I signed papers to allow my medical files and treatment information to be used in teaching hospitals and case studies, as, according to every doctor I had spoken to, nobody had incurred such a severe brain injury and recovered so miraculously with so few deficits. Don't be shy. You won't offend me, ask anything you like. If you have a brain injury story, don't be afraid to share, either. I started this thread to answer any and every question I could, and because everyone I've told about this wanted to know more.
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Jun 29, 2015 04:36
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So who beat you up? Some folks you knew or just a random rear end-beating? Does your brain injury make you put in all those line breaks?
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Jun 29, 2015 17:49
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They're called paragraphs.
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Jun 29, 2015 18:22
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Jesus gently caress dude. All I had to do was get blown up a few times to get diagnosed with a severe TBI. Did your friends ever tell you why you were being chased by a group of people?
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Jun 29, 2015 18:23
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bitcoin bastard posted:They're called paragraphs. Not those line breaks.
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Jun 29, 2015 19:32
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This is fascinating. I had a traumatic brain injury in 2004 when I fell off a horse face first into concrete. When I tell people I don't remember any events from that day, or the few days I spent in the hospital, I don't feel like they believe me, like amnesia is only something that happens in soap operas. I also experienced the panic response you talked about in the hospital. I had to be restrained because I kept ripping out my IVs and breathing tube. I had a nun come to visit (I went to Catholic school) and I was told I gave her the finger. Your story is so much worse than mine and I'm glad you made it through to talk about your experience. Do you have any pictures of your recovery process? Are you at all a religious person? Did this experience change that at all?
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Jun 30, 2015 00:34
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MonkeyBot posted:Not those line breaks. I'm looking forward to hearing more about your experiences living with what is evidently also a traumatic brain injury. But yeah, I'd also like to know more about the circumstances leading to the OP's injury. What the heck happened to make a bunch of guys want to beat you up so badly? Have the perps been arrested? Did they get what should have been coming to them (attempted murder)?
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Jun 30, 2015 02:20
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That's a horrendous story OP. Also I can't imagine calling three ambulances and each time they don't show up, while your child lies dying in a ravine. Some Qs: Why did you only weigh 105 lbs? Even at 5' 9" that's pretty loving seriously underweight - what oral surgery was that about? Also seconding the question as to any explanation for why a bunch of people tried to murder you. Do you think differently to how you did before, or feel exactly the same? Do you approach life any differently?
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Jun 30, 2015 11:12
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It's kind of nice to hear things from the other side. I am actually a neuro nurse that deals with some of those issues. All I can say is, gently caress NG tubes and I hope you never had to have one. Those things are a pain in the rear end for both the patient and the nurse.
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Jun 30, 2015 21:57
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I dunno if this helps, but I also had/have a brain injury in the form of Cerebral Palsy. I have no idea if it was traumatic or not. Also, for the OP: Are you able to work at the moment? Is anybody going to be pressing charges/damages?
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Jul 1, 2015 00:34
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After reading all that I am so happy you are alive and surviving with us. Have you tried marijuana to help with the seizures?
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Jul 2, 2015 14:49
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MonkeyBot posted:Not those line breaks. I suspect that those are caused when a post is copy/pasted from a word processing application.  I have a friend who had a TBI from a car crash some time before we met. She has memory issues and migraines due to it, and a lot of titanium in her skeleton as a whole, so Terminator jokes abound. Apparently her doctor described what was left of her skull as Rice Crispies. Thank you for your post, I've never asked her about what it was like going through all that, because, it's an odd subject to bring up.
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Jul 2, 2015 15:01
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Well that's a hell of an adventure you had.  How does bathing work when at any moment, almost without warning, your brain could flip the gently caress out and cause you to fall over? If you do that in the shower you're probably toast. Jesus Christ just thinking of it makes me imagine my head slamming into a metal faucet and I've never had a seizure in my life (knock on wood  ).MonkeyBot posted:Does your brain injury make you put in all those line breaks?
