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.
Are there any increased risks as people age after a brain injury?
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 brain injury 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 brain injury, 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 brain injury and these problems, not a direct cause and effect.
For people with a mild brain injury, there is little evidence of any association between brain injury and developing Parkinson’s or early-onset dementia.
Are there symptoms to watch for? If so, which ones in particular?
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 brain injury” — a mild brain injury with symptoms that don’t resolve quickly or that remain chronic — should also check in with their doctor periodically.
What can people do to protect their health after a brain injury? Are there long-term health problems that may crop up?
This is an important question because people who live with long-term effects from brain injury often forget that they have other parts of their bodies to look after. Everyone — with or without a brain injury — 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 brain injury 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 brain injury should also make sure his doctor keeps signs and symptoms of Parkinson’s disease and early-onset dementia on the radar screen. Again, brain injury is not a cause of these other diseases, rather an association.
How does a brain injury affect cognitive issues as a person ages?
This has not been well studied at all and is difficult to answer. Some studies suggest that people with moderate to severe brain injury 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 brain injury versus those without brain injury 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 brain injury, especially those with long-term cognitive issues, should stay in touch with their doctor, preferably a physician knowledgeable about brain injury.
How does a brain injury affect physical issues as a person ages?
Folks with brain injury 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.
How does a brain injury affect emotional or behavioral issues as a person ages?
Behavioral problems are part of what separates people with brain injury 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 brain injury even years after an injury.
What do you tell people who are concerned about developing Alzheimer’s disease or early-onset dementia after a brain injury?
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 brain injury and developing the disease. Again, there is an association with severe brain injury, 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.
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?
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 brain injury is not necessarily a benign event and sometimes symptoms do not go away.
How long do you follow up with a patient after a brain injury?
For most of my patients, they remain my patients for life. I never discharge them. For those with moderate to severe brain injury, 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 brain injury — 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 brain injury, and we want to make sure they are getting the right care at every step along the way.
What type of long-term medical follow-up do you recommend for people with brain injury? Which specialists should they see, and how often?
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.
Why is long-term follow up important for people with brain injury?
In a nutshell, long-term follow up is important for people with brain injury because they can be more susceptible to the effects of aging, like depression or physical and cognitive changes that naturally come with age.
Does having a brain injury put a person at greater risk for other health problems? Of dying at a younger age?
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 brain injury 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.
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.
Ella Bay Onnadae replied on Permalink
I am very acquainted with long term issues of TB I one of my children fell and sustained a severe closed head injury at 6 yrs Is now in Their 40s.
Coma for 11 days, therapy started immediately and continued throughout, neuropsych evals, MRIs, cognitive and behavioral therapy, vision and auditory therapy, private special education 8 years, went on to mainstream through 2 years variety of college experience. Drives, doesn't have friends, lots of anxiety, anger, OCD, ect...has had many other mishaps, accidents and legal problems. We were warned early on that Alzheimers/ forms of dementia could have onset earlier.
Anonymous replied on Permalink
Thank you. My son suffered a Tbi from car accident 20 years ago. I am caretaker. It helped me to read this even though he insist it happened 20 years ago so why do you keep bringing it up. At wits end. Helps to know there are caring smart doctors out there.
Seems to me nobody wants to deal with it or understand it.
His memory issues and trust of others is a huge huge obstacle.
Still love him but is killing me.
P.w. annonymous replied on Permalink
I have sustained a TBi in 1994.
I still have unboubtablly strong problem with trust. My husband separated could not deal with it.
He left me. He is a very selfish and angry man.
For me as the person living with this effect of TRUST is an on going thing that comes& goes.My only advice to you is
Loving the person & showing how much you care for that person is the only therapy that can help.Remember it is an illness . Do not take it personally caregiver...
Anonymous replied on Permalink
Hi, I suffered a severe head injury when I was 16 in a car accident in Australia. I had severe temporal lobe damage and was in a coma for almost 3wks. It has been 44 since I had this injury and the initial 20yrs following the accident my life was very difficult. I had no memory of my life prior to the accident and struggled with many things like, memory, balance, depression, concentration etc., But I was fortunate to be able to work and live independently by the time I was 30 and went to university and obtained a degree. Although this was the most difficult challenge I had undertaken since my accident over a 6yr period I obtained by degree and successfully graduated. In my mid-thirties I moved to the UK and have lived and worked here since. Although I still have mild issue with memory, confusion of words and balance I have learnt many improvisations to help me with these that I have been able to have a successful working life and my private life has also happy. I am married to a wonderful man who supports me completely but I've had no children of my own. When I was 57 I developed epilepsy and now have a daily medication regime that helps me to manage this. Can anyone tell me if they are aware of a historical head injury affecting your immune or nervous system as I am now susceptible to outbreaks of the Herpes Virus and allergies, which has become more prevalent as I've go older. I have wondered if this is in anyway related to the head injury I received when I was much younger. Thank you.
