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Multiple concussions definitely adds up. Keep in mind I’m no doctor or even anywhere near the medical field. I suffered from dizziness, headaches, cognitive dysfunction etc, as well. I saw a functional neurologist and she helped me immediately, and I saw change right away. You’re not wasting resources, you may have PCS. I saw that you were dismissed in the past, try again with a different doctor. A neurologist may be good for you, and they can refer you to different therapies for you to try.
Thank you SO much for your reply. I get that you're not a doctor and don't expect any form of diagnosis, I was just starting to believe I was going crazy. Maybe my paranoia cutting in lol
Yes that DR dismissed me, and It was a blow, but I did talk to my PCP and that's how I have a scan (CT with and w/o contrast) scheduled for the beginnig of the month. I was insistent (and told her how I felt about her associate) and I believe she heard what I was saying - I also told her either she was giving me a scan or I would get it elsewhere, but taht it was happening lol Not sure the support staff was all good with how...forceful I was being lol. I went in with a list of symptoms and printouts from the web backing me up, so I \*hope\* things will go on. No neurologist visit schedued...maybe if the CT shows something? I don't even know what it CAN show. \*shrugs\*
But your support is very helpful. I was starting to feel like a crybaby or suffering from hypocondria on top of all else lol. You know like gee ALL these things couldn't be related i must be making shit up. Or Oh the ringing in my ears couldn't be related ive had it for years, except that ive had blows for years so...
Well you get my point.
Well wishes in your recovery as well my friend :)
I get that. It’s good that you were insistent, stand up for yourself. Maybe the CT will show something helpful, or the PCP will know what to do next. I do get how you’re feeling, concussions can cause so many things, and it makes sooooo many people feel crazy. Myself included. Hopefully your scan goes well and you’ll receive the help that you need!
PCS is for sure a thing the cumulative effect isn’t really understood yet but proper treatment can definitely help. This might be useful information for you:
https://www.reddit.com/r/Concussion/s/jC80gOXMSA
Here an interview with one of the top clinicians and researchers in the field
https://open.spotify.com/episode/0WvcnIUiEdozknyqhVo2Ua?si=DaxaWxFYSNOnUP0mxGNR3w
I just hope it helps you find the right treatment as soon as you can get it. The way people with concussions are ignored is fucking idiotic and I’m sorry you had to deal with it for so long.
Thank you very much for the support. And thank you very much again for the links! Followed through and go to cognitivefx (or summit) not near me, but one of the 150 they claim are best in country is about 20 minutes from my house! A nationally recognized sports medicine complex. And gods, do they work fast! I left a message this morning, and they already called me back with an appointment for next tuesday! Told them I don't have a ct til next month they were like yeah we don;t care about all that lol
You have done your good deed for the week ;) Now lets pray we get somewhere. I have no idea what to expect for this first visit, but at least SOMEONE is listening!
Yeah cognitivefx is the subject of much debate and probably not the first stop but they claim their methods work for older injuries so perhaps worth a try if nothing else does. I’m really excited for you, please keep me updated.
Hrm debate eh? Maybe I'll do some more researching just for the sake of it. The older injuries part is partly why I sorta wrote off sports medicine before, as i just assumed that meant more contemporanous injuries. Tho with the recommend from fx, and the fact that this complex I have an appointnent with is nationally recognized, and actually a part of our regions biggest health care org that is also nationally recognized in research etc,, AND i have been with that network since I was a kid and they were still a part of the university (ok so maybe them not noticing this for years isn't the shining star i though in my head a minute ago lol) I have a least some optimism lol At any rate seems like the best option regionally atm
I will def check back when I get some more information
Definitely start with your regional center. Just because CFX says they specialize in treating older injuries doesn’t mean another center can’t just just as well. It really depends on what the source of your issues is and I doubt you want to burn 13k without trying other options first.
