Possible to Return to 100%
 

I just read the TBI guide (*link attempt edited*).

The author says it is impossible to get back to 100% but we just have to cope with what has become of us (whether it is 99% or 80%).

The prospect of permanent damage is very disturbing to me.

Are there any cases where a full recovery has been measured and quantified (e.g. IQ scores before concussion and after recovery)?

What are your thoughts?

Hi chgs,

I believe I have read a comment from a neurologist in a medical magazine in which he stated those who have suffered a mild concussion and have a quick resolution in their symptoms can recover 100%.

I was told in Neuro rehab that more complicated brain injuries don't recover to 100%, but a great amount is possible to recover. As you wrote " whether is is 99% or 80%", these numbers are still very doable, as long as you learn workarounds.

I only know of lightrail's recovery here on this site, where he received Neuropsychological testing twice, and demonstrated improvements after a pretty big injury. When was your injury, and what symptoms are you experiencing?
Take care, M-i-m

I was talking to a doctor yesterday at my neurophych she said that in the first year you have the greatest chance of recovery.. normally what is left after the first year you are stuck with ALTHOUGH there are studies that will show some very slow progress up until the 2nd year..

A quote from something I read at BrainFacts.org.

Myth- Brain Damage is always permanent.

After more serious brain injury, such as stroke, research indicates that — especially with the help of therapy — the brain may be capable of developing new connections and “reroute” function through healthy areas.
BrainFacts.org

The literature that I have read indicates that even mild TBI causes lasting loss of neurons in the brain.

My concussion was just over a week ago and resulted in unilateral pain, nausea and mild brain fog. Not as bad as many others, but still very troubling.

I believe symptoms are both functional and structural. Unfortunately, structural damage to the brain seems to be permanent. If someone could show any evidence to the contrary, it would be very helpful to us.

Why is it that some people recover so well and others don't? Is it down to genetics or are there environmental factors that we can take advantage of to help recovery?

Yes, I agree, but doesn't this imply that the damaged neurons are lost already, and the brain is just attempting to compensate by using the remaining healthy areas?

This is my biggest fear, and I hope someone can show evidence to the contrary. I am hoping for evidence of neurogenesis after MTBI, not neuroplasticity.

The brain never recovers to 100%. It may recovered to an appearance of 100% but it will be less tolerant to stress. When under stress, the less than 100% recovery may be evident.

You are far too early in your recovery to be worried about how much you will recover. You may recover to 99%. Nobody can predict how much you will recover.

What specifically are you afraid of ? Plenty of people live full lives with residual symptoms from a brain injury.

Yes, what is lost does not heal. Science refers to the process as Neuroplasticity (or brain plasticity).

My brain scan shows evidence of a prior injury to the brain. I interpret that to mean brain damage. However, the good news is that when you excercise your brain it responds by adapting. At least, that is how I understand it.

Another quote:
Brain plasticity is a common term used by neuroscientists, referring to the brain's ability to change at any age – for better or worse.

brainHQ from Posit Science
http://www.brainhq.com/brain-resourc...ain-plasticity

I interpret the words 'better or worse' to mean, 'use it or lose it'. Your brain can and will adapt if you give it the chance.
Jamie

this lady's blog give hope for those who's injuries don't resolve in 6/12 months
http://www.fightingpcs.com/about/

took her 5 years, but she's back to being a triathlete.

Underwater, this quote jumps out at me:
My advice to anyone going through this: never give up. Find and focus on little successes each day. Eventually they may add up and the good days will start to outweigh the bad.
Emphasis mine.
Jamie

most people are afraid of having remnants of pcs/tbi for good because the remnants stink!! that being said, you guys with fresh concussions are very likely to get so much better that this will seem like a bad dream.