Sharon replied on Permalink
Hey there, like you i had a MVA at age 21, ( now 59) severe TBI, 3 weeks in coma, loss of memory (long term). Taken many years to some what develop short term memory, i have balance problems, and have been on seizure meds for years (peti mals) after accident but not now. Diet and exercise were the key. I have had chicken pox 3 times(herpes) took the flu shot at age33(in canada), was sick as a dog then diagnosed with
Rheumatoid arthritis,, not uncommon with auto immune problems. i have allergies to all sorts of meds. Then diagnosed with osteo arthritis, later fibromyalgia. Then PMR. Again got real sick and then diagnosed with adrenal insufficiency (Addison’s disease) all from swelling in my brain during coma. i thought it was menopause. I just keep getting sicker and sicker. So yes, yes, yes. It does effect your auto immune, hormones, Have them check out your immune system and hormones. They effect everything
Tia replied on Permalink
While traveling to Georgia when I was 19 I was in bad accident leading to a broken neck and fractured skull. The accident happened outside of Duke University and the surgeon there did his best to get me back to 'normal'. Now that I'm 35 things keep slipping from my memory. Is it from the accident or just me forgetting things?
Anonymous replied on Permalink
My niece had a very serious TBI at age 29. She has no short term memory and at 56 she started to do be much better cognitively. However, she is becoming increasingly argumentative and combative. Is this normal and is there a medication that a neurologist can prescribe to assist her?
Anonymous replied on Permalink
I have been through 2 car windshields, and have sustained approximately 12 - 14 mild to severe concussions since the age of 16, with the first massive concussion occurring at 18 years old. I have had many issues due to this with the worst being that I dont feel like my brain has aged past the point of the first severe tbi at 18. My question is... is it possible for my brain to be stuck at that age following multiple tbis?
Hv replied on Permalink
I would highly suggest you start going to hyperbaric oxygen treatments possibly even just buy your own off of eBay a little blow up one starts about 4 to $5,000.
Which is about the same prices 40 treatments if you were to go into a center (which is enough to get you fully healed)
These treatments have literally saved people's lives from very severe brain injuries to not even being able to walk and being told that they were, toast to being able to walk function and live on their own again.
It does take some time but not a whole lot these treatments are absolutely amazing one guy came into my treatment center who was a world war II vet and his whole right leg was gangrene from being in the mud pits for days on end, and had injury with some deficits and by time he got done with his whole treatments he is whole entire leg was alive again and he hardly had any deficits at all, and this was 50 years after that initial injury so it doesn't matter how long it's injured I can always help in some manner, everybody doesn't heal the same so you just have to take your time with it and be good to yourself but what it does is it forces axons to regrow on all the damage cells and it helps you to reconnect all of those.
Glen schmidt replied on Permalink
yes, been there done that too severe tbi here, in 1984:. brain has remained back then say in the60s 70s. , hope it doesn't hamper u. I have learned to move forward and helps, maybe u can try. good luck ......glen
Shana replied on Permalink
I am helping my parents post a fall with my 79 year old father. Pre - he was extremely active and still working as a teacher 3 days a week. After a emergent craniotomy, he has been having a very roller-coaster-esque recovery. We had great improvement in patient, and in inpatient rehab. We struggled with out patient. Then had great improvement with in home care. Now back to out patient and again are having ups and downs. A very difficult part is helping my 78 year old mother understand that even though her husband "looks better" he is not "choosing" to have the cognitive issues (leaving things around, needing constant and gentle reminding, help with meds, reminding to eat, cajoling.) Our biggest issues are significant impact on short-term (not long term) memory, extreme depression over all the "losses" and "dependence" he know has, and 100% role reversal. Any guidance or advice would be amazing. We are hooked into a good network and ask lots of questions and are trying to divide and conquer with good and open and clear communication, but wow!!!
