My brother has a diffuse axonal brain injury and I have a lot of questions. Help!

Hello everyone.  I am not sure how this works because this is my first time posting or even reading blogs.  My brother was in an auto accident January 27, 2012 and I would love to speak to others who know what he and his family are going through.  He was in a coma for 6 days. 
We were told that he had a sheering injury and we should google it.  Not very positive.  He stayed in hospital for a month and was moved to Shepherd Center in Atlanta February 24.  He came home March 29th.  He can walk, talk, and he still has his witt, but he virtually has no short term memory. When he was discharged from Shepherd they said he was still suffering from  post tramatic amnesia.  Although, most of his long term is intact, it is not all there.  He can't remember a lot from the past year and nothing since the accident.  It's really hard to tell how far back or close he can remember.  Also, he has just started going to the bathroom on his own, but he still doesn't wake up at night to go. 

I guess I just want to know if he will get better.  I know it has only been 3 months since his accident and we are blessed that this is his only deficit.  Will his memory improve?  Can he recover from axonal sheering?  Will he ever be independent again?  I guess I just want some hope cause I have never met anyone who has had this type of injury.  Forgive me if I seem desperate for answers.  I know my brother's life is a miricle already.

  Dianne Hornsby

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Hi...you are right about your brother's life being a miracle already, tell him that you think that and that you are happy that he survived.  As Polly said, it is likely that he will continue to get better over time - it seems that some people have found ways to stimulate the healing of their brains.  One great place for support and information is Brain Injury Association of America; http://www.biausa.org/  they have chapters in most states. 

I found the book; The Brain That Heals Itself to be very interesting, I highly recommend it. 

You will learn a lot from this site - welcome.

Dianne, Your brother will get better. Faith, Hope and Love! You are extremely early in the healing & recovery process, I am learning all these words I speak myself right now. My sons accident was in June of last year. Please don't look back before the accident, because, somedays that will drive you crazy. Look at how far he has come since the accident. He is a miracle, as you said. Cherish every moment, and remember, all the Love that I see you have for him, all things are possible. Everyday is progress, somedays are babysteps, and other days are leaps and bounds. Look at each day(s) with what is recovering, and just thank God, that God blessed you with the opportunity to have this journey. Rachel-James Mom!

 

Dear Rachel, Thank you so much for your kind words.  They really comforted me.  I think if someone could just say that they too have experienced or witnessed symptoms like his but they improved, I could breath again.  I know thay every brain injury is different though.  I know if love and concern help, he should completely recover.  I can see his short term memory working a little as he can remember some things longer than 30 minutes now.  He remembered.  It's like it peeks in and out.  Also, he seems to have so many memories flashing in his mind, he gets confused.  He thinks that some of them just happened.  Was your son confused like that for awhile, and did he suffer with memory loss?     

        Dianne

Rachel said:

Dianne, Your brother will get better. Faith, Hope and Love! You are extremely early in the healing & recovery process, I am learning all these words I speak myself right now. My sons accident was in June of last year. Please don't look back before the accident, because, somedays that will drive you crazy. Look at how far he has come since the accident. He is a miracle, as you said. Cherish every moment, and remember, all the Love that I see you have for him, all things are possible. Everyday is progress, somedays are babysteps, and other days are leaps and bounds. Look at each day(s) with what is recovering, and just thank God, that God blessed you with the opportunity to have this journey. Rachel-James Mom!

The first six months are generally the most rapid improvement. Very good improvement goes on for the first year and then good improvement for the second year.  A friend who is a brain injury doctor told me that, after 5 years, some microscopic brain swelling has usually gone down as much as it will.

Post Traumatic amnesia is a fluctuating state that is defined as ended when the person gets a set of orientation questions right three days running.  However attention and memory can fluctuate for a year or more after that. That means that the person does not lay down much memory at all.

As time goes on the cycle of laying down memory gets longer and longer.

My partner took much longer to get better than anticipated, but I think that was because he was given anti-psychotics to stop restlessness, but they caused restlessness themselves.  If you look up research papers patients improve much more slowly if they are given anti-psychotics/major tranquillisers.  (My partner was never psychotic; they just wanted to keep him from wandering when he was confused. It would have been better to have helped him to walk.)

