cognitive FX concussion clinic in Utah
 

Does anyone know about this concussion clinic called Cognitive FX in Provo UT? It seems that they are affiliated with a neurological imaging company called Notus. They have an extensive website describing their services.

Here is my understanding of what they do: They use functional MRI screening coupled with neuropsychological testing to compare patients against a normative population to look for abnormalities in hypo/hyperactivation of certain regions of the brain caused by the concussion. They then employ a series of intense brain exercises to help re-establish pre-traumatic NVC (neurovascular coupling). Their theory is that post concussive symptoms are brought about when the vascular(blood) supply to neurological regions of the brain gets disrupted. Their treatment aims to re-train the vascular system to respond appropriately to neuronal demand through a series of intense brain exercises known to activate those regions respectively.

How these exercises achieve this seem a bit of stretch to me, though they are boasting incredible results in symptomatic improvement across most of their patients. I have a friend who went there. He says he was skeptical at first, but it has totally changed his life as he is now symptom free. All testimonials seem to point to a miraculous recovery at the end of the week of treatment. They have scientific papers published in Behavioral Neurology showing good results for their diagnostic methods and they currently have a paper submitted regarding their treatment results, which is awaiting review I am told. This treatment is expensive and not covered by insurance (roughly $8-10K)

Is this place legit? Are treatment outcomes really this good? looking for some more independent information/views about this clinic.

thanks,
shanebox

I have had concussion symptoms for 2 years. Headache, fatigue, exercise intolerance, and sleep problems

shanebox,

Welcome to NeuroTalk.

The problem with CognitiveFX is their methodology for measuring results. They use a very subjective patient response questionaire.

Notus is the parent company of Cogn FX.

Their claim to treat these issues in just one week of intensive imaging and therapy flies in the face of the medical facts about the rate of vascular and other changes in the brain.

If you have $8,000 to $10,000 that you can afford to burn, it may be worth a try. The cost of operating an MRI machine and the treatment that can be done in a week's time does not come close to justifying the price.

We've had at least one on NT try CFX with no benefit.

What symptoms are you still struggling with ?
What have you done and tried to help resolve these symptoms ?

Please help us and avoid bold formatting. It is like a strobe light as one tries to read the surrounding text and it come across as a promotional post.

Hi Mark

I am a frequent visitor of NT, yet this was my first post. I have appreciated your input on many subjects, just as I do here to my query.

Please don't mistake my post for a promotion of this company (thanks for the tip about bold text). I have both some hope and also some skepticism in their offering, hence my desire to reach out to others to get some more info.

I'm two years into my PCS, still struggling with chronic headaches, sleep disturbances, exercise intolerance, and fatigue. I also have a 14 month old who has often made the recovery more challenging at times. I have tried many avenues including traditional medicine, vitamins, cbd oil, exercise, and many eastern medical approaches. you name it, I feel like I've tried it.

I am a physician assistant working in medical research (mostly cardiovascular). I do share your incredulity in the claims they make about vascular re-establishment in the short time frame of treatment. They do however perform a post functional MRI, and claim consistent, objective evidence of re-establishing NVC consistent with normative data, which if true is very promising. They also re-image some patients about a year after treatment, showing stability in their treatment and continued improvement in symptoms with adherence to home exercises they give you to continue the treatment. Remember, they don't need to create vascular changes per se, they just need to re-establish the existing physiological NV relationship that was in existence before injury (get the train back on its tracks). so plausible, I suppose, but probable, not sure.

I have not seen their symptom questionnaire, but am curious as to how you propose to measure improvement in symptoms, as they are by nature subjective. The questionnaire is also only half of the measurement of results. the other being the findings on the post functional MRI, which are objective.

I don't doubt their functional MRI capabilities of diagnosing abnormal activation patterns. They have published multiple papers to back this up. I do wonder about the efficacy in their treatment and if it really is reducing symptom burden like they claim it to. I have a friend who corroborates this. I am curious about the one NT participant who claimed no benefit as this is not in alignment with what they told me over the phone. Their claims of improvement have been more all-encompassing, with the exception of some malingerers seeking legal action.

thanks again for your input, any additional info you can share will be helpful in my decision to fork over this kind of money or not. An average symptom reduction of 65% would be hard to turn down for $8K.

