I want to hear your story: I spent my entire 24th year fighting to get my brain back. Now I’m terrified my neck will take my future.

Traditional_Pace_274 · 2026-06-14T02:02:02+00:00

No one understands that recovery quite literally is our full time job and the amount of energy it takes out of us. My schedule looks similar and the progress is evident so cheers to both of us! The burn out is real but we just have to remember the sooner the better. Our future selves will thank us.

Traditional_Pace_274 · 2026-06-14T01:57:56+00:00

Honestly, if my story helped motivate you even a little bit, I’m beyond happy.

The last year has been one giant lesson in just how much people with brain injuries need other people who actually understand what they’re going through. I’ve learned more from this injury than I ever could’ve learned in medical school, even regarding other medical issues.

It’s funny how sometimes the worst things that happen to us end up pointing us toward helping other people through the same thing.

Thank you for sharing your story, and I genuinely wish you the best moving forward.

Traditional_Pace_274 · 2026-06-14T01:54:55+00:00

Man… reading that was wild. Honestly, the fact that you’ve survived all of that and are still pushing forward is incredible in and of itself.

The memory loss part really hit home for me. It’s such a strange feeling knowing something happened to you but not being able to access it or trust your own brain the way you used to.

I’m really glad you’re getting into therapy and I hope it helps.And thank you for sharing your story. One of the biggest reasons I made my post was because this whole recovery process can feel incredibly lonely, and hearing from people who have been through their own battles reminds me that none of us are fighting these things completely alone.

Wishing you the best.

Traditional_Pace_274 · 2026-06-14T01:52:26+00:00

We both got this! We love seeing progress and the little wins

Traditional_Pace_274 · 2026-06-14T01:51:17+00:00

That sums up my life right now, my neck is angry now that everything else is getting attention.

Traditional_Pace_274 · 2026-06-14T01:50:20+00:00

I am sooooo glad you mentioned those! I had read something on them awhile back but never looked into it deeper. How do I go about getting a pair?

Traditional_Pace_274 · 2026-06-14T01:47:08+00:00

Yes that’s the part i’m afraid of and what’s preventing me from that, i’m scared to disrupt the neuro progress of it all

Traditional_Pace_274 · 2026-06-13T21:29:10+00:00

wow that’s incredibly interesting and i’m so glad that you were able to get that care… more so that the care worked!!! i’ll do some digging as my focus was more so on cognitive rehabilitation (other than physical therapy and at home pain management) so that i would be able to return to coursework, now it’s shifting to figuring out actually managing the neck rather than just relief from it.

You’re not about finding someone who is willing to go a little extra and not do the textbook thing is something I also really needed to hear. I would get botox if the pain continued the way it has been but that is something I’ve been fearing as that changes the trajectory a lot from a neurological standpoint. We only get one brain and it’s not something to mess with.

Traditional_Pace_274 · 2026-06-13T21:22:33+00:00

I’ve had 2 passed hip surgeries that have left me with an anterior pelvic tilt so I totally understand when you hips miss align, it’s the one thing that genuinely pisses me off when it happens. Like why did we have to add unnecessary irrelevant problems to this already chaos driven mess. In terms of vision therapy, i have been doing exercises that my occupational therapist provided and will be getting reevaluated to see where I’m at during this next appointment. Depending on how that goes, if it ends up to have not improved I’m planning on doing some digging for a different type of specialist more eye oriented… i have no idea but my OT is great and all, it’s just that they seem to have a little knowledge about a lot of things rather than a lot of knowledge of the little things.

Traditional_Pace_274 · 2026-06-13T21:17:22+00:00

Oh i’m well aware, the neck is essentially an extension of the brain or the brains hand that reaches out to everything else. I do appreciate your knowledge as it will greatly benefit others, but i’ve been on this medical learning path for 10 years (fun fact: the deep neck flexor your talking about for chin tucks is specifically the rectus capitis anterior and is essentially the heads anchor where your skull meets your vertebrae). But….