I had concussion at 15 from football. landed on a rock. Blacked out. In a few months the symptoms were gone and i sure as heck FELT 100 percent better for the next 25 years until an ABI affected me badly...just be a little extra careful in the future once you're better

I agree with many here that the idea of the brain not being able to fully recover is upsetting, and seeing posts on this board, many from you Mark, about how once concussed, always concussed, and that stress will likely bring out symptoms even if they go away, has caused a lot of distress for me. I loved who I was before the injury, as I'm sure everyone here also did, and the thought that that person is gone forever is profoundly upsetting.

So, I'm wondering (and I don't mean to sound accusatory here, I'm not trying to be!) how you (or the field in general) know this? That is, what is the evidence that a single, mild concussion leaves permanent damage that can always rear it's ugly head if we stress our brains? I understand that if there is structural damage, this likely will always be there, but whether or not that damage results in a permanent functional deficit (or propensity for such a deficit with stress) seems harder to demonstrate definitively.

Are there studies that have demonstrated this? Or is this just the consensus of the field, or your personal experience having been an elder on the board for a while and being very knowledgable about TBI in general?

hey...you didn't read my personal study about being completely fine after brutal head on rock concussion during football :) It happened at 15 and after a while..some months or a little longer, the symptoms were gone and didn't affect me at all like i said. brutal acquired injury 25 years later had nothing to do with this concussion. hang in there kid.

There was a study done back in the 1970's that compared college students who had never had a concussion to those who had a history of concussion. When in normal, non-stressed situations, they performed the same. When put under physiological stress, those with a history of concussion had a noticeable decline in performance. Those without a concussion history performed the same.

When I read this, it put my life into perspective. I have had many times when I struggled during stress situations. I would freeze up during the stress of a test but once the pressure was gone, I could recite the test and the correct answers.

When I live a stressful life with work and such, I struggled more. When I made changes to reduce the complexity of my life, I struggled much less.

Studies have shown that the stress of multi-tasking is damaging to the healthy brain. Those of us with a concussion history need to be even more focused at reducing the stress of multi-tasking and such.

This does not mean our lives are over. Stress is a killer for even healthy people. High blood pressure, anxiety issues, depression, and the related diseases are all related to stress.

For some of us, we need to change behaviors to avoid situations where we may have an unexpected outburst.

I have a question for you guys. What behaviors and activities do you think you will lose out on due to your concussion ?

If you tore up a knee, you would likely have lifelong limitations. Many do and get on with their lives without a problem.

My main fear with this whole concussion is that I've lost who I once was. I used to be extremely physically active as a distance runner, and mentally active as a grad student, and was pretty much always happy or content, and rarely anxious. Now, I can't exercise like I used to, and am afraid that I'll never be able to return to my active lifestyle, which was a large part of how I defined myself. I'm also afraid that I won't be able to return to my PhD program, as I can't read for long periods of time (currently 10 minutes) without exacerbating symptoms.

Most of all, I'm afraid that I won't return to my normal, happy-go-lucky self. If I blew out a knee and couldn't run anymore, I'd at least feel like it was me who would have to deal with the consequences of that. But I haven't felt like me in 6 months, and the prospect of never feeling like me again is scary and sad. It's hard to explain exactly why I don't feel like myself. I'm sure much of it is simply that I'm not doing what I used to be doing all the time, and so I'm anxious and depressed and just don't feel right. But it seems deeper than that, like something about me has fundamentally changed.

All the specialists I've seen assure me that I have a high chance for full recovery, but when I hear you say that stress may always hold me back, I'm afraid that for the rest of my life I'll have to avoid the stress of running 100 miles a week, or reading intensely to study, or staying up late to write up a paper, or spending a month in Hawaiian forests collecting crickets (my current work, haha), or simply think deeply and clearly about an experiment or something like that. I'm afraid I'll have to live my life without this cloud hanging over me all the time, I don't want to always have to think about how every little thing I'm doing might affect the long-term health of my brain.

I also realize that I'm incredibly lucky that things aren't worse, and I don't have to deal with the hardship that many on this board deal with every day (short-term memory issues for instance), but those are the fears I'm dealing with right now.

