Lost & Found: What Brain Injury Survivors Want You to Know

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

As an ill-health retired individual with head injury for 17 seventeen years; after being comatosed for three months i have a feeling that there is a missing puzzle in my life but can't figure out what the puzzle is?

5 years later and I still have some of the same symptoms. I am learning how to look after me because others don't know or understand the day to day things it takes for me to have less stress, fatigue, and/or confusion. The thing I miss the most I think is the ability to sense when someone is near me yet not in my visual space. So I easily don't know if someone is waiting for me to move out of the way, has come up behind me to scare me or has entered the room I'm in. My driving seems impacted by my inability to sense as well. And I am not comfortable in many places and am bothered by light changes and darkness. Thanks for this article. As others have said I will print to remind myself that others are going through the same things that I am. Things may get better but I am glad to be alive after a person almost took the lives of me and my family while trying to end his own life.

After a severe TBI 19 years ago, much of this article still rings true.  I am a special ed teacher so when the weekend hits, I am toast-sleep off my week, deal with migraines etc.  

I'm one of brain injury cases. I've a lot to share. I still see 20 days missing from my life. And sometimes i can see it all when Im angry or very happy. :)

WOW I'm everything that you listed and a whole lot more. My accident was 5 years ago. My son and I were in a boating accident. After being misdiagnosed for 2 years I FINALLY found a Dr who labeled me as have labrithine concussion in both ears and right frontal lobe concussion. I finally have been receiving proper treatment. Each day is a struggle. It totally sucks but I remind myself when I get really down, upset and depressed.....Im very thankful it was me that got hurt and not my son. We can't change what has happened to any of us. I can walk, talk, drive when I have to (I'm only 47). Our accidents could of been much worse. I wake up with an ugly headache that follows me through the entire day. But at least I get to sleep in my bed and I do wake up each day. Always try to keep your chin up and stay as positive as you can. FYI I'm sitting in the backseat of my trk taking my son back to the airport for his third year of college. Life's as sweet as we can make it. Stay strong and try not to hide the "new true you!!!!" It has taken me over an hour to type this 😜

Almost 3 years ago, a 12ft metal pole slid down and smashed into the side of my skull. The fracture was several inches long and even though the skin didn't break, it stretched as far as it could with the bone and swollen brain pushing it up. At the time there was also a depression fracture the size of a half dollar coin. Because there was very little blood and I didn't lose consciousness for very long, I was told that I was fine and to walk it off by my family. They weren't worried, so I didn't worry, but that didn't stop me from noticing all the things I was suddenly having trouble with. I needed more sleep, I couldn't stand the light, I cried over nothing, I was forgetting things. Words, memories, events, schedules. All gone. I'd get stuck trying to find a simple word like "dryer" while doing the laundry.

3 years later, and my head still hurts. I still have periods of confusion, but I do hide them better. But 3 years later, and everything on this list is still so relevant. If I'm feeling overwhelmed, I withdraw, and even though I try to push myself to the point and past the point of being overwhelmed, I know that may not be the best medicine. But I still have so much trouble conveying that I am trying. I'm not lazy, nor have I become stupid. I'm glad to see I'm not alone in this.

Two months ago I suffered a TBI, skull fracture the length of my skull through the thickness of the bone, two brain bleeds and an occipital hematoma. According to the doctors I had the most severe concussion one could have without requiring brain surgery. I have lost a nonessential part of my brain permanently. Although I look normal on the outside, I feel so different on the inside and haven't been able to express in words how I felt. This article explains exactly what I am going through and I am sharing it with all my family and friends. Thank you. I am glad I am not alone.

It's been 8+ years since my TBI.  All of these things still apply.  Just the other day I was reading (which wasn't possible at the beginning!) but what I was reading required a lot of thought and I was sick for the next two days.  It sounds ridiculous to say it out loud but thinking makes my brain hurt.  Thank you for re-posting this article.  SO true!

Barb J

This article is still relevant in 2015, thanks SO much for publishing it!
On October 4 2014, I was crossing the street in a marked crosswalk with my boyfriend when a man ran into me with his Ford F150 and purposefully attempted homicide. 

I would've died if my boyfriend hadn't attempted to pull me out of the way. I had to relearn to breathe and walk unassisted and, while I'm INCREDIBLY lucky that my boyfriend pulled me forward when he did, this injury has still set me back about a year (approaching 10 months in the recovery period now).

