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

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Nothing more for me to say other than "Thank you" !!! ❤

I can't thank you enough for writing this.

In 2014 I was in a car accident where I suffered a blow to the head knocked that knocked me to an unconscious state where I endured multiple seizures. I was out for about an hour and was given the okay to go home from the hospital the next day.

In the fall of 2018, I wrecked a motor bike (going about 60 mph) and hit the road head first with no helmet. Again, I was knocked unconscious where I endured multiple seizures and was out for about an hour. And peed my pants. After several tests at the hospital, I was released. No brain bleeds, skull fractures, or anything to speak of. Except a swollen head and a blurry memory.

I recovered well from this considering the circumstances, but I can't help but feel a little different than before. There's a lot I could say here, but I pretty much just feel like my thought process is very altered. I do small things without thinking like top off my coffee with water or unplug an appliance for no reason. I recognize it shortly after and become frustrated. I also feel that I struggle more with finding words to start sentences and trip over my words often. It's even become almost a joke among my friends. My patience and social butterfly capabilities also seem stunted, but I wonder if this is the injury or just me thinking too much about it. I do feel over stimulated often. Seems like I need more time to process simple sentences more than others. I also get frustrated easily.

I haven't talked to anyone about these issues because they are hard for even me to understand and my injuries have been dismissed. But I also don't want to dwell on them because it is what it is. From what I've read, it seems like we are mostly on our own in understanding ourselves and how our injuries have impacted us. But if we're still living, I think the best we can do is embrace our new selves and thrive on it. I won't pay a lump sum for someone to tell me the things I already know.

I have never written on any forum before. I hope someone finds value in this. I hope we can connect.

One love~

I do hope you find comfort in these articles.... please try to find a support group where you can share your symptoms... and please don't underestimate what you have gone through... you are doing well to recognize your limitations and find this website... all the best and don't give up hope.

My wife suffered severe TBI as a result of a hit and run when she was 17 years old. She is now 43 years old. She was in a coma for six weeks. She has all the symptoms that you have shown in your article and I have handled everything the wrong way and the article above has put me straight. Now I can see my wife is not alone (neither are you) in her behaviours and responses and reactions to things. I have been a complete utter idiot BUT I will understand more with what has been written, here. Like you, my wife is actually very intelligent and I see signs of that virtually every day. Thank you for your input

Dear Rachel, 4/25/19; if you haven't found a support group for brain injury survivors, I would encourage you to inquire through the Brain Injury Assoc. in your state. They can be very helpful, a place where people "get it'' and letting you know you are not alone.
Never give up, things can get much better.

This is a well done article! I was actually in tears reading it. I have a VERY large family who often love to have family gatherings. I often do not attend any of them. I am a RUPTURED BRAIN ANEURYSM SURVIVOR! While my family knows that I have changed they often make me feel bad for not attending the events. Reading and sharing this article really helps me understand that what I deal with daily is a real situation and I am not alone! Thank you so much for putting this in writing! #BAS2014

That is beautiful. Thank you. It helped me so much. Please keep writing. Bless you.

THANK YOU! I realize now that many people in my life just do NOT have the time or patience to deal with me now and this is NOT my fault and this is NOT on me. I need to cut those people OUT of my life and MOVE ON to healing.

I NEEDED to read this and I am handing it out to EVERYONE i know and to everyone I meet. And i am explaining to them that I am NOT mentally ill and i do NOT need to be punished or chastised, which is how I have been treated. I am SICK and I deserve COMPASSION. Thank you thank you thank you

my grandad is in a coma currently in hospital after a fall 9 days ago. He has swelling in the brain. we are waiting for it to heal so that he will come out of his coma. Doctors are very negative but i feel he will make it through. anyone else been in a similar situation?

There is hope! I was hit by a car on my road bike and in a coma for ~7 days. The doctors told my wife to expect the worse, e.g., that I may not remember who she or my kids were, may not be able to speak, etc. God willing, I woke up on the ~7th day and, while I couldn't physically hold anything with my hands, I was able to remember everyone and eventually speak. I am a walking miracle and hopefully your grandpa will be too!

