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

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Old 05-15-2012, 07:55 PM #1
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Default Question about getting worse while in therapy.

For those of you who are in therapy or have gone through therapy, did you get worse during treatment? The first week of therapy was awful...but the following week was probably the best I'd ever felt since the injury. Every week after got worse and worse, until finally, this last Friday my brain finally broke down.

My brain has been in a really awful state since that day. I'm not really sure if its getting any better, and I'm not getting the proper rest I need to recover since the therapy I'm attending is an intensive day treatment program. Which means, its like a job. I'm there 5 days a week, 6 hours a day.

I'm improving, for the most part. I no longer get confused, I'm able to handle being in grocery stores now, my memory is improving, my anxiety has been at an all-time low and my attitude is extremely positive...but I'm starting to notice a decline in my ability to express myself verbally? I'm a little concerned that this might be too much for me, and I'm not getting the proper rest I need in between sessions.

I've expressed my concern to the rehab coordinator and case manager, but they seem to think pushing through is beneficial. Apparently, they've had success in doing so with all their clients. I got chewed out the other day for taking a break outside during a session.

Is getting worse during therapy normal? I know that I've read that somewhere.

Thanks for your input in advance. I wish you all Godspeed in your recovery.

Nick
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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 05-15-2012, 08:04 PM #2
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I don't know Nick - I never got the intense therapy that you are getting. You're very lucky! I think I've read that only about 20-25% of people who need that kind of rehabilitation actually receive it.

It sounds like you're really making vast improvements in many areas and only suffering a decline in one area. Albeit, it's a very noticeable area and probably frustrating for you. But think back a few months and try to remember how awful it was for you to be doing so many things that you can do now!

My guess at advice for you based on what you posted here, would be that your communication skills will pop back into place once everything else is working better. It's probably taking more of your energy to work on those other cognitive skills that are improving and that energy is coming from the energy that your brain uses for communication. So, once those areas are doing tip top again and need less energy because they'll be more healed, then you'll be able to communicate again.

I'm actually really happy that you are improving so much in so many areas!!
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Old 05-15-2012, 09:17 PM #3
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I believe you when you say only 25% of people who really need that kind of therapy actually receive it. I've spoken to many people with brain injuries and I'm the only one I know that's receiving intensive therapy.

Its truly a blessing. And your right, thank you for pointing out that I'm showing improvements in many other departments. Like you said though, its frustrating!!! I wish I'd improve in every department. But then again, if this was a perfect world, I'd be living in a mansion without a brain injury.

Thank you for your input, Kim.

Cheers,

Nick
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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 05-15-2012, 09:33 PM #4
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For what it's worth, Nick, I can see a big improvement in your ability to express yourself verbally, compared with your posts from 2 or 3 months back. I realize that I can't tell how much effort it takes on your end to get the words out, but what you're writing in your posts is clearer and more articulate than what you were writing a few months ago. I think this is a very promising sign.
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Male, 39 years old, suffering from PCS as a result of being rear-ended on 1/23/11. Part-time philosophy professor.
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Old 05-19-2012, 08:44 PM #5
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Hi Nick,
I am not in the same type of therapy as you, mine is a combo of vestubular/physical therapy, but i have noticed I feel completely wiped out and even spaced out somedays (especially when we work on visual exercises).


I also tend to have a much more aggresive headache the next day. Must be from really trying to concentrate, as well as focusing eyes, movements etc.

But, I do feel the therapy is beneficial.

Take Care
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Head Injury 10/2011. Diagnosed with contusion/concussion....Now PCS with Tension/Migraine combo headaches.

Symptoms: focus/concentration issues, short term memory issues, nausia, dizziness, sleep problems, noise/light sensitivities, extreme fatigue, irritability, vision problems, slow processing, tingling in extremeties and a few more I can't remember.
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Old 05-20-2012, 11:20 AM #6
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It really sounds like you are doing great!! All those areas of improvement sound really fabulous.

I don't know if you have ever done sports training before? I haven't done much myself, but I understand there is something called interval training. They push you up to the top limit of what you can do, then you slow down *a bit* to recover and then speed back up to the top limit. Over time, this increases your top limit.

For someone who is training to run, for instance, you might jog, then sprint for a short while, then jog again to recover, then sprint again. You wouldn't stop and lie down on the pavement in between sprints; that wouldn't help increase your conditioning over time. Of course you feel winded and worn out while you're jogging -- you've just been sprinting! But over time it will gradually increase your capacity so that you'll be able to run faster and farther.

So maybe what they are asking you to do is to let your brain "jog" or "walk" in between work sessions instead of lying down on the pavement?
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mTBI and PCS after sledding accident 1-17-2011

Was experiencing:
Persistent headaches, fatigue, slowed cognitive functions, depression
Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload
Sciatica/piriformis syndrome with numbness & loss of reflex


Largely recovered after participating in Nedley Depression Recovery Program March 2012:

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Eowyn Rides Again: My Journey Back from Concussion

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Old 05-21-2012, 12:42 PM #7
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Hi Nick. I remember when I was in intensive speech and occupational therapy. I wouldn't describe my feelings as "getting worse" over those weeks, but I do remember getting frustrated and tired. It felt like a job to me too, and in a sense it was. I was still in-patient neuro-rehab, and I had physical therapy as well as occupational and speech therapy every day, Monday – Friday.

I remember after a couple of sessions of getting the day, month and year wrong in speech therapy I made myself repeat it over and over before I went to my next session because I knew the therapist was going to ask me again. The therapists pushed me too, and now I’m glad they did. I saw progress (as have you), and that helped mitigate the feelings of frustration and fear.
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What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was a severe traumatic brain injury and multiple fractures (skull, pelvis, ribs). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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