Aging After Brain Injury: BrainLine Talks with Dr. Steven Flanagan

Victoria Tilney McDonough, BrainLine
Aging After Brain Injury: BrainLine Talks with Dr. Steven Flanagan

BrainLine sat down with Dr. Steven Flanagan to talk about the issues of aging after a traumatic brain injury. Dr. Flanagan is professor and chairman of the Department of Rehabilitation Medicine, New York University School of Medicine, and the medical director of the Rusk Institute of Rehabilitation Medicine, New York University Langone Medical Center.

BrainLine: Are there any increased risks as people age after a traumatic brain injury?

Dr. Flanagan: We think the answer is yes. Although aging after a brain injury has not been terribly well studied to date, some research, including a study conducted in 2008 by the Institute of Medicine, has suggested that people with TBI are at an increased risk of seizures. We have also found that people with poorly controlled seizures are at a higher risk of dying at an earlier age than people without brain injury-related seizures.

Studies also suggest that the more physically disabled a person is post-injury, the more likely he is to have a shorter life span. This is common sense. For example, if a person has trouble swallowing or can’t exercise at all post-injury, he will more likely have medical complications earlier on in life than someone who can move around, stay physically healthy, and swallow without problems.

Medical evidence also suggests that after a moderate or severe TBI, a person is more likely to develop Parkinson’s disease or Parkinson-like symptoms. The same is true for the development of dementia. That being said, the medical evidence to date shows an association between TBI and these problems, not a direct cause and effect.

For people with a mild TBI, there is little evidence of any association between TBI and developing Parkinson’s or early-onset dementia.

BrainLine: Are there symptoms to watch for? If so, which ones in particular?

Dr. Flanagan: That is a tough question because everyone is different. Symptoms can differ across the board but can include anything from depression to problems with balance. But if a person has more significant physical or cognitive problems that resulted from a moderate or severe brain injury, he should get checked by his doctor on a regular basis, meaning once or twice a year; and his doctor should be someone who specializes in or has experience with traumatic brain injury.

People with what’s called “complicated mild TBI” — a mild TBI with symptoms that don’t resolve quickly or that remain chronic — should also check in with their doctor periodically.

BrainLine: What can people do to protect their health after a TBI? Are there long-term health problems that may crop up?

Dr. Flanagan: This is an important question because people who live with long-term effects from TBI often forget that they have other parts of their bodies to look after. Everyone — with or without a TBI — should do “upkeep” tests like pap smears and mammograms for women, prostate exams for men, colonoscopies at 50 years old, cholesterol checks, and so forth. They should also maintain a good diet and fitness regimen.

It’s easy for people with TBI to focus solely on their brain and the long-term issues that persist from their injury; however, it’s crucial not to forget about the rest of the body.

A person with TBI should also make sure his doctor keeps signs and symptoms of Parkinson’s disease and early-onset dementia on the radar screen. Again, TBI is not a cause of these other diseases, rather an association.

BrainLine: How does a brain injury affect cognitive issues as a person ages?

Dr. Flanagan: This has not been well studied at all and is difficult to answer. Some studies suggest that people with moderate to severe TBI have accelerated cognitive decline as they age. But, again, this has not been proven.

Ideally, we need to have a long-term study that looks at how brain injury affects cognition as a person gets older. For example, if we could study the cognitive skills of people with TBI versus those without TBI at 30 years of age and then at 60 years of age, we would probably learn a great deal. However, that kind of study is almost impossible because it is hard to follow people for so many years.

That said, people with TBI, especially those with long-term cognitive issues, should stay in touch with their doctor, preferably a physician knowledgeable about TBI.

BrainLine: How does a brain injury affect physical issues as a person ages?

Dr. Flanagan: Folks with TBI who have chronic problems with balance, for example, may need to schedule periodic sessions with a physical therapist or an occupational therapist. Sometimes these “tune ups” bring people back to a safer level of function. As we get older, our sensory system changes, more so for people who may have had their sensory system disrupted or damaged from a brain injury. Therefore, we need to pay more attention to how we move and do things. Balance can get worse and our bones and muscles weaker, making it harder to move safely through the world. So, getting a therapy here and there can be incredibly helpful not just physically but also emotionally, for one’s self-confidence.

BrainLine: How does a brain injury affect emotional or behavioral issues as a person ages?

Dr. Flanagan: Behavioral problems are part of what separates people with TBI from others in rehabilitation medicine. Many behavioral and emotional problems that are a result of a brain injury can be chronic, and the severity of these problems can fluctuate over time. Depression is a significant risk. Anxiety and other mood disorders can also persist. People who have a hard time multitasking or concentrating tend to be vulnerable to frustration, anger, and depression.

We are not sure if the risk of these types of emotional or behavioral issues ever goes away entirely after a brain injury. Data show, for example, that there is an increased risk of depression for people with TBI even years after an injury.

BrainLine: What do you tell people who are concerned about developing Alzheimer’s disease or early-onset dementia after a brain injury?

Dr. Flanagan: We definitely don’t know all the answers about Alzheimer’s disease, especially as it relates to brain injury. There is ongoing research on many fronts related to Alzheimer’s, but, to date, we don’t have any definitive answers. However, studies suggest that there is an association between genetics and developing the disease and between TBI and developing the disease. Again, there is an association with severe TBI, not a cause and effect. That is an important distinction.

It’s important to remember that most people in general do not get Alzheimer’s. The best thing to do is to stay focused on staying physically active, socializing with supportive friends and family, getting out and staying involved in the world, and keeping our minds sharp and engaged.

BrainLine: More and more studies are being conducted about contact sports and progressive brain injury. What is chronic traumatic encephalopathy, and what should we be doing to protect young athletes?