I've been working with the fatigue and a new sort of mental fatigue that is quite difficult to put into words. I'm so glad to be able to use ANY words now though - couldn't express myself properly through speech/writing (relearned how to write too) for weeks! I'm steadily improving, but patience is IMPERATIVE. I can't say enough how I appreciated the acknowledgement of how important patience is to the recovery process. We are rebuilding entire pathways in our brain after all, it's absolutely necessary and not to be taken for granted!

Thank you again, linking to this on my blog!

This is one of the best articles I have read that totally explains what I have been going through. I was in a head on collision in 2012 and suffered with headaches and this feeling of just being "off". It was very difficult to explain or understand. I started getting some treatment a year after the accident from a chiropractor who specialized in headache control/relief. After months of treatment the symptoms started to get somewhat better. Then in 2014 I slipped on the ice and hit my head again pretty severely. This started all of those symptoms up again about 3 times worse than they had been. Now having had 2 concussions within a short amount of time and being a busy person thinking I didn't need to take time to recover, I tried to keep going on. Around the middle of last year my head decided it had done enough and just quit allowing me to function right. First my eyesight went from seeing ok one day to not being able to focus in on things, then the headaches got so bad they never stopped.  Then it go difficult to drive. I finally saw a neurologist and was diagnosed with post concussion syndrome. Unfortunately there is no quick fix and I am doing Botox for headaches, vestibular therapy and vision therapy. I am having some better days but like others have said, there are still lots of bad days too. I have become an expert on understanding most of my triggers though and that has helped me to avoid certain situations that may be difficult for me.  

Wow!  Don't know what to say!  I have suffered my third concussion in three years on June 12 of this year.  I was already struggling and being treated for Postconcussive Syndrome from the two in 2012. Need I say this concussion has added insult to injury (no pun at all intended)?  This article is beyond perfect and says what I am struggling to convey to family and friends who see me as some sort of anomaly.  This should be at every Dr's office, healthcare facility, and hospital that treats patients who have suffered TBI and given to the families as required reading. Thank you!

I am a survivor, at age 3 I fell from a balcony to the concrete steps below. i was rushed to the hospital. i was in a coma for 3 months and on valentines day 1978 i was given a plaster replacement for the shattered right side of my skull. i am now 41 have a wife and daughter and with some coordination defects on my left side. i have regained all my physical movement although struggle with spelling, and comprehension related issues. my hope is i can find a way to GIVE HOPE to those that have or are experiencing similar struggles 

I was in a motorcycle accident July 2005 on I-76 in Brimmfield Ohio and it has been amazing. where I have been since then working as a Electrician for Lockheed Martin in Akron Ohio and then in Reston Virginia. I don't even understand how I made it from NE Ohio to living in Harpers Ferry WV to commute into the DC Metro area to work. After all those blessings I was laid off in January of 2012 and I returned to NE Ohio and slipped into a rut having the fear of people and it has been creating a employment nightmare for me. I have been having major health problems related to my past TBI and no insurance to get medical care. Really at a point where I just want to give up! I did try the healthcare.gov site that turned out to be a dead end also.

Lost in Ohio Mark

Great list and all symptoms I have suffered from one degree to another. I had to learn to drive again because my attention span was so short I would forget I was driving if I looked away from the road for a second.

All this was caused by a surgically induced TBI from an ENT that was performing a ‘routine’ sinus surgery. He punched two dime size holes into my brain and pushed sinus bacteria into my brain then tried to cover it up. The resultant brain infection pretty much scrambled my short term memory and the follow on brain surgery removed ½” of necrotic left frontal lobe.

This has led to all sorts or memory issues as well as typing dyslexic. Everything comes out backwards. For years I was ridiculed by my wife and kids for my poor memory. I would repeatedly tell them if I don’t acknowledge you and confirm what you’ve told me then it hasn’t registered.

After ten years I feel pretty much normal but still have issues of recall when trying to think of things. Just glad I’m alive and functioning pretty well. 

I wish more people could have access to this excellent article.

Wishing all you survivors out there the very best and steady progress

in your recovery. I know it can be frustratingly slow, but keep going forward.

