So due to some things commenter have said on here I've been having a good think and trying to clarify the extent of my injuries.

On one of the stickies I read one commenter who is caring for her injured daughter who advised not to trust what the injured person says about themselves. This is scarily true. I've also been reading the UK Headway site.

My son whitnessed the injury and his version of events is very different from what I remember and now I think I ought to go back to the Dr with this info. It is as follows:

We had been to legoland, my sister was tired and picked an argument with me. Whilst I was kneeling down reaching into the passanger side of the car she slammed the door shut onto my head. Forcefully.

It struck me and knocked me unconsciouss. I lay on the floor for a couple of mins (uncertain of time.) I came around enough to tell my son to stay back then may have fallen unconscious again.
-I remeber most of this, in flashs

I got up banging on the car window and shouting insults and demands for help and for my bag that had my fone in it and my sister drove off. I collapsed onto my hands and knees in a fetal postion and said "help me" a few times.
-dont remeber collapsing or asking for help, though do have a confused memory of my hand nearly being run over

My son, 6yo, helped me stand, though only in a crouching position and led me onto the pavement. I gave him "the biggest hug in the world and a thousand kisses." I had bright blood pouring out of my ear, down my neck into my clothes.
-no recollection, except wanting to reassure him, thought I was telling him in full sentences and walking properly

Then, blank faced, I started marching up and down the pavement that ran alongside the carpark stumbling into the hedge. This pavement was a good 40ft and my son, bemused, counted me walking it about 20 times. He thought it was funny and laughing, stopped me saying he didnt want me to do it until 30.
-no recollection, thought I had walked just a couple of steps away afraid that he would be frightened by the blood I hought was covering my face from a wound in my temple. There was no breaking of the skin and only blood on my neck. Though I do have an odd memory of thinking the leaves on the bush were pretty then hurting my hand on spiky branches.

I lay on the pavement and he lay down with resting his head on my belly and I stroked his shoulder saying "I love you" on a constant loop. after a long while he got bored and asked if he could play (with his items from the gift shop). I said "Yes, quietly, here."
-no recollection

I then alid there with my eyes open not moving or speakiing. When he asked me questions he said my mouth moved like i was going to say I love you again.
-no recollection

My sister came back as it was getting dark and everybody else had gone. She drove passed and parked a short distance away, ignoring us and talking on the fone. When she drove past i sat up and my son came to me. We hugged and he complained that I was wet, said I had water coming out of my ear like a waterfall. He said the blood on my face was dry but he had a smear of blood on his cheek where he had hugged me.
-I thought this immediately follwed my sister driving away, thought she was gone a couple of mins not hour or two.

I used some clothing to clean it off and told him to put his dry clothes on. I tried to help him but kept putting the wrong clothe on the wrong places or not even on him. He dresses himself, struggled with the trouser but I couldnt do the buttons so we left them undone. He wanted to play again.
-dont remeber the blood, though do remeber him saying I was wet. Thought it was from the last ride we had been on and was concerned that he was wet and cold and needed his dry clothes. Have vague impression of dressing him, but has if my body was in two seperate peices

He said I had found my tobacco when I was trying to get him dressed. As he was playing I kept trying to roll a cigarette but couldnt as the papers kepts getting wet. When he was talking to me I managed to roll one without looking and smoked it.
-vague recollection, was trying not to cry and the smoking helped control my breathing. Was scared to get in car, angry with my sister but wanting her help. Trying to put brave face on for my son

We then got in the car and left. He staid at his grandmas that night and returned after dinner and then we went to the doctors. He said I still had blood in my ear then but I cleaned most of it out before we went becuase he pointed it out.
-I would swear blind that he stayed in our home that night and we went toDrs first thing in the morning. I believe him though.