God bless you

In my family's experience doctors tend to give you the worst case scenario. Stay positive together for your grandpa. It will be a long road and he will need you all. My sister was in a comma for 2 weeks with severe swelling and had to work hard to learn all over again and 4 years later is still dealing with her new reality but doing just great. Good luck to you and your family. We will say a prayer for your grandpa.

I've been through a lot of this. I couldn't convince anyone, including my doctor, that I was hurt for nearly nine months so was slow to heal and deal with some of these issues. Thank you, I thought I was the only one having issues!

Spot On✌️

Thank you for finding the words, that I could not. This is very informative for all family members and friends. Please continue to post information. It's so very helpful. Thank you!

Thank you. For validating what I have been enduring alone.

Thank you for the great article. I got my brain injury about 3 years ago (I think).
I never would have made it this far if it wasn’t for my lovely wife. She has been a perfect care-taker. She wakes me in the morning, she mows the lawn (sometimes), cooks all the meals, cleans the house and much more. I am trying to do my fair share, but it is hard sometimes. Thanks, God, for giving her to me.

The hardest part is being alone.

You are not alone Jennifer.

I understand better what you go through from reading this article. So very helpful to people with brain injury and their peers.

Almost 4 years ago, I was in a car accident that caused severe TBI. That is brain injury. It was tough for me at first but now I don’t have any of those issues it causes. My memory now is great. I am really organized with most things in my life. Examples would be of my car. I keep up on all maintenance needed and keep it clean. My house, my bedroom, I always keep both of them clean and organized. I don’t feel confused about things. If I am doing something, I stay focused on it. I’m a type 1 diabetic and my A1C is perfect. From a blood test, cholesterol is good, blood pressure perfect, no problems at all with my kidneys. I don’t feel that depressed feeling. The reason why is I battle through all of this to achieve great health and life.

Great article!! Says everything !

I was in a near fatal car accident when I was 17. Was ejected from the vehicle, and sustained multiple injuries. Punctured both lungs, broke 6 ribs, had my left ear cut off, torn acl in right knee, and parietal skull fracture with large amounts of brain swelling. When I awoke I didn't remember a thing. Not even who I was. For months following, I suffered several memory lapses, severe headaches, and nausea. I recieved a diagnosis known as dyspraxia. Basically my brain runs like a 96 escort. Itll get the job done, but its gonna chug and putt the whole way there. The accident was when I was 17. Now I'm 30. I still have issues with mood swings, short term memory loss, brain fatigue, being easily overwhelmed and over anxious. Planning is a big struggle of mine as well as originality. It's especially hard for me to think on my feet if you will. I need constant cues of reference. If you asked me what my favorite movie was, I would stare blankly. I would need you to give me a list and I could tell you which I favored more. Often times I research into arrested development, thinking perhaps it fit my circumstance. At times I feel stuck at 17 with all the responsibilities of being 30.

Sometimes I feel stuck at 12 and I am 40. That was my TBI. I can relate to what you are saying.
At 39 I sustained a mTBI from a car accident and I have been reliving a lot of symptoms from my teen years that I didn't realize were from the TBI. I did not have the best follow up care at 12.

You are not alone I feel like a teenager or a toddler sometimes on my best days....TBIs do that to you. Sadly, so many of us do Not get the care we need. Keep going forward you are a warrior, a survivor and a champion...remember that

Thanks man, that’s a great description (and the 96 escort gag made me laugh:)

