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


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Old 02-12-2009, 01:59 PM #21
PCS McGee PCS McGee is offline
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Originally Posted by shezbut View Post
Hi PCS McGee,

You have had a very interesting experience. Great that you've gotten through that negative thought cycle! Any idea how that occurred? Did you have to practice "letting go", or did it just begin to happen for no apparent reason?

A little off track, but have you also had chronic urticaria or angioedema? Which led to discovery of sensitivities and/or allergies, thyroid difficulty, and deficiency in vitamin D? If no, never mind

Thanks for sharing!
Shez
Physical healing and psychological healing are closely intertwined with one another. It's been my experience that as the physical body heals the psychological body lets go of the memories tied to those physical injuries.

Still, it took some effort on my part to let go of all of this stuff. With me, work (physical/emotional therapy) had to be done to get my body to a place where it could actually move on to some degree, but I also had to make a choice to move on as well. That's a large part of the reason I stopped using this site for a long while, because while the support from a place like this is nice, it certainly doesn't encourage you to not think about your injury all the time. There's a certain danger in support groups... while they can ease the mind that there's other people out there who share your same problems, they can also lead to people taking on their problems as a part of their identity. You no longer just see yourself as "a person", you now see yourself as "a person with PCS". If you intend to heal from your injuries, that's not a good place to be.

As far as those other conditions are concerned, no, I've never had to deal with those.
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Old 02-13-2009, 12:32 PM #22
PCSMom PCSMom is offline
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Originally Posted by benjamin View Post
People do recover from PCS. The statistics I have seen tell me that 99% are recovered in a year....what does that mean?... I just wish someone would post on here and tell us all about their complete recovery!!!
Benjamin:
Forget statistics. It can be so frustrating, after looking forward to that year mark, to being let down when you still have symptoms. Appreciate all the progress you've made. At one point during my daughter's recovery I reconciled to the fact that her life would never be the same as it pre-injury, but with certain modifications she's lead a very fulfilling one. Now, 3 years post-injury, she is fully recovered. It feels fabulous to say that; I never thought those words would come out of my mouth.
I wish you luck.
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Old 02-14-2009, 05:08 PM #23
Mark in Idaho Mark in Idaho is offline
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Default Variables of recovery

Benjamin and others.

Do not get caught up in the jargon. PCS is a part of TBI or MTBI. MTBI is not necessarily a part of PCS. There are traumas other than concussion that can be called MTBI or TBI.

I count a high fever in my concussion history. In college, I had a fever in excess of 106 degrees F. I was aware of my surroundings but was paralyzed. The high fever paralyzes the nerve function to the muscles. I was laying in bed shaking. I know that it affected me just like a concussion so that event could be called a MTBI, the trauma being temperature. Fortunately, I was able to use my shaking to fall out of bed so my roommates would take me seriously am touch me. They might have saved my life by cooling me down with wet towels.

The insurance and health care industry tries to turn everything into a statistical model. Remember what a wise man once said; There are lies, damn lies, and statistics. Insurance companies and health care organizations use "statistics" to try to deny benefits to the patient. My supervisor when I got hurt said that I could not get hurt from stepping off a 6 inch curb unexpectedly, especially since I was only carrying a garbage bag full of light papers from an office. Well, the physics formulas compute out to show that that same fall with one-eighth inch of shock absorption in my boot and body would transfer a force of 65 G's to my head. If my head weighs 8 pounds like normal, then it impacted my neck with a weight of 520 pounds. So much for statistics and their use to develop a "rule of thumb." That one small step changed my life forever. No more driving, no more power saws, no ladders, to noisy crowds. Not much of what you would call a normal life.

Anyone who tries to generalize about the injuries by relating it to the force of the impact is truly uninformed. This is common for even neurologists.

The neuropsych exam is great except if the battery of tests used is not designed to show a brain injury. The MMPI-II is often used to say the patient is suffering from depression, not a MTBI. It can be dead wrong. Find and read Lloyd L. Cripe's work on the MMPI and MTBI.

Read Dr. Dorothy Gronwall's work. She is a Kiwi (New Zealand). We lost a great mind when she passed away in 2002 , I think from a stroke. She knew her stuff. She developed the PASAT (Paced Auditory Serial Addition Task). It is still widely used with head injury diagnosis. She worked at a Brain Injury Clinic/Research facility I think. Her work showed that there is never a complete recovery from a concussion.

