Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 11-01-2017, 04:54 AM #21
SilenceIsSacred SilenceIsSacred is offline
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The brain game series they give you to take home is called brainHQ, which is the only program backed by multiple studies. These games are designed specifically so you are not just getting better at the games. You can see how that would be the case with many of the exercises, as the correct answers are randomly generated.

Sadly, I believe Cognitive FX did not benefit me much either, and in other ways I think I actually became worse, even despite showing a lot of improvement on the scan. I have more trouble reading now and struggle more with anger and self harm. My sensitivity to hemp oil has gone down, and my intolerance to alcohol, pot, sugar, and caffeine has risen again.

I also found it strange that Dr. Fong told me that she couldn't get me visual copies of my functional scans, even though they posted one example on their blog. She also downplayed the possibility of white matter damage because my T1 MRI came back negative, which I found suspicious, firstly because that MRI is not sensitive enough to show anything but widespread DAI, and since DTI is known to be able to detect the abnormalities indicating axonal damage. Given that my Thalamus, Basal Ganglia, and Superior Colliculus were all dormant, you can tell the damage is deep in the brain where the shearing forces are greater, yet she insisted there was no white matter injury.

I would suggest that the neurovascular adaptations they detect have emerged for a reason, and that if you attempt to shift the brain toward its previous configuration you may actually be trying to reemploy circuitry which is dysfunctional, leading to more dysfunction overall. The shift in blood flow may be the brain trying to maximize its own remaining assets. There is another review on Google Reviews where another person claimed the treatment made his symptoms worse as well, and was the only one that did out of everything he had tried.

I'd also speculate that, given that all brain injuries are different, some people may have most of their problems in relation to abnormal blood flow in the brain, but may not have white matter damage or other problems, which is why they respond well to this therapy. Most I think are not so lucky.

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Old 11-01-2017, 11:35 AM #22
Mark in Idaho Mark in Idaho is offline
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BrainHQ and the many others have been studied extensively. They can awaken dormant skills but do little to effect healing based improvements. Those studies showed the goal should be improving processing/response speed and enhancing observational skills as those improvements effect more global improvements. The other skills are focal improvements and are task oriented.

I would love to see a study that shows brain training works to retrain injured brains beyond the wake up or retrain dormant or lazy skills concept.
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Old 11-01-2017, 12:01 PM #23
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JBuckl - thanks for the LLLT link. I have done lots of research already, and while I think it probably only has a ~10% chance of working, I'm happy to try it as there seems to be little risk. Eventually, if you keep trying 10% efficacious therapies, probability states that you are likely to hit on something that does work. The biggest questions I have about LLLT is getting enough penetration into the brain, hence my decision to order this powerful light from red light man. I'm also a little concerned that one study showed a dependence on the infrared light, such that the patients regressed after stopping applications. Interesting and troubling.

M in Idaho - when I refer to effects of neurogenesis occuring at 6 weeks I am including the generation of new synapses between existing neurons. You don't have to form completely new neurons to learn new things obviously, otherwise we'd still likely be in the trees with the chimps.

cognitive fx's fMRI's are employed using their proprietary NCI (a series of mental exercises while in the MRI), in conjunction with their own interpretation. This is the biggest unknown about their objective data, because you just have to trust that they aren't making any unfounded leaps in their understanding of the data. I do believe that there are some who have profound recoveries because of their work at cognitive fx, but I think that this is less common and happens more often in the younger and closer to date of injury patients.

I believe that brain exercises can be very effective at not only improving performance in the particular exercise, but also more globally applicable to other cognitive functions. The key is in accurate identification and targeting of specific deficits in cognitive performance. Stroke rehab is often very efficacious if the patients applies himself to the exercises, because the area of injury is localized, easily identified, and easily targeted with exercises. TBI is much more difficult as the injury seems to be spread out and deficits ambiguous at best. So the questions we are stuck with are what are my exact deficits, and how do I exercise them to get better? Finally, I think that many of us refractory cases have brain-stem related damage, which causes more globalized symptoms without clear-cut deficits and regenerates much slower if at all.