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Jul 2, 2015 15:34
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Reading this has made me think of an A/T thread from probably 5+ years ago. It was a goon posting on behalf of his friend, his friend had been in a car crash and suffered a brain injury. He remembered everything from before the crash, but anything after the crash would go into his short term memory for about 15 minutes, then fail to be committed to his long term memory or whatever and 15 minutes later he'd have no recollection of it. He used to live through his day by keeping two notebooks in his pockets, one for like daily routine stuff like "its midday, go have lunch" and the other for appointments and arrangements and whatever. He just used to live out his day by repeatedly opening his books and reading them to see if he needed to be somewhere. One thing I particularly remember from it was that his mother died after the crash. 15 minutes later he forgot why he was even crying and had to be told again. Some days he'd wake up and be like "Oh I'm going to see my mother today" and his mate would have to break the news to him for the 30th time and watch him break down crying as if it was the first time he heard it. Rinse repeat for 4 months or something until he finally managed to commit it to long term memory.  Does anyone remember this thread or have a link to it as I'd really love to read it again Ahdinko fucked around with this message at 17:12 on Jul 2, 2015 |
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Jul 2, 2015 17:10
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Jesus, that's absolutely horrifying. I heard, more or less, what had happened, but none of the details until now. I'm glad you've come through it as well as you have, and sorry for being a bit of a lovely friend who didn't stay in touch.
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Jul 5, 2015 04:26
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Woolie Wool posted:You're a piece of human garbage, get out of this thread. I was here first.
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Jul 6, 2015 20:53
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MonkeyBot posted:So who beat you up? Some folks you knew or just a random rear end-beating? Does your brain injury make you put in all those line breaks? Some random people who had beef with some people who were not I nor my friends, but not stop to check IDs. Improper formatting of internet forum posts is a common TBI side effect. LCL-Dead posted:Jesus gently caress dude. All I had to do was get blown up a few times to get diagnosed with a severe TBI. The way it was relayed to me was that it was essentially random, none of my friends nor I knew these people nor had previously spoken to them. They more or less decided that since they couldn't actually identify whoever it was they legitimately (in whatever sense of the word) had beef with, they'd settle for some strangers. Violet_Sky posted:I dunno if this helps, but I also had/have a brain injury in the form of Cerebral Palsy. I have no idea if it was traumatic or not. I'm currently able to work part-time, 3 or 4 days a week at 4 hours each. The last time I tried to work a full week with 8-hour days, I ended up having a seizure, so we figure it's best to take it slow until we can get that fully under control. Our local police district did manage to identify and charge a number of the people involved, but they conducted the investigation improperly by asking the witnesses/suspects leading questions, which resulted in their evidence being inadmissable in court. As a bonus, Canadian law is such that, even if I were to find one of their cell phones with a video of them doing it with GPS metadata and all that, it would be illegal to try them again for the same crime. goodness posted:After reading all that I am so happy you are alive and surviving with us. I'm a regular marijuana user, but I haven't been able to get a medical license that would let me grow a specific strain that's designed for epilepsy. I'm pretty sure it helps, but as I can't (as yet) get a neurologist to endorse it, I can't say for sure. JustinMorgan posted:This is fascinating. I had a traumatic brain injury in 2004 when I fell off a horse face first into concrete. When I tell people I don't remember any events from that day, or the few days I spent in the hospital, I don't feel like they believe me, like amnesia is only something that happens in soap operas. I also experienced the panic response you talked about in the hospital. I had to be restrained because I kept ripping out my IVs and breathing tube. I had a nun come to visit (I went to Catholic school) and I was told I gave her the finger. I have some pictures somewhere from one of my craniotomies, where one of the surgeons took pictures of my dura mater and various parts of the surgery, I'll try to dig them up. As for religion, I'm not religious, but it certainly gave me a new