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

[Dianne Hornsby]

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

[Queenie Alexander]

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

[Queenie Alexander]

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,

[Polly Prisms]

Hi Dianne! I'm just coming back on here, so I'm not totally up to speed on what's going on in this post.

When your bro visits the doctor, might want to get a thyroid panel done? I'm just saying, because whenever my TSH goes somewhere over 2, it compounds my TBI symptoms, and I get a lot worse as well as the typical hypothyroid symptoms:  I get cold, want to sleep a lot, can't get myself to do anything, get a lot more confused, headaches, etc. Now, a TSH of 2 is considered within the normal range, but since my TBI, it has never been a normal number for me. Anyway, might be worth checking that out.

Make sure you keep a copy of all your brother's tests. Other things that can make someone lethargic are low thiamine, low D3, low B12, low iron, etc. So, if his thyroid doesn't seem to be the problem, those are also some possibilities. But please get these tested before plugging supplements into him. There are problems associated with having too much of supplement, as well.

Hope it all works out well for you both.

[Sonja Goins]

Hi Dianne,  My daughter is recovering from similar injury.  On Oct. 14,2010 she had a motorcycle wreck that sheared 2.9cm of her brain stem, significant frontal lobe injury, bilateral temporal lobe injury, occipital, and cerebellum.  She was comatose for 3.5 weeks. It has been very difficult to find survivors of this magnitude, when statistically speaking the brain stem injury alone has a 4% survival rate.  I know without a doubt God saved her.  Faith, hope and Love is your most important components!  Lindsays neurosurgeon told her " Lindsay, if they had told me you would be sitting in my office 3 months ago, I would have told them thats a lie, I never thought you would make it."  It is a slow process,  Lindsay used to get confused and think she was in China, it has been heartbreaking to know she was so scared and lost in her on mind.  I wanted her to go to Shepherd SOOOOO bad!  Unfortunately at the time of her accident she was not covered by medical insurance.  She did go through a second rehab once she was covered by BC/BS and they were great.  I can tell you from our experience, the best investment in her recovery we have made thus far has been chiropractic care...not just any chiropractor...look for a Maximized Living Chiropractor in your area..when Lindsay first started seeing her chiro, she walked by placing her arm around my neck and it felt as if I was literally holding her up...after 1week of seeing chiro 2x a day, she could walk holding my hand..her vision became better, her stamina became better..and after 3 weeks she was off all of her medicines.  Today she still sees a Wellness Chiropractor and she is still off all her meds.  I should also tell you, up until her accident I had worked for 21 years at a major trauma center..Medicine was all I knew.  I was quite skeptical when we went for her eval at Dr. Alicia's...I must say it has been a life changing experience.  I know my Lindsay is going to get better, I dont believe God saved her on the side of that highway for this to be it.  He has already healed her far past any medical dr.s expectations. Just pray, and know that what you pray for he will do.  After all, God said all we needed was "faith the size of a mustard seed", thats not asking for a whole lot!  Lindsay, just this week has asked me about things that happened the week before her accident...this is major!!  I have watched her go from thinking she was 13, 15,17,19 and now she can remember things when she turned 21...she was 22 when she had her accident...we are getting there!!  Just pray, believe, and remain kind..we have no idea what they are trapped in right now!   Best wishes and prayers for you and your family!

[Queenie Alexander]

Hi Sonja,

Your comments are fascinating.  My partner, with a very similar injury to your daughter's, has also benefited a lot from chiropractic.  Singing lessons have also helped a lot in self-monitoring, posture and, I believe, thinking.  I wrote about them elsewhere on this site... not sure where anymore.

best.

[Queenie Alexander]

Arthur,

Great to read you.  Your injuries sound so similar to my partner's, worse even - although with diffuse axonal it is pretty impossible to know the extent really. You were close to the same age - he was nearly 50.  One difference though - your injury happened ten years before his.  His injury happened on 18 May 2010, just over two years ago.  Yours happened in 2002.  Could you give us a bit more indication of changes over that long time period?  My partner is doing really well, but we are running, I think, into limits.  Specifically, as medical treatment, he was prescribed a return to post grad university to do one unit in info tech - C# programming, actually.  An old Linux system man, he was unfamiliar with microsoft (possibly last man standing in universe on this) and might have had some problems with Windows type interface even before the accident because he is a code person.  (I may be getting a bit technical here). Anyway, I suspect he is not going to pass the course and I wonder if he will also have problems using Linux.  His neuropsychologist thinks it is the way he organises, or disorganises his approach to learning... It is hard to say if that is it or there is maybe more to it.  Don't know.  We have a major internet site that James designed and he wants to upgrade it.  I really hope that he may finally get on top of those skills again.  I bought him a guitar for his birthday a couple of days ago and I will be interested to see how well he does at learning. He has certainly been able to improve his singing through a few lessons. 

