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Bokito posted:OP, have you lawyered up already? Preferably with a lawyer specializing in these sort of cases? The fact that this is suggested is bizarre to me, but I'm not from your country. There's no medlegal issue here.
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Mar 8, 2016 08:23
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I'm not from the US, and not from Canada either, but the fact is that something went terribly wrong here (simple surgery -> bleeding out -> brain damage). The question is who is to blame (maybe no-one?) and who is going to pay for the long term care OP's wife probably going to need? Even in Euro-commie land where I am from this will lead to some kind of legal procedure. I know this isn't the first priority on OP's mind at the moment (and it really sucks to have think about this stuff already), but I still think it is really important to take the proper legal steps (I can guarantee you the hospital's legal department is already working on this)
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Mar 8, 2016 10:06
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she is moved to a new facility now and is steadily improving in inches every day what i mean is now if i play a video of our daughter or her or us or whatever on my phone to one side of her head, her eyes dart over after a pause and then her head follows suit. it's sort of cartoonish and really strange. anyway, so she'll stay on that side until I move my phone to the other side of her head, and then it will happen again. posturing is still happening, but i spend an hour a day working her joints and trying to push the limits of her posturing against me--joints are looser also. the baclofen does that too, decreases muscle tone which is what you kinda want in this situation. she only bit her tongue twice in three days, which is good, and they also got her mostly weaned from the vent. also i'm getting this going http://www.rehab.research.va.gov/jour/2012/497/aagpape497.html http://www.ncbi.nlm.nih.gov/pubmed/25613986 i mean, i know that the reality is that this is still pretty horrid, but she seems sorta impressive as far as improvements in this kinda situation go. Basically a week ago her eyes just sorta stared straight ahead or boobled around at nothing mostly while she jammed up her shoulders and gnashed on her tongue. i figure if i just actually do all the things that i find around therapy and make sure her meds are things that really have some level of proof of working then maybe it's not fair to compare her to all the tragedies that make up most of the stats. maybe that's what everyone says and does man i have no idea. i'm trying to get her off dumb seizure meds because she doesn't have any of those, and instead throw gabapentin into the mix since it might better help dysautonomia in combo with the baclofen. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117822/ here is a funny thing, when a loved one goes down hard from an anoxic/hypoxic event all of the doctors take all your suggestions etc if you link them studies. at first you feel really smart, then you feel super angry because why aren't you the one getting advice from them. then you kinda realize that literally no one has any faith that they'll come back from that sorta thing, so why the hell would they bother being a dingy person who pretends things are going to be ok by spending hours researching how to turn someone into a permanent burden doppleganging as a person everyone knew. which is sorta sad because man seriously . . . i am slowly accepting that this whole experience has been 50% grounded science that coming back from this isn't as likely as a TBI the other 50% being that it is a very long process and you might work your rear end off so that you get to wipe one forever. the docs must be basically "yeah ok look cool, i've seen this before and you're just going to dump this rear end in a top hat in a nursing home and divorce them in a year so . . . have you thought about letting them go instead of breaking yourself just to do that to someone." the prognosis' have started to feel like they're somewhere between a self-fulfilling prophesy and "they'll come back with great and constant treatment, but it'll be a little over a decade and they'll have permanent physical damage and you'll both be bankrupt." except also over half the time it's just a normal poor prognosis, only you can't tell which is which ahead of time. i dunno maybe i am a dope and this is just how you end up on one of those documentaries about this sorta thing, y'know where the family is yelling about doctors and love and how they know they're totally about to come back (for over a decade), and you look at it and are like "oh man honey no i promise i'd just be like 'yoink' and you do that too ok." I set a pretty firm timeline for improvements though, and she's scooting forward just fast enough to meet them so far. i didn't expect basically every day to see tiny improvements, and emotionally its almost more exhausting than if she wasn't any better at all. ugh i feel like a monster no matter what i do or think and i really just want to cuddle with her so badly it hurts my bones.