My partner has diffuse axonal damage as well. That means that little nerve fibres die, leaving gaps in thinking connections.  The diffuse part means both that it affects lots of little neurones but not all of them, and that it can affect them in any part of the brain.  Diffuse is also a way of saying that we cannot see at that level how dense or wide apart the damaged neurones are. With my partner, it is most obvious in his frontal lobes, corpus callosum and base of brain, but you cannot be sure where else.  Neuropsychological testing gives us a better idea of what has been affected.  The damage shows up in his balance, dexterity, memory, learning ability, and especially affects how he organises things and approaches research and visual tasks.  He has done far, far better than anyone expected however. His memory is now good average - but he used to have a brilliant memory. His IQ is now around high average, but it used to be in the very superior range.  He has a background in post graduate software engineering but is having trouble now doing a masters level unit in an area he probably would have done easily years ago.  His fingering of keyboard and use of mouse is clumsy and he misses things on the screen that I can easily see.  He is still able to write articles and follow politics.  .He says he feels as if a layer has been taken off his emotional control, so that, where once he was very restrained in paying me compliments, he does it very easily now, for instance.  There is a very subtle personality change.

Diffuse axonal damage is said to be permanent - except there is some improvement for up to a year.

And you never know.  Everyone is different.

It is early days and your brother is bound to improve a lot.

Hi Diane,

Indeed, it does get better.  It is a long, long road.

I had my auto-trauma in 1990.  I too have diffuse axonal injury, was in a 10-day coma with a six-week period of post-traumatic amnesia (the time between the day of the trauma and first spontaneous recall of events).  I have found therapies and 'ways-of-being-in-the-world' that have made things easier. 

As support to your brother, be open to therapies;  currently, I am undergoing hyperbaric oxygen therapy (HBOT) which can be expensive, but I found a local provider with a portable chamber and his rates are manageable.  Modern medicine in this country simply has not 'caught up' to the benefits that oxygen -- under pressure -- can have.  My primary care physician immediately dismissed it when I brought it up, and portable chambers (less .

I have had a distinct awakeni

I have had a distinct awakening experience with HBOT.  My cognition is clearer than it has been since the accident, although the therapy is in no way a "silver bullet."  I have many of the fatigue-related limitations of TBI still, but I am more optimistic about them.

He'll get better.  He might have to fight like hell though. I lost my ability to consolidate new information for almost two years.  Zero memories for almost two years.  I thought everyone remembered the past like random flotsam in an ocean.  I think diffuse axonal injury is recoverable- slow and steady but frustrating.  Those little connections are struggling to reconnect somewhere and they do the best they can.  The brain has to heal itself but lots of things can help.  It is really slow but have faith. 

Thanks so much for your post.  It makes me feel better to know that there is someone who did get better with this injury.  It is such a rollar coaster ride.  Some days he can recall that seem trivial, but other things, like what he did that day, he can't  rememeber.  Also, some of his long term memories pop up and he thinks they are current ones.  I constantly orient him to what is an old memory and what is new.  He can't remember our father passing away and he died 21 years ago.  However, he can remember things that happened a couple of years ago.  I just can't imagine how he will ever put all of his memories in time order again.  How does that happen?  

Queenie Alexander said:

The first six months are generally the most rapid improvement. Very good improvement goes on for the first year and then good improvement for the second year.  A friend who is a brain injury doctor told me that, after 5 years, some microscopic brain swelling has usually gone down as much as it will.

Post Traumatic amnesia is a fluctuating state that is defined as ended when the person gets a set of orientation questions right three days running.  However attention and memory can fluctuate for a year or more after that. That means that the person does not lay down much memory at all.

As time goes on the cycle of laying down memory gets longer and longer.

My partner took much longer to get better than anticipated, but I think that was because he was given anti-psychotics to stop restlessness, but they caused restlessness themselves.  If you look up research papers patients improve much more slowly if they are given anti-psychotics/major tranquillisers.  (My partner was never psychotic; they just wanted to keep him from wandering when he was confused. It would have been better to have helped him to walk.)

