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-   -   cognitive FX concussion clinic in Utah (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/244117-cognitive-fx-concussion-clinic-utah.html)

shanebox 01-18-2017 11:47 AM

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

Mark in Idaho 01-18-2017 05:33 PM

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.

shanebox 01-18-2017 10:07 PM

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.

Mark in Idaho 01-19-2017 01:29 AM

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.

shanebox 01-20-2017 05:12 PM

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.

Mark in Idaho 01-20-2017 08:29 PM

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.

shanebox 01-22-2017 09:51 PM

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.

Pete in WI 09-08-2017 04:32 PM

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.

Mark in Idaho 09-08-2017 05:01 PM

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 ?

Jennifer RN 09-11-2017 01:54 PM

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.

Quote:

Originally Posted by Pete in WI (Post 1250601)
I am considering going to CognitiveFX for treatment. Wondering if anyone has been and would be willing to share. Feel free to PM me.



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