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Mar 11, 2016 07:27
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i dont know what id do in this situation or what id want to have done to me if it was me in this situation. i cant imagine any decision that wouldnt haunt me for the rest of my life. i only hope that you, personally, make it through this relatively intact, and that you make the right decision based on serious thought and discussion with health professionals. i would also hope that you are, i dont know, talking to a therapist or something. well uh
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Mar 11, 2016 10:38
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Has anyone suggested leeches? Use leeches
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Mar 11, 2016 16:26
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it's working. it took three hours of give and take, but I wiped her mouth with her own hand while she was in the middle of a storm. now ok most of you are like "ok who cares" but what i'm saying here is that someone with decerebrate rigidity becomes workable with 350 mg intrathecal baclofen and 200 mg gabapentin. the two play off each other and create a mostly unsedated and pliable situation. if you take enough hours to deal with that i mean. basically, ok and here is the terrible realization ok, i can't fix her. what i can do though is give her the foundation to come back, if there's enough left for her to do that with. peeps have been attacking anoxia wrong imo. everything is wrecked, so what are you doing trying to make someone do much of anything? just help their poor hurt brain not spend a bunch of energy on useless poo poo and keep their parts from freezing into really uncomfortable positions. her eyes followed her hand even though her pupils were mildly blown. that's pretty significant. not in the "oh man she's back" way but in the "holy cow there's some kinda, even if broken, pathway to proprioception." also when she "fell asleep" she displayed the doll's eyes reflex for the first time. which is even weirder, because it sorta backs up that she's constantly not conscious, but also that's a great sign that there's connections hanging around. i dunno jesus christ this is the worst
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Mar 13, 2016 05:16
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I debated on updating this thread, because y'know it's boring because i mostly talk to myself (can't comment on legal issues fyi, and sorta have to be careful what I reply to). For the last three days she's been intermittently handling requests to open her mouth and stick out her tongue--and it's not something she really does otherwise. she made a little noise for the first time today, and it wasn't a weird noise, it was just a normal "hrm." after I told her some big news. For clarity around the intermittent thing, I mean she followed it 4 times in a row yesterday, and didn't do it in the 2 hours before or after. Then she did it tonight out of nowhere, and kept her mouth open for the nurse to sorta sponge brush her teeth. However, she still has a tight jaw even if she doesn't have the teeth grinding--so it's hit or miss if you catch a window without any myclonic jerks. It's weird, because her face isn't palsied or what have you, and she's clearly trying to talk sometimes. It doesn't make much sense given the damage on the MRI, but also it's not really all that bad for someone who was only taken off sedation 2 weeks ago and was entirely vegetative. That said, the decerberate rigidity is pretty rough, and the myclonic jerks seem to be annoying and painful. Arms and legs :/ I'm actually starting to think that I was sorta right and the splenium only had a transient lesion from all the epileptic drugs that she didn't need--but that the semiovale ones were pretty real. Either that or Intrathecal Baclofen + Gabapentin needs a ton more attention. Dunno. It's been a month and a half since I last heard her voice, and I totally bitch cried. Nurses caught it all though and updated her charts; virtually every other day her coma recovery score has been climbing. I can't really find info that says whether or not the three weeks of heavy sedation counts towards vegetative time either. If so, then she's still within margins for an OK recovery, and if not she's in a window for a good recovery. I dunno though, because it's pretty rough to try to work up that much hope. This has, and continues to be, Some poo poo. FAN OF NICKELBACK fucked around with this message at 07:08 on Mar 19, 2016 |
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Mar 19, 2016 07:02
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really wishing you guys the best. ive had horrible poo poo happen in terms of loss but its just a gay toggle switch between dead and not dead and when youre stuck in the middle im sure the anxiety and uncertainty can rip your brain apart. stay safe goon
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Mar 19, 2016 07:17
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hey thanks i wish i could share some pictures or videos because it's really weird for me to reread this whole thread right now, and also at the same time i don't want to give anyone a nutty impression like "everything is gonna be fine and she'll be 100% the same person" or "no don't write a will that gets you out of a brain hell because miracles happen" so let me clearly state for everyone in case someone else finds a similar situation (don't), she is going to be different even if everything pans out 100%. there is a guaranteed personality/behavioral quirk or two and/or some really lovely physical issues that'll need a likely few years of managing. that's the pie in the sky view, btw.