perspective on life, and appreciation for it. I lived in a fairly safe neighborhood, or so I believed, and the incident actually happened 3 or 4 blocks away from the mayor at the time's place of residence. It's something you imagine could never happen to you, until you wake up in the hospital unable to speak. blackguy32 posted:It's kind of nice to hear things from the other side. I am actually a neuro nurse that deals with some of those issues. I figured there would be some appreciation from the nursing/medical end; for the first few years that I was well enough to be back at home and piecing my life back together, I would go and visit the ICU that saved my life and thank the nurses in person for taking such amazing care of me. Basically all of them broke into tears of gratitude and joy, because they figured I would never make it this far or do this well, and they only extremely rarely get any kind of followup or closure in either direction on this kind of thing. I only stopped going back after the hospital changed the vast majority of their ICU staff, and those who remain have lost memory of my case in the wake of the flood of damned souls like myself. Soul Reaver posted:I'm looking forward to hearing more about your experiences living with what is evidently also a traumatic brain injury. As far as I, and my friends, are able to tell and remember, it was a case of either mistaken identity or simply a bunch of drunk and/or coked out high school kids looking to add some kind of twisted variety to someone's lives. Jeza posted:That's a horrendous story OP. Also I can't imagine calling three ambulances and each time they don't show up, while your child lies dying in a ravine. Early in the summer, I had my wisdom teeth out and was on a liquid/eat-through-a-syringe diet, immediately followed by a jaw realignment surgery that left me in the same boat for another month and a half. I was always a pretty small, skinny dude, but nothing like when I ended up in ICU. I think differently in that I have hypervigilance arising from PTSD and OCD arising from the brain injury, and I certainly have a newfound appreciation for how much shittier your life can get, no matter how lovely it may appear at the time. My sense of humour and outlook on life are largely the same, but with a greater dose of trepidation and forethought. My friends and family remark that I'm actually a much nicer guy than I used to be, which is, I'm told, the opposite of the way many of these types of injuries turn out. Woolie Wool posted:Well that's a hell of an adventure you had. It's always a bit of a gamble, since my last two seizures occurred essentially out of nowhere as far as we're able to tell. Each one is preceded by an aura, much like a migraine aura, a feeling of distinct disconnection and dissociation from your environment wile simultaneously feeling a bizzarre sense of deja-vu, as though you had already experienced this. Occasionally, I'll have a slight deja-vu moment that isn't related to an aura, and have to pause and wonder if I'm going to seize. Thankfully, out of the hundreds if not thousands of deja-vus I've had, only 7 have resulted in seizures. I agree wholeheartedly with the shower sentiment; I had a wicked aura (spots in my vision, hands tingling, arms numb, dizziness) in the shower once or twice and it was very frightening for the reasons you described. There's a lot of very solid, unyielding objects in the shower, not to mention the corners on the faucet and the possibility of becoming unconscious and drowning in a half-inch of water. These days, I'm doing well with a new supplemental medication that's been very good with few side effects and has kept the auras and seizures under control.
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Jul 7, 2015 00:38
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Do you have a soft spot now on the side of your head? Or are the titanium plates relatively inflexible in place? Wow.
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Jul 7, 2015 04:06
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Amnizu posted:Some random people who had beef with some people who were not I nor my friends, but not stop to check IDs. Improper formatting of internet forum posts is a common TBI side effect. I have not had a TBI... But I am diagnosed with partial complex seizures... And your description of dissociation from environment and some pretty wicked déjà vu is very drat spot on with what I experience.
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Jul 7, 2015 22:52
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SSH IT ZOMBIE posted:Do you have a soft spot now on the side of your head? Or are the titanium plates relatively inflexible in place? I had a soft spot for about 6 months to a year while the bone flap was missing, but the titanium plates hold the jigsaw of bones in place pretty firmly. It does flex a little bit in some places and my head is definitely not symmetrical anymore, though.