I had a TBI in June, 2012. I fell 13 feet onto a concrete floor. I have not been the same since. I sometimes feel like I am a person watching an animated body in autopilot. No one anywhere is sympathetic to my problems. Which is weird--I don't want sympathy, I want functional understanding so the New Me can function within the previously existing system I lived in. But that seems impossible. No one around me is willing to flex at all, or to encourage what I am doing well, and they make wild accusations about the discontinuity previous to my injury. I am not doing anything wrong, but still I am abused by those around me who in their ignorance do not understand what comes of a TBI. It is very despair-inducing. I am not improving at all, which is also despair-inducing. I wish that American society would pull its collective head out of the sand and stop insisting that every living creature be a perfect healthy happy clone. I am not happy, perfect, or healthy and as much as I would like to be, it's not in the available options. The very last thing I need is judgment for memory lapse, emotional breakdown and social fear. I am sure many can relate. Love is what we need.

This information is invaluable.  When I thought I had a basic understanding of post TBI conditions I did not.  My nephew was in a near fatal car accident in 2007 and to this day struggles in so many ways, and we realize now that his brain cannot fully recover.  It hurts to see him frustrated at who he is now versus who he was before his injury.   With better therapy and good meds, he is managing.  This information would have been such a blessing when he was first injured and going through the first year of physical and brain rehab.   Thank you for putting this out here for all to see.     For the multitudes of wounded warriors and their families I have befriended over the last ten years, and for all those  who suffer with TBI .....those families could have had a much clearer understanding of the TBI had this been available.   But we/they have it now...and we will do all we can to share this article.

I had a brain tumor removed from my brain stem 54 years ago. I woke up a human vegetable I was blind and could not do anything but hear. It took me over two years to mostly recover but have dealt with aphasia and balance problems ever since. I have had a wonderful life, married had two children and a great life. My children grew up supplying words when I couldn't find the right ones. Now my grandchildren say that they can speak grandma too. Mostly when I am tired.

This is really very interesting to me. This sums up my experiences, which have been getting worse with time. I didn't have one specific injury, but as a result of clumsiness and recklessness, I've had nearly 10 concussions in as many years. I'm finally seeking treatment for my anxiety and panic disorders(almost always caused by over-stimulation) and my provider suggested Post-Concussion Syndrome. I plan on seeking advice from a neurologist, but I want to cry because this makes so much sense and it feels like I finally have an answer that has eluded me for so long. Thank you for this. 

My brother in law is brain injured. Love him to bits. Another thing that occurs to me though, on reading this, is how much it reminds me of dyslexia. In many ways processing is time consuming and affects my ability to cope in similar situations. Of course, not to this extent. But I thought the similarities might have a basis from a biological science point of view. I'm dyslexic and suffering from stress also because the people I worked with did all the things the article says not to do. But they knew what they were doing. I'm currently suing. My dyslexia mainly revolves around short term memory problems. I also can train my brain but also forget basics not done regularly. I have to think through very basic things with great care sometimes. I related to a lot of the points in the article about processing, tiredness, repetition and emotional ability. Brain injury is misunderstood. I've seen my brother in laws condition misrepresented at mental illness in an court case with appalling consequences. And it's so obvious! Dyslexia is also hard to understand and I've suffered as a result. People can't accept what they can't see. Anyway, I just wanted to say thanks for the article. Very helpful. Julie Prince Ilkeston Derbyshire

Truly beautiful ...

Every thing listed I deal with every day and night. I was in a motorcycle accident and got hurt very bad. emts said I was dead, Drs said no way I could live. I live with ptsd and a brain injury but I'm alive.

Well, find this place has been very interesting for me. I think there´s also other kind of TBI and is caused by pathogenic agents like virus, bacteria and protozoa, I´m a 35 years old male, in my case five years ago my brain was massively affected by HIV, generating me HIV dementia phase 4(nearly to death and bad forecast), that´s Alzheimer like, temporarily(six months) lost nearly all my skill, my short term memory, i came on wheelchair to the hospital, i could move me , i was full of spams, i didn´t recognize my family. Reading all the post i feel me identified with many things said here, many thing that i happen on my recovery, it was between 3 and 4 years oscillating between frames of mind, i was a kind of bipolar, with memory, coordination, speak, movement problems, it´s sooooo hard, finally i´m nearly ok, if you see me you couldn´t say all that happened to me. I feel that my personality changed in some areas, i feel more lonely, some kind of proud about survive to all this by my way, work is not the same, the routines are not the same, i initeriorized a kind of double stigma HIV and a TBI like at hour of romantic relationships, this area has been the hardest, too ´cause after my illness i have had libido problems, loss of desire, impotence, loss of interest on same sex(i´m gay), my endochrinologist told me that possibly is caused by hipocampus damage in the libido area after see my MRI. A great medic friend told me that give me time(but has been five years with little improvement), ´cause in my case neuroplasticity has made wonders, but i miss so much sexual area. I would know if there´s any kind of hope about libido return. Thanks for read me

My husband suffered a TBI in June 2012 from car accident. The doctors told me he would die that fateful night. It has been hard to witness a man who would love gardening to clicking the remote over and over. He is so different and I wish there was more support for the caregivers. The TBI person gets the support and love..but as a caregiver for my husband and epileptic brother....really wish more support. Bachc1958@gmail.com.