Dr. Flanagan: For years, we have known about a type of neurodegenerative disease that may affect amateur and professional boxers, known as dementia pugilistica. Symptoms and signs of dementia pugilistica can develop progressively over a long period of time. Chronic traumatic encephalopathy, or CTE, may be similar and may be seen in more and more athletes who play contact sports like football or ice hockey. How much can the brain take, after all? It makes sense that a football player who is hit time and time again and who suffers multiple concussions could develop some sort of neurological trauma. The research that is being done on CTE is important, but it needs to be followed up with more research.

I think the increased awareness about traumatic brain injury is very helpful as is the awareness that a person doesn’t have to lose consciousness to sustain a concussion. This awareness will help everyone — from young athletes and coaches to soldiers serving in Iraq and Afghanistan. Everyone, including healthcare professionals at all levels, needs to know that TBI is not necessarily a benign event and sometimes symptoms do not go away.

BrainLine: How long do you follow up with a patient after a brain injury?

Dr. Flanagan: For most of my patients, they remain my patients for life. I never discharge them. For those with moderate to severe TBI, once their active rehab or restorative therapy is over, I follow up with them approximately one to two times a year. When they are still in rehab, I am actively involved and check in with them about once a month or so.

For my patients with mild TBI — unless they make a full recovery and are symptom-free within the first three months post-injury — I also follow up with them once or twice a year.

I find it important to follow up once or twice a year with patients to make sure the therapy and/or medications are still appropriate for them. For example, a patient may no longer need the same amount of an anti-depressant or a sleep aide as his life settles back into a new normal. Or maybe a patient needs more physical therapy for balance or strength. Recovery is a life-long endeavor for many people with TBI, and we want to make sure they are getting the right care at every step along the way.

BrainLine: What type of long-term medical follow-up do you recommend for people with brain injury? Which specialists should they see, and how often?

Dr. Flanagan: When necessary, I refer my patients to specialists like endocrinologists, psychiatrists, or neurologists. I also make sure that all my patients have a primary care doctor to ensure that they are doing the “regular” health maintenance checks like cholesterol tests, pap smears, and colonoscopies.

BrainLine: Why is long-term follow up important for people with TBI?

Dr. Flanagan: In a nutshell, long-term follow up is important for people with TBI because they can be more susceptible to the effects of aging, like depression or physical and cognitive changes that naturally come with age.

BrainLine: Does having a brain injury put a person at greater risk for other health problems? Of dying at a younger age?

Dr. Flanagan: Depending on the severity of the injury and the associated long-term consequences, some people may be at risk for certain health problems. Certainly, if people are less physically active or emotionally unhealthy, they are more susceptible to age-related effects — from problems with balance to depression. The stronger people’s bodies, minds, and spirits are — whether they have a TBI or not — the more effectively they will postpone the effects of aging … and enjoy life.

Dr. Steven Flanagan is professor and chairman of the Department of Rehabilitation Medicine, New York University School of Medicine, and the medical director of the Rusk Institute of Rehabilitation Medicine, New York University Langone Medical Center. He has served on medical advisory boards of many national and international committees and has presented at scientific meetings both nationally and internationally, most notably on topics pertaining to brain injury rehabilitation.

Posted on BrainLine December 22, 2009

BrainLine

Comments

I have a dear friend who was in a major car accident when he was a teenager. I am interested in learning more about post trauma brain injuries as an aging adult. I am really trying to understand certain behaviors that I feel stem from the head trauma. What is the best resource that I can use to learn more about this?

I was 24 when I had moderate to severe tbi. I'm 35 now, feels like after around 2 years since the 2 week coma, I'm completely recovered. I cannot see with one eye but it's because in the accident the eye nerve was cut by face bones. Depression, anxiety and etc.? Who doesn't have it? Especially nowadays. All of us have had different level of recovery which depends on many factors and especially age. My doctor told me if I would've be 25 the recovery would be different. Good luck!

I'm in this same situation. I fell 15 ft out of a tree when I was six and cracked my skull open. I was in intensive care for months. Now I'm 32 and I experience bad migraines, eye pain, lack of energy, problems with balance, depression, and anxiety. Just started happening here lately.

I'm sorry to hear of this, I was in a wreck with a brain injury and in a coma for a month. I don't have any of the issues that you mention. The issue that I have to live with is that my brain stopped developing at 19. So basically my mind will think I'm 19 for the rest of my life.

Not sure the point in sharing here. I was hoping for answers :( 31 years ago, my motorcycle and a truck got in a fight. The motorcycle slammed me into the truck, broke most every bone in my body, then I flew 90 feet in the air, head first into the pavement. Fractured skull. TBI. Etc. Learned how to walk, how to talk, how to think, all over again. I was 17. And mentally, I felt 17 for the next 20 years. Now I feel like I'm 25. Meaning that my brain has not ever caught back up to my now 48 year old body. My body aged, my brain didn't. I eventually recovered enough to get into management and leadership roles. Just an old kid. I've always had some form of depression since the accident. Occasional suicidal thoughts. About 5 years ago, I snapped. I screamed at a friend because I was mad at her. Prior to this event, I was always able to contain my anger. But I acted horribly. Unlike me. And I've been doing this more and more often. I was a long term type employee. Now I can barely keep jobs I like. Because I'll blow up at something stupid. I'm on meds. Doesn't help. Now, I'm starting to feel like I'm losing my mind. I'm not right, and I don't know what's happening to me. On the outside, one may not know, that on the inside, I'm dying. And I want to die. But I don't want to die. See? And I'm feeling like everyone is against me, even my friends. I can't think straight. I've gotten worse over the years and each year seems twice as bad as the previous. I don't know what made me snap 5+ years ago, but I do feel like I'm losing my mind, because of my TBI. I yelled at and lost a woman I love, because I can't control this. I've lost many jobs in the last 5 years. And I almost never lost a job before. Help.