There have been many studies that show vascular improvement without commensurate improvements in function. HBOT shows vascular (capillary) improvement. The correlation with functional improvements is not direct. If they did some Neuro Psych Assessment testing instead of the subjective questionnaire, their success rate claims would be more justified.

Have you actually read their many papers ? They are about fMRI but little about post concussion treatments. At least, I did not find any substantial reporting. They appear to have a marketing person working hard to present their protocol as greater than sliced bread. They have trademarked fNCI since I last browsed their web site. I get very suspect when I see so much 'sell the sizzle' promo.

If they have tied into Tom Brady, why have they not tied into Mass General and their concussion clinic or any of the premier concussion research labs ?

I would be overjoyed to see it proved beneficial by an outside assessment. Some real FDA style clinical data would be great. They make claims that push the limits of FDA standards. Why ?

Their protocol is so one dimensional. I am curious as to how it overcomes the neurofibrillary tangle dysfunction that research shows to be a strong contributor to symptoms. UPMC has charted 80% of concussion symptoms tied to upper neck injuries. I wonder what the neck therapy contributes to the recovery ? Blood flow can be seriously impacted by neck inflammation.

So, they leave lots of questions while making such extreme claims.

As I said, I'm not saying it does not work. If you can afford the financial risk.....? I'd love to see you receive benefit from it.

thats true Mark,
Blood flow isn't directly correlated to functional improvements, though if you are consistently redirecting blow flow away from activity associated with consistent concussion biomarkers and towards normative data then I would contend to say that you are headed in the right direction. If these changes are correlated with improvement in symptoms, then I'd say you really had something to try.

I am sold, at least to give it a shot in 2 months time from now. Its still hard to believe, but its also hard to pass up something that is getting amazing results. My friend who had a pretty bad case of PCS for a year, was 95% recovered in the 5 days there, and in the 6 months since then he has recovered the final 5% by doing his home exercises. I was blown away from his story.

I found the NT feed you were referring to under 'mental bootcamp' I believe. The NT participant didn't claim to get much results, but he did say that at least 2 people in his group did have major improvements. The other three participants in his group he was not able to talk to, so he can't say one way or the other with them. So in my loose independent polling that is three people with major changes and one with little to none. Its not a great sampling, but it gives a bit more credence to their claims at least.

btw - traditional neuropsychological testing is not as robust as you claim it to be. There are many false negatives. I am one of them. I actually tested above my education level when I was 6 months into my PCS and having lots of problems with symptoms. The functional MRI that they employ incorporates some neuropsychological testing into it while the subject is being scanned, for whatever thats worth... That is the basis of their three research papers and the foundation of their program. They have a paper on their website that is all about their treatment results. They told me they are currently deciding between journals to send it to for publishing, whatever that means. I am choosing to believe them at this point.

Anyhow, I'll try to write back in and share my experience and results. Thanks again for your input.

I've had 3 1/2 NeuroPsych Assessments over a 12 year period. They all had very similar results. The challenge the psych docs had was correlating my memory (Wechsler Memory ) and processing speed dysfunctions with my high WAIS-II scales. The test battery chosen can make a difference.

Can you post the names of the studies they have published ?
I've looked at the abstracts by Notus and did not see anything that appears to relate to the three research papers you have mentioned. The EPIC outcomes page of graphs and charts is without explanation and hard to read the fine text.

If you saw all of the similar claims made by neuro-therapy clinics that have never let their proprietary protocols to be used outside their clinic, you would understand my skepticism. In the years since they discovered these protocols, one would expect them to be promoting their protocol to as many as possible.