I had a concussion at age 15 , horse bolted and ran through a fence then bucked me off and I landed on my head, blacked out for awhile but made it back home.
Partially blacking out while horse was jogging and bouncing all the way home..:rolleyes: I had no cognitive or physical limitations after recovery from the fall.

Perhaps age at injury, or time frame of injuries, has something to do with it?
After reading all of the forums here it seems that everyone has such varying levels of symptoms in nearly every condition, it is hard to lock anything to 100% or not.


Now that I know about upper cervical misalignment, this did happen in my case and probably played a part in my acquiring RSI /TOS 20+ years later along with the repetitive work I was doing at the time.

I am most concerned about the brain fog. Does it every completely recover?

My boss has commented that I seem "out of it" for the past week. My job requires me to synthesize different types of information to come up with predictions on the future. This job is extremely cognitively taxing (or stressful).

For my whole life I have been depending on my ability to think well. Having permanent damage is extremely disturbing I completely empathize with Laupala.

Most importantly, if it is true that the brain does not structurally heal, I want to know the environmental factors that prevent things from getting worse (e.g. lifestyle, nutrition, supplementation, etc.). A lot of the brain damage is not immediate, but occurs throughout the days after the TBI. Research has not gotten to this level of detail yet.

Does anyone here have reliable information (from a credible source) on what can be done to reduce brain damage? (e.g. lifestyle, nutrition, supplementation, dosages, etc.)

Even if they discover that supplement X reduces brain volume loss by 10% after concussion if immediately taken at daily doses of Y, it would be very helpful for future sufferers of concussion.

Whatever science or statistics say, I am determined to keep dreaming and fighting. Let us be the exception that proves wrong the established theories or popular beliefs. Let us erase the boundaries of human capacity. Let us show that there are no limits, but only plateaus.

agreed! experts agree the vast, vast majority fully recover. there might be some scars in my brain but the rest of it recovers & rewires to the point where i don't notice the difference. i believe.

Where did you read that "experts agree, the vast, vast majority fully recover" ? There is a big difference between becoming symptom free and fully recovered. One of the standards often used for recovery is simple. Does the patient stop complaining and asking for care or treatment ?

Studies also show that those athletes who recover to their baseline in Computerized Neurocognitive Testing (ImPACT or CNS Vital Signs) still show signs of brain injury weeks later with other testing systems.

It does not mean we should lose hope. Just that our hope should be realistic and we should be careful about the risks and stresses we take on in our future.

85% recover from all symptoms within 6 weeks or so. But, this does not mean they can tolerate stressors without a return of symptoms.

Mark, can you show me the links to the relevant literature? I have journal access so I can read the full text and look at the methodology and results.

A very recent study actually supports your hypothesis at the 60 day mark!

doi: 10.1249/MSS.0000000000000462

I am still going through that study (a lot of words to read), but I would appreciate any other studies that I can look at.

Journal research is the kind of information I prioritize.

Will there ever be a point (e.g. 1 year's time) where all nuerocognitive testing does not show any anomalies? Has this ever been documented?

Thank you for your help!

functional brain damage
 

I think once you get to the level of PCS-- no matter how long or short you have it, you just do have some brain damage. That said, I feel I have a high level of functional brain damage and it renders me able to work, think, and do much of what I used to do. What's differnt is the tinnitis in one ear, my dislike / mild intolerance of bright screens, and when I am tired, I am very tired. I can assure you this is not who I was.

100 percent should not be your goal. Get back to the highest level you can and learn to live with what comes.

I think that is learning to live with brain damage. I think that is realistic.

Love to you all


poetrymom

http://www.huffingtonpost.com/dr-dav..._b_777163.html

good article about bdnf...never heard about it before this.

that said, it will take leaps in science to fix my broken thalamus, which unfortunately regulates a billion things in the body, but you guys are in early stages of injury and can heal quite a bunch more and move on.

i take the supplements because like mark in Idaho told me...we have to take care of what we can to be around for the new treatments later on.

