TBI & PCS articles, research & other useful links
 

As this Forum for Post Concussion Syndrome & Traumatic Brain Injury is a recent addition to NeuroTalk, here are some PCS threads that have run on some of our other forums

Please Help - NeuroTalk Support Groups

post concussion syndrome - NeuroTalk Support Groups

more post concussion problems - NeuroTalk Support Groups

Post Concussion Syndrome? - NeuroTalk Support Groups

Please add any useful websites or other resources on PCS here
thanks

Lots of good info on the wikipedia page. Check the references section at the bottom.

http://en.wikipedia.org/wiki/Post-concussion_syndrome

TBI articles, research & more useful links
 

www.braininjury.com/research.html
Cocoa & brain function and other
TBi articles, research , info.

http://www.tbiguide.com/

I found loads of great useful information here!! Worth checking out!!

Hope all are doing well...
:grouphug:

"Mild" TBI...:
 

understanding, manifestations, (inc. Post Concussive Syndrome) treatments...
http://archinte.ama-assn.org/cgi/con...ll/158/15/1617

old (1998) info but still seems relevant and comprehensive.

"Mild" TBI...
 

Thank you so much for this link. It is amazing.

PCS Resources in Alberta, Canada
 

I gained the most from getting involved with an agency (CNS - Calgary Neurorehab Services) that has 16 years experience in treating clients with brain injury. Once I surrendered and started with their program (which is comprehensive - work, home, fitness, psychological, etc), I finally started to make AND KEEP my progress. All the treatment cost was covered by CHR - Calgary Health Region. I wish I would have known about them sooner, so I am posting this in hopes someone will benefit.

www.alliance-cns.com

Marg N
10 months post concussion

Acquired Brain Injury--the invisible disability
 

www.braininjury.org.au

dedicated to making more visible...

Mission of this Association: "to improving Quality of Life of People living with and affected by ABI (Acquired Brain Injury)
or
people whose behavior challenges our understanding"


LOTS of info. on "acquired" brain injury includes TBI as well as other ways brain can "acquire" injury after birth
and effects

Home page portal has links to excellent, detailed info
about various aspects and impact of brain injury

Popular and Latest Content areas have links to articles and info I've not seen elsewhere

highly recommended***

Very helpful links :)

try not to do to much
 

see link



http://www.utahinjurylawblog.com/200...aumatic_1.html

Brain Injury Checklist
 

Here is a link to a great checklist of symptoms. It is important to track your results from behavior modifications and other responses to symptoms. We learn to help ourselves heal better that just a therapy program.

http://www.headinjury.com/checktbi.htm

please See link for USA
 

please see link for USA http://www.biausa.org/stateoffices.htm

Headway uk
 

please see link to headway UK http://www.headway.org.uk/

Everyone should get vision testing if you've had a tbi/pcs
 

Hi Everyone,
After 13 months of suffering with mtbi, & pcs (I fell, hit my head on the sidewalk while walking my dog New Year's Eve morning 2008) I saw Yet another dr in my myriad of clueless medical professionals...a neuro-opthalmologist who diagnosed me with yet another issue...convergence insufficiency. I have not been able to drive for over a year now due to depth perception issues nor read very well - eyes jump / cognitive issues etc. Daily headaches! Public places, especially the grocery store are hell...visual & hearing issues etc. Google-ing "convergence insufficiency" I found a site "NORA" (Neuro-optometric rehabilitation association) that deals with vision issues after tbi/pcs. This sent me to a Behavioral Optometrist who not only confirmed the convergence insufficiency but also diagnosed "Post Traumatic vision syndrome" PTVS, which can occur from a tbi. ??? and my dr's never told me this??? After official vision testing (not the typical 20/20 eye chart whihc I'd already done - futily I must add) I was diagnosed as processing at a 7 year old level (I'm 57 - was smart & articulate b.f.(before fall)) along with issues with my ambient vision. In addition, I found another site neuroskills that deals with tbi/vision issues etc. That site under the vision section has several articles explaining the PTVS and also the issues that occur when ambient vision is skewed. These articles described my issues EXACTLY!!! I am on to something now....
I'm beginning vision therapy in 2 weeks...am hopeful that I found the right direction to help correct or at least improve my issues. I'll post back after a few sessions to update everyone.
At the very least...find a behaviorial optometrist that can check your vision for these possible issues and offer a treatment program.
Can anyone explain why the medical community refuses to look at these other alternatives....needless to say, I'm frustrated and disgusted with most (not all) medical dr.'s. and am convinced I'll have to find the right therapy/programs myself as the dr's are clueless
Thanks for listening!
Anneteaem