I'll be eager to hear your report.

if you search pub med for Alina Fong under author you will find her three papers. Dr. Allen is the other neuropsych that has published many papers using fmri. I think these papers are free for viewing.

on cognitive's website you can request their latest paper under research/technical reports:
developing the standard of care for post concussion treatment: etc.

as you said, it mentions little about what the treatments are, but I can tell you generally. They consist of very specific cognitive, vestibular/occular and visual exercises that are known to target certain areas in the brain. They employ these exercises aggressively and alternating with periods of rest to 're-awaken' the areas of the brain that are poorly activating as shown on fmri. These exercises are a result of about a decades worth of trial and error research. They also incorporate neuromuscular therapy and psych therapy when needed.

Their treatment clinic used to take several months, but as they got better at targeting their desired areas, they found that they needed less time to achieve maximum benefit from the techniques, till they arrived at their current week long plan.

Any Info
 

I am considering going to CognitiveFX for treatment. Wondering if anyone has been and would be willing to share. Feel free to PM me.

Pete in Wi,

Welcome to NeuroTalk.

We have had a few try CogFX with minimal benefits. CogFX uses fMRI images to claim improvements and subjective surveys from patients to claim patient success. There has been no independent assessment of the benefits of CogFX.

It may help some in the long term. The data is just not available. The CogFX data is just too biased and hidden in methodology.

The claims to great improvements in just a week's time appears to be a stretch. Many have used cognitive, visual and vestibular therapy from other sources and not achieved such quick results.

The fMRI indicated improvements in blood flow are no better than the improvements in capillary blood flow from HBOT. But, neither protocol has connected that improved blood flow to functional improvements in a true double blind or other sound method study.

If you have the $7000 to $10,000 to burn without negatively risking other financial obligations, it might be worth a try. We would love to hear some good feedback. Some have spent similar money at the Carrick Institute that uses some of the same therapies but without the fMRI.

How are you doing ? What symptoms are you hoping to get treatment for ?

What diagnostics have you had ?
What treatments/therapies have you tried ?

Son treated at CognitiveFX August 2017
 

My son was treated by CognitiveFX just a few weeks ago. His injury was related to chronic carbon monoxide poisoning over a period of three years. Our family of six also have been suffering its negative effects (headache, brain fog, mental exhaustion, difficulty with reading, memory problems, light sensitivity, tinnitus, anxiety, depression).

The results for my son have been just what I was hoping for. He is just starting a new semester at BYU majoring in Microbiology with a minor in Chemistry with a pretty intense workload. I believe time will tell concerning the full effects of his treatment. I'm hopeful.

I've been pleased enough with the results to schedule son #2 for treatment. His condition is compounded by the fact that he suffered multiple concussions while in high school. As we complete his treatment, I'll return back to report his results.

As a sidenote, I am a critical care RN. For the last 10 years I have searched out for studies that could possible help my family deal with the negative effects of CO poisoning. We have been vigilant in following healthy practices of good nutrition, sleep, routine exercise, therapy, and medications. While they have helped us feel well, they haven't alleviated our neurological symptoms.

Shanebox - did you go to Utah?
 

Just wondering if you ended up going, and what the results were.

Thank you
 

Mark in Idaho & Jennifer RN,

Thank you for the responses. I ended up deciding not to pursue CognitiveFx (at least for now). Mostly because I have done many of the therapies they discuss.

I have ongoing mTBI/post-concussion syndrome symptoms. Done a number of diagnostic testing including vestibular/Balance testing, VIPE, MRI's, CT, VEP, Saccades, VOR, SPECT, PSG/Sleep, PTSD, Color Field, Vision Field, EEG, video EEG, neuro-psych eval.

Treatments/Therapies done: vestibular rehab therapy, vision therapy, light therapy, neuro therapy, speech therapy, medications, acupuncture, CBT, prism & tinted eye glasses, nutritional supplements, dietary modifications.

Still hoping for a breakthrough.

Pete, You have done some diagnostics I have never heard of. VIPE, VOR, Saccades,,, Can you explain what these are any what the diagnostics have found.

How did you respond to the various therapies ?

What ongoing symptoms are you still struggling with ?

How did you suffer your concussion ? How much improvement have you had ?