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Mar 19, 2016 07:24
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Op my dad had a normal low risk minor operation last week and your thread made me call him the week after to see if hed bled out but he hadnt E:it was an overnight heart scarring thing where they go in through the groin. I had an image of him popping the scar at the gym and bleeding to death on a bike machine or something SMILLENNIALSMILLEN fucked around with this message at 11:08 on Mar 19, 2016 |
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Mar 19, 2016 09:29
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I'm sure a ton of people read this when you update even if no one says anything. I'm with enfield here too, hoping you two pull through something okay
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Mar 19, 2016 09:30
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man me too, jesus me too. and yeah, katlington, ain't a not risky surgery for real also she is seriously trying to talk but the LTAC needed a bed and just threw her down to the rehab floor--and made sure to note that she doesn't follow any commands. or put any vital machines on her even though they had to suction her trach this morning 'cause she almost choked and had low oxygen and also ran +170/100 bp for two hours. she's anoxic you see so basically she's totally dead already except she did all the opening her mouth and even taking a deep breath on command stuff in front of the new nurses and this time, totally for real, they're definitely notating it. totally man, this time. totally. hopefully the transfer to one of the top neuro rehabs is smoothly started on monday
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Mar 20, 2016 04:32
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She used her voice today. I really don't know how to feel anymore. It was four times in a row on command. It was basically an open mouth hum, and it clearly took a lot of effort. But, I mean, this is some crazy and rapid improvement. She showed some very minimal control over her right arm on command, and her myoclonic jerks are a non-issue at this point, they're annoying at worst. Still some stiffness in her right arm and left leg though, and especially jaw. She was also able to battle her extremely tight jaw muscles to allow yet another person to clean the roof of her mouth and back of her tongue though. She clamped down on the tool when it gagged her. She was not only able to comprehend and act on the encouragement to relax her jaw and allow her to finish, but she able to work past the genuine tenseness in her jaw so he could get the tool back out and finish the job. She has never opened her mouth without a ton of coaxing or a specific sad song (her face contorts into open mouth agony. It's a dumb song tho.). I'm fairly certain she should not be capable of recovering this quickly. Doctors, sans "brains are mysterious magic sacks," seem to agree. I saw the damage, and it is both deep and profuse. I even called one of the most prestigious neurological clinics and managed to talk to one of the directors when this first occurred. He was probably the only person who understood what I was talking about, and his empathy could not have been more heartfelt. I knew that no one is ever going to prognosticate someone who isn't their patient, and rarely even when they are. I told that to him when I asked if he would make the necessary sacrifices, financially and otherwise, to get his wife into his own institution from thousand miles away in my situation. He, out of that same genuine empathy, essentially ended with "you just have to think about what your wife's wishes would be, because it sounds like you what the best for the both of you would be." Maybe she hits a wall, I don't know, but I feel like every day is exponential gains over the last two weeks. What the gently caress. ITB, gabapentin and piracitam (high dose). Auditory therapy from day one (F.A.S.T.). Just a psa for situations that are either pull the plug or pray, I guess, because I don't believe in miracles. I think it was the early intervention, but maybe she was just a brain miracle? Reality is super lovely sometimes. Who knows, maybe a nonsense scaling of the for real kind of quantum leap? gently caress the whole of everything.