I'm 53 years old. I had a head injury when I was 6 years old. My skull was cracked and I was in a coma for 3 weeks. Now I suffer with depression, anxiety and loss of memory. Thank you for this article. I could never find the truth behind my depression, and the lack of ability to retain information. but now it makes sense.

Thank you so much for this article, it's really helpful. I had a concussion when I was four and was in a coma for six months. I'm now 39 and have been living a normal life so far, as I'm able to work and live independently. However, I still have problems with anxiety and depression, as well as worrying about the long term effect of my injury as I age. Your advice is very useful. Again, thank you!!

My uncle fell from a ladder while painting outside and suffered a brain injury, this was back in 2012. Sadly he now has little time left in this world and I will miss him dearly. They said he would not make it originally four years ago but he fought hard. After all the physical therapy, occupational therapy and rehabs. Numerous test and examinations I think his body is tired. He suffered frontal lobe damage both sides. During his recovery diabetes, high blood pressure and seizures appeared, blood clots on his brain and body aches from the fall. About a month ago he suffered a stroke and he could no longer eat so they put in a feeding tube. He now has pneumonia and is not expected to make it till his birthday this month. I cared for my uncle after his injury until June of this year and he had a clean bill of health and the doctors told me he had no issues as long as he took his meds daily! Guess they were so wrong..... I will always love him. Keep my family in your prayers

My husband suffered a traumatic brain injury after falling off a roof at work on 8/1/11 as well as left pelvic ring fracture with two pins in his lower back and other injuries including a lacerated spleen. As per a Neurologist he suffered left frontal lobe damage.  I hate to report he has been getting slowly worse over time. Even with physical therapy his balance starting getting bad which resulted in more falls and a few more hospitalizations. He has developed swallowing problems and after a swallow test was diagnosed with dysphasia. He has also had speech and OT therapies. I have to puree all of his foods. He has lost a lot of weight. He is now 64 years old and has to be with an aid all day as he can not stay alone and I work full time. He is not the big strong man who went to work that day more than five years ago and he is not the same person. 

My fiances TBI happened over 20 years ago. Since I have been with him, I have seen various episodes where I know his brain isn't functioning correctly. I understand you can't give medical or legal advice...but can you tell us where to start on getting help? He has talked to the doctors and he has been trying to get disability but Its like no-one is listening because his injury happened so long ago. flatblackhannah@gmail.com

I'm 42 years old & I had a car accident when I was 19, my brain stopped maturing then & I thought everything was cool but it's not. My husband is also 42 but I'm really not only in age. It has caused so many problems. I need help

I had a severe traumatic injury years ago and have no assistance..how do I find a general practitioner that is knowledgeable about TBI's?

I had a severe TBI 15 years ago and I feel my memory has gotten even worse as I age. Just trying to enjoy everyday because yesterday is forgotten

I had a severe brain injury at 12 years old. Skull fracture in a car accident. Coma for 14 days, hospitalized for 5 weeks. Had all kinds of problems my whole life related to it. But, with a lot of love and help from those around me, I've managed to live a relatively successful life (as a musician) and a meditation practitioner.

Now at age 54, early onset dementia came on with a profound sense of apathy and disconnection from the world.  I realized that my life was coming to an end as a functional human being.  Fortunately, I discovered a book called Stop Alzheimers Now that promotes a Ketogenic Diet.  I have been on the Ketogenic Diet for quite a few months now and have seen SIGNIFICANT improvement in my functioning (not 100%, but like 80%).  So, I HIGHLY recommend the Ketogenic Diet to anyone dealing with TBI and Dementia.  Check out Dr Fife's book, although there also lots of other sources. 

Good Luck!!!

My 31 year old son had a TBI a month ago. He lives with us. He seems ok but I worry about him being alone for a week if we go away as planned. I feel I need to cancel our plans. He still has headaches and some equilibrium issues.

I am 54 yrs now. In 1977, hit by car. Coma 11 days, hospital 3 months. At that time, no one believed I had any brain problems; they just believed I became "lazy". 40 years later, not able to get diagnosed TBI to get help. Not able to communicate to get help. Recently, I tried to get family doctor to refer me. He forgot. Drained to keep trying. Very tired, a lot. Simple things take me all day. But, I am thankful God loves me, & provides basic necessities, & that, eventually, by the end of the day, I usually am dressed for the day. Even that drains me. Life is precious. Each second is a miracle. Even if I could just pray silently, instead of having a blank mind, a miracle. I don't know what will happen tomorrow, but I know who holds tomorrow is faithful & true.

In 1994 I was hit from behind (in a car). 9 mos.later, I was diagnosed with Post Concussive Syndrome with no follow-up at any time.  I know I look normal, etc. but I am not able to function normally. I "used to" lots of stuff, but can't anymore. I can't make decisions. Is there any help out there. I am 77 and falling down the "rabbit-hole." 

I'm a brain injury patient. Suffering a closed head injury in 1987 and experienced amnesia for a few weeks. After the swelling went down my memory began to get better and six to eight months short term got better too. Now 61, I feel my meniere's disease is probably due to that injury of years ago!