My partner has diffuse axonal damage as well. That means that little nerve fibres die, leaving gaps in thinking connections.  The diffuse part means both that it affects lots of little neurones but not all of them, and that it can affect them in any part of the brain.  Diffuse is also a way of saying that we cannot see at that level how dense or wide apart the damaged neurones are. With my partner, it is most obvious in his frontal lobes, corpus callosum and base of brain, but you cannot be sure where else.  Neuropsychological testing gives us a better idea of what has been affected.  The damage shows up in his balance, dexterity, memory, learning ability, and especially affects how he organises things and approaches research and visual tasks.  He has done far, far better than anyone expected however. His memory is now good average - but he used to have a brilliant memory. His IQ is now around high average, but it used to be in the very superior range.  He has a background in post graduate software engineering but is having trouble now doing a masters level unit in an area he probably would have done easily years ago.  His fingering of keyboard and use of mouse is clumsy and he misses things on the screen that I can easily see.  He is still able to write articles and follow politics.  .He says he feels as if a layer has been taken off his emotional control, so that, where once he was very restrained in paying me compliments, he does it very easily now, for instance.  There is a very subtle personality change.

Diffuse axonal damage is said to be permanent - except there is some improvement for up to a year.

And you never know.  Everyone is different.

It is early days and your brother is bound to improve a lot.

I learned a LOT from books, mostly autobiographical, about helping someone recover from brain injury.

However, first off, I found this little free download by a Dr Glen Johnson, Clinical neuropsychologist,  of enormous help.  http://www.tbiguide.com/    It's organised in chapters.  I downloaded the lot and printed them out, carried them with me until I knew them nearly by heart.  He does ask for donations, if you can manage them.  What a kind person he must be to have provided this help.  If your brother can read, show him parts, or read to him - although at this stage he may still not understand what has happened to him.  You need to tell him repeatedly everything that is important.

Some books I read by carers and TBI victims which gave me the longer view:

My favorite is Where is the Mango Princess? by Cathy Crimmins, a woman whose lawyer husband was run over by a speedboat in a lake in Canada. They were Americans and he was ultimately treated under the awful US medical system. He made an excellent recovery, but his wife very intelligently and insightfully conveys her own predicament in coming to understand and accept him as a subtly altered human that she used to know.  It is very funny as well.

Over my head, by Claudia Osborn is the autobiography, written, as I recall, with the help of her mother, of a doctor whose sustained a terrible TBI when a car hit her.  She had very severe disorganisation and memory problems.  It is about her coming to terms with what she could and could not do, ultimately.  There is a lot about neuropsychological treatment.  You can glean ideas about helping your brother from this, either by imitating such programs yourself, or getting him into one.

There is another one - about stroke, not diffuse axonal injury - which is useful to give you some ideas in helping single-handed. It is called Brain Heal thyself, by Madonna Siles about two women who lived together and one of them had a stroke, then another stroke, and became nearly completely helpless, and how they coped with debt and lousy medical insurance.

For my partner I made a book to help him when he was still really disoriented, disorganised and had little or no memory. It was called, "James S.'s Orientation Book".  It said very simply where he was, who he was, where he lived, including planet and universe, what had happened to him and what was wrong with him.  It talked about the difficulties he would be having.  He had a lot of problems using telephones inside and outside the hospital so I wrote instructions down and finished up doing drawings of Australia and the area codes for different states and diagrams of different telephones. (This was one of his preoccupations.).  It listed the numbers of friends and relatives.  We wrote and dated notes about things we did and said together in early recovery, so that he could read this book to remind himself and help his memory.  He was also really worried because he could not tell what he had dreamed and what had really happened. When he was alone he wondered if he was the last person in the universe and if he would ever get any visitors, since he could not be sure he had not dreamed them.  With the book he had evidence of the existence of his friends and family and their coming to visit him.  The book also had simple routines, such as, What to do when you wake up.  What to do if you feel frightened etc.