Minor Head Injury Discharge Advice - Adults
 

Minor Head Injury Discharge Advice - Adults
On returning home it is important that, if possible, you are accompanied by a
responsible adult. While unlikely, there is a small risk of developing complications,
so if you experience any of the following symptoms in the next few days you
should return to A&E as soon as possible.
● Loss of consciousness
● New deafness in one or both ears
● Loss of balance or problems walking
● Any weakness in one or both
arms or legs
● Any vomiting
● Clear fluid coming out of your ears
or nose
● Drowsiness when you would normally
be wide awake
● Increasing disorientation
● Problems understanding or speaking
● Blurred or double vision
● Severe headache not relieved by
painkillers such as paracetamol
● Bleeding from one or both ears
● Any fits (collapsing or passing
out suddenly)
● Inability to be woken
Dos and Don’ts
DO make sure you stay within reach of a telephone and medical help in the next few days
DO have plenty of rest and avoid stressful situations
DO show this factsheet to a friend or family member who can keep an eye on your condition
DO take painkillers such as paracetamol for headaches
DON’T stay at home alone for 48 hours after leaving hospital
DON’T drink alcohol until you feel better
DON’T take aspirin or sleeping tablets without consulting a doctor
DON’T return to work until you feel ready
DON’T play any contact sport for at least three weeks without consulting your doctor
DON’T return to driving until you feel you have recovered. If in doubt consult your doctor.
While most people recover quickly you may experience some of the following
symptoms over the next few days and weeks, which don’t require a return to
hospital:
● Headaches
● Feelings of dizziness
● Nausea
● Sensitivity to light
● Sensitivity to noise
● Sleep disturbance
● Memory problems
● Irritability
● Restlessness
● Impulsivity and self-control problems
● Difficulties with concentration
● Feeling depressed, tearful or anxious
● Fatigue
● Difficulties thinking and problem-solving
In most cases these symptoms will resolve themselves within two weeks. However,
in some cases they may persist much longer. Try not to rush back into normal
activities, as this may delay recovery. If you still have any symptoms after two weeks
we suggest you see your GP and take this factsheet with you. It may be possible to
seek referral to a head injury specialist such as a neurologist or neuropsychologist.
For medical advice, contact your GP or call NHS Direct on 0845 46 47
in England and Wales, or NHS 24 on 08454 24 24 24 in Scotland.
For further information, support and contact details of local Groups and Branches

FREE Pdf manuals/booklets abotu tbi
 

Lash and Associates provides free PDF downloads of manuals and booklets with information for survivors, families, caregivers, and clinicians on traumatic brain injury.

http://www.lapublishing.com/blog/cat...pdf-downloads/

FREE Pdf manuals/booklets about tbi
 

Lash and Associates provides free PDF downloads of manuals and booklets with information for survivors, families, caregivers, and clinicians on traumatic brain injury.

http://www.lapublishing.com/blog/cat...pdf-downloads/

Pituitary Damage
 

I caught bits and pieces of a show on TLC called "Mystery Diagnosis". The episode was about a girl who had a mild head injury. Some time later she had major symptoms of fatigue, etc. After something like 4 years her docs finally figured out her pituitary gland was damaged in the car accident.

I will post a link to the site here, although I don't think this episode is available for viewing yet. Keep checking back if interested...something to look out for for sure!

http://health.discovery.com/tv/mystery-diagnosis/

TBI Survival Guide by Dr Glen Johnson
 

TRAUMATIC BRAIN INJURY
SURVIVAL GUIDE
by
Dr. Glen Johnson
Clinical Neuropsychologist
5123 North Royal Drive
Traverse City, MI 49684

(231) 929-7358
(e-mail) debglen@yahoo.com
(Web Site) www.tbiguide.com

Upper Cervical Adjustments (c1, c2- atlas/axis etc)

http://www.upcspine.com/self.htm

http://www.nucca.org/patients.php

http://www.upper-cervical.com/


a variety of videos showing upper c adjustments -
http://www.google.com/#hl=en&q=upper...586614e6107c47

Helpful Books about MTBI aka "concussion"
 

I've seen quite a few recommendations for Brainlash by Gail Denton, I did find it helpful.

I found two other books that I even thought were equally helpful information-wise:

Understanding Mild Traumatic Brain Injury (MTBI) Edited by Mary Ann Keatley PhD, CCC and Laura L. Whittemore (A Brain Injury Hope Foundation Publication)

Mild Traumatic Brain Injury: The Guidebook by Mary Lou Acimovic, M.A, CCC-Sp

They are well organized and formatted for people with issues like us. :winky:

Interesting PDF!
 

