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


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Old 08-27-2014, 11:23 PM #1
Galaxy1012 Galaxy1012 is offline
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Default Why is there absolutely nothing for concussed people?

Am I the only one feeling ****** off at the medical world for abandoning people who are concussed? I mean seriously, there is absolutely nothing that can help us unless there is a serious brain injury for which there are partially working therapies! Heck there are still no machines to scan our injuries leave alone treating them. Shame on our so called modern medical community who has been continuously being so ignorant and arguing towards poor concussed people telling them it's all in their minds and disrespecting us...No courtesy or empathise our pains..we are left alone to grieve cry and heal on our own..beg others to just believe us and understand..we don't expect any treatments just believe us..it's sad.

It's even more disappointing considering that concussion is the most common injury on this planet..why is this happening? Just because our injuries are invisible doesn't mean nothing had happened with us. We had a bloody head trauma. My neuro offended me by telling me that I should lose weight and nothing is wrong with me. We come to you hoping that you will understand and explain others our situation. Unfortunately most of the doctors have been like this so far in my concussion journey. Screw you doctors! We are better off without your help. You losers make us feel worse.
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Old 08-27-2014, 11:33 PM #2
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Originally Posted by Galaxy1012 View Post
Am I the only one feeling ****** off at the medical world for abandoning people who are concussed? I mean seriously, there is absolutely nothing that can help us unless there is a serious brain injury for which there are partially working therapies! Heck there are still no machines to scan our injuries leave alone treating them. Shame on our so called modern medical community who has been continuously being so ignorant and arguing towards poor concussed people telling them it's all in their minds and disrespecting us...No courtesy or empathise our pains..we are left alone to grieve cry and heal on our own..beg others to just believe us and understand..we don't expect any treatments just believe us..it's sad.

It's even more disappointing considering that concussion is the most common injury on this planet..why is this happening? Just because our injuries are invisible doesn't mean nothing had happened with us. We had a bloody head trauma. My neuro offended me by telling me that I should lose weight and nothing is wrong with me. Screw you doctors! We are better off without your help. You losers make us feel worse.
I JUST posted info on how 3 tesla machines are going to guide cognitive rehabilitation from brain injury and should be common within a few years,

There are also other interesting clinical trials going on especially with possibly 400000 soldiers having head injuries from the war, we are seeing more money put towards brain injury

We need to stay in contact with and push brain injury organizations on what is going on in cutting edge research. I talk semi regularly to a director at BIUSA and let him know the suffering we are going through and he says he will update me on any interesting advances or clinical trials.

We also need to call these agencies and make sure they're doing their jobs. This gentleman told me he gets thousands upon thousands of calls a year asking what is being done.

There are literally thousands of trials going on at universities and I follow as much as I can. We need to make healing tbi/abi/pcs a priority to those in charge.
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Old 08-27-2014, 11:48 PM #3
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Originally Posted by Galaxy1012 View Post
Am I the only one feeling ****** off at the medical world for abandoning people who are concussed? I mean seriously, there is absolutely nothing that can help us unless there is a serious brain injury for which there are partially working therapies! Heck there are still no machines to scan our injuries leave alone treating them. Shame on our so called modern medical community who has been continuously being so ignorant and arguing towards poor concussed people telling them it's all in their minds and disrespecting us...No courtesy or empathise our pains..we are left alone to grieve cry and heal on our own..beg others to just believe us and understand..we don't expect any treatments just believe us..it's sad.

It's even more disappointing considering that concussion is the most common injury on this planet..why is this happening? Just because our injuries are invisible doesn't mean nothing had happened with us. We had a bloody head trauma. My neuro offended me by telling me that I should lose weight and nothing is wrong with me. We come to you hoping that you will understand and explain others our situation. Unfortunately most of the doctors have been like this so far in my concussion journey. Screw you doctors! We are better off without your help. You losers make us feel worse.
Also I have struck gold with a young physician's assistant who told me the mri they use won't show any of the injury I have, but he believes me and he is working with me as best he can. He is already helping me sleep after 8 years of insomnia/half sleeping.

Young professionals tend to be more up to date and modern in their thinking and knowledge. Seek them out. There is also a vision test I took that indicated damage to 3 different parts of my brain, and when I confronted another doctor on the results, he said "oh yeah, that is organic damage we cant see" So I basically made him admit negative mri was wrong.

We have to advocate so hard for ourselves because I have no intention of living the rest of my life feeling like I do right now.
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Old 08-28-2014, 12:07 AM #4
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The Veterans' Administration has been seriously working on these issues since our soldiers started coming home with blast concussions. I have a friend who just retired as a full Colonel in the Army and he is still struggling to get help for his blast concussion. The problem is the brain is a very complex organ that does not heal like the rest of the body. Technology can not over-rule that fact.

