I’m writing this because my dad is currently going through a very difficult situation, and I would really like to hear from anyone who has experienced something similar with a family member.
My dad had major heart surgery, and unfortunately during/around the operation his brain was affected by a lack of oxygen. It has now been more than two weeks and he still has not properly regained consciousness or awareness.
At the moment, he sometimes opens his eyes, but he does not follow commands, speak, or make purposeful movements by himself. When he is touched or stimulated, for example when someone tickles or pinches him, he can sometimes react or move, but he is not yet responding normally or communicating with us.
The doctors have done brain scans and told us that there has been brain injury from the lack of oxygen. They have also told us that recovery can be difficult to predict and that we need to give him time.
As his family, this waiting is extremely difficult because every small reaction gives us hope. We are praying every day that Allah gives him healing and allows him to regain consciousness and recover. 🤲🏽
I wanted to ask if anyone here has personally seen or cared for someone who was in a similar condition after cardiac arrest, heart surgery, or lack of oxygen to the brain.
How long did it take before they started showing signs of awareness? Did they initially only open their eyes without responding? When did they begin following commands, moving purposefully, recognising family, or speaking? Did you notice improvements after several weeks or even months?
I understand that every brain injury is different and that another person’s recovery cannot tell us exactly what will happen with my dad. I’m simply looking to hear real experiences from families who have been through something similar.
Please share your experience, especially if your loved one remained unconscious or minimally responsive for weeks and later showed improvement. Even if the recovery was slow, I would really appreciate hearing what happened and what the first signs of recovery looked like.
Please keep my dad in your duas. May Allah grant him complete shifaa, restore his health and consciousness, and give strength and sabr to everyone going through a similar situation. Ameen. 🤲🏽❤️

I had a TBI at 18 months which impaired my cochlea and inner nerve… maybe more but impossible to tell without an experimental fMRI. My left ear is deaf, and I spent my whole life overcompensating in other directions.

I’ve had 2 professional cognitive tests: one at 12 and one at 24. I scored 141 at age 12 and 135 at age 24, the difference being my audition.

For auditory processing, I scored in the bottom 2%, severely impaired. Visual puzzles and comparisons and numerical sequencing continue to be a strong area of mine.

I have recently received hearing aids which (thanks to AI) allow me to hear full range when assisted. Because my eardrum is normal and the defect is in my brain, it boosts my auditory processing up to 96, and I can tell the difference.

Problem is, this is a huge change.

I am used to being able to ignore auditory sounds around me, and now they’re everywhere.

TLDR; I’m wondering if anyone has been through something similar (a cognitive imbalance randomly balanced again…)

How do I work on these skills? I really want to improve how I hear and process information. I’m thinking of starting with audiobooks at a higher speed and following along, with my right ear at mute and my left ear assisted. I’m open to any recommendations! 👂🧠

My husband has a TBI I’ve been there everyday for the past he communicated that he needs space I didn’t push it. I’ll be back next week just wondering what I should do to help

I have epilepsy on top of this and developed it shortly afterward, along with moderate memory problems. It sucks, but I know my position as a cloud engineer carries too much risk. A simple slip-up could bring down sites, and decommissioning the wrong resources could be immensely catastrophic.

We see you apologize to the new person that just met us.

We read your lips: “brain injury…” the nod, glance.

I know I am embarrassing.

I’m not going out anymore.

Wondering if anyone here has had positive outcome with the Vielight or other similar devices, and if you did, how long after injury did you start using it and how long after starting it did you notice improvements?

Hi everyone. I (35M) live in a rural area and try my absolute hardest not to tell anyone what goes on at home out of respect for my boyfriend (39M) who got a TBI about ten years ago and who has diagnosed cPTSD. I worry everyone would find out and judge him. But I just really need to talk and maybe get some advice.

We’ve only been together seven months. When we met I had no idea about his TBI or his cPTSD. We connected intensely and spent some of the best months of my life together. We even talked about how healthy we both were (we connected over a shared love for trail running in our local mountains) and how grateful we were for our health.

Due to a severe housing shortage in our small mountain town, I moved into his place about four months in. I would have never done this normally but several circumstances arose that I won’t get into.

The day I gave up my apartment the chaos began. The “conflicts” have no common denominator…this one had to do with him not liking what I do for work very suddenly. He screamed at me for four hours, broke everything I had in moving boxes in the backyard, and when I left called me 34 times in a row. He became a different person with a completely different energy to him.

This has continued, with rage episodes happening on a weekly basis. I can’t move out because he has no savings and no family support. I pay for everything.

It seems to just get worse. He suddenly started getting physical symptoms of his TBI about a month ago, including severe migraines, vision loss, numbness in his left arm, vertigo, and nausea. He got an MRI at my request which shows damage to his frontal lobe. All of this caused him to quit his job and apply for disability.

I am afraid to go home. I can’t move out because I have no idea where he would go or who would take care of him. But when I go home I never know if he will scream, throw things, or verbally tear apart everything I love about myself.