The explanation for my partner's doing as well as he has done is that he had a 'very superior' intellect prior to the injury, so, in the words of his psychiatrist, "The only reason he is doing so well is that he had so much there before."  So he is able to manipulate a lot of information and learned strategies from pre-accident.

However I do hope that, over the longer period, he may develop more power to accumulate new information, organise his approach to things.  He is really phenomenal.  You sound really phenomenal too.

So, anyway, more about your milestones, please.  It is very hard to interest James in stories from other people but your story just might make it through all the competing tasks and reading. I will forward it to him.

Oh, another thing.  I agree that the psyche meds are a real problem. James was discharged after about 2 months in hospital on no drugs at all and has remained that way (except for Vit D which I think is important). But prior to discharge, they had him on quite small quantities of three different antipsychotics which, I am practically certain, gave him severe akathesia.  I insisted on a family meeting and I have documented what he went through, if anyone is interested.  I also collected a lot of literature on the effect of antipsychotics to 'calm' people in brain injury recovery.  Those studies indicate much slower recovery.

Emotions are also the key to learning - to being interested, focusing and concentrating.  Psych drugs damp emotions down.

It is very fortunate that James didn't consume alcohol before the accident and does not consume alcohol now.

I must get back to doing some other work, but looking forward to reading you, Arthur.

[Sonja Goins]

Thank you so much!  You didnt seem nasty at all!  I am sorry you had this to go through, yet thrilled to have found you!  I pray for Lindsays recovery daily.  I dont mean to pry, but, I was wondering if you had a shunt placement?  I have a strong feeling that Lindsay is in need of a shunt but the dr.s we have seen so far will not discuss it.  I say this because when she woke from her coma, she knew everyone and she knew the ones she was mad at..3 days later they removed her ventric and her CT scans show "moderate hydrocephalus, obstruction of flow cannot be excluded".  She has an appointment with a new Neurosurgeon on the 13th of this month that has reviewed her previous films...this is the best step yet, the others would not talk to us.  All of Lindsays deficits mirror hydrocephalaus in my opinion, I know Im not a dr. but Im not stupid either.

Thank you again, you have indeed given me hope, I wish you the best.

Sonja
 
Arthur Levine said:

  Sonja, I have been trying to figure out how to offer you a glimpse of hope w/o seeming to be my seemingly nasty 'ol self.... So here goes...

>>>> My daughter is recovering from similar injury.  On Oct. 14,2010 she had a motorcycle wreck that sheared 2.9cm of her brain stem, significant frontal lobe injury, bilateral temporal lobe injury, occipital, and cerebellum.  She was comatose for 3.5 weeks. It has been very difficult to find survivors of this magnitude, when statistically speaking the brain stem injury alone has a 4% survival rate.

    On April 10 2002 I too suffered a brain stem shear injury and what the report says major brain stem hemorrhaging, three separate sub dural hemotoma's as well as three other separate and distinct "severe" sub arachnoid hemotoma's  along with an actual physical partial separation of frontal lobes, along with damage to my occipital and parietal and temporal lobes and their functional abilities as well. My wife and kids and best friends tell me that after they got done with me the neuro's told them that 95% of the people who suffer such injuries do not survive, and that 95% of those who do survive will never regain more than the most minimal of a functional state. And that things didn't look very good at all for me.....

   So you have found a survivor of the magnitude of Lindsay's injuries....

   Now, all this is still rather odd, to me it is anyway, and I still struggle to believe that such are true..... But anyway..... I had a major case of double vision, but I got over it, I couldn't walk, or read, or do anything left handed, but I slowly got over all that too..... I went to PT, where I had two wonderful folks working with me to regain what I had lost..... 3 days one week and 2 days the next for 3 months and then 2 days every week for 2 months and then one day a week for 2 months, they gave me lots of different exercises to do at home , and as I really didn't have much else to do, I would do them for several hours every day. Then there was George the speech therapist, he really helped me with learning to speak well once again, and this is (for me it is anyway) the biggie, he helped me start to learn to read again.....

>>>> Lindsays neurosurgeon told her " Lindsay, if they had told me you would be sitting in my office 3 months ago, I would have told them thats a lie, I never thought you would make it."

   Before I was discharged my wife and I were told that among other things I would most likely never again---walk w/o assistance, nor do anything left handed, nor learn to read, nor relearn a second language nor speak clearly nor this nor that nor many other things..... Seven months later I had come as far as PT was going to take me, I was learning to take my balance cues from vision and touch, I could walk a mile without rest or assistance, I was becoming a much better reader almost by the day, I could tie my shoes and do many other things right handed, and was now of almost equal muscularity on my right/left sides, and could speak quite clearly (though keeping track of what I was saying was a different story) once again.