TBD1985 replied on Permalink
I had a wreck in 1985, 5 weeks and a day I came out of the coma. 9 days later, I began remembering, kind of, from day to day. My Neurologist, did not make plans for me to see him on a regular basis. Nor were there plans made to see any doctor, on a more regular basis than check ups and such. Furthermore, I rarely see any doctor, more than now and again when I am sick. 4 times in the last 6 years, maybe. I am 50 now.
Jonny Mo replied on Permalink
Sad but true experience for most TBI. We look fine on the outside. But obviously we have had our brain changed. Between neurology & psychology damn little is done to provide coaching or tools.
Other than, buck up & get in with it.
To which I add be patient with yourself & kind to others.
Also, explain where you are coming from to select few that matter.
Others may use it against you.
Elizabeth replied on Permalink
I had a mild or moderate TBI 10 years ago at age 50. I don't have great Dr's. I wish I did. I don't have the greatest support from siblings either; I wish I did. I know most of my success came from myself and the determination to survive.
Still to this day I have issues with being overwhelmed or overstimulated. My psycho neurologist who only tested me said, that I was above average and superior in many tests leading to the one problem: I still maintained my high intellectual capabilities which makes people think I am okay all the time. But I know I am not.
I continue to push my brain so that the part that was damaged is compensated by the other portions of my brain. That leads me to success and to understand when to stop when overloaded or flooded.
Most people who knew me before professionally not family I say, see the difference but they say, my empathy and compassion remain the same. How interesting is that?
Shannon replied on Permalink
Dear Elizabeth-It sounds like you are a stellar and resilient person! I really sincerely hope and pray that a tribe of love and support will be made available to you. You certainly deserve it!
Victoria Carpenter replied on Permalink
My husband had a skydiving accident when he was 30 years old before we met. He suffered a traumatic brain injury to his frontal lobe among almost dying. He was home bound for 9 months and his mom had to take care of him. I met him 6 years later and he told me he had to learn how to re socialize again and ended up losing a lot of friends. Now he is 46 and my question is that I have seen a lot of impulsiveness from him over the years and making decisions that are very black and white. He is very sensitive toward everything I have said in the past and has held a grudge. We are currently separated now because he has put up a guard toward me with stuff I have said in the past. Which most people would forgive and forget. He also drinks on top of this brain injury. He says he feels emptiness toward me now. Is this due to his brain injury? I feel like he has no empathy or lack of emotion and it has gotten worse over the years. He refuses to see a doctor. I want him back but not if he feels emptiness toward me and shows lack of emotion. Anyone have any suggestions?
Nathan Sady replied on Permalink
There is a comment from a somewhat bitter perspective of becoming a caregiver. Many of us become caregivers to ones we love. When dealing with subjective observations like say the PTSD sufferer is incapable of empathy, that is a POV or shared POV. Sure a consensus could be had, and an argument made for having unequal sense of empathy toward one another. Still, I like to believe there is something to work with. A glossary of things you can do is at https://www.caregiver.org/coping-behavior-problems-after-head-injury. One of a few methods not mentioned on that page is deep brain stimulation or DBS, which I will likely try to look into. There is a small encouraging study of using MDMA (ecstasy) for treating this population. Best of Luck All
Nathan Sady replied on Permalink
Just a couple of observations for the difficulties leading to a complete fall out. Indeed if your questions could be answered a surge of mental and physical recovery could be made in this concern. The relationship to trust and times his guard is up is telling. He has heard a replaying of commentary that is not unlike a nightmare from the previous view of himself, which maybe the resemblance he can hold onto. Keep from a pile up on his sensibilities by a unique perspective of considerable qualities to enjoy about him. Though these seem everyday pleasantries you are defining him in a set of attributes he hasn't heard for sometime. I don't know of intimate details other then distinct areas effected and plausible means around or living with some deficits, as he's making an effort, may as well feel he does well. Of course these's meds to consider while still healthy. That's assuming he got to your good graces in some manner. Should he overcome self doubt, he wants to feel you've made the right decision in letting him back. So far as empathy toward you, I feel that is a perceptual conundrum not easy to overcome as he has felt this toward many fleeting aspects of his former life. It occurs that couples do have to find new ways into the later half of relating. Don't know the first about that myself. You describe my worst fears of intimacy, so I wish only the best. N ps said I'd keep short, and not the case, sorry, but have to do your own edit. Hope something to glean.