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Jul 7, 2015 23:07
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I treat patients with TBI; everything from mild to severe. It loving sucks (for the patient) and I really really feel bad for people that were once at one level having to go back to square one and learn basic stuff all over again. The good news is, a lot of stuff has the potential to resolve on its own post-injury and more so depending on how young someone is. The younger the brain the better. Also, everyone's brain is very unique so one person with a mild TBI may have a different set of problems or certain problems that are more severe than others compared to someone else with a mild TBI. The most common issues I see (at least with my patients so far) are individuals with behavioral/impulsivity issues, maintaining attention, short term memory issues, and procedural memory issues. For example: Behavioral issues: Becoming extremely frustrated in situations where minor problems arise where near violent outbursts occur. If a patient gets lost in the hospital trying to find a clinic, he/she may start yelling at staff and threatening physical violence. It's more of a panic response and has absolutely nothing to do with how good/bad the person is from a moral standpoint. Their brain isn't working as well as it should. It's not their fault. Think of the panic you might of experienced as a child getting lost in a department store and being unable to find mom or dad. Your brain is in full fight or flight mode and can't process poo poo until becoming calm. Impulsivity issues: Having a conversation with someone with a moderate TBI is always interesting because they will not let you get a single word in unless you gesturally cue them to stop talking and to listen to you. When you let them know their speech rate and their lack of ability in recognizing when to allow a conversational partner to have a turn, they ARE aware of it. You work with them to become even more aware of it to the point where they can self-monitor independently. They actively have to put forth the brain power to self-monitor and that is not at all easy. It's somewhat similar to high level people on the Autism Spectrum in that way however with the MAJOR exception is that the patient is definitely aware of it after the fact and is apologetic about it. Maintaining Attention: Individuals with TBI have a hell of a time maintaining attention. As someone with ADD, I can kind of relate to that. You break up complex multistep tasks into more simple manageable tasks. For example, Going to the Grocery Store. It's pretty loving simple for the normal population at first glance but is actually a pretty in depth task. You have to make a list of things you need. You have to arrange for transport to the store. You have to look at signs to help you find the things you need. If you get lost, you need to ask for help. You have to double check your list and make sure you got everything. You then have to go to the cash register and pay. You have to have the right amount of money on you. When you leave, you have to find your car/call for transport. NOT easy when you have a TBI to do all that without getting distracted. Short Term Memory: Forgetting thing immediately after being placed in short term memory. Very well organized memory books containing things like contact information for important people, lists of tasks to do today, lists of future appointments, phone numbers, email addresses, phone messages, etc. Relying on a memory book is not shameful and frankly, the world would probably be a better place if everyone had one. If someone says something important you want to remember, write/type it out IMMEDIATELY. Procedural Memory: Forgetting how to do previous tasks that the individual could do automatically. In severe cases it could be the steps involved in turning on and driving a car. In other cases, it could be something like forgetting the sequence of steps required to access a word processor or email app, maybe the steps required to rebuild parts of an engine, etc. (again depends on the severity). Repetition of these tasks along with reminder checklists detailing every single step are excellent ways to compensate for this. I highly recommend anyone with a TBI seek help from either a psychologist, neuropsychologist, or a speech therapist. Although no one can promise things will resolve to where they once were, individuals with TBI can at least be taught compensatory strategies that will allow them to be much more functional and independent in society and in successfully completing activities of daily living. Also as time progresses after the traumatic incident, deficits "sometimes" will begin to resolve on their own. There is hope.
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Jul 8, 2015 10:58
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Now I'll never be able to tell the difference between a TBI and being coked up, damnit.
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Jul 8, 2015 11:02
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You mentioned that you were lucky and have no visible handicaps. Does this surprise people who learn about your injury? Do people automatically assume that you lost 30-40 points of IQ and a good portion of your motor control? Do people tend to treat you any differently now? On a lighter note, do you have any amusing metal plate in head-related metal detector stories?