Welcome to NT. Regarding your question on the measurement, attached are the verbatim comments from the neuropsychologist that conducted my NPA (this following a TBI categorized as severe):

“On examination, the patient demonstrated intact cognition in all domains assessed including learning and memory, attention, processing speed, language skills and executive functions. He has shown an excellent recovery from his severe injury only five months age. From a cognitive standpoint there are no concerns with respect to the patient returning to work full time or returning to driving.”

I personally have spoken to several people who have had concussions and are symptom free. That said most studies suggest that once a person sustains a concussion or other type of TBI, they are more susceptible to long term problems if they suffer additional head injury.

I hope this helps assuage some of your fears.

Some links that may be useful:

http://www.cdc.gov/concussion/feel_better.html

http://www.webmd.com/brain/post-concussion-syndrome

Best to you in your recovery.

good for you!!! even if you're 98 percent instead of 100 who's gonna notice. not even you :) this will be like it was a bad dream that passed for you. that's great

markneil,

I'm confused. What did I post that sounds like a hypothesis ?

Correction, chgs made the comment about the hypothesis. "A very recent study actually supports your hypothesis at the 60 day mark!"

The study about damage showing up after return to baseline did qEEG analysis of the frontal lobe. There are companies working on active monitoring of frontal lobe waveforms to track injuries on the playing field. This same technology is being used to look at recovery and such.

regarding Lightrail's post, I never said that people can not return to a symptom free condition. What I said is that that symptom free person can experience a return of symptoms from stressors.

So, Yes, many will return to a symptom free condition. But, they should not be surprised if stressful living causes a return of symptoms. Getting drunk will often have more effects after a concussion than before.

Mark,

I meant that hypothesis that there is long term physical damage after a concussion.

Right now, the diagnostic tools are not very effective. But in the future, better imaging and techniques will allow the specific identification of the actual physical root causes. This would hopefully pave the way to treatments that actually fix the cause rather than covering the symptoms by evaluating how the treatment actually affects structural brain features, allowing for better evaluation of controlled trials.

As I stated, A research study in the 70's shows that there is residual damage after the concussion appears to have resolved. This is not a hypothesis.

Unless there is some miraculous discovery with stem cells or other ways to spur neurogenesis beyond what happens naturally, I doubt there will be any clinical trails of treatment protocols. There are too many variables to organize a cohort of subjects with similar injuries.

Either way, the costs for such treatments will be a major cause for denial by insurance companies.

There are current diagnostic tools that are accurate. They are just not accepted by the medical establishment in many cases. They do not change the treatment options in most cases.

They already can test different protocols with live in vitro brain tissues. I've seen these tests. They are very interesting but I have not seen anything promising. They can watch the axons and dendrites make connections under different conditions. It did not appear they could influence these processes.

Since research is funded by either a drug company or the government, there must be a large population to serve to justify the costs.

I'd say that that 70s study supports the hypothesis that there is residual damage after the symptoms appear to have resolved, but I think it's a stretch to say that a single study done in the 70s moves the notion from hypothesis to fact. Do you happen to have the title or reference for this study? I'd be interested in reading it.

The lead in the study was Dr Dorothy Gronwall in New Zealand. She repeated some of the study in the 90's. A past NT member was one of her patients shortly before Dr Gronwall's passing in 2001.

Go ahead and doubt her research. If the power of positive thinking about a 100% recovery helps you do better, then go for it.

I have had many 100% recoveries from concussion symptoms. But, I still had to deal with relapses due to stress and an increased sensitivity to head movements.

It was a very minor head jerk on January 16, 2001 that put me over the edge.

Thanks for the info. I'm not necessarily doubting her study, but when the difficulty I have believing that I'll ever get back to my normal self (even when my providers all think I have a large likelihood of doing so) is attributed largely to the comments on an internet forum of a single person I don't know who seems to know what he's talking about, and those comments are based on personal experience and a single researcher's work (at least as far as I can tell from what's been posted here), I'd like to know what they actually did in the study.

