Diffused Axonal Injury
 

It was suggested that I repost this here from someone at the welcome thread.

I have a daughter that acquired a severe enclosed brain injury about 18 months ago from an auto accident. The doctors seem amazed by her recovery. From her initial prognosis to where we are today, I’m astounded. She was diagnosed with a severe diffused axonal injury. The doctors described that she had brain shearing throughout about 80% of her brain. She had two tears in her brain near the brain stem and an indeterminable amount of damage due to low oxygen saturation levels. Aside from the brain injury, her lungs collapsed, she had damaged organs, internal bleeding, and a few broken bones. The fact that she survived the physical injuries was a miracle. I was told around 90% of survivors with her type of brain injury never wake and those that do still had quite a grim prognosis. Looking at my daughter's recover, it's hard to describe her recovery as grim. She is a huge inspiration to me and many others who have shared in her journey. I try to be vigilant about seeking out all the information I can find to help my daughter progress to the best of her abilities.

Currently, she has significant deficits in memory and cognitive abilities, but is doing much better than I ever imagined. I would love to hear from others with a loved one with a severe diffused axonal injury. Since 90% of survivors never wake from their comas, it’s been very difficult to find others with a recovering patients to converse with to share strategies to help my daughter cope and potentially recover even more. She’s still in rehabilitation therapies, but I’m not sure how much longer that will last since her progression has slowed down so much. I look forward to any information that can help us and sharing any information I have that may help someone else!

Angel,

Sorry to hear of your daughter's injury. I have a friend who suffered a similar injury except he was in a coma for three months. It took him two years to learn to talk and walk. That was twenty years ago next month. He is fully ambulatory. Talks with just a bit of a struggle. Is a Master at backgammon. Travels the USA competing in Veterans' Paralympics. His busted body limits his full mobility.

You can likely look forward to a different personality. She is the same inside by will struggle to relate to others in the same way. You desperately need to read Dr Glen Johnson's TBI Survival Guide. It is online at www.tbiguide.com and available for download to print out at http://www.drakecenter.com/file.axd?...vivalGuide.pdf

Most important is to be non-reactive to her struggles. She has enough negative reaction inside her mind. Support her. Accept her as she is now. This is the new her. Help her accept her current condition. Try to treat her like a normal person. Limit the chaos in her life. Loud noises, visual clutter, voices. Too many voices at the same time can be overwhelming to most TBI subjects.

The lower her stress levels, the better her brain can heal. Stressful events can set her back days or weeks. Too many visitors for the holidays or just a get together can be stressful. Try to learn to recognize when she has become or is becoming overwhelmed. You will likely see it in her eyes. Her gaze will start to look vacant. Observe her environment and try to help her avoid such an environment in the future. She may be able to talk with friends for a few minutes but not a half hour. This is normal.

Let us know about her difficulties. We are a diverse group of TBI and mTBI people with many life experiences.


My best to you and your daughter.

Hi Mark,

Thank you so much for suggesting these readings. I will make sure to check into them. :)

I'm so glad to hear your friend is leading a productive life! It sounds like he's been through some great struggles of his own. My daughter's speech was one of the last things to return. It took a year before she could put an understandable sentence together and it remains her most noticeable problem.

We're very blessed in this my situation because her recovery is phenomenal considering the amount of damage to her brain. I know most in her situation aren't as fortunate as her.

She is very verbal when she is irritated so it's quite easy to tell when people need to back down. I encourage her to speak her mind when people are bothering her. It helps prevent violent outbursts. Before her accident, she was highly intelligent and gifted. She's still incredibly intelligent; it's just hard to make others see that now because of her speech problem and processing issues. She is also bipolar so it's hard to tell what causes outbursts now. I've had years of practice on not overreacting to situations and calming her down. This experience has been very handy over the last year.