Hello everyone I am a brain injury survivor was hit by a truck on a highway at age 11 was found dead for three hours and put in induced a coma doctors said I would never wake up and if I did no chance of me living properly. I woke up not knowing anything had to relearn everything doctors said I would never walk again, but I did people have told me every one of my goals was going to be impossible because of my TBI but I am a professional musician, rapper, computer system repair professional, published poet and public speaker. Even people who have a TBI, or other injuries can do amazing things I can relate to how hard it is to believe in yourself, but as a survivor to others like me just know we are all miracles that can do anything

My little girl suffered two TBIs four years ago at age thirteen during brain surgery. One of them was a stroke which initially left her paralyzed on her left side. She is severely autistic and non-verbal as well. She has recovered a lot of movement on her left side, though she walks like Quasimoto, and seems to have frequent headaches. She has poorly controlled seizures, serial episodic vomiting and often stays in bed till early afternoon. She is missing part of her skull which they were unable to replace because of complications, so she wears a helmet to protect her head. Reading these stories gives me more insight into how to help her have better days. Thank you. Is anyone else out there walking around without part of their skull?

PERFECT LIST! I've been accused and treated as though I'm healed now and it drives me nuts! The stuff on the outside- that's the physical right? everyone expects me to be healed and fine (17 years later( just because the outside is healing and much less obvious than say when I was in a coma! But they'll never have a clue about the s*it going on in my head! lol This list just says everything so well and focuses on where the problems really are- in my head! Printing this and framing it!
All the best;


Thank you for sharing. I struggle with contraction and focus with too many noisy things going on around me too.

Thank you Thank you Thank you - this article describes EVERYTHING I've been facing since I had a sub arachnoid hemorrhage in December 2014 - I feel so alone in coping with the issues - and the Dr's keep saying it's all normal, but until reading this and all the comments I had a hard time accepting that.  My main concern is they can't tell me why it happened so how do they know it won't happen again.  But knowing others are facing the same symptoms does help me not feel so alone.

Almost three years ago I fell onto a hard tile floor due to an absence seizure and severely injured my brain. Taken to hospital by ambulance and was in an induced coma... five weeks in the hospital. Finally the problem was diagnosed and the correct medication prescribed. I quickly came to myself (sort of) and was discharged. Off driving for a year. I cannot remember many things from that period, so my family filled me in. I still have memory lapses and I think I am still on the slow road to my normal self. Many thought i was not going to come back when I was in hospital. God is powerful in this. I continue on my road to recovery. This article showed me what I am going through is what I can expect. My prayers continue.

TBI ... you only know it if you live it

I want to add recovery never ends no matter how many years pass. In my case I have very little pre severe closed right frontal lobe tbi memories at all due to my head injury occurring at 9-10 months of age about 25-26 years ago ( in the age range with the highest fatality rate ). The fact I have memories from before at all is due to hyper development of my brain prior to the injury resulting in a cognitive age of 12-13 when the injury occurred. The only reason I survived is theorized to be other abnormalities in my brain that minimized damage, and excluding minor behavioral issues and difficulties with soft social skills and short term memory I have recovered very well. I had years of therapy though and for two years of that I could not articulate properly and was " trapped" in my mind and suffered from suicidal depression by age four. All these years later articulating my thoughts into words can still be an issue and I still fumble words on occasion. All the tips on this list represent what people should know at minimum.. Sadly they don't and getting them to understand can be a pointless endeavor. My injury has been with me my whole life more or less, at 26-27 the thing I notice most is people ( especially family) still treat me like a child, or a freak because I am different and can never be normal because I never knew how to be that way in the first place. Even my friends notice my oddities many I can't control and try to " help" me unaware that I have spent my whole life coping with these issues despite my explanations. If I could have one more thing added to the list it would be : Don't presume I am stupid due to my head injury, don't think I lack comprehension of what it has caused and changed in me, and never tell me my tbi is an excuse or not the cause of my behaviors when I know it is and exactly what it triggers. And never point out how abnormal I am because I am fully aware of this, and it kills me inside some days to know that I never had a chance to be normal, just imagine what that is like.