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Mar 20, 2016 20:37
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I told ya dog. I TOLD ya. Divest not your hope cuz the human body is inexplicable. Also grats and condolences on the recovery. Frankly this way is likely worse than death in a lot of ways. Neither of you are allowed to just let go. That said where there is life, there is always hope.
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Mar 20, 2016 20:43
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You absolutely did not say say that. You said ok things, but definitely did not reach into anything profound or predictory, just safe and I mean really not the most detached from reality or or anything.
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Mar 20, 2016 23:17
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It was a lovely webcomic joke not a literal gloat. But whatevs. Hang in there.
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Mar 21, 2016 01:49
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you monster
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Mar 21, 2016 03:15
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I hope your wife recovers 110%, which means she is not only turns out okay, but also gains frightening superpowers. Like Tetsuo painting the walls with those doctors in Akira superpowers. On a more serious note, I look for this thread every once and a while in hopes of seeing things have improved. Looks like they are? Good luck op.
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Mar 21, 2016 19:39
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Hi, OP, I've been following your posts and wish to offer my encouragement. Most people wouldn't even have the capacity to do what you've done so far. Even if they have the will, reading through all of that medical literature and essentially becoming your own wife's therapist... wow... I don't wish to give false hope, but the statistics for recovery may be so low partially because the average person wouldn't have that kind of dedicated helper. Our medical system doesn't have sufficient resources to do what you have done for every person in your wife's situation. The improvements would have been impossible without you. All I mean by this is that I think you are what is giving her the edge over others in the same situation. Please keep us updated. My sincere wishes for her continued improvement.
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Mar 21, 2016 21:48
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i am guessing you are good partners because it sounds like you are both making superhuman efforts in the worst of bad situations. what is the song?
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Mar 21, 2016 23:21
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also who do you want to play you and your wife in the academy award winning film?
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Mar 21, 2016 23:31
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You picked a great place to post this my man
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Mar 21, 2016 23:33
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That was his intention, he didn't want a lot of back rubs and cooing
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Mar 21, 2016 23:34
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FAN OF NICKELBACK posted:so let me clearly state for everyone in case someone else finds a similar situation (don't) no screw that, I'm not going to cancel my future plans just for you
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Mar 22, 2016 00:20
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green chicken feet posted:I don't wish to give false hope, but the statistics for recovery may be so low partially because the average person wouldn't have that kind of dedicated helper. Our medical system doesn't have sufficient resources to do what you have done for every person in your wife's situation. The improvements would have been impossible without you. All I mean by this is that I think you are what is giving her the edge over others in the same situation. Just know the chances of this honestly ending well are still bleak. I get pumped because things are better than they could have been, for what that's worth. Ultimately, it's equally likely to have just sped her healing up, but not impact the end result. In fact I recently noticed that out of habit I'll hold her head to keep her jerking at bay, or lower the head to make it easier for her to open her mouth. Is that why she does it? Is it really on command, or simply that she can't override her clenched jaws otherwise? Who knows. nomadologique posted:i am guessing you are good partners because it sounds like you are both making superhuman efforts in the worst of bad situations. She was my best friend, she made all my successes possible and never doubted my ability to do anything. I always ditto'd that. We held each other up, and also planted each other's feet on the ground. There was a river of blood, sweat and tears we had to wade through together to get there . . . But it was with someone that made it worthwhile for the both of us. We hadn't so much as argued in months, and just laid plans for a very solid future. You have no idea how hard it is to not turn into a lunatic, to make sure I don't see everything as unquestioningly meaningful. There's a lot of road to left to go, and I'm already afraid I'll break.
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Mar 22, 2016 01:47
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FAN OF NICKELBACK posted:You have no idea how hard it is to not turn into a lunatic, to make sure I don't see everything as unquestioningly meaningful. There's a lot of road to left to go, and I'm already afraid I'll break. There may not be real meaning in every improvement that you see, but there will always be real meaning in the love you and your wife have shared with each other. This is evident in your thoughts and actions. Still, maybe there is someone close to you who can help keep you in check, to be sure you look after your own needs as well. I can only imagine how demanding this situation has been on you mentally, emotionally, and even physically.