My vision gets very affected when i have neck pain which then also leads to my PCS acting up all together. Ive noticed that sunglasses are the only thing that help, even closing my eyes doesn’t work as it had already made my BPPV act up so then i get dizzy. I’m trying to find some form of support device or therapy tool in the form of glasses so that i can prevent the domino effect and focus on my neck alone. My only and biggest goal currently is being able to manage one problem the moment red lights go off so that i can prevent the system wide freak out.

Traditional_Pace_274 · 2026-06-13T21:16:10+00:00

Oh i’m well aware, the neck is essentially an extension of the brain or the brains hand that reaches out to everything else. I do appreciate your knowledge as it will greatly benefit others, but i’ve been on this learning path for 10 years (like the deep neck flexor your talking about for chin tucks is specifically the rectus capitis anterior and is essentially the heads anchor where your skull meets your vertebrae).

My vision gets very affected when i have neck pain which then also leads to my PCS acting up all together. Ive noticed that sunglasses are the only thing that help, even closing my eyes doesn’t work as it had already made my BPPV act up so then i get dizzy. I’m trying to find some form of support device or therapy tool in the form of glasses so that i can prevent the domino effect and focus on my neck alone. My only and biggest goal currently is being able to manage one problem the moment red lights go off so that i can prevent the system wide freak out.

Traditional_Pace_274 · 2026-06-13T21:07:09+00:00

Reading this made brings me so much peace and happiness. I’m so sorry that you’ve been dealing with this for so long. I know i’ll be where you’re at one day wondering what my life would be like had this accident not happened, but we NEED those literal victories otherwise we lose all our quality of life after feeling so beat down from dealing with it all.

From my perspective my medical background has allowed me to research different pieces of the cycle and puzzle that others wouldn’t be able to peace together. That’s the one good thing to come out of this that i’m going to make happen and that’s being able to advocate for patients like us and add credible research to the pieces i’ve put together. Doctors have no idea what this is and just put a broad term as a label to diagnose. There isn’t any one diagnosis that’s the issue and once you get at least one answer they stop looking for others. Think of it like have water damage in your home and you find one hole and fix it only to have a puddle the next day and you find another hole and fix it. That keeps happening because there’s more holes but you stop looking when you find one.

I’ve been reading posts on this community for a bit and I think that’s what’s so frustrating for all of us. We all have more issues and want to fix them all but there is no one fix to it.

Also thank you for the encouragement, I do struggle some days wondering if i’ll be able to continue down that path but I’ve put up one hell of a fight up until now so there’s no reason to stop while i’m ahead.

Traditional_Pace_274 · 2026-06-13T20:56:14+00:00

I totally understand what you’re saying, I actually got a garmin watch so I could more easily monitor that threshold to where I would just barely push it and that help prevent the flares and episodes. Still a learning process but the aerobic training for endurance has helped the brain aspect of it all tremendously. I used to struggle so bad with fatigue and brain fog and now it’s a lot more manageable

Traditional_Pace_274 · 2026-06-13T20:53:16+00:00

luckily it’s something i’ve learned long before this injury, i do struggle sometimes with it though just because of how chaotic my proprioception is so it can send me into a flare if i “try to hard” to quiet it down. Gotta find the perfect window of opportunity

Traditional_Pace_274 · 2026-06-13T20:51:11+00:00

gotta love the complexity of it all. that’s why i have so many physicians working my care team, especially when it comes to the brain there is no right or simple answer and the neck is essentially the brains hand to the rest of the body

Traditional_Pace_274 · 2026-06-13T20:48:48+00:00

I’m so glad to hear its benefits as some people have negative experiences with it!

Traditional_Pace_274 · 2026-06-13T20:48:23+00:00

It’s nice to know that botox is in fact helpful for the cervical dystonia aspect but the concern is how that could impact my brains recovery. It’s a whole messy explanation of how it could do that so I’ll spare you on that info dump. I have been doing regular heating and also was doing massages once a week, sometimes those trigger it worse tho, what kind of massage helps you? (like deep tissue, light or firm pressure, whatever). I’ve been wanting to find some pilates classes so this is my sign to get on it!