VIPE = Visual Information Processing Exam. I believe it was described as a neuo-behaviorial exam but focused on how the brain processes visual information. It had some similarities to the neuro-psych exam. I actually took this long before the neuro-psych. These tests were administered by a Neuro-Optomitrist. Saccades test was a phase plot of looking left, the right. Measured position & velocity. VOR I used this term loosely for OPK testing done with the VNG which looked at color strip testing. The VNG was administered by a functional neurologist. Ongoing symptoms are those I described above.

It sounds like you just had a thorough behavioral or neuro optometrist assessment (There is a large overlap between the two) and a Carrick chiro exam.

You did not mention above any of your symptoms beyond "I have ongoing mTBI/post-concussion syndrome symptoms." The "mTBI/PCS symptoms" is wide-ranging.

"VOR I used this term loosely for OPK testing done with the VNG which looked at color strip testing." Lost me again. VNG is a Carrick diagnostic but what are the other 2? Did you do the VNG in the chair?

How have you responded to any therapies?

Mark, Sorry .. for some reason I thought I mentioned specific symptoms. There are quite a few but most are typical PCS items ... light & sound sensitivity, excessive blinking, double vision, imbalance/unsteady, vertigo, nausea clumsiness, objects jumping, challenges reading, tonic pupils, clonus, fatigue, irritable, distracted, harder time focusing and comprehending, slurred speech, headache & visual migraine, intermittent insomnia, lingering brain fog, and a few others.

I did VNG at a balance center and Carrick practitioner. VOR = Vestibular occular reflex; OPK = Opto-kinetics. VOR and OPK tested at Carrick practitioner and neuro-optometrist.

Response to treatments has been slow overall from the beginning. I usually show good initial uptake, but then would have to work very hard to make significant progress. Even then the therapies have proved challenging to take hold permanently. While I worked very hard to get results, never got back to 100%.

Wow, Your symptoms go far beyond the usual cluster of PCS/mTBI symptoms. It appears you have focused on Carrick chiro threatments.

I wonder if you have been influenced by a sell job by the Carrick chiro. It is a problem many have.They tend to think every symptom, no matter how minor it is, deserves highlighting.

Many symptoms can be observed by a detail oriented diagnostician but do not mean the patient has a deficiency due to every symptom.

I have horizontal nystagmus. I've had it for decades. It does not change my life unless I try to swing at a pitched baseball.

If you are experiencing slurred speech, you are still in an acute phase. Have you been assessed by a rehabilitation neuro or physiatrist?

Or, is the list of symptoms what you started with?

What work-arounds do you use to reduce the impact of your symptoms? Studies show that most improve better when they use work-arounds to overcome symptoms and get on with their lives.

my experience at cognitive FX
 

sorry for the delayed response. I did go to cognitive fx in march of 2017 and wanted to give the post treatment (brain HQ) some time, before I weighed in on the overall experience/efficacy.

The week at cognitive fx was exhausting. They really push you hard cognitively. I had some problems sleeping that week, which probably didn't help matters. My initial fMRI showed significant abnormalities in blood flow, which are supposed to correlate to neurological activity with respect to a given mental task. I asked for the raw fMRI results, and they claimed that they were proprietary, and instead they give you a detailed summary of the various brain regions activity based on certain mental tasks. I guess that the fMRI processing that they do is their 'secret sauce', that they have spent a lot of research money refining it, so they want to protect it. After the treatment week, myfollow up fMRI showed normalized blood flow, and their departing statement to me was that my neurovascular coupling was reset, and I am well on my way to recovery from symptoms, and should probably be experiencing a vast improvement already.

The problem is that this improvement in fMRI didn't necessarily correlate with symptom improvement. My symptom index was relatively consistent across the whole week, meaning that I didn't experience much relief in any of my symptoms. I did however notice that my performance improved on the cognitive exercises that they employed on me throughout the week. I can also say that I had some weird symptoms immediately after the week at cog fx. I felt a vague opening and clearing of the head, like it had less cob webs in it or something. I also felt a strange opening feeling in my sinuses, like I could smell better. very peculiar and interesting. I was taking it as a sign of real changes occurring in my brain, until about 3 days after I got back from cog fx when I went back to feeling about the same as I was feeling before I went there.