So pleased to read all this... I am post injury 4 years, initially thought Mild TBI but 2 years later upgraded to Medium... Every day is a battle to achieve things that used to be automatic and easy, especially cognitively, emotionally, short term memory and fatigue... these notes make me feel like I am not alone... I maintain my old job on a reduced 3 days a week but the concentration and energy and reasoning required wear me out daily. I work with Registered nurses and health professionals supporting young families and none of my bosses or colleagues 'get it' which adds further to my frustrations. My immediate manager said to me "it's hard to understand and appreciate your challenges because you look so normal" Grrrr... If health professionals don't understand what hope is there for anyone else to understand. I still have to fight to prove myself often so I can be compensated by ACC (accident compensation) so they will cover the one day a week I have reduced my hours at work even though I have several medical reports saying this a long term condition unlikely to change. It would be nice if the professionals that mange these decisions understood the challenges and that pressure to perform and any change is stressful. I feel like my whole life and personality has changed with my energy levels especially.... I hate it but it would be a lot easier to accept without having to work and the pressure to perform.. I wish I could just resign and stay at home gardening... managing the house ... and maybe writing for a living! and have a life I can physically manage instead of everything being a big effort that leaves me continually exhausted.

I had multiple TBI's during my time in the MARINE CORPS, the worst one my forehead swelled so large I only need to turn my eyes up to see my forehead. Now I've got dysplasia (trouble swallowing) early onset Parkinson's, memory problems etc etc etc. Sorry for your husband's problems. I'm a disabled veteran and I know how it feels to think nobody cares.

I am 31 years old when i was 21 i was attacked and my skull was fractured by a lump hammer. I had surgery to fix the hole in my skull. I was in hospital and discharged 2 days later under the impression every thing was ok i had a follow up appointment and the doctor examined the skull to see if the bone cement has set I must have been there about 15 minutes and he said everything is ok. I have head ache, very impulsive and dangerous behavior. Slower on anything that involves working out things and reading. And following conversations and communicating with ppl. I have never even thought anything was to do with the skull fracture and ignored it. In the last 12 months I have come to a point were I'm so tired and finding things more and more difficult so I've come out of work and since I have been mental health who had me think I was depressed anxiety and personality disorder ptsd and intrusive thoughts. After more weeks I was going dizzy and double vision more often and lasting days. And have tremors and acting out dreams in sleep. My doctor referred me to neurologist and he said I have front lobe damage. Essential tremors and rem sleep disorder. My mri is 2 days away to see the extent. I have spent the last 10 years battling myself in my head being confused why I act the way I do thinking I was schizophrenic and going around the bend. I would flip at family members even my kids and look in to their eyes and there faces looked sad and once I snapped out of it I felt so sad with myself. It's like a switch that turns off in my head and I go into rage for the smallest things. Then the switch turns off and I'm left with the guilt and say to myself wtf am I doing. I've never associated anything with the head injury and tried my best to control something i could never control on my own. My family think am lazy and say nothing is wrong with you its so annoying i feel lazy myself but the littlest tasks might as well be mountains standing in my way. I feel let down by the doctors for not explaining any effects or mental as well as physical issues i could get so at least i could look out for. I'm feel what the doctor has said now has give me a sense of closure and i can now move forward with my life understanding more what my limitations are and to avoid stress and start my own mind healing instead of the constant battle and stress I have had with my self for 10 years without no understanding of a TBI. They say you are your own worse enemy and it is true.

I found this very interesting, my husband suffered a TBI in 1969, at the age of 19.  He had several operations the last putting bone from his hip into the front lobal area of his head.  He seemed to make a recovery at the time, being young and in love helped.   He started having unexplained turns, blackouts and seizures from about 1998, always unexplained why they happened and the hospital and doctors couldn't help.  He was always sent home and no follow up.  In 2010, he had a breakdown and hasn't worked since.  I have tried many different doctors, specialist and even Brain Injury Units, No one can help.  My husband is an example of Aging After Brain Injury, but not one seems to care about him.

From everything I've read so far and how I've felt for a long time. I thought I was crazy then thought I was just really stupid then one day I remembered the incident and I also remembered that was the first time I ever forgot someone's name and the girl was actually one of my best friends. I think the marijuana also helps too. Research says it grows brain cells. When I feel the high sometimes I get uncomfortable but after the high I feel so normal. I can concentrate and feel like a human being again.

I am 16. At school people were doing this thing where you hyperventilate and then end up passing out so I thought it would be fun to try it. I regret it so much because from all the research I have done and from the symptoms I have and also talking to one of my dads friends who has severe brain damage I surmised that I now have brain damage. I have not told anyone because of the fact that it is such a pathetic cause of brain damage and honestly its just embarrassing. It is only mild brain damage so I can manage it quite effectively but often I feel so depressed and suicidal. One thing that makes me feel better is exercise, I love martial arts and crossfit, but sometimes it just doesn't help. I can wholeheartedly and comfortably say that if you smoke a little bit of marijuana every so often it will improve your concentration, comprehension of tasks, social life, depression, ADHD, mood swings and the list just goes on. It just makes you feel "normal" again. You can enjoy life without the feeling that its just going by and not giving a shit about you. I do not use it as an escape from life, in fact I often take month long breaks in order to avoid making it an escape, I use it sparingly and only when I feel really rubbish. It really has improved my quality of life. PS: marijuana has huge health benefits, apart from assisting you to deal with brain damage. Just my opinion and my situation though because here it says * Please remember, we can’t reply directly and are not able to give medical or legal advice. If you have medical concerns, please consult your doctor.

I was ejected from my car in 2012.. The bones have healed, the scars are there, but, it's the TBI that is a daily challenge..they took me to a shrink about 6 months after the wreck..she was diagnosing me with one disorder after another..I lost my husband a couple months before the wreck, since I was in foster care growing up, there was no family..the only thing I found out about the wreck was what was reported on the news..it changed my personality and it seems to have exacerbated all the other disorders..I'm now terribly anxious, always in fear..etc..it's so tragic..