I have tried various things to help reduce stress for her and I'm still working on finding things that work for her. She seems stressed a lot and refuses to talk to counselors. All she says to them is...I don't want to talk to you. I've respected that and took her out of counseling. She's 18 now and that is her decision. We talk about things often, but all I can really do is listen because most of my replies don't seem to help. I have to be honest when I speak to her or I'm not treating her normal and she would know if I were trying to sugarcoat things.

We do our best to go on with life as normal. We realize she's an intelligent person and we treat her as such. The hardest thing is getting others to treat her normally. When you look at her, she looks normal so she's okay at first with people. It's their reactions to her when speaks that irritates us. I would love to know how to reduce the negative stigma that is cast towards her when she speaks.

I really appreciate your input and look forward to speaking with you and others in the near future.

Take care,
Angel

Angel,

My friend has similar struggles. I got him hooked up to the internet back in March. He can communicative by email without any symptoms of his injury. Email takes the speaking irregularities out of the way. He volunteers at the YMCA a few times each week and also at the VA hospital. This allows him to have social contacts with people who understand his difficulties.

I met him at a Brain Injury Support group. Have you checked into any Brain Injury Support groups? Ours serves both the injured person and their caregiver. It is very helpful. The caregivers group is very good for my wife. Even though I am likely the highest functioning in the group, my wife can still connect with others who deal with the same personality and cognitive issues.

There is a wide variety of TBI persons in our group. Some are wheel chair bound, others need canes or walkers, some are highly ambulatory but have speech difficulties, and the list goes on. Some live entirely on their own. Others live in a supportive group home or with family. The ability to observe all of the different symptoms, behaviors and personalities is very helpful.

Most are many years post injury. Their positive outlook on life is remarkable. My wife thoroughly enjoys meeting with the other caregivers.

I am sorry if I am babbling. I am trying to endure one of my many headaches while I wait for the Tylenol to take effect. This head ache started last night at 7:00 pm. It has come and gone through out the night and morning. Just another part of TBI or for me, mTBI/multiple concussion syndrome.

My best to you.

Hi again!

I'm sorry to hear your head hurts. :( That is something my daughter has to deal with occasionally as well.

I live in a very rural area and we haven't found a support group for TBI specifically. For the brief time my daughter returned to public school, I found a group that supports people and families that have teenagers with disabilities. Shelby is still in denial about her condition so we stopped going per her request. I don't feel forcing anything is going to help make her situation better.

Thank you again for the book! I loved that I could read it online and not have pay for it. I read most of it yesterday evening. I bypassed the hospital info since we're past that stage, but I do think it may be simple enough for my daughter to comprehend in small bits. Memory is a significant issue for my daughter so I'm not sure how she'll retain what she reads. We're still working on that.

I hope you feel better soon! :hug:

Angel

The download version of Dr Johnson's Survival Guide is free to download. For those that can afford it, he asks for a small donation to help with the costs of maintaining his web site. Web sites are usually charged based on the amount of traffic to the web site. He does a wonderful service to the TBI and mTBI community.

A downloaded copy can be reformatted to make it easier to read for TBI subjects who may have vision/reading p[problems. For example, I struggle if there is too much information or clutter on a printed page. It that case, I will break up the page to make it easier to read without my brain becoming distracted by the clutter.

Has your daughter had a neuro-psych assessment? These can be a good way of helping the patient put their symptoms into real terms. They can also help the patient accept that they are not losing their mind but just living with a mind that does not always work correctly. Understanding and accepting our dysfunctions is the first step toward learning how to work-around or make accommodations for those dysfunctions.

My best to you and your daughter.

My daughter has had two neuropsychology exams, the first May after her accident and then this past May. We're having at least one more next May. I think maybe the next one will resinate more because the improvement won't be near what it was the first year. During her first exam, she couldn't talk, write, or even walk...all that has returned to some extent and her smell completely returned.

In Shelby's mind, she's getting better and this will be over some day. It doesn't really seem to matter what others say. I don't know, maybe she's right. It's that same stubborn determination that has brought her this far!