I'm a psychiatric nurse and pretty well-read, so maybe it has been easier for me to understand what is happening, yet I still read everything I could get my hands on, and rang up people in Brain Injury Associations - who were usually so helpful. The Queensland Brain Injury Association was my initial contact and one man there always had something really helpful to say.  When James was rather strange early on and so easily irritated, this man would say, "Look around in his environment. You may find something that he is reacting to."  He was usually right on the mark. Sometimes it was noise. Sometimes it was me. Having someone listen gave me a break from figuring things out myself.  They would also talk to James for me, for free. Some other things in James's environment were, for instance, a perception that I was driving dangerously.  Eventually we found out the cause of most arguments; his hearing had become impaired so that he only heard the first part of most of what I said, so frequently thought I was expressing an opposite opinion to what I was. In turn I would be impatient with him because I thought he was being obnoxiously argumentative.  Slowed auditory processing is very common in diffuse axonal damage.  Watch out for it.  You have to speak slowly, breaking down what you have to say into short bits.  Get your brother to repeat back to you what he heard and understood; don't take it for granted.  You will also be able to gauge his improvement over time.

Your best bet is to find others in your position and make common cause, especially if you cannot access decent neuropsychological rehab.

all the best

Dear Queenie Alexander, You are so helpful. Thank you so much for replying to my post.  I am feeling really bad right now.  My brother is refusing to take his meds.  We have stopped all mind altering drugs and he is only taking things he took before his accident like diabetes meds.  He was so careful about managing his diabetes which he had been newly diagnosed before his accident.  He complains about being cold a lot and he wants to sleep all the time.  He's really pleasent he just doesn't want to do anything, even shower which normally he would never miss that.  He goes back to the doctor at Shepherd Center in Atlanta on the 15th for a check up and we hope to address all of these behaviors then.  I talk to him and he agrees with everything I am saying about his meds and bathing, but he forgets and he won't do it.  Is this typical behavior?  I feel helpless.     Dianne

Queenie Alexander said:

I learned a LOT from books, mostly autobiographical, about helping someone recover from brain injury.

However, first off, I found this little free download by a Dr Glen Johnson, Clinical neuropsychologist,  of enormous help.  http://www.tbiguide.com/    It's organised in chapters.  I downloaded the lot and printed them out, carried them with me until I knew them nearly by heart.  He does ask for donations, if you can manage them.  What a kind person he must be to have provided this help.  If your brother can read, show him parts, or read to him - although at this stage he may still not understand what has happened to him.  You need to tell him repeatedly everything that is important.

Some books I read by carers and TBI victims which gave me the longer view:

My favorite is Where is the Mango Princess? by Cathy Crimmins, a woman whose lawyer husband was run over by a speedboat in a lake in Canada. They were Americans and he was ultimately treated under the awful US medical system. He made an excellent recovery, but his wife very intelligently and insightfully conveys her own predicament in coming to understand and accept him as a subtly altered human that she used to know.  It is very funny as well.

Over my head, by Claudia Osborn is the autobiography, written, as I recall, with the help of her mother, of a doctor whose sustained a terrible TBI when a car hit her.  She had very severe disorganisation and memory problems.  It is about her coming to terms with what she could and could not do, ultimately.  There is a lot about neuropsychological treatment.  You can glean ideas about helping your brother from this, either by imitating such programs yourself, or getting him into one.

There is another one - about stroke, not diffuse axonal injury - which is useful to give you some ideas in helping single-handed. It is called Brain Heal thyself, by Madonna Siles about two women who lived together and one of them had a stroke, then another stroke, and became nearly completely helpless, and how they coped with debt and lousy medical insurance.

For my partner I made a book to help him when he was still really disoriented, disorganised and had little or no memory. It was called, "James S.'s Orientation Book".  It said very simply where he was, who he was, where he lived, including planet and universe, what had happened to him and what was wrong with him.  It talked about the difficulties he would be having.  He had a lot of problems using telephones inside and outside the hospital so I wrote instructions down and finished up doing drawings of Australia and the area codes for different states and diagrams of different telephones. (This was one of his preoccupations.).  It listed the numbers of friends and relatives.  We wrote and dated notes about things we did and said together in early recovery, so that he could read this book to remind himself and help his memory.  He was also really worried because he could not tell what he had dreamed and what had really happened. When he was alone he wondered if he was the last person in the universe and if he would ever get any visitors, since he could not be sure he had not dreamed them.  With the book he had evidence of the existence of his friends and family and their coming to visit him.  The book also had simple routines, such as, What to do when you wake up.  What to do if you feel frightened etc.