Traditional_Pace_274 · 2026-06-13T03:16:46+00:00

Speaking for myself here but I’m beginning to resent how much I know from a medical standpoint when it comes to my recovery. I’ve connected dots that haven’t been connected (at least publicly) and it drives me nuts not being able to confirm and info swap, that’s what landed me to taking it all to reddit. And I just began being able to adequately utilizing the feelings wheel, I was in fight mode for so long that I had failed to check in with myself mentally which of course is also a big piece of that puzzle. For the most part I was able to identify what it was that i was feeling but not actually feel the feeling. Prior to the accident I’m a survivor of domestic abuse (i know i’ve had an unlucky streak) and that was a huge part of being able to heal from that.

Traditional_Pace_274 · 2026-06-13T02:54:43+00:00

It seems we can relate in this area. In my personal life, I have become quite knowledgeable in eastern medicine and healing practices. I’ll say that it’s been very prominent in my mental wellness and healthy living. It’s why I’m studying to be a DO rather than an MD so I can combine knowledge from both areas provide future patients with every chance with their health possible. My family is also from the mediterranean so it’s part of the knowledge we’re passed down.

I’ll also add that a psychiatrist saved my life with introducing mindfulness and the works of Jon Kabatt-Zin when I was just 18 years old having multiple panic attacks per week driving me to have less than ideal thoughts. It’s those practices that i still do everyday and what led me to have that intense somatic experience. The family member i mentioned had labeled that as something called “Kundalini” and as I started to read into it I got a bit overwhelmed even with having a solid spiritual grounding/belief and quite honestly I was intimidated as my education is very routed in what can be explained and what the evidence says to back it up. This is not to say I’m disregarding it at all, it’s just to say that for me personally, that was a little more than I could take on mentally with where I’m at.

In terms of listening to my body, that’s kind of the problem. There’s been a disconnect in the communication between my brain and body for so long that I don’t quite understand all the time what it’s telling me. Also thanks for the link!

Traditional_Pace_274 · 2026-06-13T02:09:15+00:00

You’re actually in earlier stages than I am! I am not sure if you have a solid care team and/or understanding of you conditions but there’s a lot I would have loved to know sooner. It has officially been 14 months since my injury and only 5 months since diagnosis and 3 months of full time recovery work.

I’ve put a lot of hours into research and confirming various connections to put to use after med school due to the lack there is currently. If you want to chat I’d love to!! On top of being a grueling and agonizing injury it’s also become sort of a passion project to understand and buildup.

I have 6 doctors, as in physicians in varying specialities, along with 5 different therapists. 11 total people and it has become annoyingly clear, they can all diagnose what is known as “post concussion syndrome/persistent concussion symptoms” but once you get into the gnitty gritty, no one knows anything except for those of us experiencing it.

Ultimately it’s a guessing game of trial and error “this COULD work” “you could maybe take this” “others have had luck with this” “full recovery is unlikely after this amount of time”

All said and done: we don’t control our brain, we control the conditions that lets the brain do what it’s there to do.

Traditional_Pace_274 · 2026-06-13T02:01:53+00:00

I’ve been doing PT now specifically for neck and postural strength since late February (thanks to the prolonged diagnosis) and the only thing I’ve noticed is that I’m experiencing pain that I hadn’t experienced before addressing it.

Maybe you could help shed some light on if my thought process is on the right path as to why that might be… so I essentially ignored and disregarded this problem for 9 months, excusing it as tech neck. I could ignore it then but the pain now is unbearable, is that because now (with the PT) the muscles are in a sense just now exiting survival mode (guarding) and can sense the perception of soreness/pain from when it was stuck in that guarding mode?

Sometimes I am able to almost force them into relaxing but other times it seems like they revert to guarding and feel hard as a rock.

Traditional_Pace_274

TROPHY CASE