    A week or so before Christmas 2010 I told the neuro-rehab folks thanks for all y'all have done and that I was done with all of them and saw no reason for seeing them any further on more than an annual basis.

    Something I have never been comfortable with hearing, nor knowing for that matter, but anyway, the head neuro doc told me and my wife that day that I am the most amazing person he had any personal knowledge of and that there were only 3 or 4 people in the US that had ever suffered my extent of injuries and ever showed any significant recovery of abilities.

    And one day a few years ago I got to meet and talk with one of us..... Quite some conversation the two of us had that evening..... He has quite similar to my memory formation and recall issues. That Lindsay displays such a propensity for memory function is a blessing of unimaginable wonderfulness...

>>>> and after 3 weeks she was off all of her medicines.  Today she still sees a Wellness Chiropractor and she is still off all her meds.

    That is IMNSHO, is one of the three real keys to a significant recovery..... NO "MEDS"!!!!! Opiates (NOT "opiods") for pain when one just can't handle any more, and that is all. The medical "establishment" is absolutely full of shit when it comes to the "great promise" that any of the ever increasing number of substances of questionable efficacy and safety pharmaceutical are claimed to have.... Being numbed and dumbed into a happy state of submission is NOT anything even remotely approaching wellness or healing. The other two are 

1) CONTINUOUS every day forever more intellectual and physical exercise that requires pushing ones abilities to the very edge every day until one becomes pretty much "normal" and then one can back of from pushing to the very limit, the very edge of one's ability.

2) Now you can think what ever you want, but uhhhh, OK time to preach         OK you have been in a medical field for years? How many of those seeking "medical treatment", those diseased and disintegrating people, how many of them adhere to a clean and natural diet? Ever look into the Seventh Day Adventist's long term health studies? Maybe everyone still alive in America should....

   A clean toxin free diet and environment. No more neuro exiters, endocrine inhibitors, persistent estrogens, no pesticides no hebicides no GMO's no grain fed animal foods, no "cured" meats of any kind. Real food, real whole natural fats, real whole unrefined carbohydrates, real clean "uncontaminated" animal proteins..... NOT a diet full of fully and semi synthetic compounds of known to be harmful and/or uncertain neurologic and endocrine effects.  You can think whatever you want, but the industrial agriculture and agro-chemical and pharmeceutical industries are based on little more than lies and deceit and fantasy land wishful thinking....

And... one more. What Queenie say: MUSIC!!! All kinds of music, from Metallica to Martina McBride to Motley Crue to Michele Branch, classical jazz rock blues R&B all the time..... I swear by it! The old saying about music soothing the savage beast? It's really true..... Music is like math that you don't have to think about..... patterns and scales and this changing to that and listening is free and requires no effort at all

   Lindsay has a lot of potential!!! OK, so it's hard to find a survivor. You have found one. One who wants to leave you filled with hope and optimism. I might be a little bit self deceived, maybe even fully delusional. But... Look at it this way.... I figure I am doing pretty good for someone who woke up dead and was expected to stay that way, then when somehow surviving was in a coma and expected to stay that way, then upon becoming conscious but not aware was expected to stay that way, then upon becoming aware while a physical and emotional and intellectual basket-case was expected to stay that way too.

   Lindsay is only 21, she has a long life of ever getting better in front of her.... I once met a beautiful tall red headed (I have been told I always had a thing for tall red headed women, that must be why I married a 5'1" raven haired once upon a time majorette) rehabilitative medicine specialist who showed me the scar she carries as a reminder of how when she was 13 she had 20% of her brain removed to keep the cancer from killing the rest of her. I told her that it seems to me that the younger one is when ones injuries occur the better off one is over all. She told me in some ways I was quite correct and that the younger one is when one starts their road to recovery the farther that recovery is likely to lead.

   That might be true, but, I was 49 when I woke up to the me I am today.... And 10 years on I'm far from perfect but I'm pretty much alright.

    So, hey, listen to me Sonja, Lindsay is only 21, push her hard to get a little better every day.... She might just change the world one day.....

   OK Sonja, I am done, everything I said about me above is 100% true.

    I hope it all leaves you with some hope for Lindsay and her future.

  

  

[Sonja Goins]

Thank you Queenie

I read this to Lindsay the other day and since then I can tell her to sing and she immediately corrects her posture!  I am prayerful she will continue in her healing process.  Thank you again!
 
Queenie Alexander said:

Hi Sonja,

Your comments are fascinating.  My partner, with a very similar injury to your daughter's, has also benefited a lot from chiropractic.  Singing lessons have also helped a lot in self-monitoring, posture and, I believe, thinking.  I wrote about them elsewhere on this site... not sure where anymore.

best.