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Mar 22, 2016 02:46
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In all seriousness don't worry about me. This is gonna suck for a while, and it's going to hurt for a while. She may never come home, and nothing will be the same again. She might come home, and nothing will be the same again. She might fully recover, except have no idea who I am and no interest in finding out. I'm gonna feel quite a lot of things for quite a lot of time, and so that's what I've been doing. That's all.
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Mar 22, 2016 03:55
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I hope the first words your wife is able to muster are to tell you to suck her drat balls. Honestly really sorry that you're going through this and I'm glad you're seeing at least glimmers of light. Thanks for the reminder to go make a will because I'm an idiot who hasn't already and obviously need to.
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Mar 22, 2016 04:42
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as a guy who sorta enjoys building a bigger picture based off statistics, i am very frustrated by the fact that hospitals are all independent and case studies sporadic. i cannot fathom how different medicine (as a concept, not just a thing that exists) would be if the clinical presentations of every person presented to any clinic anywhere were all fed into a database. i get it "big gubment" but seriously, we'd literally know pretty clearly what a good or bad prognosis for all kinds of things actually look like. i won't even say statistically, because at that point it would weigh so many variables that it would eliminate the various ways that doctors try to explain how magic and ethereal brains are for the most part. regardless that vent, she's getting her trach out tomorrow morning; scores still going up. it's a little disconcerting because i'm pretty certain that the damage in the semiovale and corona radiata (bilaterally) insinuate ataxic quadriparesis. also she meets a lotta the criteria of lance adams (action myoclonus), which both doctors and neurologists have not been able to rule out. "Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. Attempts at precise, coordinated movements are especially problematic. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heart function is temporarily impaired. It may be associated with a condition called action myoclonus renal failure syndrome." everything is sorta like when you have a weird day as is but then someone you don't like is particularly nice to you for no reason. FAN OF NICKELBACK fucked around with this message at 00:02 on Mar 24, 2016 |
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Mar 23, 2016 23:36
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Hey OP, some of my patients were your wife. Mrs Nickelback is young, which is good, but she's not so young that a Baclofen pump will let her play basketball. I can't really be gentle when I say this but I've observed your wife's behaviours on patients of mine who have no meaningful interaction with the world. They open their eyes when I make a noise in their room and they open their mouth ON COMMAND to get their teeth brushed... But they're otherwise unable to answer yes/no to any questions; they react the same whether it's staff in the room or their families; they sleep constantly no matter what's on TV. Days and years mean nothing to them. Oh and with years of quadriplegia, their limbs get skinny and their bellies get big. She'll have the PEG tube until she can swallow safely, which is a BIG hurdle (some walking, talking seniors can't get that clearance), so she'll never taste anything but mouthwash or illicit drinks from you that will make the nurses mad. If she can't pee or starts retaining too much of it, she might end up with a catheter indefinitely. One more tube. And quite often their bowels clog up, so a caregiver has to help that along either with meds or their hand. And all that's okay, it's bearable, if you're a conscious adult who can make their wishes known and direct their care staff, because at least that means you're aware of the world around you and you can interact with it - those patients are picky as poo poo, but they're my favourites, because at least we as caregivers know that what we're doing A) is what they want and B) matters. But if your wife never reaches that stage, the life she'll have to live for as long as she lasts is boring. And I'm really sorry but: not one picky patient of mine started off with anoxic brain injury. Every one was trauma or an acute reversible illness. That's why you got the reaction you did at your last hospital. Partial indifference, and I won't apologize for that cause it's lovely, but then it's partially experience. Ehhh poo poo though, you already know this and it's your wife's family that are holding out hope, right? I hope they take a long look at the lives your wife's roomies and neighbours are living (within the bounds of HIPAA!) and think realistically about her prospects. And PLEASE for the sake of avoiding future drama think about a DNR before the issue becomes emergent.