I am 76, and was in a car accident at the age of 23 before there were CT scans or MRI's. I was unconscious three days, out of work six weeks, and went back to my same job in a laboratory. I had a skull fracture, concussions in the front, broke many teeth and survived with no surgery. The attending physician told me when I was conscious that I was lucky because I had my "block knocked off", meaning my skull was off my spine if I understood him correctly. I'm certainly not clear on what I felt like during that recovery time, but remember getting a great deal of sleep every day for six weeks. It wasn't until this year when I had a CT and MRI in search of a diagnosis of what a neurologist said were two possible seizure episodes. He was shocked at what my brain looked like as was the doctor where I was hospitalized. My frontal lobes locked destroyed. I had lost my sense of smell completely for seven years, and now it comes and goes with mostly minimal ability to smell things. But I can't say I understand what else it meant because my IQ was "very superior" and my memory was tested to be 2.5 standard deviations above the mean around age 60 when I was worried about my mind losing its abilities to comprehend. The worried well. I don't recall symptoms, but that may be a memory problem that was happening at the time,...just a mystery to me. The neurologist told me this year that I was extremely lucky that I have had no symptoms up until now. The CT scared me. My brain is acting differently now. I'm beginning to feel things going differently. It is hard to put into words. So I'm waiting. I guess I will just hit the veggies and fruits and legumes hoping for the best. The prognosis for people with TBI is one that is too often a future with dementia. But being 76 means I did well. Shouldn't complain about that.

Yours is an amazing story, Carol. It seems your life following the TBI was truly miraculous. I hear that things are changing in your brain function now. That must be scary regardless of how fortunate you have been. Please know that my thoughts and prayers are with you.

And please people realize I need stability and order around me at home ..please quit changing things around that I have grown accustomed to. It is very frustrating

Yes I agree and it's basic respect for others as I was taught but it is ignored and I often wonder how blind or vision impaired people learn to accommodate and tedious detailed repetitive steps that is tiresome to me as TBI PATIENT and domestic violence survivor that is not supported, represented, or advocated as worthy individual that has learned more skills and adapted to deal with matters positively and with success and regain quality of life as individuals that is equally valued in community and roles of intelligence is recognized and prior credentials and education are basic qualifications required to be professional and expert qualified for job and classified as professional status.

However in area I live and have no positive outcome or supportive GROUps that recognize TBI patients as equal persons who are worthy or needing assistance but it's rudeness of the south as its current situation and courtesy and basic respect if others are vanishing completely as general behavior and it's simple to nor move others things and inside their environment and chairs and tables are not kept where they were placed and it's cruel and it should be labeled as it is. But if I was to move entire home around that wasn't mine it be acknowledged as awful behavior of my person and as my disability made it unpleasant experience and I not got anything except more issues and tasks but I know they get moved by others constantly also. Thanks for your attention and please be aware of respecting and leaving stuff alone that isn't yours or an if your business.

I'm glad that I've found this website and particularly this article.

I suffered a large right-hemisphere subdural hematoma as the result of an assault. Fortunately, I was in Trauma ICU when a series of seizures landed, and a neurosurgeon was on-site. A prompt craniotomy probably saved my life. If I was elsewhere at the time, the outcome might've been really bleak.

It's been six weeks since the injury, and I notice changes that frustrate me but others either shrug off as me having an "off day" or might be too polite to point out. For example, my short-term memory has always been hit-or-miss but now it's worse than ever and impedes basic daily functioning. I also have language difficulty that I didn't have before. I've trouble gathering thoughts and communicating in a linear, cohesive fashion.

I hope with time and practice this will improve. Another oddity is a pervasive knocking sound, it's like a tiny carpenter inside my skull busy building furniture. It does coordinate with my pulse, and I mostly hear it while lying down. I wonder why this happens and if it will stop.

I appreciate this article because I can share it with people and it will be able to explain some of the things I'm experiencing.

heya Amanda, that knocking sound with your pulse sounds like pulsatile tinnitus. i'm so sorry to hear you were assaulted. wishing you the best in your recovery. :-)

It has only been six weeks and you're doing great. All you have mentioned does happen after a TBI. Your journey has just begun. I have faith you will do well in your journey⚓

Let me start off by saying that these are very helpful to family & friends overall in understanding me and TBI .

