Whew! That was a long week! Thank you to everyone who was a part of getting Emily to Utah, to Cognitive FX. It was an amazing experience, despite the fact that she had the FLU for most of it (nope, I’m not even kidding; wish I was)!
(No, it wasn’t COVID. And it wasn’t technically the flu, or at least the variant they tested for, either. Nor a host of other microbial monsters. But it was something awful and it hung on like a scared monkey, and for lack of anything better to call it, we’re going to call it the flu. All you epidemiologists can argue all you want.)
Even for healthy patients, the long days of therapies at CFX are exhausting, and let me tell you, this sick kid took exhaustion to the next level; at the end of each day, she resembled more of a puddle than anything. But she toughed it out, worked like a dog, learned a ton, and got through an amazing week of therapy to set herself back on the road to healthy brain function!
The CFX army of therapists came at her from every angle imaginable, retraining her brain to use the correct pathways, the pathways it had forgotten so long ago. They targeted her most dysfunctional areas of gray matter, and showed those areas how to take care of themselves again. Intense cognitive overload, meet the flu. Poor kid.
The story of Emily’s week is LONG and mind-blowing, but she wanted me to share just the one little number that sums it all up…
CFX does an fNCI scan (functional NeuroCognitive Imaging) at the beginning and end of the week, with the patient in an MRI tube doing a series of cognitive tests, and the neuro-gurus measuring the actual biomarkers and workings in her brain, specifically the Neurovascular Coupling, or blood flow to the neurons. They can see for each of the many areas of the brain, where too much energy is being expended, and where not enough. Who is demanding too much blood flow, and who is starving. (The score isn’t representative of how a patient actually performs at the tasks they did in the scanner, but indicative of how their brain as a whole functioned (or didn’t) in response to those tasks.)
In the end, they take all their millions of measurements, put them into snazzy charts that show how things are going in each area of the brain, and ultimately boil all that data down to one number, the Severity Index Score (SIS). All the numbers along the way are fascinating, revealing, and overall super fun (also important: these numbers guide the therapies for the week), but in the end they compile all the data from all the different regions, take into account all the proper weightings and cognitive inclinations, and churn out this one number, the SIS. This is the number Emily wants to share with you all.
For reference, a brain that’s never been injured scores, on average, 0. There is a little fluctuation on both sides of 0, but in all their research, they’ve never had a non-concussed brain score above 0.6, and the couple of folks who got close were folks who had panic attacks in the scanner, so weren’t exactly reliable participants!
- So up to around 0.75 is OK; this is mild, and where they’d like to see their patients, at least post-treatment.
- From 0.75 up to around 1.5 is pretty damned problematic, and they’ve got work to do.
- And above 1.5 is severely impaired. Lots of brain regions running way too hot. Lots of them cool as a cucumber and not interested in doing any work at all. And lots and lots of them just plain refusing to work together as a team.
On Monday, Emily had her initial scan, and her poor, poor brain scored a 1.61. It was hard to see, but unbelievably validating at the same time. Concussions are so often such invisible monsters that the victims are left thinking that it’s all in their head. (Which it is. But, you know, not like that!) Emily’s 1.61 confirmed pretty severe Post Concussion Syndrome, and really showed on paper how hard her brain has been working to get her through her days for the last 6 years. Mom might have cried a little.
And after days and days of forcing her brain out of its dysfunctional habits and helping it to fire on all the correct cylinders, Em got back in the scanner, beat down by the week’s brain-frying, and did it all over again, this time with revised tests (harder too!) to ensure that no learning could come into play. Her new score, showing all the progress that her therapies had made in making the new (old!) connections, was a 0.14! Mom definitely cried. Emily might have, but it was hard to see through the mom-tears.
This number is not a number that should ever rebound, except in the case of another head injury. The changes are actual repairs—abandoned pathways resurrected, blood flow restored, dysfunction turned function—and the progress sticks. Pretty exciting stuff.
So what does this all mean for her symptoms? Well, we don’t know yet. With that much of an improvement in her SIS, we expect to see lots of improvement in her symptoms as well, but it will take a little more time to see. Cognitive FX basically resurrected all of her symptoms last week, thanks to all the targeted overload of the therapies; it was quite the onslaught. But hopefully that is the small upfront price for a huge payout in the end. Over the course of the next few weeks and months, she should notice a distinct lack of many of the things that have been plaguing her. She’s also got plenty of homework, building some of her exercises into her daily routine to really keep things moving in the right direction. The work isn’t done yet!
We’re also proud to report that there is just a little bit of dough left in the GoFundMe account after all is said and done and all the pipers are paid. Which is great, as there might be a few more expenses down the road. Specifically, her doctor suspects that she might benefit from a few more sessions of NeuroIntegration Therapy, an area where they were seeing good progress in the clinic, but not quite as much as they would have liked. Thankfully, this is one of the few therapies that they are able to do a la carte, via Zoom, at a very reasonable cost. She should have enough extra money to pay for a few of those sessions, should they be decided upon. What a gift!
Beyond that, some people do (somewhat rarely) go back for booster days, so impressed with the progress they’ve made that they want to see if there’s any more goodness to be had at a later date (generally there is). Also, the sad fact is that Emily was unbelievably sick for nearly her whole week at CFX (the timing was like a bad joke). We suspect that she got most of the benefit from her therapies anyway, but if you saw how sick she really was (‘twasn’t pretty), you couldn’t help but wonder if a booster day wouldn’t be even more beneficial for her than for most!
So, the little nest egg that still sits in Emily’s account, and any further donations, will, just like we planned, go towards any future therapies that Em might need to really get the most out of the Cognitive FX experience. We’ll leave the GFM open and updated for anyone who might want to help her out with those future possibilities.
For now, HEARTY THANKS to all of you who made this possible for Emily. It was truly a life-changing experience (already!), and we are so excited to see all the relief that is in her future. By the end of the week, she was wondering how many ‘things’ might improve that she didn’t even realize were problems. It’s just been so long, and she was so young when she got that first concussion. She’s looking forward to some surprises!
Emily and her old mom
Wondering how the rest of the week went? I’m sure I’ll pull together a more comprehensive post in the coming days… Stay tuned…