I am surprised they did a neuropsych exam if she was so disabled. It must have been much different than the one this past May. What did the last one say about her abilities?

The WAIS-II scores and the Wechsler Memory scores will be most indicative of her abilities for school and other life skills.

They can direct her in her effort to be normal. If she fights against the weak areas, she will just get stressed out.

Most of my WAIS-II scores are very high except my processing speed is very low. Most of my Wechsler scores are very low. I have developed many skills for dealing with this condition.

My best to you.

Hi Mark,


At the time of the first exam she was leaving Day rehab from Children's Healthcare of Atlanta. It seemed that all the children that left that facility had an neuropsychology exam before they left. The two exams were definitely approached differently, but they measured the same things.


I don't understand how they measured some of these things on the first exam. For example, they provided a grade level for her reading ability both times. Perhaps this was required in the report for school. Her last exam put her at a 4th grade reading level, but as her teacher, I find that inaccurate. I would say she's easily at an 8th grade level because of her performance.


There's different WASI scores. Overall, the first exam had her below the 1st percentile across all the testing ranges. She fell within the 27th percentile a year later.


The full IQ was 78 the first exam and 105 the second exam. Prior to her accident her IQ was measured for the school's gifted program before middle school and high school, it was 129 when she was 10 and 145 when she was 14.


For her verbal skills, the Boston Naming test was in the 32th percentile and her D-KEFS verbal fluency test was in the 9th percentile. D-KEFS shows her ability to generate the right word. Her delayed recall was well below average. The report mentions she still has aphasia and dysphasia...these are the medical terms used for her speech difficulties.


For her nonverbal skills, all the tests were either less than 1 or at 1 percentile.


For Attention & Executive function, (WASI-IV Working memory index), was in the 4th percentile.


For Fine motor functioning, (WASI-IV Procesing Speed) was in the 2nd percentile.


Processing and memory are significant deficits for her.


Take care,
Angel

Duhhhh, It just dawned on me that she would not be administered the WAIS-II. It is for adults. (Wechsler Adult Intelligence Scale)

I struggle with aphasia, mostly in word finding. I sometimes struggle with comprehension, especially if the speaker has an accent. My brain can either decode the accent or decode the sentence, but not both. One of my work-arounds for word finding is to look around the room. The visual images sometimes trigger my brain into the right word pathway. Otherwise, I often get stuck and can become sort of obsessive in trying to find the word.

You mentioned that you are her teacher. Do you work at her school or do you homeschool her?

I have had to stop a lot of recreational reading. I cannot read fiction. I cannot keep the characters and story line in memory.

I love to read factual information. It is the only reading that I am successful at. I can put the facts together like a jigsaw puzzle. This linear like use of the information allows me to keep the facts in an indexable memory. I may need to read something many times for later recall but at least i can process the reading the first time through.

I read gobs about how the brain works and the latest discoveries, etc.

As I have looked back at my academic life, I have realized that I lost a lot of my verbal skills after my injury at 10 years old. I was never able to score very high on the verbal SAT. My vocabulary recall is problematic. I always did fabulous on the Math portion. In fact, I increased my score from 650 a year after my sophomore year concussion induced struggles to 710 another year later, even though I had not had a math course since my sophomore year.

My friend appears to have trouble with verbal processing. His brain likes to twist words into strange meanings. His visual skills are much better than mine. He is fast as a bullet with backgammon. His math skills are also very strong.

I use my computer to organize my thoughts because I get lost trying to organize them to speak audibly. One of my friends in brain injury support group has severe aphasia but is unapologetic in her attempts to communicate. I sometimes refer back to the old excuse that " I get my merds wixed up." Or, "My tongue got caught around my eye tooth and I couldn't see what I was saying. " This recitations tend to help me get my brain back on track.

It helps to develop a sense of humor about or foibles. If you smile after mixing up your words, others will laugh with you rather than at you. It also helps to tell those close to you about your struggles. Then they can be much more supportive. When others understand, they are not left feeling awkward and embarrassed.