I enjoyed reading this and learned some new things from it:

http://www.healthpsych.com/tools/tbi.pdf
:)

The Colorado Department of Labor document on TBI should be considered carefully. Much of it is extremely out of date. It has some very serious errors. And, it has some biases that favor the Workers Comp insurance company against the injured worker.

I was appalled as I read it. For example, It says that mTBI injuries recover within 12 months with very little room left for consideration of longer or incomplete recoveries. This is a common bias held by the Workers Comp insurance industry.

It's strength is for the severe TBI injured worker who is left comatose from their brain injury. The mTBI issues are very poorly understood. This is quite common for a government bureaucracy.

I consider the document to be of little value to the injured person or their family. Even professionals should read it with skepticism .

Q&A with Canadian concussion specialist
 

A recent CBC interview with a highly-regarded neurosurgeon and concussion specialist in Toronto, Canada:

http://www.cbc.ca/news/health/story/...-tator-qa.html

I found this link useful with current updates all around the world (many from U.S). The information is concise and current and they frequently update. You can read through it quickly.


http://www.seriousinjurylaw.co.uk/ne...njury-News.php

VERY interesting article on the impact of concussion on the thalamus. Also offers some suggestions to facilitate healing!

This makes a lot of our anecdotal experience and things like the graduated return to activity program make neurological sense.

http://www.wellnessresources.com/hea...tes_take_note/

pituitary damage after brain injury
 

[QUOTE=PCSLearner;679472]I caught bits and pieces of a show on TLC called "Mystery Diagnosis". The episode was about a girl who had a mild head injury. Some time later she had major symptoms of fatigue, etc. After something like 4 years her docs finally figured out her pituitary gland was damaged in the car accident.

I will post a link to the site here, although I don't think this episode is available for viewing yet. Keep checking back if interested...something to look out for for sure!


Yes, I read a case of a mild head injury ('Evolving Hypopituitarism as a consequence of traumatic brain injury in childhood - a call for attention' by Medic-Stojanoska) where a girl fell off a bed aged 7 without even losing consciousness, and as she grew up, one by one her pituitary hormones failed, causing her to fail to grow, to become fat, and cognitively impaired. I think it took till she was about 20 before she was diagnosed. Pituitary damage after head injury is very common and terribly under-diagnosed. There's a systematic review by Schneider (2007 JAMA) which finds that 27.5% of head injury survivors have this complication. It can cause loss of libido, infertility, weight gain (like the girl above), fatigue, depression - we think undiagnosed post-traumatic hypopituitarism lay behind our 31-year-old son's suicide three years ago. The good news is that pituitary damage can be treated with replacement hormones.

Repost of basics of recovery
 

Welcome to NeuroTalk. Sorry for your reason for being here but you have found a good place.

The simplest way to describe rest as needed for a concussion is to do nothing that has an agenda, whether it is a time limit, productivity goal, trying to meet others expectations, etc. In the early stages, it literally means resting or napping.

A good schedule would be something like this.

Get up in the morning.

Take a shower or do whatever you do first thing after getting up. Do it without any time constraints.

Have a good breakfast. This should include good nutrition and supplements such as B vitamins, Omega 3's and all of the anti-oxidants.

Avoid caffeine. You do not need to have a chemical wake you up. Let your brain decide to wake up. Also avoid MSG and anything with processed soy. The glutamate is counter to brain healing.

Some very light reading or TV viewing like watching the weather report can be OK. Do not push this routine to 'feel normal.'

Maybe do some household chores. Nothing strenuous. Clean up the kitchen, etc. Get the hubby off to work and kids off to school with as little stress as possible.

Sit down and relax. Maybe play a few hands of Solitaire with a deck of playing cards. This should not be strenuous. Just some manual stimulation with some gentle visual stimulation. Again, no pressure. Just relax and go through the motions.

If at any point, you feel spacey or have trouble focusing with your eyes, stop and relax with your eyes closed. Maybe listen to some quiet music, with head phones or ear buds if possible. Keep the volume low.

If you feel like you are going to doze off, do it in a comfortable spot with good back and neck posture. Neck injuries are common with concussions.

When you feel up to it, get up and do some more simple tasks or activities. It is better to keep you hands busy that your brain. Simple manual activities are great therapy. Sewing, knitting, playing cards, polishing silver (no harsh smelling chemicals) anything with more manual involvement that mental. Your hands can not go fast enough to over-stimulate your brain, except if you try to play video games. Playing a musical instrument may be a good activity.

A low key walk can be OK but be sure to take short laps so you do not find yourself too far from home and needing to rest. Good resilient shoes are best to limit the jarring from planting your foot with each step.

