Traumatic Brain Injury: A Lifetime of Recovery

Return to article

Comments (65)

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.

Anonymous replied on

My experience mirrors what previous posters have said.  My husband suddenly developed a seizure disorder, probably from an infection that the doctors couldn't see or test for at the time.  He is recovering from the after-effects of an encephalitis-like mystery illness. The illness caused seizures (status epilepticus), severe enough to put him into the hospital and a 1 week coma to stop the seizures. Those seizures caused brain injury. Not a physical bump, but a medical bump on the head, so to speak.  He is about 4 years post-illness and still struggles with short term memory issues, a 20 year blackout/amnesia, aphasia and cognitive problems and executive function issues.
Yes, he improved greatly since his discharge from Neuro Rehab, but the long term prognosis is not for a full recovery, nor will he likely ever drive again, as his seizures are not going away.  
We were also told the 12-18 month mark is the end of recovery. Thankfully that was not the case but it did require a lot of intensive therapy, rehab, and pushing him to eke out more functionality.  It's hard, no doubt about it, but even minimal continuous recovery is better than stagnation or regression.

Anonymous replied on

I am a year out from my TBI from a car accident, I was rear ended.  The new scientific advances are hopeful and so is my faith in God.  I have a team who embraces the alternatives.  10 months after the accident, my doctor suggested Low Intensity Light Therapy (LILT)and it made a huge advance in my recovery.  Combining the LILT, with cranial sacral therapy, chiropractic and deep tissue massage also has enabled me to work again, 12 hours a week instead of 40 but it better than nothing.  However, the CSF pressure is not gone and prevents me from fully functioning, so now its a Shunt to relive the pressure on my brain.  Hopefully this is the key to turning the final curve in the road to recovery.  I pray and put my hope and trust in God each day. 

Anonymous replied on

I can affirm that I myself am blessed with a tbi! It sucks but I keep on going. I had to teach myself how to tie my shoes again. Eating was hard too. The mood swings are f****** hard. I taught myself everything that I once new AGAIN!! All I have to say is "turn that frown upside down."

Anonymous replied on

I have a nephew who had a tbi last year. I love him so much. His mom is taking care of him. He had a very hard life before his accident. He was a very heavy drug user. He remembers his old friends now and calls them. He is very loving and trusting. He sleeps with the "just" he says. He has no addictions now. However I am very concerned about his mom pushing hime to see old friends. Of course they tell him they are off drugs now. Some are I am sure. I know his mom is trying to keep him happy but you have to be careful with stuff like that. He is supposed to go to a tbi center and stay to help him more but he has not gone yet. Do you have any advice to help me help him and my sister? I am very concerned. Thanks. KDH

Anonymous replied on

I could relate to this so much. It's been almost 8 years of recovery for me- a rollercoaster most of the time, mind you, but still recovery. Life is very full today and I am overwhelmed with gratitude more days than not. I had the opportunity to study abroad the summer of 2015, I graduated with a BA in education for early childhood through 6th grade this past summer, and got engaged to a wonderful man last Christmas. Life has played out in my favor in ways I had never even imagined. I truly believe the key is to stay positive and never give up. While reading your article I looked up the words aphasia and tinnitus. I most definitely relate to experiencing both pretty frequently, even today. Thank you for enabling me to expand my vocabulary!

Anonymous replied on

This makes me want to cry, with happiness. I'm not alone with TBI. And to know there is hope for more improvement Also very informative. It's been a little over a year for me. Thank you for sharing!

Anonymous replied on

The stories sound so familiar to mine. I was on a scooter victim of an illegal left hand turn SUV only 2yrs ago. Misdiagnosed and sent home with a TBI. I have also heard all the talk western medicine has to offer. This is your life now get used to it. I too came from professional position and not at all happy with no time line of recovery. One thing that did help with my speech, language, word finding was High Performance Neurofeedback. This is what they have been using on the NFL football players and it seems to be helping me. Dr Rozelle look him up, cranial sacral therapy with meditation is also working. What to do with Headaches, dizziness, balance, and back pain. though just had another round of epidural injections . I hope to find a replacement for these too. I am always looking for natural way to treat myself to get rid of the poisons they try and have you take.

I think I did read once you accept yourself and get rid of the anger and the questions why you can move on. Some people never get a second chance to recreate themselves.