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Jul 8, 2015 12:30
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Soylent Yellow posted:You mentioned that you were lucky and have no visible handicaps. Does this surprise people who learn about your injury? Do people automatically assume that you lost 30-40 points of IQ and a good portion of your motor control? Do people tend to treat you any differently now? It surprises basically everyone I tell the story to, yeah. I assume that based on my appearance, most people assume that I've lost a good portion of my IQ and my motor skills and eloquence. I'd like to think this isn't the case (most days). Sometimes I get the feeling people are patronizing me somewhat based on my appearance, but it doesn't really bother me/I don't notice enough for it to be a huge issue. The way I see it, 9/10 people have you judged up and down as soon as you enter their field of vision. It's simply up to you to not meet their expectations.
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Jul 18, 2015 06:40
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Jeza posted:Why did you only weigh 105 lbs? Even at 5' 9" that's pretty loving seriously underweight
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Jul 18, 2015 06:53
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I had a seizure once after striking my head. I found the response of the ER and physicians to be total horseshit. They pumped me full of Ativan to the point that I was barely able to stay awake and was having closed eye hallucinations. The doctors didn't listen to me when I told them it was happening. I hardly remember my time in the hospital and it was very traumatic to realize days later that I wasn't myself. I thought that the EEG was pumping thoughts into my mind at the direction of the technician. Also, for some reason, my artwork became more detailed and I could speak French really well for a while. Brains are weird. They also wouldn't let me walk around, wouldn't change my IV so it was bleeding like crazy because it was mis-placed. My bathroom didn't have hot water and they had wedged a stool in the shower so I couldn't get in. I had to take a hookers bath. They also woke me up every half hour to tell me that I should try to get some sleep. Yay hospitals!
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Jul 25, 2015 03:59
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OP that is a hell of a story, I'm sorry that happened to you. You have said you acquired OCD. This is fascinating to me as someone who has simply always had OCD. How severe is it, and how does it manifest? You said it's easily controlled with medication; is this medication an SSRI? SSRIs are the only drug I've ever been offered for any mental disorder and I find that they have a negligible effect on OCD and anxiety, only being significant in alleviating depression for me. JustinMorgan posted:This is fascinating. I had a traumatic brain injury in 2004 when I fell off a horse face first into concrete. When I tell people I don't remember any events from that day, or the few days I spent in the hospital, I don't feel like they believe me, like amnesia is only something that happens in soap operas. Yeah I don't know why, but amnesia of any kind (even the most benign kind, getting blackout drunk) seems oddly unbelievable to people who haven't experienced it. I guess it's just so foreign to the way the mind and memory usually works.
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Jul 25, 2015 09:11
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Weldon Pemberton posted:Yeah I don't know why, but amnesia of any kind (even the most benign kind, getting blackout drunk) seems oddly unbelievable to people who haven't experienced it. I guess it's just so foreign to the way the mind and memory usually works. when i had my first seizure i distinctly remember one moment being on my computer and the very next instant i was in front of a police officer, on the landing, mid-sentence and yeah it's not exactly easy to explain to people that it wasn't just a period that i hazily recall, the time in-between is simply not there for me.
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Jul 25, 2015 16:46
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Rickycat posted:when i had my first seizure i distinctly remember one moment being on my computer and the very next instant i was in front of a police officer, on the landing, mid-sentence and yeah it's not exactly easy to explain to people that it wasn't just a period that i hazily recall, the time in-between is simply not there for me. as a person who unfortunately gets blackout drunk too often (only a couple times this year, yay!), i can tell you that blackout drunk isnt quite like that its hard to describe, but its not a hard on/off switch (unless you got blackout by chugging a bottle of liquor or something), its more of a fuzziness your long term memory is still working during the fuzzy phase, but its not making the usual links between ideas that you do when youre sober, so you wont remember anything about a <event that happened during fuzzy phase> until someone asks you about that specific <event>, and you remember it perfectly
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Jul 26, 2015 03:18
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Have you heard of / looked into getting an epilepsy dog? Or whatever the technical term is.