When I got home, I devoted myself to doing brain hq exercises for about 30-60min/day for about 2 months. Again, performance improvements, but little symptom improvements were noted. So, I stopped the exercises as my functional time is a valuable commodity for my family, and not to be spent frivolously.

I've read that it takes about 6 weeks for neurogenisis to take place for a given stimulus, and I believe that that is the desired end goal of cognitive fx's focus on neurovascular coupling. I am now 7 months out from my treatment at cognitive fx, and though I have had some improvement since then, I can not definitely say that the improvement was from cognitive fx and not from my normal healing trajectory over time. It was an educational experience for me in cognitive exercises and stimulated me to look for other ways I can promote neurogenisis through cognitive demand (exercises). That said, I have talked to another (and hear of others) who have had profound improvement in their week at cog fx. Its hard to ascertain how they are able to get this kind of improvement when all the research shows that neurogenisis takes time. I am thinking that maybe these fortunate recovery stories at cog fx stem from a different type of cognitive compromise than the rest of us. They may be experiencing symptoms from some other pathology other than neuronal damage, like for instance brain noise. A brain that is structurally sound can malfunction from excessive noise (misfiring or improper inhibition at the synapses). In which case, a simple reboot (a week of intense cognitive demand at cog fx) might get the neurons to start communicating better with each other. don't know...

Next up, I'm trying infrared light therapy. Red light man just came out with a new infrared device that is pretty powerful at the 830nm spectrum.
thanks for all your input,
Shane

2.5 years out from initial head injury: current symptoms - cog fatigue with mod-heavy cognitive stimulation. headache, wooziness, phonophobia also with excess stimulation. occasional sleep problems. exercise intolerance above 120 beats/min.

Shanebox,

Have you seen this?

The Brain and Mental Health Benefits of Low-Level Laser Therapy (LLLT) — Optimal Living Dynamics

shanebox,

Neurogenesis takes much longer than 6 weeks. It takes thousands of repetitions to program those few new neurons. Think of it as unformatted memory that cannot be used until a path is made to it. This is sometimes called indexing

CogFX tries to push that timeline. Mostly, they just work are reawakening areas that have become dormant.

It's odd that they claim fMRI data is a proprietary form of data. fMRIs are common and they do not have any special way of imaging. Their proprietary concepts are how they interpret that data and use it to direct their therapies.

I agree with you that many with noticeable improvements may have attained those improvements without CogFX. They have never done any studies to prove otherwise.

I had similar results with brain training. I got good at the exercises but did not improve my global functions. Studies show that brain training only improves the limited skill sets of that exercise.

The brain training that is shown to have benefits trains quick response functions and observation skills. Most benefits are limited to healthy brains because injured brains are often overtaxed. I've contacted these companies and begged them to look at injured brains.

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.

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.

responses
 

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.

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.

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.

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.

responses
 

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

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.

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)

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.

Hi DavidUser

thanks for sharing your story and experience at cognitive FX. Its wonderful news that you are feeling so much better. Hopefully you are one of the lucky ones that experience lasting relief. Some people at cognitive FX seem to get miraculous relief that endures. Please inform us how you are doing now and if your symptom relief has endured past the first week post treatment.

In my experience, most of the patients claim to be feeling a bit better immediately post treatment, but many aren't completely sure. Possibly more hopeful than anything. I myself, certainly felt different right after my week there, like my head felt more clear and lighter. After a few days of being back home post treatment, my hopefulness receded as the clear head feeling went away and I realized I still had all the same old PCS symptoms.

My hope is that you are the former, and continue to experience relief

Cognitive FX
 

Any new information, incite on PCS and/or Cognitive FX? Anyone with experience with other concussion centers? UPMC in Pittsburgh? Anyone with exertion therapy experience? Getting desperate for most any kind of help!!