Follow a similar routine with lunch and dinner/supper. Moderation in any and all activities. Family needs to be fully involved in keeping the chaos to a bare minimum. No loud music or TV's or video games blaring.

Healing is a marathon, not a sprint. The cognitive issues may take quite some time to get better. The head aches, too, but keeping stress low can help with the head aches for some PCS sufferers.

If you have a good day, be thankful and plan to lay low in hopes of having another good day. One good day does not mean a recovery. Sixty good days in a row may be a good sign of recovery but not an excuse to go overboard with activities.

Listen to you brain and body, if you don't feel up to an activity, don't do it. If you get any feeling of being spaced out, stop and rest for the rest of the day. Note what you were doing before the spacey feeling came on. It is likely one of many triggers of your PCS symptoms.

When you feel up to it, Download and print the TBI Survival Guide at www.tbiguide.com. When you have time, watch the "You Look Great" YouTube video series (six chapters). It will help if your family watches this series too. Show them the TBI Survival Guide with your symptoms highlighted.

The more people you get in your corner to help you and watch out for you, the better.

And, don't try to compare your PCS with others. There is no way to compare symptoms. Every person is different. Comparing just creates an opportunity for anxiety. Anxiety is your enemy. Rest and patience is your friend.

My best to you.
__________________
Mark in Idaho

I just came across this article about BCAA's, which are amino acids, and how researchers think when taken as a supplement that they could help people recovering from mTBI and MTBI.

http://www.naturalnews.com/027849_am...in_damage.html

Researchers are going to give people with mTBI and MTBI BCAA's in new studies.


Here's an older study where researchers discovered that BCAA's helped people recovering from Severe TBI.

http://www.ncbi.nlm.nih.gov/pubmed/16181934


I read that it's best to take supplements that are 50 percent leucine, 25 percent isoleucine, and 25 percent valine and B6 is needed to synthesize the amino acids.

If you're healing from a brain injury, your doctor has probably already told you to take a B Complex regularly and B12 daily. (My neurologist told me to!) So that's where you'll get some B6 for the amino acids. But you might also want to get a BCAA supplement with a little B6 in it for good measure.

**Don't forget to write this stuff down so you can ask your Dr. about whether you should try it. You want to make sure you talk about it with them first so they don't interfere with any drugs you might be taking, etc...

Article Post Traumatic Headaches
 

Here's a great research article on homeopathy to treat PCS, or as the article puts it "Persistent MTBI patients".

I've been experimenting with homeopathy and I have had some great leaps in my healing since I started. However, I have no real evidence that the homeopathy is what is causing those leaps, because they could just have to do with a number of supplements I am taking, or just time.

But, I thought you might like to read the article as well.

http://www.homeopathy.org/research/clinical/Chapman.pdf

Lots and lots of links to good articles here: http://www.brainline.org/landing_pag...on_results.php

And this guy particularly seems to have a clue. I really like his videos:
http://www.brainline.org/landing_pag...ichael+,McCrea

If you come across a very good PCS link / info /articles -please add it to this thread.


If you want to discuss or share your story, please feel free to make a new thread on the main TBI/PCS forum here is the link to it.
http://neurotalk.psychcentral.com/forum92.html

The Role of Mindfulness, Meditation, and Prayer After Brain Injury

http://www.brainline.org/content/200...y_pageall.html

Progesterone and its effects on tbi:

http://whsc.emory.edu/soundscience/2009/stein.html

Progesterone is very useful in brain injuries. I used to mention it years ago.

Too bad Donald Stein, PhD is trying to patent the use of progesterone in treating brain injuries. He has protected his research in an attempt to make money off the patent.

Here's a PLAN for self therapy and general advice:

http://www.givebackla.com/?cat=47

I dislike the way it is organized. I find it difficult to follow. But overall I think it's good. I do wish it could be re-organized and laid out in a way that's easier for me to read and follow.

So far, #20 seems to be especially helpful for me right now.

In some respects, I wish there were more details about what the author is talking about. In others, I want the author to stop being so repetitive and to get on with it! ;)

Two very useful articles I ran across today.

One is Guidelines for Mild Traumatic Brain Injury (MTBI) and Persistent Symptoms from the Ontario Neurotrauma Foundation: http://theconcussionblog.com/2012/03...-game-changer/

The other is an article by a nurse who suffered a TBI on how to become your own health care advocate: http://braininjuryselfrehabilitation...lthcare-needs/

Happy healing!

The ONF guidelines are an excellent overview of what the current thinking is for managing folks with concussions and PCS. If your doctor doesn't seem up to date on mTBI and PCS, I recommend that you try to get him or her to read it.