I'm a psychiatric nurse and pretty well-read, so maybe it has been easier for me to understand what is happening, yet I still read everything I could get my hands on, and rang up people in Brain Injury Associations - who were usually so helpful. The Queensland Brain Injury Association was my initial contact and one man there always had something really helpful to say.  When James was rather strange early on and so easily irritated, this man would say, "Look around in his environment. You may find something that he is reacting to."  He was usually right on the mark. Sometimes it was noise. Sometimes it was me. Having someone listen gave me a break from figuring things out myself.  They would also talk to James for me, for free. Some other things in James's environment were, for instance, a perception that I was driving dangerously.  Eventually we found out the cause of most arguments; his hearing had become impaired so that he only heard the first part of most of what I said, so frequently thought I was expressing an opposite opinion to what I was. In turn I would be impatient with him because I thought he was being obnoxiously argumentative.  Slowed auditory processing is very common in diffuse axonal damage.  Watch out for it.  You have to speak slowly, breaking down what you have to say into short bits.  Get your brother to repeat back to you what he heard and understood; don't take it for granted.  You will also be able to gauge his improvement over time.

Your best bet is to find others in your position and make common cause, especially if you cannot access decent neuropsychological rehab.

all the best

Dear Dianne,

It is sometimes overwhelming isn't it?  You can just get too tired and sad to think. Even a little break can make you feel more sane and less hopeless. You can only do what you can do. You sound like a wonderful sister.

First, did you download that booklet from the internet?  http://www.tbiguide.com/

It really is helpful. Of course you may have very little time to read.

Also, Vitamin D - did I say? is thought to be quite important, daily.  James takes Vitamin D3, 1000 IU daily.  They gave it to him in the secondary rehab.  The primary hospital didn't even think of it.

I assume that you are in some US insurance or non-insured situation that means you cannot just take him to a doctor or book him into a post acute rehab where he can be nursed. Otherwise, I would suggest that he needs to be booked into a hospital where he can be nursed until he is able to feed, bath etc by himself/his condition is more stable. You are being asked to do a lot.  In Australia we look at this kind of situation in America and think your country is not civilised.  Nonetheless, if you have to be the carer there is a lot you can do.

What you describe seems to me very typical behaviour of someone who is still acutely ill.  His conscious state is still fluctuating; i.e. he is delirious. It is too early for this to be permanent in my opinion.  He has to improve for a couple of years.

Have a look at the end of this email to help you assess how he is doing at the moment. I have copied and pasted the Post Traumatic Amnesia Scale.  I would expect him to get most of it wrong.  If he starts out well then, day by day does worse on it, then he needs medical review.

His brain and body are obviously still trying to fix up the basics.  He will need to sleep a lot, probably take a nap in the afternoon, go to bed early - whatever he feels he needs. He could stay in bed all day. Get him up for some exercise - as much as he can manage. Don't fatigue him though. Does he had difficulty walking?  He obviously needs careful examination by specialist physiotherapists, a neurologist and a neuropsychologist - plus an endocrinologist, if he had diabetes, because that condition could be changed, in the short, medium and even long term by his current acute response to his head injury.

Do you have a thermometer?  Check that he does not have a temperature.

Do you have something to monitor his blood glucose with?  If so, do it three times a day with him to see if it fluctuates.  If he is on insulin you may find you need to change the dose due to his inactivity, reduced food intake, plus inflammatory brain and hormone changes associated with the injury (can be short, medium, long term).

Is he best at a particular time of the day - probably the morning? Then that is when you can test how strong and coherent he can be.  It is very early yet.  He is obviously still not fully conscious.  That is why he does not register memories.  He cannot attend. The falling asleep is partly a symptom of brain swelling and partly a symptom of the impact on his whole system of his injury.

He is still very sick.  Nothing wrong with a lot of bedrest; just get him up to walk and do moderate stuff that he can do, and may want to do. Sit him up if he cannot walk about much, but give him regular time back in bed.  A good rough rule is to have him back in bed at sundown... you would be trying to get regular sleep/wake going using the light to help regulate him naturally.  But there will be a lot of sleeping yet; he is all smashed up and has to heal.  There is no drug that is going to heal him quickly.