I was in a coma and had to be taught everything but I did with no issues They said I could not walk I did I could not run I did and went to the Jr Olympics. My I que is 168. Yet turning 60 has me to scared and I do not know why. My life began at 10 yrs old.

Don't ever give up the fight, as long as breath is left in the body. I've been dealing with Moderate TBI for over ten years now. I did research on the national health website pubmed database / PMC articles and have been the one to request specific labwork be done, check GH, thyroid. Due to brain injury, it has been slow to process and read the information and spearhead my own healing. My kidneys were going into a greater stage of failure each year, now are within range, but did require percutaneous nephrolithotomy surgery. My HSCRP is very high (inflammation of veins and arteries, putting you at higher risk of heart attack or stroke) - this is common with TBI, so should be monitored. After over ten years and with research, knowing my symptoms, I requested my adrenals be checked and gonads and endocrine system. I have cascading neuroendocrine dysfunction and the doctors would never have caught it - most doctors refused to even check the GH deficiency years ago or the thyroid at first, so I found different doctors who would and you guessed it! They were an issue. I am now going to UCSF (a good facility that does ongoing research - find the best in your area!) to see a neuroendocrine doctor, hopefully get a decent neuroradiology report of the full brain (I've had two brain MRIs that only looked at the pitutary in the report) - One thing I've learned is there are a lot of ignorant &/or incompetent doctors out there. Even if they are really nice and competent within a narrow range of patients, that doesn't mean they are good for those with TBI. Don't waste time and money on them. Go to someone who specializes in it and do so at the nearest (mine is 3 hrs away) facility that also leads in research. I can't wait to move to the NW. The U of WA is one of the best in the nation. No matter what, believe in yourself and continue to be a stand for yourself. The doctors who are really good, keep. Just because they have a phd after their name, does not mean they have the analytical insight to understand your condition and direct your best treatment. Find doctors you trust. If they minimize or dismiss your concerns or symptoms you mention which continue to be problematic, find a different doctor. Dr. Flanagan is a rare and really good doctor - most do not do any sort of follow up. In fact, even after discovering abnormal labs, I have to push to get treatment (need to be replaced and/or addressed) and once prescribed a new medication, they often don't even follow up to check and see if the dosage was correct and do more labs. All people with TBI should be checked annually for pituitary hormones for the first ten years. If they have abnormal labs, their adrenals, gonads, thyroid, etc. should be regularly checked for ten years. Many hormonal deficiencies are not checked and often if they are initially checked and within range, not rechecked - but they often present late onset, even years after injury.

Get yourself a copy of "The Ghost in my Brain" by Clark Elliot and/or find a neurologist or neuropsychologist with good knowledge of concussion/TBI.

I'm very moved by each of your stories and heroism. The symptoms can occur years later and by lack of understanding it's progression and or change in symptoms (lack of others understanding) we may be very slow to recognize we need help (thanks Doc). We must advocate for ourselves and DO not give up. I don't know if my situation was exacerbated by being hit by a car while on a bike...quite a contusion to my head (100 feet in air aided by the hit and run metal catapulting my long jump. My symptoms are now much more challenging . Flooding heightened anxiety and arousal, my communication is disconnected and nor clear and organized (monologuing). I accept Monogram and Adderal. Do not give up and advocate for yourself; engaging ADA interactive dialogue can happen to afford you some accomodation. It bought me time to keep working without feeling so victimized, as this most painful period--of 'beginning to learn my limits' has also had persons be there for me in so many ways. Do not give up or isolate. Re-read these comments find a Dr. like this and or an attorney to advise you. And like those of you above, I may have missed the deadline too because I thought. trying harder would get me 'over or thru this'. I might have missed vocational re-training offered by my state s-r disability program. Also, anther tangible. I now have a mood disorder plus ADHD. My employer wanted forms signed by Kaiser in order for me to engage Americans with Disability Act interactive dialogues. An attorney told me I didn't need behavioral health therapists to sign off on forms to obtain ADA interactive dialogue! It was like pulling teeth, so know this as it can beat you down unnecessarily when therapists won't sign off. Best

I had a TBI sept 7th, 2014 from a motorcycle accident, that I have no memory of. I was told the bike rotated 4 times with me still on it before I was ejected off. My first memory was in NICU of what would be day 3. I self discharged with Hospitals agreement after a neurologist tried to classify me as bipolar, depressive, explosive, blah blah blah and all this was based off a the current brain injury. The were going to move me to another room where they said i would be for at least the next to weeks. When we told them I wanted out, they said if I self discharged the insurance wouldn't pay. When we told them why and what the neurologist said, the doctors had a meeting and agreed to let me discharge. Not sure that was a good move or idea. On our behalf or theirs. Especially if the patient is not of sound mind to make such decisions not understanding the severity of the injury. I have light, sound sensitivity, headaches, major depression, constant ear ringing and Easily stressed. Yesterday i went to the gym and did some cardio and weights. 30 minutes after leaving I went into severe dizziness and everything spun for 6 hours. Has anyone else that happen after working out? Really kinda scared me.