Robert Thatcher Ph.D has done great work with the Qeeg. It is a valuable tool because it is not subjective like the other tests. I have similar problems like a previous poster. The back of my brain operates at 25% power while the front operates at 10x power. It is like trying to pass something between two cars, one doing 100 mph, the other doing 2.5 mph. The corpus colosum, the main switchboard in the center of the brain goes haywire trying to pass the information to the proper lobe.

It also regulates or filters the information it passes on. It deletes extraneous sounds or stimulus and only passes on the important info. With MTBI it often lets all of the information through, flooding the brain with too much information. My neuro noticed from my Qeeg that "You hear everything." this was without reading my neuro history, just the Qeeg. He was exactly right. So I often wear ear plugs.

As PCS McGee said, forums can be a problem. I find them helpful to get understanding and learn work-arounds. It also help to know that everybody with a MTBI gets passed off by the medical or insurance companies.

With forums, we can get support to stick it out to get proper diagnosis, treatment and benefits. From forums and other research, I know more about concussion than most neurologists and neuropsychs. they deal with statistical models, not the individual. They may say that only one person out of one hundred have problems that persist, but to that one person, the problems are one hundred percent. Somebody eventually wins the lottery. Sometimes small amounts, sometimes mega amounts. Some MTBI's have small residual components, for a small number of us, the residual is devastating. The statistics mean nothing to us.

There have been many good posts in this thread, especially from the old timers. Never deny the wisdom and insight of older people.
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Old 02-15-2009, 08:07 AM #24
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Default thanks mark

thanks mark

my battle is with welfare and the CICA, I was an engineer so I tend to want to look at my self as a machine thats damaged and look for ways to fix it I will read up on the kiwi doc I am a kiwi as a nation they tend to think out of the box,
the biggest thing for me is people think to have brain damage we are slow mentally this may be true but for me it functionality, sequencing, balance, tremors, head pain, visual confusion of objects , tinnitus short term memory ect but my higher function is still there

another wise man once said .except the things we cannot change, but change the things we cannot except

people can and do recover normality in the lives .but the scars, like any injury remain but fade with time
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the light connects the many stars, and through the web they think as one, like god the universe we learn about our self's, the light and warmth connect us, the distance & darkness keep us apart
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Old 11-10-2010, 07:11 PM #25
hachumi hachumi is offline
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Default full recovery stories - yes, please...



hi, i'm new to this site. not exactly sure how to start a thread, but i have come here for stories of connection and hope.
in january 2010 i was laying on a living room, hardwood floor and one of my twin toddlers threw a wooden truck/toy at my head. it hurt. then he did it again. i got up off the floor, learning my lesson, and did not loose consciousness.
that evening i experienced crazy, crazy vertigo and nausea. the next morning i had vertigo and nausea as well and just did not feel right.
docs thought i had bppv, but after going to see a physical therapist who specialized in balance issues, he tested me and asked if i was hit in the head.
my symptoms got worse over the next weeks.
i couldn't sleep for more than a few hours a night. i had intense noise and light sensitivity. i had dizziness and motion sickness. i had to lay in bed in a quiet dark room most of the day. and i had migraines.

the most challenging part of recovering from this injury has been the lack of clear trajectory in recovery. i feel powerless and borderline hopeless.
recovery has been like one step forward, and five steps back.

after the suggestion of my pt, i went to a neuro-optometrist who diagnosed me with convergence insufficiency, my depth perception is off and my eyes just don't teem together well. i've been doing vision therapy weekly.


it has been ten months post injury. some symptoms have gone away. mostly i get triggered visually very easily which makes me feel motion sick.

i don't really have migraines anymore. i do best if i get a nap every other day. i don't have light sensitivity anymore, and if i have a night of poor sleep i take a half of a clonezepam (sp?) and it gets me back on track.
i've done acupuncture, craniosacral therapy, and i'm seeing an osteopath now. i don't see my pt anymore because my balance has pretty much been restored.

most days i just feel a general malaise - an exhaustion. i get motion sick easily. and i'm still sensitive to loud noise. now that i'm doing better i realize how cognitively impaired i have become. lot's of things that used to be easy feel like algebraic equations. i'm headed to my doc next week to get a neuro psych consult for that.

so, yeah, i've come a long way since january, but i still feel like i have a ways to go.

thank you for posting this thread.
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