I'm not doubting your knowledge or personal experience, I'd just like to assess the primary source for myself.

Edit: Bummer, I can't seem to be able to access the article through my university online. I did glean from the abstract that they induced stress by simulating low oxygen conditions, and having 10 university students with a concussion history but perceived total recovery do a test, and that they performed significantly worse than those without a concussion history. How much worse I couldn't tell from the abstract.

Dr Dorothy Gronwall-
Amazon has a peek inside one of her books -
http://www.amazon.com/Head-Injury-Ox...der_0192627139

I hurt my head at 15, got tackled onto a rock. Was out of it for a while and a bunch of months later I was ok, It did not affect my life for the next 25 years until a brutal head insult occurred. I might have been 90 percent after that head on the rock injury. I didn't notice. You wont notice either. If your doctors say you will get all better, perhaps they mean any residual damage will be so small as to be utterly negligible, which I think others on this board are trying to tell you.

I know it is hard to be patient but chances are a year from now this board and this injury will be most likely a distant memory. You are very smart. I am too. We tend to have to KNOW what will be, not what might be. You may never know if you are 90 or 100 percent. It likely wont matter. You will be better. Some here would kill for 90% :0 So don't lose sleep over it. Just rest and get better.

Laupala,

I have never said you will not recover from your concussion symptoms, nor did Dr Gronwall's research. What I said is that symptoms may return during times of stress. Her research in to 70's dealt with an 8,000 foot altitude oxygen level. She has done more research since then. I just have not had the funds for her more recent book. I think it is $80.

Her 70's research did not address the other stresses we may face but extensive anecdotal evidence says that many other forms of stress can cause a return of symptoms. Plus, I have read other reports and articles that support this. I do not remember what the studies were like so I have not promoted those studies.

And, my neuro-psychiatrist also told me this. He said that stress causes toxic chemical buildup in the brain that results in a weakened condition with a return of symptoms. These symptoms may be concussion symptoms for those with a concussion history and/or them may be symptoms of depression. He is the one that got me started on the vitamins and supplements regimen.

Regardless, you still have healing to do. You may return to a symptom free condition and only need to be aware of stress issues.

I don't see a reason to get worried or frustrated. As I have said many times, anxiety/stress is one of the biggest things that delays recovery. Taking a positive approach to recovery by reducing stress as much as possible is the best way forward in my opinion.

There is no reason to expect to not recover from the struggles you are having now. Only a small percentage have prolonged struggles.

That is so true. As hard as it is to imagine, when you're struggling with a myriad of symptoms, most of you will recover and get on with your lives. The statistics are on your side.

If, understandably, that seems too cold and abstract, consider this Board. Very few folks are stuck at NT long enough to get past the "member" designation.

As an "elder" and a "senior," respectively, Mark and myself are anomalies on the PCS forum. We are also atypical patients. Mark has endured a number of concussions, starting in childhood. I was involved in a high speed car crash, sustaining an injury that is rarely even survived.

You will do better than us - but I don't hate you for it.:winky:

Thanks for the kind words, the kindness and compassion shown on this board in the face of such hardship is truly astounding and such a powerful resource for everyone going through PCS and TBI.

Mark, I know you nor Dr. Gronwald's research have said I'll never recover, and I hope my post didn't suggest I was calling you out or anything like that. I'm just depressed by the notion that I may have to always think about how some activity or some situation might flare up symptoms, and thus limit my life.

I also know that worrying about this, or being depressed about it, isn't helping me get better. I think that thinking about every little thing I'm doing, and whether it's helpful or harmful to recovery is setting me back too. For instance, I've started volunteer coaching at my old HS cross country team since I'm taking a medical leave of absence and want to do something positive other than listening to audiobooks. I've done it for 2 weeks, 3 days a week, and the practices themselves go fine - I feel a bit more like myself, am happy, and don't seem to feel too bad.