Mimi replied on Permalink
My husband suffered a severe frontal lobe brain injury 16 years ago. My advice to you would be let your friend go. You won’t ever be loved the way you need to be loved. Not that he doesn’t want to but with a TBI like he has he can’t feel this love for you. My husband can’t make good decisions so if left unattended will get hurt or hurt someone else. He is 70 now. Your life will be all about him so talk to a Doctor and understand you will be his caregiver for rest of his life. Is this something you want to take on?
David replied on Permalink
I have suffered two different severe TBIs in my life. I am now 51 but endured a fractured skull at the age of 9. I then went on to play high school football as a middle linebacker, suffered several concussions during my years of football, and at the age of 19 I was involved in an auto accident which caused a subdural hematoma. I was given a 10% chance to live, but here I am.
I went on to get my diploma and eventually received a BS in electrical engineering. However, I have since had to stop working as I have begun to suffer symptoms which I cannot control. I feel a sense of fog nearly always. My sleep patterns are awful. I have a number of symptoms, but the worst by far is my inability to stay calm in the face of adversity.
When something happens that would simply bother a normal person, I feel as though a rush of adrenaline has been released in my body. My hands shake, I sweat, I get very aggressive and, quite honestly, I have started to scare even me as I've aged. I am uncertain where to go or what to do at this point. I have had 5 major surgeries since the accident, only one brain surgery, but I have a bad knee and a bad shoulder which requires me to take pain medication.
I have reduced the medications I was taken down to only 2, whereas I have been on 11 medications at once before. However, without pain meds I am nearly incapacitated and I require a dose of alprazolam to assist with anxiety. I do not know where to go from here. I do not know if I have CTE, early onset dementia (I doubt, as I am still cognitively competent) but I am finding it harder and harder to deal with society.
I intentionally do not own a firearm for obvious reasons. I do not want to hurt a stranger for something as dumb as cutting me off in traffic and I do not want to destroy my family by doing something even more stupid.
Anyone out there with a TBI at least 10 - 20 years old who has learned how to deal with life on life's terms, I would be forever grateful for the human contact. I need to speak to someone who has a visceral understanding of the hell in which I am writhing in as I type this. For anyone willing to communicate with me regarding these issues, I would truly owe you a debt of gratitude.
Tina Mitchell 8... replied on Permalink
I'm caretaker to my 20yr old grandson severe traumatic brain have been for 5 yrs. Please don't be so hard on yourself. I sense that you are giving up on yourself. I'm completely overwhelmed at this point lol but I'd like to help I'm no professional but lots of hands-on.
Glen Schmidt replied on Permalink
ditto on that bro. m 63 had severe tbi in 1984. it's hell that feeling ,I have learned stay cool, avoid situations not out of fear, but don't know my reaction will be, no control. f.u.b.a.r. no releif from docs, hey its rough ,stay cool, you can email me if u need. ......glen
Tara replied on Permalink
Nearly 30 years post TBI that changed my life but did NOT get the medical care it/I needed.
I was in college - sustained the injury in a bad boating accident during an athletic event. I was shuffled off the property where the accident happened and left alone in my dorm room for 3 days before being found by an angry lab partner who thought I had just been blowing class off. I was unconscious in my dorm room.It was later discovered I had a skull fracture. I had a host of immediate issues that were treated while I was in the hospital - but then I was left on my own to figure out how to resume my life - which was never the same. TBIs were not talked about back then.
I STRUGGLED to get back to school and finish. I was overwhelmed by everything. Too much information, noise, lights... I had uncontrolled emotions - rage, anxiety, doubt... I can't begin to cover it in this post - but your post resonates with me.
I sustained a concussion several years ago - which set me back tremendously. I was NOT recovering and it caused me, out of fear and desperation, to start looking for some kind of help.
I've been going to neurofeedback for several years. I am improving and am now tapering off medications and continuing to improve. I am sleeping at night. I am able to stop the overwhelmed, overloaded, over-stimulated cascade of events in my brain and body.
This has saved my life and improved the quality of it beyond measure. I wish I had found this treatment decades ago. Regardless of where you are located - you can see if you can find similar resources near you.