Hi Shane,

I am also a PA, now also a PCS victim! 3 months since my concussion and now considering all my options for trying to get myself back to work, life, functioning back in the real world! If you had to do it over again, what suggestions would you give? Would you go with CognitiveFX again? Other ideas, suggestions?

MicheleV,

Welcome to NeuroTalk.

ShaneBox has not posted since January.

What symptoms are you struggling with?

What things have you tried?

What are your daily activity levels like?

Do you get good sound sleep?

No. I try to not nap at all during the day but I don't sleep well at night. I fall asleep but wake several times a night, have weird dreams, talk in my sleep and wake up my husband rolling around. I am more tired in the day but do my best to not nap. I do rest during the day when my head hurts but try hard to stay awake!

I really want to go back to work but have not been released to return to work. I work for a large company that requires a release. I've begged but keep getting told "no, come back in 2 weeks." It's been 3 months now. They won't even let me try part time, won't let me drive.

I'm looking for a second opinion and am considering Cognitive FX even though it's a long way from my home and quite expensive. Thanks for listening!!

I just did a brain map which showed why my sleep is affected and my brain fog(ADD they call it).

Thought insurance would cover it but was wrong. 30 sessions is around $2100.

What makes these places that use fMRI so much better? rTMS I’m also interested in and seems to act similarly as NF but more advanced. That’s more costly but insurance might approve it for depression.

Michele,

I have three ideas for you.

First, read the Vitamins sticky at the top of the index page. Note the soft ice recipe.

Second, consider the likelihood that you have suffered a subtle neck injury. It can cause many of the symptoms you have. It will not image because it is just a subtle injury that causes upper cervical instability. This can be problematic during sleep. It made bumpy rides in the car a problem. Just turning my head back and forth to scan the back yard when picking up after my dogs would trigger symptoms.

I did a lot of neck icing and focused on good posture during sleep and rest. Gentle traction and mobilization by a PT or chiro helped. No 'twist the head and pop the neck' chiro work. No range of motion exercises until after months of limited motions to help strengthen and stabilize the neck.

Third, you may have a sleep disorder due to your neck or other PCS issues. A recording Pulse Oximeter to track your pulse and oxygen levels as you sleep could be helpful. I developed Central Sleep Apnea that was triggered by poor head and neck posture. I would have stressful dreams, fitful sleep, foggy days and sleepy spells during the day. Once I resolved this, my improvement was noticeable.

Have you had your hormones assessed by a neuro-endocrinologist. Many have found it to be helpful.

Thanks. I don't have depression. But very bad headaches with any exertion or activity, light or noise. What kind of therapy did you have for 30 sessions?

I am taking omega 3 fatty acids, magnesium, CBD oil, and curcumin supplements. I limit caffeine to one cup a day and no alcohol. I eat a very healthy well balanced diet.

I definitely had some soft tissue neck injury that is still working itself out. I use heat and ice, do gentle range of motion. Car rides are bad but it's more visual. I'm much better with my eyes closed, hat on, sunglasses. But bumpy, curvy roads do bother me a lot too! I had a CT of my neck that was OK for acute injury but I have some arthritic changes. I changed from my favorite memory foam pillow to a lower, softer one which actually helped but I do wake up with a headache every morning still, just less severe. PT has helped some. I haven't had a sleep study or neuro-endo eval but my pulse is slow and regular overnight, in 50s. 70s in day. I monitor it with an Apple Watch and sleep apps. THANKS!!

Michele,

Your supplements are missing all of the Bs. They are the most important. They support myelin sheath health and blood brain barrier health. If the magnesium is mag oxide, it is a waste. Mag ox is a laxative that goes right through you. A calcium citrate mag citrate combined would be good. You need D-3 also.

If you are waking up with headaches, I suggest you focus on sleep posture. I had to learn to sleep on my back with minimal pillow. I get some of my best sleep in a recliner. It is worth it to wake up refreshed. It took a lot of trial and error for me to figure out my sleep issues. I dreaded going to bed because of the stressful dreams and waking up in a fog.

Does the Apple watch tell you anything about your breathing rate or turning in your sleep/restless movements?