My IQ was measured at 128 to 140+ post injury. I know that it was much better prior to my last concussion. Much of my difficulties are due to a very low digit span. Sometimes, it is only 3 or even 2. On my best days now, it can be as high as 12 or 13. Before, it was probably up near 18 or better. I had a photographic memory. Now, I am either out of film or low on available Flash RAM.

Yet, I am highly functional as are many of my severely injured TBI friends. The next year will likely have as much or more improvement than the last year. As she learns to work with the new brain she has, she will likely find new ways to do the things that she wants to do. Many TBI or mTBi subjects develop a completely new sense of compassion and awareness of the needs of others.

I can see when someone is struggling mentally just by the look in their eyes. Been there, done that, know what it is like from the inside looking out.

As her teacher, I encourage you to throw out the calendar. It only adds undue stress. Then, the accomplishments will appear to pop up out of nowhere. Being anxious for the future tends to dull the value of the future accomplishments. Don't worry about whether her glass is half empty of half full. Choose to use a smaller glass until she can handle a larger glass. It will come in time.

btw, I have a cousin who is a year older than me which would make her 56. She was severely brain damaged from a delayed birth. The doctors said she would never be able to take care of herself. She has been running her group home for the past 20 years. She may have some academic struggles but she also has abilities that outshine the 'normal people.' She has been very productive with her life even though at 15 years old, the specialists said her IQ was equal to a 3 or 4 year old.

Your daughter will accomplish much, just be patient.

My best to you.

Hello, It sounds as if your daughter is progressing well and she will continue to progress. I suffered a severe closed head injury that resulted in 2 months in a coma and a not so good prognosis. I went through all the conventional/ traditional treatments and rehabilitation but what helped me the most was a visit to Dr. Richard Neubauer to undergo a series of hyperbaric oxygen treatments. He is the father of HBOT(Hyperbaric Oxygen Therapy) and neurologic injury. He is at the Ocean Hyperbaric Neurologic Center in Lauderdale by the sea, Florida. Remember that the brain is very plastic and the body has an amazing capacity to heal. The fact that she is young means that her healing will be even better. I am also in Georgia and I assume your daughter probably ended up at Shepherd as I did. I also spent time at Shepherd Pathways. Would love to talk to you as I am a strong believer in HBOT to assist in brain injury recovery. Dr. Dianne Peek

I do home school her so we can do it at her own pace. We only do one course at a time. This may change later, but it seems to work well for her right now. We've been very fortunate to find an accredited online homeschool program that works with us.


I'm glad to hear about others successes and hope she makes it to that point. At the moment, I'm just happy to get through the day. :D

Angel,

I just read up on the Georgia homeschool regulations. Georgia is a good place to homeschool compared to many other states. I am not sure what the value of finding an accredited homeschool program is. My three children all finished through high school in our homeschool.

My middle daughter is a Staff Sargent in the full time Army National Guard and became a homeowner at the young age of 23. Her private school teachers considered her learning disabled so we brought her and her siblings home during 2nd, 4th and 5th grade. She ended up graduating by California's high early graduation standards when she was only 16.

Your ability to customize the course work and learning environment will provide your daughter all of the opportunities she needs to succeed. Keep in mind that what she needs most is to learn how to learn. The information taught in school is not as important. As she discovers how her own brain intakes and processes information, she will equip herself for what ever she wants to pursue in the future.

For example, when my daughter was AIT (Advanced Individual Training) to become a surgical technician, she knew she needed to sit at the front of the class. This way she has less distractions within her range of view. She also has less auditory distractions. Distractions were a big issue for her. We found that we needed to cover illustrations in text books or find texts without illustrations because they would cause her to be distracted.

A good system for spelling and other written skills is to use a computer. This way, they develop muscle memory skills as they learn to spell. It also provided an opportunity for 'mom' to not be the bad guy when grading a spelling quiz. They would type out the words on the computer with spell check set to underline in red squigglies.

