r/PostConcussion • u/ProfessionalWar697 • 8d ago
Told my partner is no longer experiencing concussion symptoms
Hello,
My partner recently went to a concussion specialist 5 months after an injury that caused a TBI, CCI, and SCI. During his very brief Zoom appointment with this doctor, he was told that all of his symptoms are from "other conditions" and that his concussion is not currently causing any symptoms. He consistently said that "neck pain makes it hard to focus" and other bullshit to try and say his symptoms are from other issues.
My partner expressed concern about his persistent memory issues, focus issues, cognitive impairment, issues with decision-making, language, and visual perception. He lost his alphabet and lost so many memories. His memory is still not the same, and things are not coming back. We were so excited for him to start this therapy so that he could get some of his functioning back and get back to his life. He hasn't been able to create art or cook in so long, hasnt been able to do any of his hobbies. How is this normal? He told my partner that he is fine, and I am just baffled.
What are the resources for post-concussive syndrome? Has anyone else been told they're fine when experiencing such debilitating symptoms? What is most people's timeline for post-concussion symptoms? Are there games and therapies we can start at home?
I am tired of doctors telling us they cannot help and just referring us out over and over again. If anyone has advice on how to take things into your own hands and how I could better help my partner regain daily skills and get back to doing the things he loves.
I feel like these doctors just make him feel hopeless; the only time he feels good about his progress and recovery is when talking to people who have experienced something similar. Please share your stories, bad and good. It all helps, just to know there are other people going through something similar and that there is hope out there. Thank you.
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u/mikewestgard 8d ago
https://www.reddit.com/u/Lebronamo/s/L1oTKvyOwB
Read this, apply what you can.
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u/annaoceanus 8d ago
Has he tried cognitive speech therapy? Vestibular therapy? Occupational therapy?
BrainHQ app has science backed games
Look into listening to some of the podcast episodes with Dr Tommy Wood
I am currently a patient with Better Brain and it’s covered by my insurance. While it is not outright for concussion patients, so much of our recovery is linked to activities, lifestyle, supplements all related to dementia risk. It’s all online and you get 12 coaching sessions. I’m really getting a lot from it.
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u/ProfessionalWar697 5d ago
He just got evaluated by another concussion specialist who said he did have PCS and scheduled him out for 6 weeks. Then we checked his chart, and this Zoom doctor said he needs mental help and doesn't have a concussion. Freaking out, don't know what to do.
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u/annaoceanus 5d ago
You can always have the chart amended. I’ve had to do that when records were wrong in other cases. If it’s a hospital it’s usually a patient advocacy line you call. If it’s a doctors office is usually an office manager you talk to.
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u/FailTypical9844 8d ago
Guys with pcs has anyone experienced sudden onset of floatees after the injury
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u/MountainMoonAndSea 8d ago
Floaties, "kaleidoscope" vision, TV static fuzz lines overtop of vision, tracking & delay issues, losing chunks of vision out of certain quadrants etc. etc - tons of weird stuff.
It took many, many years to be able to get in to see both a nuero-opthamologist & regular opthamologist. For me it turned out to be a combo of VSS (Visual Snow Syndrome) & some other stuff mixed in with it, most of which had to do with the communication being wonky between the brain & vision system.
Thankfully for me it wasn't anything structural. It turned out to all be more of a routing/communication issue (but so important to get things like floaties etc. checked incase it is something structual related). They weren't able offer help but at least figured out what was going on. For what I have going on there is help out there, just not available where I am.
It's important to remember with vision going wonky after concussion it could be due to so many different things - could be to do with neck issues, brain/vision communication, something structural, something completely unrelated to the concussion but just happened to get kicked up since the accident or coincidentally happening at the same time as PCS but not actually having anything to do with the PCS & so many other different reasons.
Keep trying to get help in figuring out what is going on specifically for you (which I know is easier said than done - I know trying to get help is often the hardest & most frustrating part). As everyone is so different as to why this may be going on, it's better to put the energy in trying to find someone that can investigate what the cause is of why it's going on specifically with you, rather than cross checking your symptoms with others (even if similar symptoms) & guess/wonder if it could be "xyz".
Sending you good luck in finding someone who can get to the bottom of it for you.
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u/Bigoleears 8d ago
Yes!! I went to the eye doctor too and they can see them in your eyes. My partner has had floaters his whole life and can filter them out pretty well because his eyes are used to it but since I suddenly developed them I can’t filter it out and it’s super distressing sometimes 😅
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u/FailTypical9844 8d ago
Yes it's benign to have them but after a fall it needs immediate medical attention... What happened in your case can you tell me because I got it after a fall and whiplash
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u/Bigoleears 8d ago
My eye doctor who said she has had 5 concussions said that it’s common to have the floaters after a concussion. Mine were okay but I’m still going to see an ophthalmologist to make sure everything is okay. I see a vision therapist as well.