For the next 4-5 days I slept constantly, only getting up when he cam and told me he was hungry. I would make him food then go back to bed. He used Cbeebies to tll the time of when these things should happen, including bedtime. He said he would hear me munching and crunching downstairs afte Iput him to bed so knew that I had eaten. He had been worried that I wasnt. After that I acted more like normal but slow. The whole side of my face got fat and dark brownish purple in these days. I apparently kept repeating th I love yous and told him he was a good boy, I was just very tired.
-no recollection of any of this, or even what came next. Not a bit. Which scares the hell outa a me.


To be quite frank I really think I should have been hospitalised and think whyon earth didnt anybody helpme or call an ambulance? The bruising hadnt properly started to show when I went to the Dr but it seems gross egligance to send me home alone with my son. It seems I would hav understated what had happened..but still.

I'm going to call the Drs tomo and say these new details, beceause with all the blood and brain fluid i think i may have injured myself more seriously that any of us realsied.

Regardless of what is or isn't know about the mechanics/forces of an injury, it is the symptoms that should be treated. Amnesia or confusion are just a small part of the symptoms looked at. It might be more valuable for an observer to comment about the changes seen in the injured, such as, she is never this confused.... etc.

I doubt the doctors will change their diagnosis much upon hearing the rest of the story. They can only treat what they can see and diagnose.

Why didn't you file assault charges against your sister ?

When they say, "don't trust what you think you know about your injury," I think they are also referring to the fact that TBI patients can often be unaware of their own deficits. In fact, sometimes it's the worst affected who most believe they're $100% okay.

There have been cases of TBI patients being unable to acknowledge such seemingly obvious things as blindness in one eye. We've had members here assert that they are not cognitively damaged - in jumbled posts that are clearly the products of disoriented, confused minds.

Before I was tested, I thought I was aware of all of my issues. Not so. Prior to being tested by a neuro-psychologist and a neuro-optomologist, I had no idea that I was repeating myself, had lost my ability to see patterns, was completely inattentive to a significant area of my visual field, etc..., etc...,

That's why it's really important that the treatment of TBI patients SHOULD NOT be completely dependent on self-reporting of symptoms. As a general rule, TBI patients grossly underreport their symptoms. Unless prompted, we tend not to offer them up.

For example, my doctor asked me how I was doing and I said, believing it, "Fine." Luckily my husband would come to my appointments and fill in important blanks, like, "she's vomiting, fainting, swearing like a sailor, zoning out, avoiding eye contact, not sleeping, choking on food, getting lost in our own neighbourhood, putting laundry in the dishwasher, etc..."

My neuropsychologist told me that, rather than soliciting general comments, doctors should ask TBI patients specific questions. Most don't - so that's why it's a good idea to bring a family member or friend to appointments.

You also need to trust your loved ones when they tell you that you are engaging in odd behaviours, etc...

Unless you listen to those close to you, and have assessment tests done by qualified, independent clinicians, you can't be sure that you have an accurate understanding of your deficits. If you can't recognize/accept your deficits, you can't treat them and/or start to learn workarounds.

While I agree than many PCS and TBI patients may minimize or not recognize their own symptoms and dysfunctions, Ash was referring to her recollection of her injury as compared to her son's recollection of her injury.

My point was that her poor recollection of the specifics of her injury likely did not have much to do with the level of care and treatment provided by her doctors.

This issue has been brought up before in the mistaken understanding that the patient's failure to properly remember the specifics of the injury caused doctors to provide less than adequate treatment.

I agree, Mark, with your reading of what Ash was trying to do. And I agree with you that, regardless of the mechanism of injury, it's the resulting symptoms and deficits that matter.

My point was that I believe Ash might not have recognized completely the totality of what Headway was trying to communicate in the phrase "don't trust what you know about your injury."

I think that, like you, they are drawing attention to the identification and acceptance of symptoms, more so than the importance of trying to recall all the details of everything that happened in the lead up to, and immediate aftermath of, the acquisition of the injury.

I will probably never remember everything that happened during my mva. That doesn't matter. My neuro-psych identified my deficits and I'm dealing with them. That's what's most important - and what it really means to know your injury.