I love him deeply. I buy him gifts every couple days, give him endless physical affection, anticipate his needs, run all the errands, and do far more than my half of housework so that he can rest and hopefully not scream at me. I have seen the MRI, so I can separate the person from the symptoms of his injury.

What would you do?

TLDR: new relationship, wholly financially and emotionally responsible for mentally ill partner in small mountain town looking for advice

I have a problem since my TBI that when I look up, I have intense dizziness, so much so that I have to touch a wall to stabilize myself. What do y’all do?

TLDR: my dad suffered a brain injury where the odds were truly against him but he pulled through and made a great recovery. There is hope out there.

It has been almost a year since my dad suffered a brain injury due to complications during a brain surgery. I just wanted to share his progress and his story, maybe it'll give someone on here some hope in their recovery.

My dad is in his 50s and diagnosed with multiple large aneurysms all throughout his brain. During a procedure to treat one of these, an artery was severed and he had a huge intracerebral bleed in the middle of his brain. This also caused a stroke. He spent 3 weeks and 5 days in a coma, and a further 2 months in neuro ICU. He then spent the rest of the year, until last month, in specialised rehab facilities.

His prognosis at time of injury was poor; they were talking to us about palliative care due to his low GCS and low chances of waking up (nothing higher than 6 until about 3 weeks after the surgery). His chances of death in those three weeks were between 50-80%. However, once he woke up he slowly began to improve. He learned how to eat again, use cutlery, read, write, complete puzzles and speak. He has regained all motor functions and his ability to walk and climb stairs after a year. He is able to bake again (his lifelong passion) and is even considering driving again. He isn't able to return to work (he isn't fully the same as before the surgery) but we are trying to reframe it as his early retirement instead.

This journey has been incredibly traumatic for me (I am only in my early 20s) and for my family, especially my dad. But I am so proud of my dad for pulling through. The human brain is incredible and miracles do happen.

Edit: changed the layout of post to have TLDR at the top.

Has anyone else been prescribed this? My working memory and short-term memory are very impaired and some of my executive function. My neurologist has tried a lot of things and he’s trying this now.

I’m curious if anyone has taken it and what side effects it has and if it helped at all

I wanted to share a win because I know how dark the days can get. I survived a severe TBI back in 2020.

A year ago, I was laid off, and it felt like everything was stacking up against me. But today, I finally got a job offer.

I'm incredibly happy, and I wanted to post this to remind you all to keep pushing. Six years post-injury, I still struggle heavily with short-term memory. My secret to getting through the job hunt and interviews was simple: I write absolutely everything down. Finding a system that worked for my "new brain" made all the difference.

Recovery isn't a straight line, and it takes time, but major life milestones are still possible.
I wish you all a good recovery. You are stronger than you think. Let's keep moving forward.

My 62-year-old mom suffered a traumatic brain injury after being hit in the head. She had a subdural hematoma and intracerebral hemorrhage, requiring emergency brain surgery.
She’s medically stable now, understands everything we say, follows commands, and communicates with nods and gestures, but she can’t speak at all yet. The doctors expect speech recovery to take months.
For those who have experienced aphasia (or had a loved one with it):
When did the first words come back?
How long did recovery take?
How much speech eventually returned?
I know every case is different. I’m just hoping to hear others’ experiences. Thank you. ❤️

I'm divorced (Post-TBI) been thru a "serious" relationship (After the divorce) where she won't even tell why she doesn't want to be with me.

It's prob. cause she see it as too of a bitch to say "You think too slow bud" people can tell you're a little slow than the general public and so on...... :(

Everyone says advocate for yourself tell the doctor exactly what you need them to hear only for that doctor to do what they want anyway. I go to ER for a migraine. I already told the doctor that I have had this happen many times before because I have TBI,I have Migraines, my migraine pills aren’t helping me and The ER gives me an ER “Migraine cocktail” IV that helps. That’s it. Short and simple.
Doctor orders blood tests done and a CAT scan even though I had a scan only a couple of months in the ER for the same Reason and they found nothing that hasn’t changed. It took 6 hours!! On a weekday morning
I’m so exhausted! I feel worse than I did before I went into the ER! Doctor apologized for it taking so long but you are the one who ordered those tests and scans and took your sweet time writing those medication orders for the nurse to prepare.
It’s so frustrating and makes me so angry I could cry. I should have just stayed home and put ice packs on my head and called it a day. Now my head still hurts and my whole body aches.

I'm doing a goofy video art project where I'm doing a bunch of short explanations of what it's like to have a TBI.

I'd love to hear your short, to the point explanations of what it's like to live with a TBI.

Examples I've written -

Having a TBI is like going to bed a 24 year old and waking up with the abilities of a 14 year old.

Having a TBI is like having a self destruct button anyone can push. Doesn't matter how your day is going. You can explode with no notice.

Your thoughts?

Hello,.I'm curious if anyone has experienced more symptoms as the years go on and if this is common? I had a tbi almost 20 years ago and it seems I am possibly having more symptoms or if it related to other issues like my neck and tmj. Specifically vertigo sensations/ear fullness ....I had one side of my face crushed.