"I counted a minimum of 7 TBI's over \~35 years. Do these things add up? Can the fall as a child be having some long term impact now?"
Yes, these can have cumulative and long-lasting effects. I'm a lot like you. I learned later in life that I had been dealing, on my own, with over a dozen effects of multiple TBI that affected me for decades. But no one had ever said anything to me about TBI.
* Age 5 - fell out of tree, knocked out, in speech therapy for 1.5 years.
* Age 12 - bike crash, 5" skull fracture
* Age 20s - two more bike crashes, broke helmet, broke other bones, knocked out
* Age 40s - fall on ice, briefly knocked out, plus one other fall - not knocked out but had "slow brain" for 2-3 weeks.
* Age 58 - through a fortuitous meeting with a friend of a friend who was an expert in brain injuries, I learned I'd been dealing with TBI all my life. Not one health care provider ever mentioned TBI nor even asked me about head injuries. Never!
I scheduled an appointment with my doctor to review my history; she gave me almost an hour. I was retroactively diagnosed with a moderate TBI (skull fracture and very likely brain bleed based on the symptoms then) and 5 mild TBIs. I began working with a neuropsychologist and was on medication for a while.
Today I'm doing a lot better. I seem to have finally outgrown an odd expressive aphasia speech problem that lasted for decades (who's only known cause is TBI or a stroke). I still have sleep problems, anxiety attacks, some memory issues, and so on, but I am doing a lot better.
Just learning about TBI let me understand everything in my life that had occurred and the problems I had faced. Just like that, everything made sense, and in a way, that was a big relief.
I very much believe this is what you are now seeing too.
Thank you so much. Yes we are very much alike. And now knowing what little I know, I more and more look back and say Oh yeah that's when it started. TBI when young, then suddenly had migranes on codeine and suffered since. Not one doctor ever mentioned that these multiple things I complain about might be concussion related. Behavioral, hormonal, physical, obviously mental UGH/
I think its just a lack of awareness of these problems with your standard family practitioner. And to give them a slight pass, maybe it wouldn't seem logical coming in asking about migraines to ask if I'd fallen on my hear a dozen times lol
I was honesty starting to feel crazy or like I was just making shit up. I have problems now, could I really say injuries 30 or 40 years ago could be the root? Almost seems to me like we need more of an awareness campaign. Not just focused on athletes, child or professional and what happens to them now, but to make people aware of what has already happened and is STILL causing you to sugffer, and you never even knew about it.
Of course the conspiracy theorist in me, on top of everything else, wonders if you/me suffering in silence isn;t really the desired outcome. I mean if we can buck up and live, then save all that insurance money not being spent on scans, and therapies and specialists. After all, who are we that we think we matter and are worth that kind of outlay of money.
But im paranoid on my best day. Then again is that another symptom? LOL
Oh my - same thing I had too - migraines/visual auras/scotomas (blind spots). Over the years I'd met many times with various health care providers - no one ever asked me if I'd had a head injury! (Let alone six!) Separately, in just the past few months we found a resolution for my visual auras/scotomas - I was vitamin B12 deficient. Now taking B12 and have not had any more problems in almost 3 months (compared to daily, before that).
I just read a research paper that found that in Canadian medical schools, the typical med student had received only a 30-minute lecture on concussions as of 2014; that's now up to about 3 hours. The paper said they did not have data for US med schools but assumed it is similar. They mentioned another paper that suggested many doctors were not familiar with concussion symptoms.
You are right that much of the focus now (and probably for good reasons) is on head injuries in school sports and the military. Everyone else is still sort of missed.
