Hi Mark
My point on posting that was not to "blame" the medical community. I just think it surprising that no one was interested in studying PCS until recently. It seems like as scientists, doctors would be more interested in researching the more complex situations.

I also just wish that the doctors could be better at giving suggestions for therapies and advice on how to deal with PCS. I told my doctor every time I saw her how debilitating my dizziness was, and it took her 7 months to even mention vestibular therapy. This being my first health problem, I did not know that I had to search myself for the answers, I thought I was just supposed to rely on my doctor to make recommendations.

I agree that we can all eventually lead a full life. But I think that our struggle along the way to getting there could be greatly reduced with more support from the medical community.

Concussion have been studied seriously since the 1970's and before. The problem is the neuro and other medical communities have not spent the time to understand what this research found. Dr Robert Cantu in Massachusetts (80's and 90's), Dr Julian Bailes in Virginia (80's and 90's), Dr Gronwall in New Zealand (1970's), sports trainer researcher and professor Kevin Guskiewicz Ph.D. (early 2000's) and a number of others have been trying to get the word out but bigger players shut them down. The NCAA, NFL and NHL discounted concussions.

It did not start to change until pathologist Bennet Omalu in Pittsburg discovered and highlighted the term Chronic Traumatic Encephalopathy and was able to definitively say that concussions cause damage. His papers in 2002 and 2006 started the ball rolling. A few neuro-psychs started publishing testing systems (copyrighted to make a profit) to track concussions. Title IX sports in school matured to where more daughters were getting concussions. For some reason, there was less concern for the boys/men.

Health , liability and Work Comp Insurance companies denied care because there were no standards of diagnosis to determine medical necessity for treatment. A lot of this is because auto insurance companies spent millions discounting and fighting against those injured with persistent concussion symptoms. Diagnostic systems were deemed inconclusive.

I fought this system in 2001 with Work Comp (shut out entirely), health insurance (since 1994), and Social Security Disability (3 year fight). I was finally approved for SSDI based on a behavioral and occupational psychologists claim that i would struggle in the work force. My brain function was not even considered.

So, the information has been known for decades. The money interests have fought it and most doctors have used the false information provided by those money interests to deny our conditions. If a doctor can not justify a ICD (diagnostic) code or a CPT (treatment) code, he can not get paid. So, they label us with anxiety and give us pills and send us away.

I have lived with PCS since the mid 1960's. Nobody offered any help. I had to figure things out myself. I changed my educational direction. I further refined my business endeavors to limit stress. The issues were looked at more of as behavioral, ADHD and such. Although it was a background issue, the direct connection to PCS was not made until the early 2000's.

Even today, many family doctors are poorly informed and neuros discount us when the CT Scan and MRI is clear. So, we need to continue to advocate for ourselves.

But those with severe enough injuries don't have the mental wherewithal to do the research that many of us here have done. I have access to many peer-reviewed journals because of where I work. That has allowed me to research a medication before I fill the Rx I got from the doctor treating my concussion. In multiple cases, I have refused medications because of studies I've found showing that they act precisely counter to what I want to help heal my brain -- After I was given gabapentin, which left me with an intermittent tremor and speech impediment (luckily much less frequent a year after my two tiny doses), I found a study showing that it prevents new synapse formation. I was told it was OK to keep taking Ambien for over a year, even though there have been studies out for a few years showing that benzos and benzo-like hypnotics are not safe for folks post-TBI. These were meds prescribed by a doctor who treats athletes and people who have had head injuries from other causes.
I know multiple people in my town who have gone to our hospitals after falls, car or bike accidents, etc., and have read studies reviewing ER procedures across the U.S. -- there is no clear procedure on how to screen patients for a concussion. It can vary in the same hospital, depending on who's working in the ER. My own speech-language pathologist uses tests and guidelines prepared in Canada or for the WHO, because they are ahead of our health care system regarding TBIs.
You are right, Mark, that it's the insurance companies and liability law that have driven the dialogue on how long it's "supposed" to take for people to heal. Not actual scientific study. Since the doctors are supposed to listen to their patients, and take them seriously, I do hold them partially responsible. They take an oath to do no harm, not to save insurance providers money. If you take the number of people on this forum alone, and all of the suffering here, and multiply it by all of the other folks suffering in this country -- that's a lot of doctors seeing a lot of patients. In multiple cases with which I'm personally familiar, people didn't ask for a timeline, they were given one. And yet, even though WE all have realized that the timelines that we've been given are not correct, THEY keep giving them...and look askance at many of us when we "fail" to heal up on schedule. It is far easier for us to be looked at as malingerers and fakes than it is to admit that those timelines are simply wrong. How much additional suffering does that cause?
I know that I'm very fortunate that my situation is not worse, and that I do have opportunities to research my own care, and that even though I live alone (except for having my 13 year old son half the time) I can care for myself and work. But that's not how it is for many, many people. How many of our homeless population suffer from the effects of head injuries?