I was in a car accident at age 3 & 1/2. The impact was like hitting a brick wall going 90mph. The sunroof came in & sliced my head open causing a skull fx and a brain bleed. I was pronounced clinically dead & resuscitated after 5mins, was in coma for a week & hospital a week. Impact was over left top side of head required 120 stitches. I wasn't expected to live and if I did, I would drag one side of my body. To look at me today, you couldn't tell (other than visible scar), but I have found that as I have gotten older (37yrs currently), i am getting worse mentally in the fact that things are extremely hard to understand & comprehend (EI: instructions & trying to replicate something, learning information, memory is getting TERRIBLE, the list goes on). Recently in the last 2 years I have been stumbling when I talk. Sometimes the words don't come out right. I have had a HUGE difficulty dealing with things emotionally, such as not being able to deal with deadlines for a paper or a bad grade in college & feeling like its the end of the world. My husband says that I can't "deal with/handle anything anymore, even daily stress." I try twice as hard as everyone else to get things done, to be productive, to learn & understand things, I ask A LOT of questions & repeat the answer given, no matter what it is, to make sure I "get it." I have more trouble concentrating, I often feel like things that happen are the end of the world for me & just want to feel "normal." I've been treated for depression before, tried several different medications and they would work for a short time, a month or so then wouldn't do anything. Would up the dosage and repeat this about 3-4 different times to no avail. Either I have recognized my abilities/limitations as I've gotten older or I have gotten worse and gone backwards. I have noticed I am worse since I turned 35 than I was any age prior to.

I forgot after my last comment, to also add one of the things that is a HUGE burden daily from all of this, Hydrocephalus, and the VP Shunt I had to have inserted... 

I am so thankful as well to have found this article and all these comments, It has been a Lot to take in this morning, and I will be coming back later to read more. I am only 22 Months Post TBI, I am very lucky to be alive, I had a Ruptured Brain Aneurysm while in my car getting ready to pull out of our driveway, with my 16 Year Old Daughter in the car, She went in and got her Dad who called the ambulance, and from that moment on is a Blur, I remember Having the worst Pain Ever and grabbing my neck and head and Screaming. My husband says when he got out there I was having a seizure. He threw cold water on me and called the Ambulance when I arrived at the hospital (Family told me) My vitals were some what stable however I was Moaning Extremely loud and uncontrollably, and Sweating profusely. However I was still parked on the stretcher up against the glass Nurses station in the ER Hallway, Until (from what I was told later) The Aneurysm ruptured and I let out a Blood Curdling Scream and a Doctor came and looked at me and decided I may have a brain bleed and they should move me back to the Trauma Bay. They then told my husband if there was family that wasn't there that he may want to call them, they were not sure if I would make it or not. I went into Respiratory Failure, Hypertensive Crisis as well as the Brain Bleed, So I was put on a Blood Pressure Medication Drip, Ventilator, and an External Drain from my skull and moved to ICU, until about 12 hours later when they moved me to the other hospital in town and Performed a Coiling Surgery, From that Point I remained in ICU for almost an Entire Month with MULTIPLE Complications, from Bacterial Meningitis, Pneumonia, Unable to control my Body Temp so needing Heating and Cooling blankets, and Vaso-spasm's and so many other concerns. That wall all while in the ICU, now it's memory issues, financial, balance, anger, depression, fatigue, vision and on and on and on. It is just AWESOME To feel Validated for ONCE...

I'm 33 years old and have had approximately 8 concussion that I can recall from playing highschool and college football. Most where documented while some were not. I don't know who I am anymore,I have an uncontrollable rage and its affecting my family by my verbal abuse. I've never been physical towards them and never the urge either but being verbally abusive hurts them maybe even more than phsycal abuse. I also suffer from clinical depression, bi-polar and anxiety. I'm noticing that I have been misplacing items everywhere and it sets me off into an uncontrollable rage over dumbest things. I never thought it was because of the concussions but now that there has been so much attention about this subject brought forth I'm starting to think it may be the root cause. Please do not leave any negative comments it's a very sensitive subject for me.

My 44 year old husband had a major brain injury at age 13 and survived. He has always had some neurological issues, but once he hit 43, everything went downhill. He has lost multiple jobs due to lack of concentration/memory. He woke up one morning with delirium. He no longer works, and is declining rapidly. Why is this happening 30 years later?! Luckily I had him diagnosed with Frontotemporal Dementia. I am not 100% positive that is what he has, but it is an umbrella term and gets him qualified for Social Security, and got him retired early. I don't think doctors have any clue about Post TBI!

This has been very helpful information to me, as my daughter suffered a severe traumatic brain injury as a teen. She was in a coma for ten months. She is now 42 and I have started noticing a decline in her general functioning, balance, cognitive abilities, however she is still joyful . I feel this is due to being in a family environment, and ongoing therapies every week. The speech therapies, physical, and occupational have kept her strong in all areas. I do not believe she would be as successful without all these things working together. Thank you for your information on what to look for in the aging process

I'm having a hard time accepting that the TBI I sustained as a child (depressed skull fx, subdural hematoma) caused any harm to me physically or emotionally because I survived pretty well for such an injury.  Fifty years later, not working and suffering from depression I guess something happened to mess the plans I had to live independently forever, and I am very frustrated.  I did a lot during my lifetime but reality is what it is:  I depend a lot on my surviving family and the gov't to get by, and it's only going to get worse, or so it seems. Maybe fifty years from now more will be known about the effects of aging on TBI; right know it seems very little is known about this topic.  

Okay... I'm totally humbled by what I'm reading here, and feeling like a cry baby even saying my piece... I believe that I suffered a brain injury as a young child, cure to a bike accident, around age 8 (I am 50 years old now) but was not taken to the hospital, or even seen by a doctor. Prior to the accident I had been diagnosed with  all kinds of learning disabilities and processing issues (such as dyslexia), so while it was completely inappropriate that I was never seen by a doctor, the symptoms I still face today, were likely chalked up to my learning disabilities and may not have been noticed, even if someone had been paying attention. Though I have lived a very full life, I have struggled with memory problems my entire life. I can lay down memories if I am concentrating hard... it also helps if I am seeing, saying and deliberately in some way physically demonstrating an action associated with something I'm trying to memorize, but even then it is somehow disjointed from a normal sequential timeframe. Laying down memories seems to be the missing piece. I have not seen a specialist, or any kind of doctor about my memory problems. Writing this is actually the first official "admission to the world" about any of this. Of course it's a bit of a relief that there may be a reason, other than just being born brain deficient, but none the less a painful admission. I am not sure how really to move forward. I guess I should search out a doctor, though I'm not sure what can be done for me at this point.