My story is back in 2014 I went in for a DR visit for an upcoming neck surgery to fix a C5/6 herniated disc . A better MRI was needed before the operation could be performed. In having the better MRI done , a golf ball size brain tumor (on the lower back of my head and upper spinal chord) was discovered. Fortunately the tumor was non-cancerous but appeared to be there awhile. In removing 80% of it due to it being attached to my spinal chord and wrapped around my jugular vein, (per the Neurosurgeon) the other 20% was determined to be too dangerous to remove and left alone. After the surgery was complete( which took shy of 13 hours) I was left with my Cranial Nerves 7- 12 either destroyed and/or damaged. I lost the ability to walk , stand , swallow/eat/drink (A Peg tube was put in for all intake and nourishment purposes), hear (right side only) write (again right side), speak clearly and without difficulty. A weight was also put in my (right side) eyelid to help it close shut, being it no longer shut all the way on its own. A lot has happened since 2014 to now , many surgeries and procedures to list have happened. I now can only walk/stand with help and at a very short distance when I do walk. I can swallow just a little bit due to a special surgery performed at UCLA. I have lost complete sight on my right eye, but have gained about 20% of my hearing back. Everyday is a struggle of some sort , with old & new ailments ,but as stated above , some days are better than others .I take it one day at a time but have the love of family & friends......For that I am thankful !

As a guy who used to have a craniopharingyoma, I understand -(albeit unfortunatley)- pretty much everything you're going through. I'll support you all, even in death.

In my prayers,


Wow I was amazed this is the true fact of what I experience on a daily basis , Thank you

Thank you everything you say is happening to me finally someone else knows what is happening to me

I am using CBD from Fat Pig Society in Ft. Collins CO for pain. I use 1/4 teaspoon three times a day and it has helped me become "normal" with no pain for weeks at a time. The guy who hit me never looked up from his phone. My life changed in an instant and his went on. I had tried CBD from other places and it made the headaches worse.

Thank you for defining this for my family in this simple format. I'm forwarding it to my daughter and friends who want to support me but still think the old Val is coming back.

Thank you for articulating these symptoms so clearly. I suffer from the effects of a closed traumatic brain injury as well. I endorse everything you wrote however I would like to add one more fallout symptom. I am measurably more frustrated with even the littlest issue, much more so than before my injury.
Thank you again for this well written piece.

Thank you so much for your input. In addition to the above article, this is exactly what now happens to me now since my closed head injury and skull fracture 6 years ago. This is a great article that describes how, what and why to everyone and provides so much truth to what is really happening to a brain injury survivor. Take care, stay safe and God bless to everyone!

well written and helpful to us survivors to show friends and family for them to better understand. thank you

I was in an accident in 2006. I was diagnosed with a TBI. I had a brain bleed in the right frontal lobe. I had just about every symptom that I’ve read about. The doctors said that I would need help the rest of my life and to kiss my old self goodbye. I was actually given a book and told that the old me was dead so I should get used to the new me. I told them God is bigger than brain damage. After 3 1/2 years I was somewhat better, that’s when the doctors all said there wasn’t really any more improvement I could expect. I had slurred speech and visible tremors among many other symptoms. I was not in a good place. I decided to go to a hyperbaric chamber. The doctors laughed and said go ahead if you want to waste the money. I went for two dives a day, six days a week for a month. I popped back into myself two weeks later. That’s the only way I can explain it is that I felt like me again. I had to catch up with time again and that was hard to do because no one understood. Most of the 3 1/2 years is a blur, but I remember some of it. I was pretty much back to my normal, not experiencing any of the symptoms that I had. I was driving, going to the grocery store, basically doing everything I did before the accident, without any problems including my memory. After several months I got sick with congestion and my homeopathics weren’t knocking it out so against my better judgement I went to a clinic with a regular doctor. I explained that I had previously had a brain injury and that I was better after going to a hyperbaric chamber but he chuckled like he didn’t believe me and handed me a prescription. I had it filled and took one tablet. That night it felt like I got shot in the head. I had a relapse and it lasted about 6 months. By this time our insurance had long dropped us because of the cost so we had been paying everything out of pocket and I couldn’t go back to the hyperbaric chamber because of the expense so I’ve been doing the recovery on my own without doctors. I figure they didn’t help the first time so I don’t think they’ll do much good now. I have recovered mostly. I have a problem with time management and I have some short term memory issues but I function pretty good. I can’t draw as well as I used to but I’m working on it. I stay positive because I believe I’ll get back to the full me again. I do get fatigued when I do too much for to long and too much stress brings on brain fog. Regular exercise helps in so many ways for me. I would recommend going to a hyperbaric chamber simply because of how much it helped me. It may not help everyone but it may help some. I would suggest researching them because they are not all alike. I would encourage anyone who reads this that there is hope for recovery. Be patient with yourself and be kind to yourself. I am so amazed at how our brains can go through so much. I remember when I couldn’t comprehend what was being said to me. I have come such a long way and I will not quit on myself. What I have learned is that we are capable of relearning we just can’t give up on ourselves even if others do. There was a time during the recovery process when I was very hard on myself. I was always a very independent person. For me, my faith helped me go through everything and it’s still helping. That and my incredibly patient husband. Be encouraged there is always hope.