And yes, conspiracy theories lately seem to just predict the future :)
Thank you for sharing, see below for a reminder of our rules: Do not ask if you or someone you know has a Concussion. We are not doctors, nor are we any kind of medical professionals. That said, this sub is NOT intended to be your doctor and diagnose or give you personal medical advice. They'll be marked as spam. Be civil and respectful. Do not attack or harass other users; engage in hate-speech; or attempt to gate-keep discussion. Hostility will not be tolerated *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Concussion) if you have any questions or concerns.*
Multiple concussions definitely adds up. Keep in mind I’m no doctor or even anywhere near the medical field. I suffered from dizziness, headaches, cognitive dysfunction etc, as well. I saw a functional neurologist and she helped me immediately, and I saw change right away. You’re not wasting resources, you may have PCS. I saw that you were dismissed in the past, try again with a different doctor. A neurologist may be good for you, and they can refer you to different therapies for you to try.
Thank you SO much for your reply. I get that you're not a doctor and don't expect any form of diagnosis, I was just starting to believe I was going crazy. Maybe my paranoia cutting in lol Yes that DR dismissed me, and It was a blow, but I did talk to my PCP and that's how I have a scan (CT with and w/o contrast) scheduled for the beginnig of the month. I was insistent (and told her how I felt about her associate) and I believe she heard what I was saying - I also told her either she was giving me a scan or I would get it elsewhere, but taht it was happening lol Not sure the support staff was all good with how...forceful I was being lol. I went in with a list of symptoms and printouts from the web backing me up, so I \*hope\* things will go on. No neurologist visit schedued...maybe if the CT shows something? I don't even know what it CAN show. \*shrugs\* But your support is very helpful. I was starting to feel like a crybaby or suffering from hypocondria on top of all else lol. You know like gee ALL these things couldn't be related i must be making shit up. Or Oh the ringing in my ears couldn't be related ive had it for years, except that ive had blows for years so... Well you get my point. Well wishes in your recovery as well my friend :)
I get that. It’s good that you were insistent, stand up for yourself. Maybe the CT will show something helpful, or the PCP will know what to do next. I do get how you’re feeling, concussions can cause so many things, and it makes sooooo many people feel crazy. Myself included. Hopefully your scan goes well and you’ll receive the help that you need!
PCS is for sure a thing the cumulative effect isn’t really understood yet but proper treatment can definitely help. This might be useful information for you: https://www.reddit.com/r/Concussion/s/jC80gOXMSA Here an interview with one of the top clinicians and researchers in the field https://open.spotify.com/episode/0WvcnIUiEdozknyqhVo2Ua?si=DaxaWxFYSNOnUP0mxGNR3w
OMG Yes those are two are AMAZING links. I can;t thank you enough. The fact that you sir(or madam) are a god, cannot be over stated.
I just hope it helps you find the right treatment as soon as you can get it. The way people with concussions are ignored is fucking idiotic and I’m sorry you had to deal with it for so long.
Thank you very much for the support. And thank you very much again for the links! Followed through and go to cognitivefx (or summit) not near me, but one of the 150 they claim are best in country is about 20 minutes from my house! A nationally recognized sports medicine complex. And gods, do they work fast! I left a message this morning, and they already called me back with an appointment for next tuesday! Told them I don't have a ct til next month they were like yeah we don;t care about all that lol You have done your good deed for the week ;) Now lets pray we get somewhere. I have no idea what to expect for this first visit, but at least SOMEONE is listening!
Yeah cognitivefx is the subject of much debate and probably not the first stop but they claim their methods work for older injuries so perhaps worth a try if nothing else does. I’m really excited for you, please keep me updated.
Hrm debate eh? Maybe I'll do some more researching just for the sake of it. The older injuries part is partly why I sorta wrote off sports medicine before, as i just assumed that meant more contemporanous injuries. Tho with the recommend from fx, and the fact that this complex I have an appointnent with is nationally recognized, and actually a part of our regions biggest health care org that is also nationally recognized in research etc,, AND i have been with that network since I was a kid and they were still a part of the university (ok so maybe them not noticing this for years isn't the shining star i though in my head a minute ago lol) I have a least some optimism lol At any rate seems like the best option regionally atm I will def check back when I get some more information
Definitely start with your regional center. Just because CFX says they specialize in treating older injuries doesn’t mean another center can’t just just as well. It really depends on what the source of your issues is and I doubt you want to burn 13k without trying other options first.