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Mar 24, 2016 00:59
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20 years from now you're life is going to be completely filled by bleaching out feeding tubes and compulsively checking for pooling blood in extremities. When your family comes to visit, you won't have anything to talk about beyond centimeters of movement or that one eye that winked 3 days ago. Your children will grow up believing that nothing they could possibly say or do will ever make you love them the way you love the body in the hospice bed installed in your living room. They won't really bother trying to involve you in their life. What would be the point? Your grandchildren will know only that grandpa's house smells bad and everyone there is frowning or crying all the time. They'll be terrified of you, have no frame of reference for the woman you're building this meat shrine to, and ultimately drift away from the core family unit as soon as they're self-determining. I was lucky enough that I at least have some memories of my grandfather as a kind man who would drive me to the library to read Encyclopedia Brown, before he became vegetative and our family's desperate clinging to his body stretched into 2 decades of "what ifs" and inter-generational blame. I can at least say that I understand why my grandmother couldn't let him go. Lots of other members of my family just hated her for ignoring his previously expressed DNR wishes. Of course, they were never around when he'd stop breathing and she'd be all alone in a house with her dying love trying to tell herself not to call 911 this time, not this time. She called every time. We don't know each other and my opinion means poo poo all, but I wish you the best of luck fam.
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Mar 24, 2016 02:29
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well yes. there was an op is all I'm saying guys. it is like, right there. original post. i feel like maybe you missed the gravity somehow, which is sort of weird tbqh.
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Mar 24, 2016 02:43
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I am sorry this is happening to you.
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Mar 24, 2016 05:31
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There is very little information about anoxic/cardiac arrest recovery out there, so I'm going to keep this up as a public service. Unsurprisingly, the only other people out there going through this are lunatics. What little community there is talks a ton about literally impossible things like eventually getting a person back by drinking pine bark extract and whatnot. I've learned a ton, mostly by not reading any of their stuff, but she's passed a bar or two for minimally conscious--so that's a good thing. There's not really any solid timelines for recovery from there, it just sorta keeps going I've gathered. It's also painful and boring. I miss my wife a ton, and she's sorta in there--is a thing you will hear people who are trying to stay pragmatic say. It's pretty easy to project and anthropomorphize; it really does turn out that basically every quirk and habit that a person has gotten poo poo for is based way deep down in the near-reflex parts off the brain. Most likely why they didn't change it when they caught poo poo for it. The hard part is remembering that what makes a person who they are is how they process things and not just the reliable quirks that are cute and they can't change. Most of the people trying to salvage a person from this sorta thing talk about doctors not listening. I haven't had a single doctor not try something I've asked; the key seems to be actually researching a solution and presenting them with case studies. Weirdly, trying random bullshit has a very low success rate (or you bet your rear end every insurance company everywhere would cover it and force hospitals to use it as a first line treatment). She listens a bit now, and you can see she's trying. I think the worst thing is I was right from the start. Motor pathways are blown, so she can't really move anything well. One side is simply hosed for sure. Her leg is all flexion, pulls her knee to her chest obsessively, arm on the same side stiffly postures decereberately, head lunges down until her chin touches her collarbone on that side as well. Other side is mostly flaccid after the gaba investment. She'll try to do things on command with it intermittantly, and then after some attempts her face will get sour and she'll scowl a lot more. Then she wrinkles her eyebrows and opens her mouth limply in a silent cry. I keep pushing though, since I sorta have too--and if you didn't at least read the first few posts I made you prolly shouldn't reply about now--every day is at least one new thing still. Her mouth opens easier and more often, and her voice has hummed a few more times. She turns to look at whoever is speaking pretty reliably, and stays looking at them. She'll also look where a person used to be. She's still completely blind, you understand. I think she's going to get OK rehab soon though, some joint ran by a neurologist who's apparently well known and does huffpo and webmd stuff. Seeing as how I've been able to talk to a neurologist who's actually seen her in person for all of 20 minutes in total since all this started--I'm alright with that. There's a lot of implications in that, and I have no idea where we land--but I don't see it as being anywhere near where I was before all this. Honestly, I'm pretty impressed with her as is. FAN OF NICKELBACK fucked around with this message at 23:02 on Mar 29, 2016 |
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Mar 29, 2016 22:51
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MR. BRAIN WO indeed.
