[MVTBI]

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!

[davOD]

Originally Posted by MVTBI

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...

[Mark in Idaho]

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.

[MVTBI]

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

[packersrule]

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.

[RidingRollerCoaster]

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.

[clandestine]

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

[Laupala]

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.

[ecityturnip]

Originally Posted by Laupala

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.

[DannyT]

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.