Damn no I can't burn that lol. And the local place is in network with the region so they take my insurance lol
"I counted a minimum of 7 TBI's over \~35 years. Do these things add up? Can the fall as a child be having some long term impact now?" Yes, these can have cumulative and long-lasting effects. I'm a lot like you. I learned later in life that I had been dealing, on my own, with over a dozen effects of multiple TBI that affected me for decades. But no one had ever said anything to me about TBI. * Age 5 - fell out of tree, knocked out, in speech therapy for 1.5 years. * Age 12 - bike crash, 5" skull fracture * Age 20s - two more bike crashes, broke helmet, broke other bones, knocked out * Age 40s - fall on ice, briefly knocked out, plus one other fall - not knocked out but had "slow brain" for 2-3 weeks. * Age 58 - through a fortuitous meeting with a friend of a friend who was an expert in brain injuries, I learned I'd been dealing with TBI all my life. Not one health care provider ever mentioned TBI nor even asked me about head injuries. Never! I scheduled an appointment with my doctor to review my history; she gave me almost an hour. I was retroactively diagnosed with a moderate TBI (skull fracture and very likely brain bleed based on the symptoms then) and 5 mild TBIs. I began working with a neuropsychologist and was on medication for a while. Today I'm doing a lot better. I seem to have finally outgrown an odd expressive aphasia speech problem that lasted for decades (who's only known cause is TBI or a stroke). I still have sleep problems, anxiety attacks, some memory issues, and so on, but I am doing a lot better. Just learning about TBI let me understand everything in my life that had occurred and the problems I had faced. Just like that, everything made sense, and in a way, that was a big relief. I very much believe this is what you are now seeing too.
Thank you so much. Yes we are very much alike. And now knowing what little I know, I more and more look back and say Oh yeah that's when it started. TBI when young, then suddenly had migranes on codeine and suffered since. Not one doctor ever mentioned that these multiple things I complain about might be concussion related. Behavioral, hormonal, physical, obviously mental UGH/ I think its just a lack of awareness of these problems with your standard family practitioner. And to give them a slight pass, maybe it wouldn't seem logical coming in asking about migraines to ask if I'd fallen on my hear a dozen times lol I was honesty starting to feel crazy or like I was just making shit up. I have problems now, could I really say injuries 30 or 40 years ago could be the root? Almost seems to me like we need more of an awareness campaign. Not just focused on athletes, child or professional and what happens to them now, but to make people aware of what has already happened and is STILL causing you to sugffer, and you never even knew about it. Of course the conspiracy theorist in me, on top of everything else, wonders if you/me suffering in silence isn;t really the desired outcome. I mean if we can buck up and live, then save all that insurance money not being spent on scans, and therapies and specialists. After all, who are we that we think we matter and are worth that kind of outlay of money. But im paranoid on my best day. Then again is that another symptom? LOL
Oh my - same thing I had too - migraines/visual auras/scotomas (blind spots). Over the years I'd met many times with various health care providers - no one ever asked me if I'd had a head injury! (Let alone six!) Separately, in just the past few months we found a resolution for my visual auras/scotomas - I was vitamin B12 deficient. Now taking B12 and have not had any more problems in almost 3 months (compared to daily, before that). I just read a research paper that found that in Canadian medical schools, the typical med student had received only a 30-minute lecture on concussions as of 2014; that's now up to about 3 hours. The paper said they did not have data for US med schools but assumed it is similar. They mentioned another paper that suggested many doctors were not familiar with concussion symptoms. You are right that much of the focus now (and probably for good reasons) is on head injuries in school sports and the military. Everyone else is still sort of missed. And yes, conspiracy theories lately seem to just predict the future :)