I had a severe TBI 5 years ago and honestly I've gotten better, wiser. I always look after my body not just my brain as I know if the body is not happy the mind is not happy or vice versa. I am behind everyone else my age though. I do struggle with being social I also lack emotion but I've always been that way due to lack of socializing at a young age. Right now I'm just staying active staying healthy and reading what ever I find interesting.

I had a severe tbi almost a year ago, suffer nothing no seizures no memory problems nothing at all..will i maybe have a seizure down the road or something serious maybe in the coming years?

I am a 33 year old combat veteran with TBI. After reading this, I am convinced the VA needs to hire this guy since nobody seems to have a clue as to what's happening to me. At least I have an idea of what's in store for more in the coming years. I prefer to face my fight instead of being ambushed by it. Thanks, Doc. I really appreciate it. Semper Fi!

My husband is 53 years old. His injuries are from his youth. I skimmed over the comments to see if any resembled his situation. Dan in Ontario describes the same symptoms: the sensitivity to sounds and lights ( " flooding"), the depression, anxiety, focusing difficulties, short term memory loss, and some others. I am looking for current info to help my in-laws understand, but there isn't a lot out there. We do have an excellent neurologist. He has explained it clearly and has validated what my husband experiences. I noticed several comments describing the sensory overload, the term we were given is "flooding". We have found info on it and my husband says it is very accurate. To all of you, you are not crazy, it is all directly related to the brain injury.

I suffered a traumatic brain injury on The 1st of March, 2014. Mine was caused from a ruptured brain aneurysm. I was going to my doctor for continuous headaches. Asking for a referral to see a specialist. If I had known about brain aneurysms before mine ruptured I would've done more about getting checked. Now I'm living with a huge part of my brain dead but I have adapted or learned to use other parts of my brain for the function I've had lost. I'm walking talking & moving both sides of my body.

I am 29 years old with 2 children and a fiancee.  I was in a car accident June 2010. I lost control of my vehicle driving home drunk and went off the road and flipped five or six times.  I did not have a seatbelt on and I was ejected from the vehicle.  My mother was told I was unresponsive upon EMT arrival and had to be resuscitated. I suffered a TBI, broken neck, broken ribs, skull fractures, lung punctures and a severely lacerated ear.  I had a chest tube in each lung because of the lung punctures and I was in a coma for almost a month i think.  I recovered quickly and did not suffer many external injuries.  Thank you God I did not hurt anyone else in the accident but I still suffer from the injuries sustained that night...the one that haunts me the most is my tbi.  My main concern is my memory and the feeling of not being in control.  I do suffer from other things as well like poor balance, depression, body pains and social anxiety.  And I used to be the SOCIAL BUTTERFLY! One other symptom I'm beginning to notice is my progressive sexual behavior...anyway it's nice to read other stories of tbi folks and it make me feel not alone.  

My son is Post-TBI 20 years. He was 19, in a vehicle accident, 2 weeks in trauma center, almost 6 months in a good rehab facility. He was comatose for 3 months and we were told that after 6 weeks, the chances of him even waking up was slim. The Rehab staff immediately suggested we apply for SSI. Supplemental Security Income. What a godsend that advice was. After 3 months, he opened his eyes and moved one finger. Life moved very slowly for us. My son had many visitors who talked to him, played his favorite music, touched him, brushed his hair, gave him manicures, and talked about things that friends talk about. After 'waking up', it took another 2 months for him to swallow. He was encouraged to write, but wrote in vertical columns. We brought him home at 6 months. For 3 years, I took him to physical, occupational, speech, and aquatic therapies 3 times a week. To be honest, he really 'woke up' at about 1 and half years. At this time, he became aware of who he was, what he was doing daily. He announced that he no longer wanted to use the wheelchair, but wanted to walk. We continued to receive therapies only once a year, for 12 sessions. He never shows enough improvement to warrant more therapy.Today, he is 40 years old, living with us at home, has all the conveniences he wants, like computer, tablet, tv, stereo, nice bedroom overlooking the woods (with deer and squirrels). He receives Medicare and Medicaid, sees his PPC every 3 months, His case manager every month, the dentist every 4 months, and weekly visits with his sisters and families, and attends church monthly.My point is that it is very important for medical professionals to give the most correct advice to the TBI patient and family members. Gather ALL paperwork associated with his case, keep up to date records of ALL procedures, and be pro-active. Of course, I understand that not all TBI survivors have this whole package. This was all possible because I chose to also change my life. I do all of this for my son. His diagnosis is left-sided hemiparisis, severe cognitive and balance issues, and needs 24/7 visual supervision for safety. He plays computer games, watches American Pickers and Cops, loves to go to yard sales and Walmart. He is on 6 different meds daily that give him the patience and coping needed to have a 'good' day. He takes 2 different sleeping pills to go to sleep. It is important to get help early! My son may never 'get better', but he has a fair life. Research and visit a neurologist. In October, changes may happen for the medical billing code for Post TBI Syndrome. Can't wait! joarossigmail.com

it feels so good to be validated! my neurologist just made me feel like i was craizy and alone. i was assaulted a bit over two years ago and suffered a mild tbi. i have not been the same person ever since. i have all sorts of problems and i oftentimes feel like i am losing my mind. i have problems remembering things, its hard to talk or sing, and even to feel emotions. i am sensitive to bright lights and loud noise. i get dizzy a lot, especially when i need to track things with my eyes, and driving has become impossible. i can no longer exercise for more than a few minutes at a time and i gained weight. my visual and auditory processing has been affected, and sometimes even my sense of taste. i have digestive issues and developed hemorrhoids from being in the bathroom for so long i suddenly developed arthritis a couple of months after the tbi and my gut tells me that that too is related. i have slowed down physically and on bad days, every movement is a chore. i feel depressed sometimes and i see that my depression is causing anxiety an depression in the rest of my family which makes me feel worse. i'm sorry for all of you who are going through similar experiences. i hear you