S. replied on Permalink
A neurologist I knew casually told me I had something like ADD. This was around 9 years after my head injury. The medicine he suggested was one that has an off-label use in addition to its anticonvulsive effects. Several months after adding it, I noticed I can interact about sensitive issues without immediately “flying of the handle”. Good that you have tapered down your meds, but maybe you should add something back.
Dave replied on Permalink
Hi Daivd (good name!), I can feel your angst in your words. I am 17 years post my frontal lobe TBI that left me in inpatient hospitalization for 6 months, and I'm still recovering I feel. I agree wit the last commenter that you should absolutely seek out mental healthcare - it has been a godsend to me.
Kerrie replied on Permalink
I have not personally experienced what you have (I came to this site for a relative), but what you are describing sounds somewhat like panic attacks. A good doctor or mental health care provider could help you get a better diagnosis and help with treatment. Good luck sorting this out!
Williams replied on Permalink
Please help me my vision is so blurry headache light hurts my eyes car ran over me 1983 I was on motorcycle coma two weeks football wrestling and motocross my life now is post it’s everywhere and I still forget what doc or test can help me I have passed out twice and one time got my fingers in a table saw
Travis replied on Permalink
I had a real bad fall as a minor causing me anger issuses as an adult.
Robert replied on Permalink
On December 23, 2018 I will be 8 years post TBI. I have multiple health issues now, some are because I ignored things like blood sugar and blood pressure, heart rate because of major depression and anxiety.
Several very important things that I may suggest are, when you are seeing a doctor that says that people post TBI don't have any special health issues to watch for, WALK OUT OF THE OFFICE. They are ignorant!
Second is see a endocrinologist. I see mine every 3 months. Hormone levels etc. are different post TBI. A warning that even many endocrinologist's are ignorant about post TBI issues.
Third, find a local TBI support or like we say "SURVIVOR" group. We don't sit around and wine about the TBI but rather have fellowship with people that speak our language. Discussions, picnics, parties etc. A TBI group is so important because you learn that you are a normal TBI Survivor.
Anonymous replied on Permalink
I should be happy I am not alone. It has been 5+ years and I'm just getting worse. But I am not bad enough to get/deserve help. Had I not made it, everybody I care about would be better off. Now I'm not the only one suffering. I do hope others get better instead of worse.
Susan replied on Permalink
6 years post injury
I completely understand you. Everyone hoped I would not and shortly after discharge I began to understand and I joined them. One failed attempt and a coward at known unfailables, I exist.
Annonymous replied on Permalink
Don’t give up. My husband had his TBI in 1995. He was only 26. It forever changed our world. He became fully disabled 3 yrs ago. Find a good support group in your area. Never give up. He had to learn to walk and talk again and also had to get help for anger, which is common with brain trauma. He is 51 now and I a glade for every day we get to spend together.
Sandi replied on Permalink
I had a severe brain injury in 1985, age 21. Left me blind in one eye, no sense of smell, nerve damage in left hand. I am now 54, with fibromyalgia, arthritis, depression. I have no medical care b/c I cannot afford it. Got fired from my job largely because of my health and age. But I have been denied disability. So what is someone like me supposed to do? I am deteriorating at what seems to be an accelerated rate.
Kathy Magill replied on Permalink
I suffered a severe traumatic brain injury on June 1995. Over 30 years ago. I am extremely lucky to have little difficulties. I was seeing doubles moving my head but about 5 years ago the doubles disappeared. I have taken part in many TBI events in my area. Will anything happen as a result of my accident many years ago? Please help....
Donna Arnold replied on Permalink
I had an anoxic brain injury in 2009. I spent 2 weeks I'm a coma and I'm a vent. I went to neurological rehab for 5 months in patient which was excellent.
Post injury and rehab I do have some issues. Short term memory loss. I lose everything, and have problems with time, 30 minutes to some is 5 minutes to me. You must carry on to get better day by day. I was 46 and now 55 and I will never stop moving forward with God's grace and mercy.
TracyC replied on Permalink
My sister had a closed head injury 42 years ago that has left her left side with impairment that has progressively gotten worse with age, as well as the mentality of about a 2nd grader. What we are having an issue finding now is what kind of assisted living or care facility we can find for her that will understand the brain injury as well as the aging process, as there is a difference. There doesn't seem to be too much information on the web, that details or provides information on how to find the 'right care' for a person aging that also has experienced TBI.
Has anyone else had any luck?