Sorry, had to vent. I am glad that finally this is getting looked at. It's a shame that it's taken so long to really be taken seriously. And in the Information Age, it's kind of crazy that it's still taking years for updated information to spread.

AlmaVera,

The other issue in play is quite simple. There are very few treatments for PCS. That is part of the problem. Doctors like to treat patients. If there is not a treatment, what is the doctor supposed to do ? They may try to treat the condition that has an IDC and CPT code. Anxiety, headaches, depression, vestibular dysfunction, etc. These are not treatments for PCS.

Serious research into PCs was done in the 1970's by Dr Dorothy Gronwall and her associates. Nobody listened because she did not find a treatment. She just identified that PCS has long term effects. She authored the PASAT diagnostic test (Paced Auditory Serial Addition Test) that has been misused by NeuroPsychs ever since. It can identify a patient who has suffered a concussive injury.

Another problem with doctors and PCS is PCS is not life threatening. No limp, no infection, no bleeding, no broken bones, no failing organs, etc. It does not reach critical mass for a concern for treatment. Many who suffer serious TBI's are considered recovered when they reach a point similar to where we are when PCS is diagnosed.

You are right about the homeless. Studies show more than 60% of the incarcerated population have signs of a brain injury. The belief is the chronically homeless population is much worse.

There is a need to be careful about research. The gabapentin and synapse comments are grossly out of context for this community. Many drugs have similar negatives. Tylenol has negatives.

Should a depressed person not take anti-depressants because every anti-depressant has a risk of serious side-effects ? Depression has its own severe side-effects.

I've been on gabapentin for 15 years. It replaced 2 years of clonazepam, a benzo. It is far safer than any benzo. Without it, I do not get good sleep. Without good sleep, I suffer a myriad of other complications. At 45 years old when I started it, my brain was already at the stage where very few new synapses were forming. Decreasing those new formations is not as much risk as not getting good sleep. btw, Almost no new synapses will form without good sleep.

I've looked for a replacement med because gabapentin can mildly contribute to depression. But, there are no better meds.

So, there is no magic pill or magic treatment. We are our best chance at improvement. Learning to moderate our lives, reinvent our lives, reduce our risks of further injury and such are our best opportunities for our future.

I know that many people take medications that did not agree with me. I just wanted to be told by my doctor that having a brain injury can change how a person reacts to medication -- that there can be a little more uncertainty. (and certainly I wish I hadn't been told to take it a 2nd time after a very unusual reaction the first time -- that should have been taken seriously). I was 49 when I had my accident. I'm fighting for every synapse I can personally salvage, lol.

My personal experience extends beyond my concussion, and of course there's no way you'd know that. My mother had a non-life threatening condition for years that caused her quality of life to very gradually deteriorate. When the doctors couldn't figure out her case, some of them treated her quite badly, as if it was her fault. I experienced similar treatment fighting to get my hypothyroidism diagnosed and treated.

As has been discussed on other threads, neuroendocrine dysfunction has been connected to TBI for quite some time, yet it doesn't seem to be part of a standard TBI treatment protocol to look out for symptoms that could indicate hormone problems, and many of those symptoms do also correlate with symptoms labeled as PCS, including depression, sleep disturbance, foggy thinking, etc. PCS isn't fatal, and there is no "cure," but it's amazing how much help the people on this forum have managed to be for each other, with none of us having medical degrees! Surely, if we can find the articles on PubMed showing studies on supplements, diet, the importance of sleep, etc., doctors could be suggesting these same things to their patients, too. That's all I'm trying to say. I hope that the sad fact of thousands more cases coming into the pipeline from returning vets, along with everyone else, will force some changes in basic treatment protocol. The very nature of TBI is that some people are unable to advocate for themselves.