But then I get home, and if I maybe feel a little tired or have a slightly worse headache I start to worry that maybe I shouldn't be coaching, and then I get sad thinking about how I can't do so many of the things I love, and worry that this will be this cloud hanging over me for the rest of my life, directing the things I can and can't do. So that's why I find the notion that even after I recover, stress could cause a relapse, so distressing. I just don't want to have to worry about this for the rest of my life.

Sorry, I didn't mean to hijack the thread!

Your biggest problem is anxiety. Getting caught on an increase in head ache or fatigue is unreasonable. If you get a head ache, take a break. If you get tired, take a break. Think of it as a momentary clue to take a break.

If you are going to take on a busy activity, expect you MAY need to take a break afterward.

Get used to the fact that you may have relapses from time to time. As your life goes on, you will begin to learn how much stress you can tolerate. You may be able to tolerate a high level of stress in certain areas and less stress in other ways.

So, the head ache or tiredness is not saying you should not be coaching. It is saying you need to take a break.

Don't forget the stages of grief, it applies to all life changes not only loss of a loved one. We go through these stages with Illness and injuries..

http://psychcentral.com/lib/the-5-st...d-grief/000617

This is it exactly for me, I feel exactly the same as you do. I had a promising career as a Clinical Psychologist, I was going to apply to start my doctorate this December.
I had 2 accidents, one in December last year in which I'm pretty sure I sustained a concussion, then a minor car accident a month later, after which I started experiencing symptoms.

I returned to work in July for 2 half days and it was just overwhelming and bizarre. I looked over some emails I had written before and some documents I had put together before the accidents and it was like they had been written by someone else.
I can't write to that standard of English anymore or get across complex ideas.

But, like you said, the thing that scares me the most is I feel like a different person. I, too, was very active both mentally and physically. I loved being smart and it was a big part of who I was, gave me a sense of validation, self-esteem and confidence.
I was a very strong, social and independent person and I'm just not anymore.

Now I can't use big words anymore as I'm no longer sure of their correct use and often get them wrong, so to avoid embarrassment I speak a lot more simply.
I don't get jokes, either at all or quickly enough to not look really stupid in social situations (this is leading me to avoid some social situations).

I have no confidence in myself anymore and I have no idea what I can and can't do in terms of my cognitive abilities.
Whenever they are 'tested' by a challenging situation, then I seem to fail pretty quick. I spend most of my days doing light tasks which tax neither my brain nor my body and sometimes I feel 'normal'. I don't feel myself, but I feel like I don't have issues.
However, as soon as I am mentally challenged then this all falls apart and I realise I'm still broken.

I think, like you, most of all, I was happy and a very cheerful person. I don't feel like that anymore. I realised I rarely smile or take much pleasure in doing anything and it's taken me some time to accept that I am depressed.

I'm 7 months in and when I first came on the forum I felt a mixture of relief at finding some answers to questions I had and sadness at the answers themselves. It was hard to read about damage being permanent, but obviously made sense when I thought about it (I studied the brain somewhat, I should have known this!). I'm also awware that it's only some stuff that can be rerouted so to speak, so there are deficits I have that I will always have.

I also felt really down initially at the prospect of never being back to who I was before the accident and I think I've just started the long road of coming to terms with that.

I try not to be negative about it, but instead I feel I'm being realistic. I will never be a Clinical Psychologist now. I may never have a high status/complex job (this was very important to me). I may never improve much beyond my current situation.
BUT, I keep telling myself, like you said, that it could be so much worse and I can still live a very full life.
I keep trying to think of all the things I CAN do and not everything I can't.

I know it feels like a lifetime, but you are too early in your recovery to write yourself off.

You are wise to try and focus on the positives. I try to measure myself by how far I've come SINCE the injury, not how I was before it. I've come a very long way, and I'm still traveling. My initial prognosis was terrible, but I decided to ignore it - and I'm glad I did.