Adult Life after a Traumatic Brain Injury

Hopefully Mayo can do more detailed investigation in case there is something other doctors missed (a common occurrence based on my experience) in your brain, hormone, autoimmune, or other tests.

Right temporal lobe. Both my short term and long term memory are gone. My long term is a little better though. I have problems with memory, speaking, cfs, balance basically everything cognitive and nerve related but there's no change is any test, blood work, anything. The problem is is that new symptoms keep arising and getting worse. I'm losing hope that anyone can help.

Left temporal lobe? It would be good to have a list for the mayo doctors on what cognitive functions are declining and how. Such as finding words or other left temporal lobe hits. How is your short compared to long-term memory recall, and any other changes that may or may not be related (balance, emotions, ...anything different). Any changes in your EEG or MRI compared to the past? Would cognitive therapy be useful for you? My moderate TBI was 33 years ago and it nailed by left temporal and basal frontal lobes; I haven't noticed any declines yet other than age associated (I'm 70), and some minor neuropathy.

Hi. I just recently contacted mayo. I had to have part of my temporal lobe removed 11 years ago. I've been having worsing cognitive function since then and no one can figure out why it'd getting worse. Any advice about my appointment with mayo?

@heathertink1970 I wanted to share a bit with you because my dad had a traumatic brain injury from a skull fracture in his 60's. It was a few months before I could recognize his personality. He was just someone else, and after the hospital discharge, I took care of him feeding him through a GI tube because he lost the ability to swallow correctly, and helping him relearn language that got messed up. He would invent words by throwing 2 words together, think it was real and argue when I corrected it.

In later years, he became very emotional and would cry easily even about things that happened to someone else like tragic news stories on television. At the same time, he was kind of drawn to it and watched the news all the time. He was still angry about bullies in high school and a toddler who rode her bike into his path as he rode his bike down the street. At that time, he had had a stroke that took away half of his vision so he saw only to the left half, and she came into his field of vision suddenly from the blind side, and he hit the brakes, flew off the bike and broke his collar bone and fortunately was wearing a bike helmet.

After his initial recovery from the skull fracture injury in his 60's, he was able to return to teaching a swim class he was running for adults with disabilities at the YMCA. I volunteered and helped in those classes for both adults and children, and I worked with people with head injuries. In general, they could easily become frustrated and short tempered, and I saw that in my dad too. He had a short temper even before his head injury, and it got worse and he lost the ability to problem solve and reason well, but didn't realize it. He always felt sorry for himself and couldn't allow himself to be happy because something would set him off. Sure there were times of contentment, but with advancing age and him worrying about leaving my mom alone when he was gone, he wasn't very happy.

When I read your words, I hear hope because you recognize what the challenges are and are trying to overcome them and doing a good job with it. I am glad you have some help with things. My dad never did recognize his limitations. I think you have the ability to inspire others with your words and honesty, so I would encourage you to keep on writing and sharing.

Blessings,
Jennifer

Hello,
My surgery did stop my complex partial seizures, and I was left with very occasional auras (simple partials).. a lot better than before! I did develop major depression post-surgery though, as well irritating side effects. [My least favorite being the "tip of the tongue"]

I do appreciate your kind words. I felt like I completely lost myself after my TBI. As though I was a mere shell, with nothing inside. I have tried very hard to get better, and to be the best person that I can be. And, unfortunately that does require going in-patient from time to time.

I don't know if this difficulty managing my emotions is due to my life circumstances, where the brain injury is, or a mixture of the two. But, I do often feel emotionally alone (other than help from my psych team).

My answer to your question: Yes, writing what I am thinking and feeling is *much easier * than speaking it. Not due to humility, but I just can't recall in the moment. My mind goes blank. But, with some time and free from pressure, I can think much easier... That's my experience, anyway.

Thanks for reading.

@heathertink1970, you sound like a very strong woman who has worked hard to accept the hand she was dealt and to know how and when to get the support and help she needs.

Did the brain surgery stop the seizures? Is writing easier to circumvent the struggle with finding words? I ask because your writing is beautiful.