SilenceisSacred - I'm sorry that your experience at cog FX was detrimental, that must be very hard for you. I feel like I got some good out of it, but not necessarily in the form of symptom relief. I feel bad about spending so much of our family resources on this venture, that wasn't the outcome we were hoping for, but I can't imagine coming out of it feeling worse. Keep working on getting better, don't lose hope. Most people do recover significantly, it just takes a lot of time and persistence.
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Old 11-01-2017, 04:27 PM #24
SilenceIsSacred SilenceIsSacred is offline
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Quote:
Originally Posted by Mark in Idaho View Post
BrainHQ and the many others have been studied extensively. They can awaken dormant skills but do little to effect healing based improvements. Those studies showed the goal should be improving processing/response speed and enhancing observational skills as those improvements effect more global improvements. The other skills are focal improvements and are task oriented.

I would love to see a study that shows brain training works to retrain injured brains beyond the wake up or retrain dormant or lazy skills concept.
The things you listed are exactly what many of the exercises target, observational skills and response speed specifically, as well as memory. Because the correct answers in the memory tasks are randomly generated, that ought to be a legitimate test.

Also, I do not want to say I had 0 improvement, but that it was modest if any. When I went there I could tell for sure just how bad my memory was, and if I went by the brainHQ scores my memory has improved significantly. But in daily functioning I still have lots of problems. Mark is right in that their lack of neuropsych testing makes it hard to tell for certain.

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Old 11-01-2017, 06:38 PM #25
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When we do memory exercises, there are two different ways that memory can improve. Physiological improvement where the neurons, axons and dendrites improve function would be considered a healing caused. The more common improvement is in learning better observation skills and focus skills so the concept needing memorization is sensed without distraction.

Prior to injury, memory skills often were at a high function because the brain could sort through all the distractions and find the concept needing memorization without any extra effort needed. With injury, we need to make a conscious effort to ignore the distractions and focus on the concepts at hand.

That is what brain training usually does. Because people do it routinely and often with a focus to do the best they can, they utilize more focus and learn to ignore distractions.

A prime example of this is in the educational setting. A student who could easily remember the subject matter and get high test scores suddenly has a mTBI that changes these issues. He now needs to learn a different way to study because memorizing no longer comes easy. He has not lost intelligence to understand the concepts. he has just lost the ability to be a lazy or passive learner and now needs to focus and be an active learner. I went though this exact scenario a few times from 5 grade through college. Unfortunately, there was no understanding of these issues I just just had to fight my way through.

I've had communications with BrainHQ/Posit Science since they were first getting started. They admit they are a skills development program, not a brain repair program. Lumosity and FitBrains have the same understanding.

Brain training is still good even though it does not affect healing/repair because the skills learned enable us to improve in many areas.

We also need to understand there is a difference between stroke recovery where an area is not damaged but rather forced into a dormant state due to a lack of blood supply and mTBI were the cells and fibers are damaged. Repetition will awaken dormant cells and nerve channels but it will not cause a damaged cell or fiber to heal. Getting blood to that area will be beneficial.

Look up Victoria Arlen and read about how long it took to wake up dormant cells. Six years of hours each day trying to push nerve signals through the nerve pathways in some areas. The cells were there and minimally alive. Those nerve cells just did not know how they were supposed to function.

If CogFX has such a good protocol, they would be replicating it in clinics all over the country. Are they afraid that bringing new people into the proprietary data will expose the weaknesses of their science? Are they afraid of peer review?
Dr Daniel Amen has replicated his protocol.
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Old 11-02-2017, 05:41 PM #26
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Default Check this out too, Shanebox

The Benefits of Infrared, Low Level Laser Therapy (LLLT) and Photobiomodulation - Selfhacked

I bought one of those cheap CCTV lights. Used it 3 times recently. Not a cure all, but I think it's doing something.
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Old 11-03-2017, 02:49 PM #27
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Mark in Idaho: I appreciate all the wisdom and time that you bring to this board and to those in need. There is so much ambiguity in this field of post concussion syndrome and potential treatments. That said, let's make sure we acknowledge when we are stipulating about something, verses proclaiming to have the answers when we don't.