You say that he is coming off a bunch of medications? Which ones? If they are the psychotrophic ones, and even valium, they will have delayed his recovery perhaps by a couple of months, but he will recover.  If Dilantin/phenytoin etc (i.e. anti-convulsive meds) ditto.  All medications have much greater impact on people with brain injury.

Panadol/paracetamol, as I think I said, is really useful (assuming he is not allergic).  Asprin and non steroidal anti-inflammatories are great too.  NEVER go over the dosage.  They all have side effects. Asprin and non steroidal anti-inflammatories (such as Ibuprofen) can make you bleed from the gut and give you an upset stomach, but they are very effective.  Panadol/paracetamol can give you liver failure if you go over the dosage.

Make sure he is not constipated (the psyche drugs are notorious for causing constipation and that could make his condition a lot worse.)

Avoid a lot of noise around him.

If he seems to be deteriorating, get him to a doctor and say that he is deteriorating.  He will fluctuate over hours and days, but if he gets MORE confused and stays that way, or develops a temperature, he needs a doctor.  (I'm not a doctor; this is just experience, reading and nursing.)

Feel free to ask my opinion on anything else and I'll do my best.

Westmead PTA Scale

Below is a simplified version[i] of the Westmead PTA scale which can be performed by non-specific health staff when specialist testers are off-duty.

“Westmead PTA Scale

Ask the patient to answer the following questions once every 24 hours:

How old are you ?

What is your date of birth ?

What month are we in ?

What time of day is it ? (Morning, Afternoon or Night)

What day of the week is it ?

What year are we in ?

What is the name of this place ?

Who do you have to remember ? (Show set of 3 photos)

What is their name ?

What were the 3 pictures that you had to remember ?

Picture I

Picture II

Picture III

Record each answer and score 0 or 1 on the MR-120 Form. After each question tell the patient whether they were right or wrong and correct any incorrect answers. Sum the individual scores to give a total score out of 12. If the patient scores 12 out of 12, remember to show them a new set of picture cards to learn for tomorrow. Record these new cards in the appropriate area on the MR-120 Form. Finally, try not to discuss the questions with the patient until you test them again tomorrow.”

 

The Westmead PTA test requires patients to be able to hear and speak.  It is for daily use and requires the person asking the questions to do this in a standardized manner, initially asking the person the question in a straightforward manner, then, if there is no answer, asking the patient to choose between three suggested answers.  Colloquialisms are not allowed; speech needs to be standardized. There are twelve questions, including the identification of picture cards.  A regular person, often a speech therapist, does most of the tests and one of the main items is to get his or her name correct, indicating that the patient is able to remember a person in their environment. When the regular tester is away patients are supposed to be shown a picture of the regular therapist and asked to identify her by name.  Successful emergence from Post Traumatic Amnesia, according to this scale, requires the patient to correctly answer the twelve questions three days in succession.  In order to show that the patient has developed and maintained the ability to register new material, after the first time that he or she gets twelve out of twelve, the three picture cards are changed. When the patient gets those new picture cards right, three new ones are introduced. This happens until the patient is able to get all the questions right and memorise three different sets of cards successively over a three day period.  The picture cards contain simple line-drawn images, such as bird, cup, flower, spoon.  Before the therapist leaves the patient, the therapist is supposed to tell the patient what they got right and wrong, and to tell them the correct answers, then to brief them with the information that will be required the following day.  There are some other conventions attached to delivering the test and more details which can be accessed on the internet, for instance from the Department of Psychology, Macquarie University, NSW, where a form for scoring was also available in December 2010.



[i] The source of most of this information is N.E.V. Marosszeky, L. Ryan, E.A. Shores, The PTA Protocol, Guidelines for using the Westmead Post-Traumatic Amnesia (PTA) Scale, published by the Department of Rehabilitation Medicine, Westmead Hospital and the Department of Psychology, Macquarie University, http://www.psy.mq.edu.au/pta/page8.html 

regards,

Sheila N

I had another idea.  Ask your brother why he doesn't want to take the meds or why he thinks he cannot.  There may be some reason that you can use to talk him into it or, you never know, he may have a good reason.

best,

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