Thank you and needed to hear your story. I suffered TBI a few times very bad one in 1977 and 2006 they were amazed how I made the progress I did and came out of it alive - but my dear husband tried to help but didn't understand and that's okay but my faith has I believe given me a strong attitude not to give up since my actually 4 TBI's another one in 2003 when my dog pulled a 50 lb computer down on my head splitting the back opened and stitched but was told had a narrowing of the canal to me meant nothing but now this year with stress and high BP and cholesterol was the big part of that narrowing canal I have now found what it is - I suffered a major stroke and the Carotid Artery is blocked so now know what they meant narrowing. Also suffer with Temporal Artritis and still have to be very careful as get TIA's and left a high risk for another stroke. But it is so amazing when read everyone's posts and how far we do or can come - as I do get slurred speech time to time if tired, get frustrated not able to do or want to do what once took for granted. But all and all I think my memory is pretty good as my husband will say bless you as God has but yes do I live in fear of Dementia of course do I do research on it yes as I think it's only normal to recognize the signs. But have also found our complex brains can have that gene as early as the age of 12 and carry it not showing up for years later. Am I going to worry now NO but live every minute every hour in peace, love and with happiness. And just hope other's can understand or learn TBI's or the after affect of a major stroke. God bless to all.

You have inspired me ..l didnt have an accident onlyban aneurysm andcan 8 hour operation to clip it .l feel a bit messed up in my head ,vunerable ,messing up words feeling confused but just damn grateful im alive but what you have been through is admirable ..WHAT A CHALLENGE ..WELL DONE .XX

I also had an aneurism clipped but unfortunately, blood was left at the site , which damaged right side of brain with stroke-like symptoms. I had no voluntary movement on my left side and through physio was able to train left brain to operate left side. I had to re-learn how to walk, talk and focus. The best thing I was taught was to recognize small victories and celebrate them in my own way..a dish of ice cream, staying in my pjs..etc.
I have survived for almost 18 years and although I know my limitations, they are not obvious to others. I still play computer games, especially word types as suggested to maintain/ enrich my vocabulary and do my own aquafit exercises with water
weights several times a week. Don't give up..it takes time but you do get better..

Hi Robyne-
I have some questions as to how bad your first year of the recovery was from your accident. My dad had a really bad accident and has TBI. I would like to compare his recovery to someone else who has had something similar happen.

I had TBI July 17th told my trauma ctr 3-4 months, I was just told in rehab it's going to take 2 yrs. I was given a neuropsych evaluation it let me and therapist know exactly where I was struggling so I could focus on those areas. I'm not myself any more my thinking and emotions are very different.