btw - strokes involve the death of nerve cells, as blood supply has been cut off due to an event and they starve. Now there are some strokes, called transient ischemic attacks in which the nerves recover as blood flow quickly returns, but with these strokes symptoms fully resolve in 24 hours or less. CVA (long term) stroke patients often recover by shunting the neural workload to other healthy areas of the brain to take over these deficit areas. They are not able to reawaken the dead tissue. Stroke is a interesting pathology to compare PCS against, as both involve the damage/destruction of nerve tissue, yet only one tends to be responsive to rehabilitation. Why? I stipulated a potential response to that in my earlier post.

"Arlen, at the age of eleven,[3] developed two rare conditions known as transverse myelitis and acute disseminated encephalomyelitis. "
So she had a profound inflammatory event of the brain and muscle tissue, also leading to peripheral nerve damage. This is comparable to PCS recovery how? lets not use this single separate case as justification that PCS should behave similarly. They are likely two very different pathologies entirely.

JBuckl - be sure when you purchase a device that it indicates a high power density. Red light man seems to have a good guide for dosing. "Light therapy studies tend to use power densities of ~10mW/cm² up to a max ~200mW/cm²."
search: red light man complete-guide-light-therapy-dosing
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Old 11-03-2017, 10:17 PM #28
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There is far more to a stroke, either aneurysm or blood clot, than just the focal dead cells. Recovery involves restoring proper blood flow to any damaged but not dead cells but also restoring signaling to the systems those dead and damaged cells normally communicate with. The brain can sometimes connect around those dead cells but it takes thousands of repetitions to strengthen those new routes. Plus, those systems that were used to communicating with the dead cells will become dormant until they have functioning neural cells and systems to restart communication with.

At least that is how it has been explained to me by the experts who address my brain injury support group at a neurorehab hospital. We have many who have suffered severe TBO and stroke and spent weeks in a coma and needed months and even a year or more of concentrated therapy to wake up those nerves that lost connections.

This fits with the neuroscience specialists who report on the nitty gritty of neuroplasticity and not the pipe dreams of those trying to sell treatments, supplements, or get grants. It also fits with what my neurologist brainiac told me.

But then, that is just what was told to me or that I read in the research articles. When an organization selling a product or therapy makes a claim and refers to a research study, it is not uncommon for the study to be grossly overstated.

LLLT, Low Level Light Therapy, makes amazing claims but the research they rely on only shows a 5 to maybe 20% better improvement over the control improvement. If the untreated injury recovers 20% and the LLLT treated injury recovers 22%, if you show a graph that only shows the top 5%, it looks like the 22% is 66% better than the 20%. That is marketing, not science.
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Old 12-12-2017, 03:22 PM #29
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Default Cognitive FX Concussion Treatment Review

First off I want to thank all the users on the NeuroTalk forum for their earnest effort in helping find treatments for people suffering with concussion symptoms or post concussion symptoms. (ShaneBox and Mark in Idaho specifically)

I suffered from a concussion in January of 2017 it happened as I was cleaning out my garage a box of camping supplies fell on my head. I vaguely remember being hit by it. After the initial accident I visited an urgent care to see what was wrong they diagnosed me with a concussion. At the urgent care the doctor prescribed rest and told me the symptoms should resolved in a two weeks. Unfortunately this was not the case after three weeks I still was suffering from the following symptoms: Brian Fog, Irritability, Poor Sleep, Inability to focus. I scheduled an appointment with a Neurologist he did an electrical study and reconfirmed the diagnosis of concussion. He said I may need to start taking medication if the symptoms didn't resolve to my satisfaction. A month later the symptoms were still present and my ability to work was starting to really suffer. Prior to the injury I would regularly come home and go for a bike ride or run or do something. After the injury I would be exhausted at work by 1 and unable to do anything other than sit when I got home. I knew I had a major problem at this point because it had be almost three months and my symptoms had not resolved.