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Mar 30, 2016 00:03
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FAN OF NICKELBACK posted:Then she wrinkles her eyebrows and opens her mouth limply in a silent cry. She's probably thinking (well not really because she can't think lol) "Please kill me and end this misery, why is he selfishly forcing me to suffer so he doesn't have to deal with my death? Why is my husband being such an rear end in a top hat?" Your wife is a  and you're keeping her chained up because you think you'll discover a cure or some poo poo and she'll be herself again any day now. Give it up man, your wife died the day of the accident; what she is now is nothing but chemical misfires and automatic reflexes.
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Mar 30, 2016 13:14
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Literally, this has been covered multiple times. I'm not happy about it either. I didn't want any of it.
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Mar 30, 2016 18:20
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KiddieGrinder posted:She's probably thinking (well not really because she can't think lol) "Please kill me and end this misery, why is he selfishly forcing me to suffer so he doesn't have to deal with my death? Why is my husband being such an rear end in a top hat?" while he did make this thread for i imagine both input and comfort, you should be able to tell from his last half dozen posts the input part doesn't mean much of anything and while the hope is seemingly stupid, he is in love and statistically correct that there is still some possibility of having his wife who he is in love with back again, it is probably 1 in 2 million but when you consider that his other option is to have the worst conversation of his life with her family while agreeing to kill off the 1 percent of her that remains to prevent further suffering but still feel guilty about it for a decade or three, and then go home to explain this to his child, maybe it's time to realize you won't impress us all with your negotiating skills and be the random internet person to decide the future of a person slightly sort of living or definitely dying i don't know what you're going through op, but i'm going through long term xanax withdrawal and every 4th doctor i see vaguely has any loving idea what they're talking about, i've been asked a lot of things like 'what is cbt' and 'why do you know the half life of each benzo, WHAT ARE YOU A PHARMACIST NOW?' so i do at least know the part of the problem involving inconsistent and stupid statements from a medical industry where 3/4 of the employees just don't know or care about biology or medicine as your life and mind go to poo poo and nothing helps
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Mar 30, 2016 18:37
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OP, do you work in the medical field? I only ask because if you don't have previous professional medical experience you certainly have gained a lot of medical knowledge about your wife's condition (and medical jargon in general) in a very short period of time. While it's great that you are clearly smart and educating yourself so that you can make the right decisions for you and your wife, I would caution you against diving headfirst down the Pubmed rabbit hole (even though my advice is probably a little too late). This is because quite frankly there is unlikely to be major research out there of significant consequence to your wife's condition that will alter her course of treatment. I know you probably already know this, but I am not saying this to get you to give up hope, so much as I am trying to reassure you that you have done and are doing everything that you can. At a certain point, however, you need to de-intellectualize all this. I know it is probably helping you grieve, but it will eventually drive you insane. I would strongly encourage you to see a counselor/psychologist/therapist/spiritual leader/anyone who you think will help you come to terms with what happened to your wife. Really terribly sorry for your loss, but don't forget to take care of yourself too. extra stout posted:
1. Common things are common, and your particular circumstances are not extremely common, so I would caution you against having the expectation that your PCP would be up to date on the latest recommendations for long-term benzodiazapine withdrawal. As an analogy, most mechanics can change the oil on a Honda Civic but probably would need help re-wiring the PCM on a jaguar XJR. 2. As a correlate to the above, you will need to seek specialty treatment in order to properly treat a condition like yours. I know there are lovely specialists out there, too, so don't think I am writing off the poor performance of lovely doctors. 