Before they hit the space bar, they would review the spelling of the word. If they thought they spelled the word correctly, they hit 'space.' Bingo, either red squigglies for a misspelling or no squigglies for a correct spelling. If the word was misspelled, they would try again. Once they got it right, they would type the word correctly 7 times or more to over-ride the memory of the misspelling.

A rule of thumb is this. It only takes three or less repetitions to create a bad habit. It takes seven or more correct actions to overcome the bad habit.

So, Angel, you go for it and don't worry. She will do fine.

I could give you gobs of statistics about how well homeschool students fare in the real world. If you have any homeschool questions, feel free to ask. My wife is the true expert. She dealt with 2 females as they matured and cycled through the hormones of teen girls. No matter how inadequate you may feel 'some' days, you will still be doing a great job with your daughter.

My best to you two.

Hi Diane,

My daughter's rancho score was too low for Shepherd to take her. She had to be at a 4 and she was 2. She went to Children's at Scottish Rite for their impatient rehab and then day rehab.

Ultimately, it was a blessing. One of her schoolmates and friends that had been accidently shot in the head about two weeks prior to her accident was there. Their injuries were quite different, but both had brain injuries. He could talk and was surprising mentally all there. If he has memory or cognitive deficiencies, you can't tell. However, he couldn't walk and had difficulties moving because of his brain injury. They became quite competitive about recovery. It was good motivation for them both. :)

Thank you for sharing the HBOT information with me. I have not read about it yet. I will look into it and speak with her physiatrist about it when we see him next month. I actually have a list of questions for him. I hope he's planning on spending some time with her this time around because my list isn’t' getting any shorter. :D Actually, he's always been awesome about answering all my questions. I hate that we have to find a new doctor when she turns 22.

If you don’t mind my asking, what is your doctorate is in?

Thanks!
Angel

Hi Mark,

That's very insightful about her being able to learn opposed to what she's learning. I've continually worked on finding study habits that are helpful to her. She's a very hand on kind of learner. That was true before her accident. It's just really hard when we're stuck in courses like history. I've tried museums and other fieldtrips like that. It helps some, but it's not like math or science where I can really show her. Concepts are easier for me to express. I have a BS in Chemistry, AS in Biotechnology, and a BS in Business Technology.

Honestly, she's the one obsessive with grades. I’d be happy to throw those out, but we can’t if she’s going to graduate from high school. I would be happy for her to take that history final so we could be done with it and move on, but she refuses at the moment. She has a 90 now, but the rules say she has to make at least a 70 to pass the class. It’s open book, 6 hours to take it, & probably only about 35 questions. She can so do it! She doesn’t want to use the book because she thinks it’s cheating, though her IEP completely allows for it. She's very stubborn about some things.

I may be taking you up on asking your wife questions. :)

Thanks!
Angel

Angel,

You need to remind her that most true valuable education is not about memorizing the answers but about learning how to find the answers. Our school systems have had it wrong since modern testing was designed back ion the 1940's by a man named Benjamin Bloom. He created Bloom's Taxonomy to create categories of achievement that can be measured to demonstrate the achievement of 'GET THIS,' not the student, but the teacher. Most standardized testing is to gauge the teaching system not the students ability to learn.

There are many different ways to learn. There was a book written back in the late 1980's called Teaching Tips and Techniques. It was sold by the Weaver Curriculum people. It is very good at helping you discover how your child learns. It helped my wife immensely with our middle child (B). She is a very hands on learner. The pros said she needed 'Multi-Sensory Learning', she needed to combine sight, sound, and touch to learn best. Your daughter may be the same.

When B was in Surg Tech school, she struggled with the classroom 'book' learning. When she got into the practical, she surged ahead, so much so that she was offered her pick of hospitals for her internship. She chose Trippler in Honolulu. She also excelled there. She was offered opportunities to scrub in to spinal/neuro surgeries, do suturing, and other tasks normally reserved for a much higher level of training and qualifications.

