Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 04-02-2012, 04:10 PM #1
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Default My neurologist sucks.

I'm serious...Every neurologist I've seen so far has done nothing for me.

You know, I understand there is no magical brain injury pill...but let me tell you something. Not one of the 3 neurologists I've seen have given me any advice, they haven't told me to avoid stress, nothing about vitamins and nutrition and they don't seem to care or have any answers when I tell them I'm getting worse.

My appointments are like this...I walk in the room, the neurologist says hi, what's going on? I tell him my symptoms and he says "You have post-concussion syndrome, bye have a nice day". That's been the case with all 3 doctors I've seen.

If it wasn't for NeuroTalk, I wouldn't know anything about brain injury and how to maximize my recovery.

So, thank you NeuroTalk and everyone here that has ever given me advice and/or posted a useful link about brain injury. If it wasn't for you guys, I'd probably think I was losing my mind.
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 04-02-2012, 04:16 PM #2
Scott in Fenton Scott in Fenton is offline
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Are these work comp neuros? Neuros on the whole aren't much use to PCS sufferers, but when they work for the work comp insurance companies, they don't even try. at least, that's my experience.

You should try to get to see a neuropsychologist; I had to get a lawyer to get into one. I'm going in for an evaluation at the end of this month that is expected to take 6 hours. My neuro? 15 minutes. And half the symptoms I complain to him about are not really symptoms according to him. he's a putz.
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Old 04-02-2012, 04:20 PM #3
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Yeah I feel exactly the same, bunch of charlatans. I'm currently reading a book published in 1989 which is pretty much spot on and full of amazing information, evidence and advice. It seems as though medical knowledge with regard to head injury must have gone backwards since then

I sometimes wonder if they are equally ignorant about other neurological conditions such as Parkinson's, or whether they singled our problems out as particularly unworthy of their attention.

I'm an occupational therapist, been working in mental health up til now but I'm going to go into neuro and do something about this in my own little way.
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Old 04-02-2012, 04:28 PM #4
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Quote:
Originally Posted by Scott in Fenton View Post
Are these work comp neuros? Neuros on the whole aren't much use to PCS sufferers, but when they work for the work comp insurance companies, they don't even try. at least, that's my experience.

You should try to get to see a neuropsychologist; I had to get a lawyer to get into one. I'm going in for an evaluation at the end of this month that is expected to take 6 hours. My neuro? 15 minutes. And half the symptoms I complain to him about are not really symptoms according to him. he's a putz.
Nope, I didn't get hurt on the job.

I was a victim of a random assault.

I don't have insurance to pay for a neuropsychologist. I have something called Victims of Crime, but the funds are limited...and they are going to want a neuropsychological exam (not sure if that's what it is called)...Those are really expensive. It would probably wipe me out of my VOC fund and leave me with nothing for the rest of my recovery.

Question for anyone who has had a neuropsych exam...what is the purpose of it? What do they do after they find out what areas your struggling in? I don't think I want someone to tell me how badly I'm messed up...and not do anything to help me with it, you know? LOL. I heard the test is pretty extreme...it would probably leave me in bed for 2 weeks after. Not worth my time, money or effort.
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 04-02-2012, 04:35 PM #5
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I have had the same experience with my neurologist, he doesn't know or he doesn't care.

It gets even worse than that. I went to see the post concussion work group in the Danish center for brain damage rehabilitation. They want me to participate in a new research program where they use physical therapy like weight lifting and cardio training to see if people suffering from PCS improves.

I asked them if they wanted to try the buffalo university sub symptom threshold recovery program themselves, but of course she never heard of it. Their plan was to make people exercise a lot and do weight lifting 3-4 times a week for 20 weeks to see if they got better. I kindly had to explain to her that exercise actually makes it worse unless it is strictly monitored. Well she never heard of that and they didnt plan on monitoring anybody

Good luck with that...
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Old 04-02-2012, 04:37 PM #6
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Next time you see a doctor, Try this:

I suffered a severe concussion last year with a brain bleed. I understand there is no quick fix or magic pill but I am struggling with my symptoms. I am looking for someone who can help me manage my symptoms. Can you help me? Or do you know someone or some place that can?

Rehearse this. Doctors want to be appreciated and like to know they have a direction to try to take their patient.

I wonder if you could be seen at the University of Nevada School of Medicine Clinic in Vegas to begin a study with some med-students/interns. I don't know if this is available but worth asking. Too bad the School of medicine is in Reno. That would be a worthwhile place to try. Teaching hospitals sometimes can assign a group of interns to work with you on a longer term.
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Old 04-02-2012, 04:38 PM #7
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Default Hi Nwsmith

So sorry your luck with Neurologists hasn't been good. Wish you lived near by, I would recommend mine. My first one however was a different story. I hope you heal fast, and that you continue to post and let us know how you are doing. NT has been there for me too, it is why I never left. ginnie
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Old 04-02-2012, 04:39 PM #8
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Quote:
Originally Posted by GlassHead View Post
I have had the same experience with my neurologist, he doesn't know or he doesn't care.

It gets even worse than that. I went to see the post concussion work group in the Danish center for brain damage rehabilitation. They want me to participate in a new research program where they use physical therapy like weight lifting and cardio training to see if people suffering from PCS improves.

I asked them if they wanted to try the buffalo university sub symptom threshold recovery program themselves, but of course she never heard of it. Their plan was to make people exercise a lot and do weight lifting 3-4 times a week for 20 weeks to see if they got better. I kindly had to explain to her that exercise actually makes it worse unless it is strictly monitored. Well she never heard of that and they didnt plan on monitoring anybody

Good luck with that...
Yeah, that wouldn't go well with me. When I do anything physical, such as exercise, lift something heavy, run/jog, push a stroller for a long period of time, etc...My cognitive functions are wiped out immediately.

We just moved on the 31st...and I couldn't even carry small stuff up the stairs without it screwing me up. I felt so disabled...
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 04-02-2012, 04:45 PM #9
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Interestingly, I've had very good advice from Occupational Health doctors and nurses, who I had previously assumed were there as some sort of evil medical wing of HR whose function was to help my employer enforce a punitive sickness policy.

They seem to understand head injuries far better than neurologists, and to be able to give good advice which actually helps the healing process in general as well as my return to work. Big up to Occy Health!
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mTBI March 2011, spent around a year recovering.

Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
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Old 04-02-2012, 04:49 PM #10
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Quote:
Originally Posted by Mark in Idaho View Post
Next time you see a doctor, Try this:

I suffered a severe concussion last year with a brain bleed. I understand there is no quick fix or magic pill but I am struggling with my symptoms. I am looking for someone who can help me manage my symptoms. Can you help me? Or do you know someone or some place that can?

Rehearse this. Doctors want to be appreciated and like to know they have a direction to try to take their patient.

I wonder if you could be seen at the University of Nevada School of Medicine Clinic in Vegas to begin a study with some med-students/interns. I don't know if this is available but worth asking. Too bad the School of medicine is in Reno. That would be a worthwhile place to try. Teaching hospitals sometimes can assign a group of interns to work with you on a longer term.
Thanks...I'll try that next time. I've said something similar before...like, I know there is no magic brain injury pill...but I was wondering if there is anything you can do for me, as far as improving my recovery.

They don't seem to have any answers for me.

So, I shall continue my search for the perfect neurologist...or one that has successfully treated patients with a brain injury. One that actually cares...I'm sure I'll be looking for awhile ...
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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