I live in California near some really high quality research universities and hospitals. I went to both Stanford and UCSF concussion program. Both had me meet first with a sports medicine doctor who asked me a bunch of questions about my symptoms and injury then handed me off to a P.A. to handle the rest of my care. At Stanford they scheduled me with sessions with a cognitive therapist where I went and did therapy twice a week for a month. This didn't really move the needle for me in terms of getting better so I schedule an appointment with UCSF. I meet with I believe a neurophysologist their and did a bunch of paper test to diagnosis what I was going through. Then it was off to see another sports medicine doctor, P.T. and psychologist. This is now July almost six months past my injury date and I had not improved. I felt like the doctors I was seeing started thinking of me as a mental case. But I knew what I was feeling and how it impacted my work I had never felt like that before.

I was lucky enough to work at a company that had a reduced work schedule for new mothers and fathers. I was neither of these but because of my injury they let me participate. I began to worry that if I didn't get better I wasn't going to be able to work anymore because of my inability to focus and accomplish tasks that would have been second nature to me. I began to share my story with my co-workers and one of them told me that there cousin had a similar problem to me that they had been in a ski accident and weren't able to return to school. He said they went to a clinic in Provo and after spending a year unable to go to school was able to enroll the following semester and was doing well. My initial thoughts were where is Provo and why are they able to fix people when world class research hospitals can't. I learned that the clinic was called CognitiveFX.

I spent a decent amount of time researching their site (much longer than most people I imagine because reading was a chore and so was comprehension). It appeared to me from reading their information that their secret sauce was the functional MRI scan. I learned that this measures the brain oxygen usage level to see where the brain is located. They have a database of normalized brain scan that they compare your scan to. From that scan they diagnosis and prescribe a treatment protocol that last for one week. It appears that they main researchers behind this approach were Dr. Mark Allen and Dr. Alina Fong I read a good amount of the summaries of their published work they seem legit (not some chiro quacks). Dr. Allen had a PHD from John Hopkins (very well regarded medical school) Dr. Fong(BYU - mormon religious school)

After getting comfortable with their technique I called and scheduled a consult. Dr. Fong spent about 20 minutes asking me about my injury and answering questions about the technique. One of the first questions I had thanks to this forum was why if the scan is so powerful is it not in more places. She said that it was licensed to the Department of Defense hospitals and they were using it for MTBI research and treatment purposes for soldiers. After the consult I scheduled just a scan at their facility in Utah. I flew out two weeks later and got my scan.

What is the scan like? Well you go into an MRI machine but they just put your head inside it. Then you begin the test I think there were 6-7 tests. They are supposed to approximate different types of cognitive functions that you preform on a daily basis(executive reasoning, pathfinding, picture recongition, etc) you provide your answers with a small keypad. The scan took about 1 hour in the magnet. Then I left an came back in the afternoon for a report on how my scan turned out. The scan revealed that my brain had some serious deviations from the normal brain scans that they use for their base lines. I was 3 standard deviations outside of normal in 17 of the 60 regions that they look at. Interestingly enough I was both hyper and hypo activated. Dr. Fong stated that the areas of my brain that were not functioning well were hypo activated and that the hyper activation was the brain trying to compensate for the disregulation in the brain. The hyper activation was probably why I was reporting the brain fog, fatigue and poor sleep. She recommended the week long EPIC treatment I went home and told her I would think about it.

At this point it had almost been 10 months since my injury I had visiting three hospital programs two of them at tier one research universities I was getting desperate for help. Two weeks after my scan I called back and scheduled treatment. The EPIC treatment at CogntiveFX cost $8,000 this included the price of the previous scan and the follow up scan.

Their were 8 patients at the clinic the week that I attended. I finished 4 days ago and I am feeling great it truly restored me to the person that I was before the accident. I will write an in depth review of the treatment week but I will say of the 8 people 7 told me on friday that they were feeling much better and had seen significant improvements. One patient didn't feel better or worse.

TO BE CONTINUED. (Must return to work)
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Old 12-12-2017, 05:26 PM #30
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Hi DavidUser

Welcome to NeuroTalk .

The TBI/PCS forum is very active so I am sure that you will get lots of helpful suggestions from other members.

Best wishes.
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