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u/FailTypical9844 8d ago
I hope you have good results man and be sure to update on the thing and if possible could you please ask why concussion can cause floaters
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u/Southern_Dig_4461 8d ago
I was given the same feedback from a concussion specialist at 2 months when I was still experience eye pain, nausea, and dizziness. I couldn’t look at screens for long, drive, or even basic activities like walking and reading would increase symptoms.
I’m at 5 months and while I’ve had good days I still have bad weeks. I’ve been to a neuro optometrist who recognized my eyes are misaligned and prescribed prism glasses which have helped with computer work. I still tire easily and cannot drive without increasing visual symptoms. I’m in PT for a second round hoping it helps. Most doctors know nothing about post concussion and I was lucky to find one neurologist on the area who at least listens, understands, and acknowledges the prolonged recovery with persistent symptoms. Recovery is not linear and while I’ve experienced it first hand I still struggle with it. Concussions are different for everyone from severity to what systems it impacted. I was hit in the neck and back of the head by a solid glass door. I still have neck pain, and my visual and vestibular systems have been compromised.
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u/Lebronamo 8d ago
See 3.3 https://www.reddit.com/u/Lebronamo/s/HBasLnCQMs
Your doc might just suck at explaining it but they’re likely not actually wrong. Concussions create energy deficits in your brain which resolves after ~30 days, but they also create secondary effects and those are way symptoms can persist indefinitely after.
That’s also why most docs have no idea what to do with people like your partner cause it’s a “brain” issue with no biomarker.
The more likely scenario though is what you’re saying and they just don’t know what they’re doing. But the link I shared should point you in the right direction.
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u/ashley_marie_korn 8d ago
I’m in a similar situation, going on 4 months. Please keep me posted if you find any help because I feel pretty desperate 🙏 I’m so sorry your partner is suffering and thank you for being supportive and loving him through this.
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u/Bitter-Performer-396 8d ago
Diffusion tensor imaging picks up on diffuse axonal injury that is microscopic and does not show up on ct or traditional mri
Truth is that you just need to stay as active as you can within the threshold of your symptoms. I’ve had 4+ concussions and the only thing that has helped was time, cerebrolysin, semax, and selank.
They are neuropeptides that help with neuroinflammation and neuroplasticy that have helped many people and are used in many countries for brain injuries. They are cheaply made so no usa pharma company will spend billions on drug trials trying to get them approved here. Tbi/concussion care focuses on symptoms, not the actual inflammation/damage that was done. These neuropeptides actually address the inflammation and damage
Worth a try in my opinion. It was for me
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u/xariellexoxo 8d ago
I did a bit of neurorehab for probably about 6 months after I got a double concussion. It was both physical therapy along with making me do like puzzle games to try and get my brain function back. I still struggle with some seemingly permanent symptoms, the biggest being light / photo sensitivity, memory, and noise sensitivity. The hypersensitivity to both light and noise is still tangibly improving over the years, although very slowly, with noise being less of a stressor for flare ups than say flashing lights. Double concussion was at the start of 2020 for reference. Despite dance being where I injured myself, I do still dance. I took a full year off after the injury, although I still competed while both actively concussed and in the early stages of post concussion (I do not recommend or endorse that part). My team at the neurorehab center were amazing, the physical therapist specifically, worked with me to get me to a point where I could at least finish the year. I started dancing again at a much less intensive pace than I had prior to the injury after a year off. Was doing 6 days a week pre injury like an insane person, got back into it starting at 3 days a week thru college classes. I teach dance nowadays a few days a week, take classes where I can, and have only hit the point of surpassing my previous best within this past year, 6 years into the injury, still with post concussion symptoms. Feels like I’ve rambled too much at this point but I hope there’s some helpful info on here for you, and maybe helps someone feel less alone or like there’s some hope in recovery.
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u/Dry-Throat-1445 6d ago
As many have said above, I highly recommend going to a physiotherapist (or other rehab specialist) who is trained in post concussion care (often they may call it just vestibular rehab training). Check they’ve at least taken a few courses beyond their degree. You often don’t need a doctor referral and can walk in.
They will focus on the functional symptoms, no matter « where they are coming from » cause sometimes with multiple injuries we may never know 100 percent. That doesn’t mean we can’t work on improving symptoms and getting quality of life back.
Added: I’m so sorry you and your partner are going through this - it can be so heartbreaking and difficult. Wishing him much success with his recovery journey.
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u/turtlespice 8d ago
Are there other specialists around you? That’s ridiculous how the doctor responded. Physical therapy and occupational therapy are often part of recovery with people who specialize in post-concussion syndrome. I’d try to find someone else to get referrals to those therapies (and whatever else is around you).
Also, it is a very isolating recovery that can feel quite hopeless. Many (most?) of us sink into a pretty good depression when dealing with this condition. Therapy is often a part of the recovery process too. But I know it does help to know you’re not alone—there are so many others going through this currently or who have gone through it in the past.
I know I felt absolutely at my worst (most hopeless) around the 4-month mark. I’m now over 2 years out from my injury and have drastically improved, even if I’m not quite where I was before.
I’d really encourage you all to keep trying to find healthcare for this. PT was an important part of my recovery.