I know I'm a newbie here, and I'm not trying to step on anyone's toes. I appreciate how helpful everyone has been.

We have discussed neuroendocrine dysfunction many times. The challenge is finding a good specialist. That has little to do with PCS. Neuroendocrine dysfunction can play a part in many other conditions. But, try to find many doctors who will refer to a specialist for most of them. Not much chance of success. They look at the 'healthy' and normal ranges that are far to broad for many people and say, "You're fine."

There is no 'standard TBI treatment protocol.' In fact, the consensus about concussions is so watered down by the desire to come to a consensus that it has little value. The overlap in symptoms between concussion, upper neck injuries, anxiety, depression, etc. makes it a challenge to get an accurate diagnosis. Considering that, concussions are still diagnosed 3 to 5 millions times a year in just the US. Most (85%) will recover from obvious symptoms (those that the patient complains about) within 6 weeks without any treatment.

Since most concussions happen during sports, the patients/players have historically wanted to return to play even with persistent symptoms. This caused a need to develop diagnostic tests that did not rely on patient reporting. Those that happen in auto accidents and such lead to a fight between opposing attorneys whose goals are financial, not recovery. Many valid diagnostics have been shot down by biased doctors testifying as experts. Money talks. Go figure.

The VA has spent millions to try to develop diagnostic criteria for concussions due to the thousands who sustained concussions during military operations in the middle east.

So, the issue is far more complex that any single entity. PubMed has targeted studies. That is the nature of research. It takes a lot of time and effort to sort through the information. A good example is the Zurich Consensus. What a mess.....

Check out what the garden variety concussion clinics and specialists are about.

btw, At 49, you have very little neurogenesis going on. Most of that ended at sexual maturity. The rest by mid 40's. Your synapses are in a pruning state now.

But, it does not sound like you have a need for gabapentin anyway. Your sensitivity is uncommon. There are always rule breakers. Just as with concussion. If you have seen one brain injury, you have seen ONE brain injury. That complicates the issue for everybody.

I will add my two cents. I have only been treated by doctors that fully understand this issues and they told me a few interesting things:

1. It's all numbers (and no I can't remember them) but something like this:
-for a person under 50 with few concussions then most like 98% get better within two week.
-for the remaining 2% (that is us) something like 70% get better within 6 months

SO the idea is to buy time time and help people deal with the issues. They have hard data that show that people that know about issues that can arise have shown a delay in getting better.

The idea is to focus things people can do to improve their life. This can include medication, speak therapy, etc.. The few percent that don't get better (like me) they really can't help. It is very hard to hear this after working a year and half trying to get better.

The numbers are such that only a few people will still have issues have after 1.5 years. The best advice (after the first 6 months) is try to live your life. 99% of the time you will get better.

This is most of what I remember - I was somewhat upset at the time he was telling me this.

I started to make plans for living AFTER this talk so I guess it worked. My old life wasn't coming back.

"btw, At 49, you have very little neurogenesis going on. Most of that ended at sexual maturity. The rest by mid 40's. Your synapses are in a pruning state now."

Just tonight, I found several exciting articles about neurogenesis that is actually triggered by TBI, and drugs such as Aricept, and even stem cells from belly fat (!) have been shown to help in formation of new neurons in adult tissue, post-TBI. This is very exciting news, even though it's obviously a long, long way from a "cure." If nothing else, it's continuing to stand what we used to believe about the brain on its head. (Sorry, I love puns)
I think those of us with TBIs are equally as individual as our injuries. We handle hearing odds and statistics in ways we can each deal with them best. I've been trying to find a balance between my old normal and my new normal, with the knowledge that "new normal" is not static. Maybe I'm just placebo- effecting myself, but it seems to be manageable so far.

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