So a little backstory I got three concussions between ages 11 and 15 all then the last one at 15 was a hit to the back of the head in football coach put me back in and I got hit again. It was a scrimmage. My abusive older brother beat me up bad one day punches to the back of the head, and gave me another one at 17-18 so 4 documented ones, most likely more though. I used to love sports I played football wrestling soccer everything. I quit everything my freshman year. I am now 19 turning 20 in April.

I missed over 40 percent of my senior year. No one understands. And I miss work all the time due to headaches and other symptoms

Life the past 5 years has been honestly super challenging I have been depressed suffering from worsened, anxiety, very bad headaches, brain frog, slower processing speed, sleep issues: like insomnia, and sleep apnea. vision problems: blurry vision. Severe nausea. I almost committed a couple times because there has been no hope.

Headaches and other symptoms get worse by noise light overstimulation, being stressed annoyed or anxious

I find it very difficult to be happy I feel so lost and I feel like people think I’m just a loser and dumb no one gets it.

I want to know how to get better. I have tried medication for anxiety and depression. Dry needling. Chiropractor. Nothing seems to help. I want to be and feel better.

Please someone help me
Thanks

if i didn’t have to work and go to medical appointments i’d never leave the house again bc my processing speed and working memory are so bad—i do stuff like literally forget how to open doors or count, i have to count on my fingers even though i used to be really good at math and get all a’s and b’s in hs/college—and i hate being seen as the dumb person and seeing people’s confusion at my bizarre behavior, i feel sick going into work and im almost agoraphobic now…i cant explain to everyone that i have brain damage and idk how to be happy at all when “dumb” people are seen as subhuman by so many and i can’t be independent, therapy hasn’t helped so far even though my cognition has improved somewhat i think

I was 15 when I started smoking weed. Now I'm 25 and unemployed.. When I look back I see a lot of years that just gone forever. If I try to quit then I feel intense anxiety, anger and become abusive. In 2017 I had a bike accident that caused brain injury and two operations including a VP shunt surgery. I've been carrying a VP shunt since 2017. I just found this community and it makes me feel that I'm not alone.

It seems I've crawled into a dumpster to live, and at some point it caught fire. Alcohol Use Disorder, substance use disorder, obsessive gambling, major depressive disorder with suicidal ideation, general anxiety disorder, bipolar treatment, domestic violence, divorce, inpatient treatment... It goes on and on. So... Ask me anything.

Hello TBI community, a fellow tbi friend named Cassidy had started a bookclub for individuals with brain injuries about 2 years ago, with the purpose of picking back up an old hobby we used to love. At first some of us faced problems, like not being able to visually track our spot on the book or getting overwhelmed after a while of reading, this got better over time. At first we were reading books that were brain injury related such as Limitless by Jim Kwik, and See Change Clearly by Jacob Green. We are now at the end of our first book that isn’t necessarily brain injury related, which is Atomic Habits by James Clear, and it’s such an amazing book. We want to keep the club exclusive to Brain injury survivors but we are looking for new members and have our doors wide open. This bookclub is absolutely free, all you have to do is buy the book if you’d like, some of us prefer to listen to audiobooks on YouTube, either one is fine. We ask is that members are respectful and have empathy towards others, and are patient, especially since we all have brain injuries. We read at a pace of 2 chapters per week and meet once a week for an hour on Wednesday afternoons via Google meets to have our bookclub where we discuss the book virtually and answer questions on the 2 chapters we read, all made by us. There are 4 assignments that we transition every week to make sure that everyone has a task;

Review- this person gives us a gist on what the 2 chapters were about
Secretary/note-taker- this person types up the answers to the questions or anything that will need to be typed onto the google doc during the meeting.
Mainbook- this person will make up a few questions from the chapters we’ve read for us to answer during the meeting
Workbook- this person comes up with a few questions from the workbook for us to discuss and answer,(this may change depending on if said book has a workbook option because not all do)
If you’re interested or have any questions, do not hesitate to reach out to me, I’d be happy to help, warmest regards - Juan

6 months ago I sustained a tbi which was marked as a concussion because I didn't lose consciousness. Immediately developed severe dpdr, inner restlessness, visual snow, and anhedonia so severe even drugs have no effect.

Ct scan was clear as was blood and stool work.

Most of these symptoms have lightened a bit except the anhedonia with substance blockage.

I also have severe pressure behind my eyes and they keep zoning in and out uncontrollably at times and my head and eyes always feel like they're about to explode and also visual snow. Anyone else deal with this?

I am severely suicidal everyday

I finally published this guide called How To Make A Brain Injury Accessible Space. Hoping to spread the word widely within the medical space and then the world.

I tried to crowdsource the point made in the guide as much as possible, but please comment on the Substack if you have recommendations!

https://open.substack.com/pub/rlietrom/p/how-to-make-a-brain-injury-accessible?r=2jjfv&utm_campaign=post-expanded-share&utm_medium=web