Whitney replied on Permalink
My husband fell out of the back of a moving truck when he was 10-11 and had a TBI that had some effects. He was paralyzed on the left side of his body, he had to relearn everything, and his mood changed. Over time and with therapy he made a good recovery but has always had some issue with balance, he would never be able to pass a field sobriety test if it was given. He has been forgetting more, which I have noticed for a while but he is just starting to notice it himself. He had a recent episode while he was driving where he was aware of what was going on, but he completely forgot how to drive. He had to take a wild guess and luckily picked the brake instead of the gas. His grandmother does have Alzheimer's Disease and his dad has been showing progressive symptoms, but he won't go see a neurologist. He does get a little more agitated with things than most people do. He and I have been together for nearly 11 years and he has not been seen once in relation to his TBI. During the time of us being together, he was in a MVA that resulted in a concussion (this was about 4-5 years ago, about when the forgetting started to progress). It is my assumption that once he recovered he was not taken for any follow-up care. I work in the medical field and understand how important follow-up care is. I can't seem to get him or anyone in his family to understand that, except his brother who is an ICU nurse. I am concerned about him.
Melissa Kelley replied on Permalink
hello, i just happen to run into this site looking for information on if you have brain damage do you have to take meds for the rest of your life as i do since the year 2000, i was in a head on collision car accident at 3 years old, (i was born 1970) that left me with a depressed scull fracture and a broken collarbone, also we were hit so hard that i was knocked out on impact for 6 days, i had to have surgery if i was to survive i have cognitive disorder, mild depression, anxiety, learning disorder, and it has been rough on me as i got older and i was told i could still have problems from the accident in my adult life, i think i am beginning to find that out
Derric replied on Permalink
I am 50 years post injury. Car accident 1972 at age 7. I was propelled from the back seat and my left frontal lobe struck the thick trim surrounding the inside of the windshield. I recall pulling a piece of the rear view mirror out of my left arm, leaving a scar to this day. My father and sister did not survive, only my mother and I. I graduated from high school with honors, received a Masters Degree in Environmental Law, and my Juris Doctor with honors. I passed the Bar Exam on my first attempt. I only mention these to demonstrate the varying range of future paths we all take. I struggled mightily with math in third grade, but won a spelling bee. Math made me excessively drowsy and I'd frequently go to the Nurse's Office to sleep, only to return to the class later in the day. At some point I decided I wanted to be whatever I was not. I was no longer good at math, so I'd study it more. I enjoyed language, but wanted a larger vocabulary, so I'd look up words I'd seen in the dictionary. I had zero follow-up with doctors. My mother was only told to be aware of any change in personality. I took up bicycling in college and rode 20 miles per day on average. I've been married for 35 years. In my early 30's, I got my first migraine. In the beginning they averaged a couple every three months and were manageable using OTC or a single pill prescribed by my doctor. By my early 50's, any prescribed medication was non effective and the migraines were frequent enough for me to begin quarterly Botox treatments. These helped tremendously, at first, but seven years later, I am back to daily migraines. I've been to the hospital several times, and have special notes in my chart on the only treatment that works for me, because standard treatment protocols do not. I see my regular doctor at least twice per year, and my neurologist four times per year. I average two trips to the hospital every year to treat the intransigent migraine. I worry about a stroke that masks itself as a strong migraine. Prior to 2018, I took pride in never missing work because of a migraine, now I am out sometimes twice a month. Over my entire history of migraines, the frequency pattern seems to be highest and most intense around the Solstices and Equinoxes, with some increase coming with extreme low pressure systems. However, this is merely anecdotal and may be limited to me alone. I have kept diaries that bore out this conclusion, but am long past keeping track of them when the migraine never dissipates. In the past two years I am unable to stay awake. Previously I could increase sleep on weekends to get rid of the migraine. Now when I get the migraine I tend to sleep all day, wake for dinner, go back to bed, wake in the morning hoping it is gone. I have slept 36 hours or more out of a two day weekend. My wife is very concerned and so am I. I'm starting to have issues with balance, nearly falling over while standing still. My ears do not appear to be congested, nor (incorrect official usage, but I disagree) are my sinuses. I may have some undiagnosed seizures (narcoleptic). The seizures are recent, as in the past four years, and very infrequent. I served on the Board of the Minnesota Head Injury Foundation, precursor to the Brain Injury Association (of Minnesota), precursor to the Brain Injury Alliance of Minnesota. I chaired the board one year. Even with everything I have accomplished, my severe TBI (my skull was crushed, bruised brain tissue removed, steel plate inserted to replace the crushed skull) still keeps reminding me that its effects are never ending. No matter what I achieve, accomplish or for which I receive accolades, it is still there waiting to destroy me, either with an earlier than normal mortality, or a life of constant pain. Onward trudges the soldier of life, pushing through the anguish of a personal hell, until mortis trips me face down into my dusty grave.