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Jul 27, 2015 00:41
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Weldon Pemberton posted:Yeah I don't know why, but amnesia of any kind (even the most benign kind, getting blackout drunk) seems oddly unbelievable to people who haven't experienced it. I guess it's just so foreign to the way the mind and memory usually works. I've done both, and getting blotto does still entail some memories - going out and starting to drink, and various memories that invariably come back over the following days, usually to great embarrassment. With my accident, I lost all memories from about a week beforehand - just woke up in a hospital bed months later with no memory of how I go there, and retrograde amnesia on top of that (just like Memento, only without the tattoos). I had no clear sense of identity, in that I did not really know who I was - I knew my name and my work and friends, but I didn't know who I was as a person. I also wound up with large patches of missing memory, like completely forgetting about certain people, and I had to teach myself PHP again. The retrograde amnesia did clear, but the missing memories never came back. With help from my awesome friends and family I found myself in a situation where I could decide who I wanted to be, which wasn't an experience I would wish on someone but did seem to work out well for me in the end. I did also battle for some time with depression, which is apparently pretty common with TBI. Like the OP, people did tend to step on eggshells as I started getting back into my work, but it was good to be able to prove that I was still able even though dealing with the crutches for a while was a huge pain.
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Jul 27, 2015 09:43
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Masked Pumpkin posted:I've done both, and getting blotto does still entail some memories - going out and starting to drink, and various memories that invariably come back over the following days, usually to great embarrassment. Yeah the couple of times I blacked out, I only missed a couple of hours or so, and completely remembered everything up until (I assume) my BAC was high enough to prevent forming new memories. Permanent and temporary anterograde amnesia is easier to get a hold on because you can reason that "I wasn't forming memories any more due to impairment from booze/an accident/whatever". Retrograde amnesia must be more like memories being deleted- presumably just before your accident you had memories of the previous week, but now you don't. It's a spooky thing to contemplate that parts of your memory, personality and intelligence can just be gone in an instant like that if something unfortunate happens. How do you decide "who you want to be", if you don't mind my asking? Surely this would involve just doing things that appeal to you. Did you find yourself drawn to careers/interests/people you apparently weren't interested in before your accident?
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Jul 27, 2015 17:28
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Weldon Pemberton posted:Yeah the couple of times I blacked out, I only missed a couple of hours or so, and completely remembered everything up until (I assume) my BAC was high enough to prevent forming new memories. Permanent and temporary anterograde amnesia is easier to get a hold on because you can reason that "I wasn't forming memories any more due to impairment from booze/an accident/whatever". Retrograde amnesia must be more like memories being deleted- presumably just before your accident you had memories of the previous week, but now you don't. It's a spooky thing to contemplate that parts of your memory, personality and intelligence can just be gone in an instant like that if something unfortunate happens. Thanks to your mention of it, I did some googling and found I'd been using the words wrong - for reference, Anterograde Amnesia stops you from forming memories, while Retrograde Amnesia prevents you from remembering things from before the amnesia took effect - just like you described   It was spooky, but since I had no frame of reference, I wasn't frightened by it. It's hard to explain - when I read about Capgras Syndrome I felt I could sympathise a little, only the person who had been replaced was me! I went from having a great flat, a new business and a rocking little motorbike to finding myself in hospital, unable to get out of bed and no idea how I got there. People kept telling me, but it took a very long time for that to sink in. My flat was gone (lease was almost up when I had my accident, I haven't seen it again), my bike was gone (I did see it again months later, it was half it's length and crushed up on itself) and no one wanted to talk about my business.  I had my friends and family around me, but I kept forgetting that I'd seen them and so all I could work with were constant assurances that I would be able to get out and walk again, and a memory of this person I used to be, but felt no connection to now - my fitness and strength were gone, replaced by a wheelchair and then crutches, and a left arm that just didn't work properly - Firespinning was a passion of mine, and that, with my arm, was gone. When the anterograde amnesia finally lifted, I was able to use my phone and access Facebook - the outpouring of support from friends on a page they'd set up was incredible and I still get emotional thinking about it. I also knew that I was now always going to be 'the guy who had the motorbike accident', and that was now a part of who I was. With this in mind, and with the news that my friends had stepped in to keep the business limping along and clients were eager to get me back to work again, I knew that my job was to get out of bed and back to life. Going to clients and clubs on crutches? That's just living life on hard mode  I'm still the person I was before the accident according to my friends, although my memory is not as good and my patience is more easily exhausted - I've become a lot more cynical. I still don't feel more than a distant connection to the person I was - Yes, that was me, but when I first got out of bed and started meeting people again, I felt that I was playing the part of myself rather than just being me. When faced with decisions, I felt very clearly that I could choose to do what the old me would have done, or I could choose something else - and I saw those kinds of decisions all the time. That has faded over time, but still happens every once in a while. Tl;dr - My life and surroundings changed drastically with the accident, and I felt a disconnect from the life I had to the life I now had.