My TBI occurred 18 years ago. . I was one-year post surgery, in my left temporal lobe, to remove areas in which I had uncontrollable seizures. Just that time of year, and a little bad luck I guess. I slipped on the ice in a parking lot and caused a little bleeding inside my left temporal lobe... I was lucky: I had extra area for the blood and swelling (I was watched when I got to the E.R. though).

My TBI unfortunately intensified the effects of my brain surgery, both physical and emotional. At that time, I was a stay-at-home mom to two little girls (aged 2-3 and 5). I tried hard to be a good mom, but I struggled every day. The major depression that had developed post-surgery quickly became severe. My husband wasn't understanding or sympathetic (at all) with my physical changes. To him: I looked fine & was therefore blowing everything completely out of proportion. Our marriage quickly fell apart, despite efforts in therapy. The end of my marriage devastated me, and I knew that I certainly couldn't provide for our daughters, so I moved out.

I have struggled with major depression since, and work a lot with psychologist and psychiatrist. I also have a helper to assist me with processing regular paperwork, as well as maintaining my finances.

My memory was strongly challenged prior to my TBI, but I do have a tougher time finding the right word(s) a lot. Especially when I am feeling under pressure or emotional. In those moments, forget it.. and I move onto a different thing. Moving on has become easier for me, as several years passed, and I realized that the harder I try to recall, then I lose the entire subject that I was thinking about. And that is REALLY frustrating! Cest la vie!

I hope that I've answered your original question.. Best wishes to everyone!

Welcome to this group and to the recovery process. As a 2 year old survivor, you have many new wonderful years still to come. My injury happened 20+ years ago, the first year was ugly because of short term memory, aphasia, emotions... you name it, I had those problems. In-person speech & occupational therapy sessions werr really important, but it was family, friends, co-workers who helped me more. Yes, even co-workers. I didn't lose my job but because of aphasia and memory issues my job wasn't actually the same. but close enough. Part of my pre-injury job was teaching computer software for staff in the library I worked at, but couldn't handle 12-20 "students", but could teach one to one instead. During year 2, I was able to work full-time again, and thinking I'm getting better. A big thing that helped, and still helping, is being my own advocate. Which meant telling other people about not just my traumatic brain injury but, since brain injuries are often called the silent injury, talking about other survivors as well. I can't tell you how many times, after a aphasia or short-term memory issue, I heard somebody say "that happens to me all time too" or call it a "senior moment". Bull crap, it's not about that. To continue to recover from aphasia: I play my favorite music records (or CD's) all the time, especially in the car, and sing the lyrics with the band; talk back to reporters when listening/watching news channels on the radio or television. For short-term memory? New hobbies: I bought a mandolin to learn a play an instrument; started growing vegetable gardens; found plans and made a pinhole camera for film photography.

In my humble opinion, don't focus on your losses, focus instead on what you haven't lost. Let your long-term (working/muscle) memory guide you for recovery. Find something you never did before, but have thought about doing before. And above all, don't let your injury define you. Believe in yourself.

Thank-you for your post. Yes, I have part of losing memories & understanding & taking care of your use of accounts cost & helping your families needs & getting upset or mad that you never felt these things.

I’m sorry. 😟

In my TBI, happened in 2012 from my bicycle one block from our house; it locked up from the very front of riding it; my head hit the top-leftside of my brain (not a helmet). Do I remember of this accident? Usually, no.

😔 I’ve lost: my good job during my city; losing my ability to ride MCs anymore; one class close to me master degree; traveling from other places by helping to drive; taking care of the big needs to take care of our money; swimming again and on…

🙏🏻 Over this time, I was upset, angered that I could not do it ; no helping my older kids for their future, BUT my wife, Karen, has done this for the last 12 years even as she works as a teacher in local, public school. Helping me to go to my other doctor & drug needs for things like my anti-seizure. She drives to her job; going to other families in other states; spending our family for online needs and one.

🙏🏻 Now today, I’ve lost if these things, but, usually, I’m not upset or mad (as much), but not understanding when talking is hard daily; reading & writing is still hard for me. But way better a decade than before.

😉 Where are here of people like me & dozens others. You are still a little higher (better) than me. But TBI folks have different ways & needs… if what happened.

Thx for your writing and needs for you ❤️
GregD1956 - Greg D.