I had a Closed head injury in 1990. I have progressed mentally. I am still in a wheelchair or walker. Reading all the success stories has inspired me not to give up!


so good that this is reaching so many people 

I had a craninotomy and radiation. I thought I would be my old self in 2 weeks. Was I wrong! I need to be patient with myself, and realize it is going to take time to heal, and that this experience is different from any I have gone through. I need to respect my brain, and treat with care.

My 37 yo daughter had a prenatal stroke which resulted in her having cerbral palsy and which has impacted her mentally as well as physically.  So many of these points seem to be true for her also.  The article gave me a lot to ponder.  Maybe if we were aware of these issues with her, her dad and I would be more patient and understanding of her needs.

This is interesting. I had meningitis ten years ago and ask questions over and over again. Even though deep inside I think I know the answer I ask again for reassurance. It's very difficult having to second guess 24/7

OMG--Reading this article was amazing...I kept saying to every line....Holy Crap, that is me. I was involved in a Commercial Vehicle Accident on 11/13/2013..ejected from the vehicle, flew airborne into a concrete bridge post, was knocked unconscious and required (37) staples to put my head back together. I will, like commented above, print and hand out this article to every person who is a part of my life. Thank You.

It took me a 1 1\2 years to see this. I carry copies of this with me and have handed out more than 200 copies, and I will continue doing this until I'm comfortable with life itself! 

last week my boyfriend fell and he hit his head so hard and was knocked unconscious and was revived at the hospital and was told he was going to have short term memory loss . And now doesn't remember anyone but his young sister...,it breaks my heart....,not knowing if he'll ever remember again.

My son had a car accident not wearing his safety belt on 1 jan 2015 i am still here with him in the hospital never leave hes side has open he's eyes track people when they speak to him he move he's feet n legs hands but still don't follow any commands still cant stand or walk. But i have hope and faith he is going to be ok

Please hold hope and pray. Our son was never expected to survive and he is our miracle as we are approaching 3 years post accident. Life is never the same but it can be enriched. It takes time, patience and faith.

My husband is a resent TBI Dec 22, 2014 our world was turned upside down. Doctor's call him a miracle for just surviving, they didn't expect him to. I know him and how strong his will is. He was trying to help me be positive for I have lupus n would tell me he was my Super Man My Man of Steal. So every day while in coma, I tell him come back to me My Super Man fight and squeeze his hand and he would squeeze back. Doc say don't get my hopes up that he is not responding to me. I have faith he is hearing me and responding to me and 1 day My Super Man will come back to me.

So true! I have a tbi from 05. Was in a coma from us two . I had to relearn everything. every bullet point matches my the symptoms

Oligodedroglioma grade2 dx 5years ago, expecting its return ANYDAY...doctor say when it regrows I'll get chemo/radiation therapy. My life has not been the same since that day when the onset of a seizure and the dx of a cancerous brain tumor. This article really does help explain where I'm at with it all at this point ... Short term memory loss, depression, panic/anxiety attacks, the chance of grand mal seizures, personality/mood changes, not being able to multi-task, I have a gaping dent in my skull, and..my balance has went to hell. I used to be an excellent reader, scrabble player, free thinker and had a job earning a meager living. None of that applies now. I'm looking for the new me...the after cancer me.

Omg you literally just summed up my whole life!! I'm a brain tumor survivor, 6 left temporal lobe surgeries '91-'07 I struggle every single day with short term memory since the day I was diagnosed with epilepsy in '88. I'm seizure free since 10/'06, but life will never be easy for me!! I'm 33 yrs old, and still trying to find a career and independent life for myself, sometimes life just sucks..

I had a double brain surgery at the age of 15 and the next year that I went back to school it was like no one knew I was gone and my friends all left me. Having brain surgery was the worst thing that ever happened to me and I suggest that you don't get it at a young age

Wish I had seen this article three years ago when my daughter had a car accident and suffered a Sever Traumatic Brain Injury - she is now 24 years old and we still have good and bad days and there is a lot of things I would of done different with her if only this had been made available to all families and friends of TBI patients. Thanks for sharing.

Really helpful. It puts down in words and explains a little why I am the way I am. It's been 10 years since my Abi. Most people who only know me since that time, don't know what I was like. And how Well I'm doing now. I can be hard work but im worth it. I still have a lot to give :) Justin

Really nice article you write, very inspiring all to life ...