I'm finding my thoughts difficult to organise to please excuse this response if it seems abrupt or a bit jumbled. This is in conflict with my logical nature: which ties in part to why I wrote the post like I did. I find it easier to be objective about othr people's stories but am becoming increasingly aware of my lack of personal awareness.

1. I didnt report my sister becasue shes my is sister. She sent a nasty email which I didnt reply to and i havent spoken to her since. Apparently my mum, on fone, told her to come back for us tho she lied about what had happened.

Mark-

I will have to politely disagree with you regarding problem/symptoms. this was something I was looking into before the injury. Simply treatin the syptoms is not good enough because the problem remains...continuing to provoke symptoms. If you had a cut that was bleeding profusely you would not just replace the blood loss but also sew up the artery to stop the blood loss. Problem and symptoms should both be treated, hand in glove if you will.

For medical professionals to properly do this they need an acurate picture of what the problem is and how the symptoms manifest. I do not have any help and clearly I have not even realised the extent of either inury or symptoms. Normlly I am the strong/practile person in the family.

This is why I agree with Hockey and started taking a good look at myself. I'm using this place to organise my thoughts as you all understand and certainly offer good advice/perspective. thank you all.

I dont realise the totally of "dont trust..." ut i am trying to. because im logical it seemed best to start at the begining and go from there. On the headway site they take this approach saying that the level of trauma does effect the extent/duration of symptoms that follow. which makes sense. in a moment i'll do another reply pointing out what each stage of my reaction to injury meant. it will take while, pleas be patient.

I am not necessarily blaming the dr for my lack of care but have since found out that it is commo practise to send someone who has a head injury and bleeding from the ear immeddiately to A&E. He didnt, ust told me to rest with no pain meds. The second Dr I saw was not happy with this, so it isnt just me or my frustration/impairment.

Impact- I believed that only my left temple had been struck and so was looking up symptoms/telling dr this.

Actaully the car door struck from the top of my head alongside my face, denting the jaw. The width of the door meant in also struck further into my hairline. The locking mechanism struck above my temple denting it. I stuck my nose into the car side as I fell, and hit the right side of my head when I landed. These are extensive impact sites/damage affect diverse areas of the brain.

(I'm so terrible with numbers, had to look this info up...)

Date Mon 28/07/14
Legoland closes 7pm, there were still plenty of people in gift shop. Injury Est 6.30.
Nightfall bgan at 20.16, when sister returned.
Inury reaction duration, alone/with son, of approx 2hrs.

1. Initial impact: unconscious est less that 5mins, bleeding from ear
-indiative of basililar fracture, torn arteries.

2. State of reduced awareness, duration unknown, est 10mins.
Hugging/kissing son, unable to stand.

3. State of Post Traumatic Amensia: the marching/no awareness. Est time 20 mins until son stopped me. Repetion of speech, single word answers.

4. Second impact/brain swelling: cerbrospinal fluid and blood leaking from ear, entered coma like state. Unresponsive/small mouth movement. Est 1hr. "Awakened" to stimulus of car driving past/son making me sit up.
-indicative of increased intercranial pressure, torn sheath, can lead to sudden death or seizures months after. Surgery may benefit to repair tonr/severed arteries.

5. Sate of reduced awareness/confusion of events (swear that i had convo with son regarding scorpions. He said this happened in the gift shop). Reduced motor ability- failing to dress my son. Inapropriate behaviour, i tried to undress to get dry (but didn actually have any dry clothes) and may have revealed my breasts (! ) Automatic responses: concern for son, rolling cigarete when not looking. difficulty breathing.

Cerbrospinal fluid still leaking copiusly. est time 30mins
-indicative of moderate to severe injury

6. journey home: nasuae urge to sleep, agression/fear. no accurate memory

7. Semi-conscious/reduced awreness/post traumatic amensia lasting approx 5 days. Tried to wander again but the front door was locked and couldnt get out. Responded automaticly to stimulus of son asking for food/routine. Single word responses/repeitive. continued, though lessned bleeding/CSF leak. May have vomited.
-indicative of severe second impact/intercranial pressure

8. Memory starts again when friends came to town for a visit on 9th august. Behaviour very strange, fell out with some of them. Still get confused about ordrs of events for hole of summer and have to look at social media.