These 3T MRI's will likely just document our injuries. The chance of leading to a valid treatment is slim. The vast variety and complexity of brain injuries is just too great. We will be limited to treating the symptoms for many years to come.

One of the biggest problems we have is the legal system. Attorneys fight against validating the systems for diagnosing concussion injuries. Personal injury liability insurance companies do not want an accepted way of diagnosing mTBI.
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Old 08-28-2014, 12:19 AM #5
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The Veterans' Administration has been seriously working on these issues since our soldiers started coming home with blast concussions. I have a friend who just retired as a full Colonel in the Army and he is still struggling to get help for his blast concussion. The problem is the brain is a very complex organ that does not heal like the rest of the body. Technology can not over-rule that fact.

These 3T MRI's will likely just document our injuries. The chance of leading to a valid treatment is slim. The vast variety and complexity of brain injuries is just too great. We will be limited to treating the symptoms for many years to come.

One of the biggest problems we have is the legal system. Attorneys fight against validating the systems for diagnosing concussion injuries. Personal injury liability insurance companies do not want an accepted way of diagnosing mTBI.

I must agree it is a daunting task. I think a healthy dose of treating the symptoms as well as possible and protecting what's left with certain supplements is a good plan so if in 10 years if there is some great new treatment we've still got a brain to work with Most will be better within two years. I'm talking about the hard cases
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Old 08-28-2014, 07:11 AM #6
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I may be wrong but I have to think that the other reason why treatment is so slow to move along is that as a profession neologists only know about 10% of what the brain can do and all of its complexities... no 2 are alike and no 2 will respond the same way... it is not like a shoulder or a knee that 90% look the same and function the same...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 08-28-2014, 08:09 AM #7
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Originally Posted by markneil1212 View Post
Also I have struck gold with a young physician's assistant who told me the mri they use won't show any of the injury I have, but he believes me and he is working with me as best he can. He is already helping me sleep after 8 years of insomnia/half sleeping.

Young professionals tend to be more up to date and modern in their thinking and knowledge. Seek them out. There is also a vision test I took that indicated damage to 3 different parts of my brain, and when I confronted another doctor on the results, he said "oh yeah, that is organic damage we cant see" So I basically made him admit negative mri was wrong.

We have to advocate so hard for ourselves because I have no intention of living the rest of my life feeling like I do right now.
Do you know the name of the eye test? Thanks.
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1 year post-concussion caused by a high-speed MVA.
Driver to driver head-on. I was stationary and the other vehicle hit me traveling > 110 km/hr successfully breaking my sternum.
Diagnosed with chronic neuropathic pain, PTSD, somatic symptom disorder, depression, anxiety. I suffer from daily headaches, 24x7.
Meds: On prescription medication for neuropathic pain, breakthrough pain, anxiety, depression and sleep disorder.
OTC medications used to try and keep headaches in check: acetaminophen and ibuprofen.
Treatments: Physio (declined since May '14), RMT (declined since Feb '14), Psychiatry CBT (since Nov '13), Pain Clinic Nerve Blocks, Botox and Lidocaine Infusion (since May '14), SLP (since Aug '14), OT (since Sep '14).
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Old 08-28-2014, 08:35 AM #8
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We have to advocate so hard for ourselves because I have no intention of living the rest of my life feeling like I do right now.
markneil, you have no idea how thrilled I am to see you write that. I knew there was a fighter in there!

See the difference meeting even ONE medical person, who gives a fig, can make. See the difference just, finally, getting better sleep can make.

Please try to keep looking and striving, everyone.
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Old 08-28-2014, 08:42 AM #9
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Originally Posted by Mark in Idaho View Post

One of the biggest problems we have is the legal system. Attorneys fight against validating the systems for diagnosing concussion injuries. Personal injury liability insurance companies do not want an accepted way of diagnosing mTBI.
BINGO! We have a very powerful, very wealthy industry working very, very hard to make sure our injury is denied.
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Old 08-28-2014, 10:42 AM #10
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Do you know the name of the eye test? Thanks.
No. It;s the wierdes test. You put on these huge goggles and then follow a dot. and then they lay you down and blow wind into youre ears and test your eyes again. I have searched the internet and not found it.

I will ask when i go again.

I received a written report in the mail that indicated damage to brain stem, thalamus and cerebellum. I had to Press the dotor to admit it meat i had brain damage. He said "it's organic damage we cabt see" no kidding lol
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