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Jul 28, 2015 17:18
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Even without any brain issues after going through my cancer experience I encountered something similar. Not as profoundly I'm sure but I was floundering about in my efforts to get back to who I was, and where I was before things got disrupted. It was quite a while before with some outside assistance I determined that the old me was gone and the harder I tried to get back to that place the more frustrated I would become. I had to establish a new normal that to outside observers was probably very close to my old normal, but on the inside it didn't feel that way. Sometimes I consider who I would be right now if I hadn't gone through that 10+ years ago. The differences might only be incremental, but who knows? It's like thinking about any branching point in your timeline.
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Jul 28, 2015 18:39
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Sorry for the late responses, I thought this thread died. Weldon Pemberton posted:OP that is a hell of a story, I'm sorry that happened to you. I currently take Citalopram at 30mg a day for the OCD/depression/anxiety. It doesn't completely cut out the urges to check the door is locked or make sure the fridge is closed and the oven is off and the like, but it does significantly dull the 'need' to do it, making it more of an 'urge' or a 'want' if that makes any sense. I *want* to check the door after I leave the house, as soon as I get in the car and drive 10-15 feet, but I know that I already did and it's definitely still locked so I can move on and mentally focus elsewhere. It manifests primarily in ways like that; a product of hypervigilance brought on by PTSD. Some of it is germ-centric, like ATM keypads really get me. They just feel gross, and I feel like I can feel other people on my fingers after I use one. Sometimes I can ignore it by saying that I'll wash my hands later, then a few hours later I haven't washed them at all and everything is fine. Sometimes I can't help but wash immediately. It's much better than it used to be, a few years ago my hands were cracked and bleeding because they were so dry from washing all the time. Weldon Pemberton posted:How do you decide "who you want to be", if you don't mind my asking? Surely this would involve just doing things that appeal to you. Did you find yourself drawn to careers/interests/people you apparently weren't interested in before your accident? For the most part my interests are the same, except that until suffering a severe brain injury I never really had much interest in cars, and I like cars a lot now. It's kind of a spectator sport for me, since I'm currently not allowed to drive due to epilepsy (which is lovely, cause I own a car). Besides that, I'm largely still drawn to the things I was before; the same music, the same jobs, the same foods. Some people I've found that I just don't like for reasons that are hard to put down on paper. It's a gut feeling that supersedes logic and reason and draws from instinct. Or something like that, anyway. Dick Trauma posted:Even without any brain issues after going through my cancer experience I encountered something similar. Not as profoundly I'm sure but I was floundering about in my efforts to get back to who I was, and where I was before things got disrupted. It was quite a while before with some outside assistance I determined that the old me was gone and the harder I tried to get back to that place the more frustrated I would become. I had to establish a new normal that to outside observers was probably very close to my old normal, but on the inside it didn't feel that way. This was a big part of where I struggled. Why did it happen? Why did it happen to *me*? Why didn't I do something differently? Luckily, I'm still mostly the same as I was, but I definitely still feel a disconnect when I think about the old me, and where I might be right now were it not for what happened to me.
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Aug 13, 2015 20:58
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I thought this was really good. It starts out weird and stays weird, but it will make sense. It's Such a Beautiful Day. http://www.hulu.com/watch/777142
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Aug 16, 2015 01:56
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