Mediacl interactions:

1st Dr: I only reacted agrressively to my sister/s car, other than that I became very docile/loving following automatic responses. Son present at at so didnt want to scare him further/was unaware of inury extend. Dr checked responses, gently felt face concluded certain concussion. Told to rest sent home. Day after incident. No meds.

2nd Dr: 29th spetember, persistant symptoms, cranial pressure,motor deficiency, pain ect. Fire alarm malfunctioned in waitinf room: agaony, nearly vomit/passed out. Son present again. Dr annoyed with last dr, suspected trgomenial neuropagsia due to inury, said fractures would have healed by now.Nerve damage, chest infection. Meds:amytriptaline and antibiotics. Recd optician check. Said damage could take a year to heal.

Optician, apt by luck/due to a canellation the next day. 30th september. 20/20 vision. Partaila face paralysis. LEft eye at 3/4 movement, suspect damage to 4th and 6th nerves. Reffered to opthamologist.

30t octorber opthamologist
31st opthomatrist....attended both alone.
Various tests, results mostly normal with odd deviance they did no detail to me. No bone splinters pressing on optical nerve/back of eye. concerned, wanted to help but didnt have expertise. Refered to neurology.

1st week of october Dr called me in, alone this time, gave new box of amytriptaline, put referral through to hospital has this had been muddled up somewhat. Stressed that he couldnt help, i needed apt. Like Hockey he told me to insist during apt. Said he couldnt order CT/MRI. Asked if i was eating. Didnt say a lot to me but asked a few q's and made lots of notes.

Studies indicate that becuase i have smoked cannabis this increased my survival rate by 22%

[QUOTE=_Ash_;1109707]

"On the headway site they take this approach saying that the level of trauma does effect the extent/duration of symptoms that follow."

Of course, this is generally true. For example, the longer one is unconscious, the worse the prognosis. However, the story is a bit more complex and, frankly, baffling.

In some instances, people with very profound injuries make much more complete recoveries than those with seemingly mild concussions. Why? No one has a definitive answer.

Part of it has to do with "hold skills." Patients tend to retain more capacity than expected in areas where they had a lot of practice premorbidly.

In my case, testing indicated very significant damage to the parts of my brain controlling language. In fact, it was so bad, the neuro-psychologist couldn't believe I was conversing with her.

Now, that's not to say that I don't have issues with language (aphasia, apraxia, etc...), but I am functioning well above what would be expected. Why? Because I was a professional writer before I was injured. Those areas of my brain are overdeveloped. I can mask, pretty well, the fact that I am struggling for words because I know a hundred synonyms for everything.

On the other hand, my French, which I used sparingly, is gone.

I also have a frontal lobe that was described as "mashed potatoes." Yet, while I do now have anger issues, I am not, as might be expected, an amoral serial killer. Why? Because I was a very calm, gentle person before. Someone with a far less damage, but with a pre-existing tendency to impulsivity, might behave far worse than me after TBI.

Who we were before, seems to matter in TBI recovery.

On the whole, educated TBI folks, with high IQs, do best. Why? It's probably a combination of excess capacity and a receptivity to learning that makes them more diligent about therapy and better at devising workarounds that mask their deficits.

Ironically, while high achievers tend to have the best practical functioning after TBI, they are more inclined to suffer mightily psychologically after injury. Even though some of them are still testing intellectually above most of the general population, they feel the huge gap between the capabilities of the old and new them.

This is a long way of saying that what is really important is how the injury is actually playing out in our daily lives.

For example, if your injury is significantly undermining your ability to comprehend numbers that might not matter much if you have little real need to use math. On the other hand, if you're a cashier, accountant or physicist, even a little damage in this area could have far reaching consequences. See what I mean?

