Coping with permanent issues
 

Hi guys,

I was just wondering if anyone had any good medical literature or advice as to where to look to understand how or why when this becomes permanent. I am not trying to be a downer just understand the facts of the situation.

I am in a good places, but still have double vision, exercise issues, nervous system things going on (or I'm told that's what it is) headaches and psych issues to name a few. I am 20 months in, and have had a bunch of concussions prior, I would never ruled out further recovery but something in my gut tells me it's here for an extended stay.

I'm almost ready to accept it. I am just wondering if that's the way to go, continue to work to improve it but be resigned to the fact that it's going to be a part of me going forward

Anything helps!

I started reading.......Many books have been helpful over the years....Mild Traumatic Brain Injury explained good...Mango Princess..If I only Had a Brain Injury.....Those off the top of my head...

Its been a long time since I was looking for answers...

My neuro said that the brain can reach a tipping point where it cannot recover. Basically, the processing reserve becomes overwhelmed. That is my case. I have had 3 NeuroPsych Assessments over a 12 years period and the results have been consistent. For me, it was a cumulative process of 14+ concussions. 1 severe, 4 moderate and 9 mild to very mild. Over 35 years, my limitations became more pronounced.

I have work-arounds for just about every limitation except my struggle to process to drive. I can drive but have found myself in too many near misses to drive consistently. There are some things I just cannot do at a pre-injury level, mainly due to memory dysfunctions.

I don't know how you can determine if any of your symptoms are permanent other than testing over a long period that shows no improvements.

I haven't had much follow up testing as my issues aren't to bad cognition wise any more at least they don't bug me, I deal with physical stuff and overwhelming issues sound light etc,

I guess at the end of the day I will have to carry on without closure, I am hoping to have an answer as it would make recovery much easier I think, but it seems to me 2 years one would have to think some of it is sticking around.

Thanks as always for the responses

I would also say that testing is really the starting point. It really helps pin-point the damage. I was shocked by the results of my test. I was then able to make the life decisions.

I was living in denial before the test and everyone around me was covering for me at work. I knew I was having issues but passed them off as bad days or not sleeping well.

I would have been fired (and should have been) if I didn't go on long term medical leave. This would have been too hard to accept if I didn't have the hard data.

MVTBI

I too am about 20 months out and have been wondering a lot of the same things you are thinking about. I experienced a lot of improvement since stopping work in February of this year, but recently it feels like improvement has slowed. I go back and forth between wanting to continue to look for different therapies that might help me, and just giving up and accepting that only time will tell whether or not I get better.

I cannot tell you if you or I will have permanent issues. But this is the way I have been thinking about it... Most days I feel about 80-85% of my pre-injury self. Which compared to how I was 1.5 years ago, feels amazing. So most days I am positive that there is an end to this and that some day I will get back to 95-99% of my old self again (I don't think we will ever be 100% the same). But I still do have bad days where it feels like this will never end. I have to tell myself that these bad days are temporary and that I will feel good again and just slog through them.

It is the good days that keep me going and keep giving me hope that a lot of this will not be permanent. I hope you can hold on to that as well. I understand that it is SO frustrating to deal with all the unknowns.

Get your eyes checked for binocular vision (bv) issues. Could solve some of your problems.

I'm also about 20 months in, and while I've certainly had some improvement, I'm still struggling quite a bit. After taking about 9 months off of graduate school I resumed last February, and have been plugging along at a much reduced pace and intensity, not making the kind of progress I need to make. My advisor and committee have been supportive, but I'm not really being a good graduate student, and that's becoming more and more apparent.

I've been feeling a bit worse the past month or so, which has brought me back into grieving the loss of my former self. I seem fairly stuck here, in this mode of grieving. It sort of drifts to the sidelines when I'm feeling relatively better, but the source of that grief is always there - the fact that I just don't like who I am right now and the circumstances of my life. I feel like I've reluctantly accepted that this is where I am now, that I can't do all the things I used to and that I hopefully will in the future, but I don't know how to not, at least periodically, dwell on how much my life has changed for the worse.

I guess I just don't know how to move beyond grief. I feel like I have fits and starts to get past it, and do OK for a while, but it just comes crashing down again eventually. Dr. Roberts Stoler's book talks about the importance of grieving the loss of self and suggests things like holding a funeral for yourself, the idea of which just seems so repugnant to me, but I clearly haven't been able to move past this grief. I guess I can't even imagine what it would be like to just accept that the old me is totally gone and not look back, only forward, acknowledging that I can't be in the world like I used to.

Sorry for rambling, just been extra down lately.

Your post hit me so hard. I really feel for you. I am in a very similar situation...I have accepted things but at the same time I keep hoping it'll get better. I know better... I have grieved my old self, but there's still so much more to come to terms with. "New me" isn't what I am supposed to be but it's what I am. I am about two years out from my accident.
I also think that a funeral for yourself sounds pretty awful. I haven't done it yet, but I was going to get a tattoo of a brain with a halo to signify the loss but also the healing.
Hang in there. Easier said than done, I know...I hope you feel better and find peace.

This has got to be the most depressing thing I have ever read.

Come on folks, buck up! The brain is an amazing organ capable of much more than we can understand. I doubt that the timelines on these things are fixed. I have realized that counting months is probably one of the most counterproductive things you can do. After all, the brain does not think this way. Time is a human concept of consciousness. Let the months roll by. Who cares? People get better from these things after 3, 4 years. It's not fixed.


If I can stay Optimistic living in a basement with sunglasses and earplugs on grieving the loss of my brother, so can you! I haven't been in the sun in over 10 months. Perception is reality. We need to do better with positivity. I understand it's hard but be thankful for what you do have.