Anonymous replied on

I believe cranial sacral therapy saved me, along with eating sea vegetables and nutritional yeast, taking vitamins B12 and D3, as well as an alga supplement. Also, a gluten free diet has helped tremendously.

Anonymous replied on

Every word you wrote about your past experiences was like a smash in my face. My name is Irene and I have been struggling ever since I became a 'survivor' of my Traumatic Brain Injury. I don't feel like a survivor, because everything that could go wrong in my rehabilitation process went wrong. Doctors never took my case serious, focused on the wrong symptoms. It feels like a never ending battle and I crave for some peace and quietness. 

Every day is a struggle and I'm still in the middle of the whole legal circus. I'm fighting on 3 fronts at once, I've been suicidal and what not, but thanks to the continues support from my husband I'm still fighting.  

For more info on me or my story I invite you to check out my story at lunasnight.com Once again thank you for writing this down it sheds a small ray of light in the darkness that surrounds me. 
 

Anonymous replied on

After reading I get hopes from my husband he is 11 months post TBI and faces same problems memory issue aphasia but things will improve and each day is new. Thanks for the write up its inspiring.

Anonymous replied on

My husband is 13 years post TBI. After 4 months I was told to look for a personal care home placement for him as he wasn't going to get any better. It was like the Doctor drove a ram into my stomach. I was never one to accept that "the doctor knows everything" and so I fought to keep him in rehab and ongoing therapy. Today he still has memory issues and aphasia but made a full physical recovery except for loss of taste , smell and hearing in one ear. He learned to walk, talk, read and write and got his drivers license back after much hard work to pass the written test. We have traveled to many different places and have had a good retirement together, although it is certainly different than it would have been without the TBI. The medical community still tells people that a year is the end of improvement. We are sure there are still subtle changes occurring and encourage everyone to keep hopeful and don't ever think that there won't be any more improvement.

tarlisa moore replied on

My husband David had a tbi January 20 , 2020 he's not in a coma anymore his doctor gave him a CT Kat scan he said my husband don't have anymore swelling or bleeding on his brain he opens his eyes every day but he just goes right back to sleep I don't know what that mean for my husband recovery he can't talk or walk yet an he has a feeding tube and a tract on his neck.um not giving up on my husband we have a beautiful 9 year old daughter she so sad she mis her dad so much we are keeping our faith in God.we can't even go an see him because he way out in Kenosha Bay at water's edge an we in Milwaukee WI I can't find a rehabilitation place that take the tract an feeding tube.is anyone out there with some words of encouragement an advice it would be very helpful. Thank u! God bless you.

Anonymous replied on

Wow, what a great piece of writing that mirrors my own experience. My TBI was nearly 16 years ago, here in Switzerland & no-one even mentioned 'TBI' to me. Once I could use a computer again I found out on my own. No rehab, no great understanding, just 'go back to work & forget it'. After a seizure, insomnia & depression I'm unable to work and in a new place now. And I'm learning to like this place. The feeling of 'surviving the day' has gone. I'm fortunate that I didn't suffer much physical damage & my wonderful plastic brain continues to do its best to help me recover. I'm enjoying getting fit, walking my dogs & spending time with my daughter. Thank you 💚

Anonymous replied on

David,

Thank you for the thoughtful post. I, too, think the medical community needs help in improving the outlook for TBI survivors. After reading several memoirs and connecting with other survivors, I'm shocked and at a loss to know how terribly different my post-care was as a patient in Charlotte, NC. Obviously, my surgery and acute care were top notch, as I'm still here, but the after-care was awful. I'm hoping to group together with some people who have blazed this trail and bring better after-care options to those who need it. I'll continue to follow your posts and learn from you.

MH - 2 year TBI survivor

Kathleen replied on

August 10,1980,age 19 and was riding on the back of a motorcycle that was hit by a car.I gave the police the phone number I had as a child in New York state but I was in Tucson,Az.Spent 6 weeks in the hospital.Was in a coma,paralyzed on my right side,couldn't speak,had aphasia something terrible and 2 big black eyes! I had to learn how to walk,talk,think,regain any kind of normalcy.It's been a long,hard fight and accepting the fact that I am different is still difficult.Many people don't understand the battle that is fought daily to be "normal".My temper is often tested;sometime daily and it's difficult to deal with.I feel blessed to have survived an accident that I should have died from but will have to deal with the aftermath forever.I feel blessed to be a survivor and now I know I am not alone.Thank you all for your posts

Pages