3. Finally, no matter who you are or what your medical condition, you're always going to need to be the captain of your own ship. You know your body better than any doctor ever will, and it is your responsibility to communicate to them what problems you have and what has helped you in the past. Most MDs have way too many patients and not enough time to spend hours thinking about each one. Most will revert to UpToDate for differential diagnostics & standard of care. It sucks, but that's just the way it is. FAN OF NICKELBACK posted:as a guy who sorta enjoys building a bigger picture based off statistics, i am very frustrated by the fact that hospitals are all independent and case studies sporadic. FYI there are lots of governments out there that do have centralized medical systems and standardized medical records keeping and we still just don't know a lot of poo poo. There are poo poo-tons of massive, massive studies out there both in the US and other parts of the world and they have taught us an enormous amount. Consider what's happened with HIV; in the space of 40 years we went from a new, devastating, terrifying progressive infectious disease with no known cause or etiology to a drug regimen that gives them back a normal life expectancy and almost complete symptom relief. That said, human physiology is still super complicated. We have tons and tons of massive research consortia dedicated to doing whole-exome sequencing of people with idiopathic heart failure and poo poo like that but even after getting terabyte upon terabyte of data we just don't know how to interpret it or how to make the information we can interpret actionable. That is is because science is hard and turning science into medicine even moreso. Sometimes, too, we just don't have a solution and may never have a solution. It is far easier to cause disease than it is to cure it. Kommienzuspadt fucked around with this message at 19:17 on Mar 30, 2016 |
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Mar 30, 2016 18:55
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I did make this for input, I just really didn't have a plan for what that input would be or what I do with it. I don't reply much because it turns out there really isn't a whole lot of discussion to have around this. I work for a bank, I took a month off when this happened and simply spent every waking hour of that month devouring everything that had been written. At first it seems like you're onto something, and then about two weeks in you find out that everyone is just kind of saying the same stuff over and over again. 1) Anoxic/hypoxic brain injuries have about a three month window to recover consciousness and still have a(n almost inconceivably small chance) of a full recovery or near full recovery. My wife is now at one month and 19 days (48 days). 2) Miracle recoveries only happen in traumatic brain injury as a rule, and even then you'd be wise to very severely temper your concept of the word recovery. 3) In rare instances the damage to a brain manages to happen in such a way that essentially a finger stays on the off switch for consciousness. Metabolism is down and the chemicals that run your noggin are simply out of whack. If that's the case certain pills might work by dicking around with GABA. 4) If this ever happens to anyone you love, have doctors try everything they can to bring the person back within 2 weeks (at most). Do not do what I am doing, I don't even want to be doing what I'm doing, say your farewells and allow them to be the person that were for everybody who wants to remember them. No matter what or how many stories you read about success and the wonders of baseless faith, know that almost nobody gets to come back. you might get a consciousness, but it won't be them it'll be someone new who you would've handed their body over to. Do not forget, brain damage does not mean a cute and stupider version of the person you think you're helping. It means psychosis, uncontrollable emotional issues, Physical disabilities that often mean partial use of a single limb, And likely an inability to make sense of that very complex menagerie of insults that I just explained. You are betting against the house that you aren't going to trap a person in what is quite genuinely a living hell that they are helpless to navigate. You very likely, barring extraordinary circumstances that the doctors will no doubt explain to you, have a less than 10% chance of not leveling some combination of those factors upon that very person you're trying to save. also, know that you will not recognize them as the person that you thought you were saving and there is no caveat to that statement. PS it's not just pubmed, I actually paid the obscene amounts of money for certain neuro articles/journals. no matter how cutting-edge the treatment,you're still left trying to unmash potato FAN OF NICKELBACK fucked around with this message at 19:38 on Mar 30, 2016 |
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Mar 30, 2016 19:30
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