TBI is a lifelong condition and how I wish we had a doctor following up on us. My spouse's injury due to a car accident happened 30 years ago and we were too naive to understand the full consequences. It changed our lives forever and not for the better. What a struggle it's been. You would think the medical profession would be interested in following severe brain injury patients. We have stories to tell!

I am new to all of this related to TBI. Our son was born 1 month early due to placenta abruption, his oxygen was slowly deprived for an unknown amount of time. Immediately following his birth he demanded attention. He would not stay alive , after several different attempts to keep him here a blood transfusion was the fix. He received moderate to severe brain damage global , meaning all over his brain. He suffered a stroke after birth and seizures causing cerebral palsy To date he is nearly 19 months old. He is severely delayed in all areas however Not to be entirely held back. From the beginning his doctors urged U.S. to begin many therapies and explore anything at all that benefited him. I think and learning that everyone and anyone who doesn't understand a brain injury are scared of it, their quick to pass the effects off to something else. Be it a bad day, behavior issues all of their own or just not enough information to go on. That makes it 100% hard on you , who lives and fights through it daily. Our little man is still just a tiny baby man growing into a boy, but I see how harsh the world is even to him. A baby. Cannot imagine being an adult, a teen or any age for that matter trying to fit into this normal world however you can. My very best advice is to NOT stop challenging yourself daily , forgive yourself when you don't perform to the so called normal levels , remember to praise yourself when you overcome or achieve something or anything because You are your biggest advocate as an adult. I see already early on that if we didn't fight for him or push him in ways he doesn't know how - NOONE would. That's not fair when your an adult , who is looking out for you but you. Do not give up on you. You don't have to be a very tiny baby or nearly 19 month old yo matter to be heard. Don't hesitate to tell your story or ask for a minute , you deserve it. After all your fighting an every single second battle against your own brain, your actions or outcomes are not always yours or your own intentions. Hard wired for battle is what we say for our little man. Because everything is and will be a battle but amazingly beautiful when achieved. Stand in awe of yourself occasionally. You survived something terrible that left you half or less or maybe a little more in ways. Look for the ways to be more. These are all the things I believe someday when my son will understand more that I will say to him. I don't know much about long term, really just learning to take it day by day as his mama on this terrifyingly gratifying journey we are on. Together. These next things may sound silly but I have to think all brains are created equal in ways - we started a water mobility program for him. Mostly because he can't walk or crawl and we want to increase his strengths without pain. In water your weightless , flightless but it's amazing sensory input. If you can find some safe water places to do your jan activities in or find a program. Our area has a program for it called mobility. Find soothing things that fit into your lives - yoga , running , writing, horses or any animals. They bring joy and know us humans pretty well. Good luck to you all. Would love to hear of any others similar to our boy , born with a TBI and outcome. Take care.

Hello my name is Dan and I'm scared to death, at 53 years of age I don't know where to turn for help. Suffered multiple concussions when I was younger (I think 7 or 8 bad ones along w/several mild ones) playing football, hockey and every other contact sport you can play. Diagnose w/ABI in 2010 now 5 years later I'm getting worse and my Doctor is doing everything he can but the tests I need cost 4-5 thousand dollars. I have concentration problems along w / comprehension, short term memory, balance, dexterity, and most of all Depression. I no longer play ANY SPORTS at all, have problem with employment because of noise, lighting (bright lights give me headaches) and no longer able to work in a fast paced environment ( was a forklift operator for 30 years). I have lost 5 jobs since Sept 2014 never making it past my probation period ( about 2 1/2 months in they let me go) because of repetitive mistakes. My wife and kids are afraid of me ending my life. Is there anybody else out there with similar problems like mine? If so I would love to hear from you to compare our symptom. I live in Toronto, Ontario ,Canada email address onefour@sympatico.ca  Thank you for reading this, there is a lot more I could of type about what my family and I are going through but I think I have taken up to much of other peoples time

Sincerely Dan

 I had severe TBI 23 years ago and now at 42 years of age, I am given medicine to fix "life cycle change i.e. change of anxiety levels, insomnia, migraines and cluster headaches, change of cognitive functions" and wonder if I am not missed diagnosed because there is not enough information on the impact of TBIs and aging. I always have had headache and migraines since my accident where I was a Jane Doe for a month and unconscious over 24+ hours and had swelling on the brain along with brain stem injury with the prognosis of permanent memory loss and no short term memory ability. Well I just graduated nursing school and it has been very hard to stay focused and keep the knowledge current long enough to take the test. My next hurdle is the state boards. I guess I am seeking knowledge to why it has been so tough. I was a straight A student in high schools with a high IQ and graduated 2 years early via accelerated educational program where I never had to study for a test. The scientist in me needs an explanation if there is one. I don't want to believe that at the age of 42 I am forgetting stuff like my daughters middle name or the spelling of my street address of 10 years because it is a "life change thing" and lack of sleep. Cindy

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