When B was preparing to deploy to Iraq, the Surg Techs in her unit were all retrained as Combat Medics. They were trained along side the Combat Medics who had taken a 28 week course previously. The Surg Techs only got a 21 day Combat Medic refresher course with the Combat Medics. She aced it and was selected to accompany the General when he went outside the wire.

This is all to say that when you hone in on your daughter's best methods of learning and she recognizes it too, she will do very well. Her perfectionism may be a hindrance for a while but over time, hopefully she will learn to lighten up on herself.

With the subjects like History, could she instead of studying to a test, write reports about the events? This may be more in her mode of understanding. The open book test is also not to be discounted. They are usually much more intense than a closed book test. Again, they are about how accomplished the student is at finding the information, not memorizing facts and trivia.

An issue I have a serious difficulty with relates to history. I have lost most of my ability to index things chronologically. I may remember something happened but have no idea in what order or when it happened. This is not an uncommon symptom of brain injury. You would be wise to determine if she has such a problem. You don't want to expect a skill that is just not there.

As she goes through everyday life, encourage her to research anything she is unfamiliar with. The internet is a fabulous way to broaden one's mind. She can research her specific symptoms, those of her friend who was shot in the head, an issue that is mentioned on the news, etc. Developing an inquisitive mind with a strong sense of how to find answers will hopefully overcome any sense of special treatment or disability she may feel. When she can knowledgeably converse with adults, she will grow and mature in amazing
ways.

You mentioned her IQ issues. They can be a conundrum for the brain injured. I have always had a high IQ. Probably like your daughters at 14. I still test in the 128 to 140's range but my delayed recall is in the 5 to 12% range. The neuro-psychs tend to say this high IQ means I have minimal cognitive dysfunctions regardless of the memory scores. What they fail to consider is that high IQ with low memory scores are a strong indicator of organic brain injury, not an indicator of a lazy mind.

Don't let her think her memory struggles will cause her to be less intelligent. She will just need to find other ways of expressing her intelligence. For me, I sound much less intelligent when talking verbally. If I type my thoughts, I can use the monitor to help me stay in the thought and be much more expressive of my ideas. Her recall struggles may cause a similar struggle for her.

Regarding her friend who was shot, she needs to remember that a gun shot wound is very focused in the damage it causes to the brain. A blunt trauma to the brain causes a more global injury with a broader range of symptoms.

Regarding her stubbornness, try to find some information about how a brain injury can cause "rigidity of thought." I think Dr Johnson's Guide mentions this symptom. I need to remember that I can become very rigid in my thinking and have chose to allow or defer to my wife to help me let go of some of my stubborn ideas.

If she can come to terms with the idea that sometimes, it is her injury that is being stubborn and choose to let go, her life and relationships will benefit. This is probably one of the most difficult symptoms to live with, whether as the subject/patient or the friends and family. Maybe she can make some note cards or signs for her room and mirror that encourage her to defer when she is feeling stubborn.

'nough said for tonight.

My best to you both.

Another site you might want to try is this http://www.givebackla.com/?cat=192

They have their whole book or most of it online to read. It is for a person suffering a TBI and for the caregivers. I have found a lot of useful information to use for my own recovery. The authors talks in detail that the first thing that a person with a TBI has to do is 1. want to get better 2. recognize the problem(s).

good luck to you and to your daughter

S

I hope this isn't too off-topic. 3 of my children were homeschooled all the way; 1 from 8th-12th grade; the other just for one year (grade 11). I would like to recommend a website http://theswap.com which has a forum I've been part of since 1997.

Hi again, I lost this site so couldn't reply but now it's found again. I am a doctor of veterinary medicine, and you really should pursue finding out about HBOT for your daughter. Just call and talk to Dr. Neubauer. He is extremely nice. Your traditional rehab doctor will not know too much about this most likely and won't encourage you to try this, but I know it can help and at least find out about this form of therapy for neurologic injury. I hope your daughter is doing well and continues to do well. My best, Dr. Dianne Peek