Kanwar Sandhu replied on Permalink
I had a road traffic accident in may 2008 where I had a brain hemorrhage and was in a coma for 31 days. After a span of 4 years, i had a cardiac arrest in nov 2012, docs operated me and installed an ICD near my heart. Recently that is in sept 2017 my heart beat rose to more than 400 beats per minute. Docs think it is because of my head injury. I'm not sure, please answer me.
Vince replied on Permalink
Yes it can, Like your self i had a car accident and had epidural hematoma, coma for 7 days and my heart beats 160 to 180 that,s more than 2 times the rate. I do know that A fast heart beat after a TBI can be normal...
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Michele replied on Permalink
My 12 year old son , who incurred his brain injury 10 years ago, has much support and insistence in our home. Currently, he takes CoQ10 30 mg twice daily, Alpha Lipoic Acid 100 mg twice daily, one multi-vitamin by New Chapter called Perfect Calm at night, one multi-vitamin by New Chapter called Perfect Energy in the morning, and Viva Fish Oil 2,200 mg with one half dose in the morning and one half dose at night. To note, my pharmacist guides me with all these choices and doses.
We have seen improvement with our son with use of each of these supplements and vitamins. Since the vitamins contain essential herbs, they should not be taken with certain meds. www.rxlist.com gives a very clear direction about which herbs interfere with certain meds. With surgeries, anesthesia, and antibiotics, the vitamins and maybe even the supplements should be discontinued for the duration. Also, TBI survivors rebuild synapses when they learn, exercise, and read which has been done with my son daily for ten years, and he measures at grade level in all subjects but math, takes all tests independently, and can now handle a timer for a stress factor.
Anonymous replied on Permalink
There are many alternative and complimentary health interventions that help greatly with TBI symptoms - with documented research. See discussions of energy medicine (emcompassing acupuncture, acupressure, yoga, chi gong, tai chi, Eden Energy Medicine, Healing Touch, Reiki among others) and energy psychology.
Anonymous replied on Permalink
my 14 yr old daughter was involved in a car accident and recieved a severe tbi ..diffuse axonal injury . glascow scale of 3 upon arrival to hospital vie med flight. two months later she walked out of the hospital without any medications . She is very exhausted all the time and it has been two years . Her brain however seems to be better than before ,. SHe is in school with accelrated classes and in the honor society . Everyone thinks she is fine . What I cant get anyone to understand is that while she may be very book smart , her physical being has changed ,. She suddenly gained alot of weight . She went from a size 6 to a 13 very rapidly . I have asked over and over about getting her hormones checked or thyroid checked and all im told is that it is probably because she isnt as active . But she wasnt really an active girl before the accident . I get so frustrated with people who dont listen and i am fearful something is wrong they are not addressing .
Don replied on Permalink
If they gave her anti convulsants and antidepressants in the hospital then some of them can cause severe weight gain!
Michele replied on Permalink
My son incurred his moderately severe TBI when an uninsured motorist over compensated to the left at 60 mph on a country road with a 45 mph speed limit, hitting our car as we waited to take a safe turn. Luke got all the impact from our car crash. He had a CSF leak; lost all speech for 18 months; had a sensorineural hearing loss of his right ear with profound deafness; and struggled behaviorally, socially, and cognitively.
When he was 9 years old, he was diagnosed with precocious puberty by a Children's Endocrinologist in Birmingham, AL. His symptoms included a 20 lb. weight gain and a 5-inch gain in height in six months. His testosterone measured at nearly a 17 year old level. With Lupron 30 mg injections given once every three months, he now measures in the 75th percentile for weight and 93rd percentile for height. He has gained very little height and no weight during treatment, and his 20-lb. weight gain was never lost. He was placed on these injections because his genitalia would have looked like a grown man's by 11 years old, and his growth plates were going to close five years prematurely.
I would advise you to investigate further and find a pediatrician who is well-experienced with patients who have TBI (which I am sure is not an easy find).