Hi Alexandria, I’m sorry I’ve taken so long to respond. The holidays had my attention so I haven’t checked back with this site until today. The first year of recovery was very slow and as I said a blur. I remember the first six months I only sat and stared mostly. I couldn’t comprehend anything. I could see when someone was talking to me but it took several times repeating before I understood. I could see boxes in my head, some with words, some with pictures but nothing was connecting. My emotions were gone. My peripheral vision was gone. I saw silver/ white flashes. It was like looking through a tunnel. My hearing was really messed up... sound was amplified and even slight noises hurt. My speech was slurred and inconsistent. When I tried to walk, I couldn’t go any further than a few feet before I was on the ground. The dizziness was unbearable and the spinning wouldn’t stop. I had a really bad and constant headache. My sleep pattern was messed up... I couldn’t sleep and then when I finally did manage to fall asleep it was for only very short periods of time. I have glimpses of that first year but most of it is just gone. I will answer any questions the best that I can. Recovery is slow but possible. There is always hope.

Thank you finally someone gets it

I had a acute acquired head injury in 2009. It was the result of a botched back surgery where the back surgeon nicked the meningal seal on my spinal cord, and unknown to us at the time, my spinal fluid was slowly leaking out into my body, particularly building up in my mid lower back. In the initial phases of the leak I got very dizzy and in the middle of the night I got up to go to the bathroom and instead took a header directly into the metal door jamb. Fortunately with a quick thinking spouse and amazing life flight services I was saved. (My neurosurgeon told my spouse that had I been twenty minutes later I would not have lived.) I thank God for the miracle of timing and people everyday.
My recovery was complicated because two weeks after the crainotomy and surgery for the subdural hematoma, I had to have emergency back surgery to close up the spinal cord. Added to that I had a not too uncommon stroke a year after the brain surgery, which severely impaired my speech and ability to walk.
The one thing my neurosurgeons and occupational therapists agreed upon after all of this was that I was the smartest patient they ever had, that I appeared to get more intelligent with each recovering day. My pre head injury IQ tests vs my post head injury IQ tests bore this out. The theory has been that it is because I was a professional musician for some forty years when this injury occurred and I had alternative neuro passages that were tapped for use when the AAHT occurred.
However, I had challenges in recovery.
The headaches were the worst. But as time passed post injury, they became more manageable. For me the most stabalizing of all medications for the headache management was neurotriptyline. My neuro team introduced this while I was still in recovery. I didn't realize that it was an absolute must for my pain management and headache stabilization until an incompetent Doctor took me off of it. He had no idea what he was doing. After the protocols of medications ran out of my system I was in abject pain and misery. Anyone who has suffered true head trauma headaches understands that pain medications do nothing for the trauma headaches. So to have a system that was working flawlessly removed was devastating. Eventually after a change of Drs. several times I was back on protocol, I was doing well again. My advice is if you find something that is working, don't mess with it. That means don't take any new medications, nothing. Stay with what is working no matter what.
My Doctors and Family tell me they learned from me and got strength from me because I was strong and never gave up. Having a positive attitude is something you have to work on, even when you don't feel like it, because it is going to make all the difference in your physical recovery. It is the most major investment you have to make post head trauma. If you can not remember, which I had from time to time, place large notes around to your self "Keep your attitude up!" "Stay Positive." And at the same time you are working on that positive attitude be kind to yourself. Rest often. Stay away from drama and stressful relationships.
After five years I was doing well. I am nearing a full nine years post trauma. I recovered my speech completely but it took three years. After the stroke I could barely walk, but after a considerable time I moved to a walker and then a cane, and now I use no assistant devices. My faith in God was strengthened and grew because of the injuries. I cannot express the experience of true gratitude for life. That keeps you going. My wife, my family and some devoted friends have been the daily source of love fuel that keeps me going. I am thankful for them. And during the course of my recovery, post stroke, I had the wonderful experience of becoming a grandfather twice. Putting my little granddaughters on the seat of my walker and walking them around gave me new life and new appreciation for the walker.
Everyday find one thing to be thankful for. That will give you hope. And rest in the comfort that there are people praying for you. You just found some on this site.