The important thing is to have neuro-psych testing, identify your particular deficits and then concentrate on addressing the ones that most undermine the quality of your daily life.

What matters, above all else, is FUNCTION. How can I improve what I need to improve? How can I adapt to do the best I can do with what I've got left?

In the early stages of TBI, it is natural to think a lot about the incident that caused the injury. As one progresses through the healing process, the less important that becomes. We learn to forget could have/should have/would have and focus on moving forward with our lives. What matters is not where/what we have been, but where we are going and who we are becoming.

Yes, it's hard. TBI can be such a profound, life altering injury. When I was diagnosed with TBI, my doctor told me I would have been better off losing both my legs. She was right.

Ash,

I am not saying the docs don't need to know the basics of the injury. Just that the details of the injury do not need to be so specific. What is more important is being able to tell the doctor about all of your symptoms or being truthful when asked about symptoms. ( I am not saying you were not truthful) Sometimes, it takes a second party's observations to relate some of the symptoms to the docs because the patient is not fully aware of the symptoms. For example, slow slurred speech is often not recognized by the patient because their brain is working at a reduced speed.

The doctor overlooking the CSF leaking from your ear is troubling.

I don't understand what you mean by Second impact/brain swelling. Did she smash your head with the door twice ?

If you are referring to Second Impact Syndrome, it is a condition that is a risk many days to weeks after the initial injury. You were not experiencing Second Impact Syndrome. This does not mean you did not experience brain swelling, just not of the Second Impact Syndrome causation.

You claims to the value of cannabis are over-stated. I've looked at the research and it is still weak. Cannabis also has some very negative effects on the brain. The value is related to very small dosing, not enough to get high. The psychological struggles it can cause are well documented.

Regarding your care, you may have just been a common victim of the lack of access to good care your health care system has. It's can be just as bad here in the US. It just depends on the skills and knowledge of the first doctor to see the TBI patient. If they don't start a chain of referrals to specialists, the patient's needed treatments/ suffers. They should at the least set up a return visit to see if symptoms are improving or not.

Yes Mark they do need to be that specific.

If the Dr thinks I have a concussion or was only unconscious briefly- as thats what I believed when I went to them, then they are going to tell me to be patient, that I will heal with time.

A serious head injury is another matter. It does not necessarily mean they can do anything practicle to help, but it does mean they can chck for things that lead to danger. Youre certainly right bout first dr, wish i had gone to A&E but coulnt undertsand how to get there. the initial pos was e getting soeone else obs.

(the second impact thing: cant find the med site. It wasn refing Second Concussion Sydrome but rather that the inititial impact and subsequent swelling (mins, hours or days later) are considered seperate events. Sometimes the second doesnt occur and the inured just has a mild concussion rather than TBI)

I rang today. My neuro apt had been booked for January, the letter put in post today. The person I spoke to was very concerned and told me to talk to GP to get seen sooner apt with a pariclular person.

I rang GP and told him whats above. He is going to ensure that I get seen by neuro soon and cautioned my not to put my head under water. He seemed concerned at the length of time/symptoms.

I took a turn for the worse this afternoon and found it difficult to talk, difficult to walk to sons school, couldnt count money properly for panto trip.

Hocky: did you mean my story was baffling or headway site, or general differnces in outcome?

I find myself nodding (metaphorically) along with what you said. I think my intelligence makes people under aprreciate my inury. I also think it means that I have been rationalising my behaviour. Of course I am still in the arly stages. Its scares me when is see you say you used to be a writer. Dont you write anymore? Your posts are very coherant. I've only just started down that path, professionally speaking, having had a short story accepted for publication in august and somehow managing to complete my book in autumn.

I will not let one moment of violance destroy what I have worked so hard for.

This is why I am pushing for accurate diagnosis, testing and a management plan. I will get better.

Re:cannabis. I'll start a new thread with links where we can chat/debate different info/views. Dont want to og this one down.Tho i will say that i wasnt smoking cannabis on day of inury, i never do round my son or allow him to be around tobacco smoke.