[Queenie Alexander]

Dear Arthur,

Just saw your reply.  So great to read you, and amusing.  I love the stuff about Linux and will copy it to James and push him to read it soon.  It is now 01.20am and I am going to go to sleep, but I want you to know how greatly appreciated your detailed reply was. I would love to read more.

[Queenie Alexander]

Hi Arthur,

However you wrote all that, you must have been interested in what you were thinking, because you wrote very fluently and well.  I know nothing about chrono-biology but I can tell you that James has always described me as 'chronometrically challenged'.  I actually have a similar way of dealing with time as you do.  It is extremely difficult for me to reliably carry out something 'three weeks from now' or two days, although I do have some kind of system that means I generally achieve priorities, but even elaborate diarizing can fail me.  And I do not have TBI.  I think that I have my own internal system of priorities and it is very hard for anyone else's to affect me.  I operate on very long cycles of 'to dos', working on very long term projects, like books.

I was interested in what you had to say about "able to figure out almost anything in my own, just in my own weird way".  I am writing about James in this regard (and must get back to the book before long this morning, speaking of time and planning).  Here is what I recently wrote:

"On personality and the wise old neurological ape inside

It seems to me that, except for when he was almost continuously delirious that, even though he did not know where he was or his age at times, he sometimes had a deeper sense of what was happening.  I do believe that that deeper sense remains there and that it is the original James.  No-one really understands the nature and location of the personality, but those readers among you who are aware of their internal dialogue, have you ever wondered who it is you speak to and obtain counsel from?  Who is that friend who seems to monitor your every move and support you in distress and in triumph? I have a concept of the intelligent ape within us – as the genetic hardware we are born with.  It seems to have its own native intelligence and judgement.  The culture and knowledge we acquire from our social environment seem like humble software in comparison.  These interface with our physical environment, feeding back information to our wise old neurological ape, who interprets these perceptions according to timeless principles.  The particular cultural interface we acquire after birth, through being reared in a specific society – language, beliefs, rules, education – mediates social specifics into ancient categories upon which our wise old ape bases its emotional judgements and its wise counsel. That wise old ape has a personality and a rock-like sanity.  It may even be that a limited number of editions of this identity is shared by the species and that the only real difference between people is the way they interface socially, which is acquired culturally."

I arrived at this concept from observations of my own consciousness but also from dealing with psychiatric patients over the long term.  I also remember an interesting exchange off-list with a peak oil correspondent years ago, which got me thinking about all this more analytically.

Oh, regarding the detention for sleep study, this reminds me of what James wrote whilst still delirious and disoriented.

"Please arrange to have someone come and talk with me so that I can understand what I am doing here and why I should not just walk away as I would have thought any citizen could."

I do enjoy reading you, Arthur.  I do not dare draw James's attention to this correspondence for the moment because he is supposed to be meeting a very late deadline writing theory on an application for C#.   He is perfectly capable of distracting himself from it all by himself but I am loath to add fuel to the fire, but I do mean to get him back to your stuff soon.

best,

[Queenie Alexander]

This is a quick reply to Sonia about the shunt.

I imagine that there are other ways to deal with swelling of the brain, using drugs and hormones - cortisone, dexamethasone (I'm not real familiar with these). A certain amount of swelling is often to be expected and treatment probably depends on the amount. Suggest you start a new list topic with title such as, When is a shunt vital for brain-swelling? and see if you get some technical answers.

  On the face of it, your concerns seem valid until you get a straight answer.

Some quick advice is to write a formal letter with copies to various heads (including nursing and hospital administration) of the medical ward and hospital treating your daughter, stating your concerns, asking the questions you want answers to, and asking for an explanation or action.  If you think you need more clout you could cc a politician or a lawyer, although that might be for a follow up.  The thing about letters is that they are kind of on record, unlike conversations and hospitals are legally obliged to include them in their records (in Australia at any rate).  So medical and nursing staff generally feel legally obliged to pay attention to them.  You must of course keep a copy yourself.  Send the letter electronically, take it by hand and send it by snail-mail as well, for maximum impact.  If you can, take a friend in with you when you negotiate, to keep you on track. You should be able to ask for a family meeting to discuss treatment at the hosp. Of course, taking the test results etc to another doctor isn't a bad idea.  (Theses things are pretty cheap in Australia but who knows in the US - sorry, political aside.)  Can you ask advice of your insurers - tell them of your concern.  One hears here that all US medical insurers are bad, but perhaps there are avenues there.

I have to go to my last radio show on the Mornington Peninsula in Australia, or would chat more.  Best of luck.