Posted on Apr 8, 2016
What might keep you from getting tested for TBI?
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There are a growing number of TBI clinics, programs and centers on military bases such as the Intrepid Spirit Centers. These are loaded with state-of-the-art diagnostic and treatment tools, systems, and subject matter experts. If you are active duty, Reserve or Guard, and you suspect you might be suffering with some level of traumatic brain injury, what might keep you from getting tested? Fear of losing your career? A supervisor preventing you from being tested? What are the risks, if any, in getting tested? When would you get tested?
Posted >1 y ago
Responses: 9
I have a strong opinion about this right now, and I am so disappointed in, and angry with, the Army medical community. (Disclaimer, I am a retired medical SGM, having retired from MEDCOM staff 1 April 2012.) I have been helping a Battle Buddy for the last year as he has struggled to get help. He called me because he got to the point he wasn't understanding what was going on and how to deal with things anymore. We have known each other 15 years and I have watched him deteriorate over time (he has had nine or ten deployments and over five known TBIs, but with over 850 jumps - many with hard landings and injuries prior to that - there were undoubtedly more). He was too hard-headed to get treatment at the time, and his troops loved their CSM so they just 'took care' of him, even this last time. The mortar blast knocked him off an MRAP, unconscious, and they dragged him face down into the bunker. He was unconscious for an undetermined amount of time, then groggy for a couple of days. The time before that he had been knocked around by being too close to an IED blast, and been so nauseated and dizzy he had to move to the rear vehicle (he NEVER had someone else ride in the second vehicle because he wouldn't want someone else in the most dangerous spot taking his place and getting hurt). So at least the last two were probably moderate TBIs if he had gotten evaluated.
When he got back to the states he was having ALL the symptoms of TBI, still, and PTSD. I had seen this happening over time and had urged him to get treatment. Finally he couldn't deny the symptoms, especially the memory loss and other cognitive deficits. So he went in and asked for help. The test examiner treated him like he was stupid (in his words) because he couldn't understand and/or remember the instructions or perform some of the tasks (which is why he was there.) Knowing how it went, I have a feeling she may have thought he was trying to get over on the test for some reason, but also knowing how much trouble he is having, I know he genuinely can't do those tasks. He got frustrated and gave up trying, just doing what he had to in order to get out of the room quickly. The doc evaluating the results was a psychologist (not a neuropsychiatrist) and saw 'variable results', didn't talk to him about it, and just said it must be due to PTSD rather than TBI. He also said that if it was TBI my Buddy would have gotten over it by then. No one took into account the effects of repetitive TBI or bothered to delve into how severe the initial TBI might actually have been (figuring that if he wasn't treated it must not have been too bad, not taking into account this guy was special ops for most of his career and had continued mission with broken bones and torn ACL before).
So he ended up giving up his wreath and going to a staff position (a good staff position, but not a CSM job - he couldn't multitask any longer though and his memory was shot and his mood was unpredictable). He got some speech therapy, but with his new job he didn't have a secretary to remind him of appointments which he couldn't remember (and he did have to answer to the CG) so he missed appointments and got kicked out of that program. So that was the extent of any treatment for TBI. He sees a therapist for depression and PTSD, and they wanted him to go to an inpatient program, but he couldn't go because of the length of the program. So...for three years he just struggled. Finally he let me in on what was going on when he was told they were going to send him to an MEB and he didn't know what was going on or how to handle it. I had just retired and was having surgery and recovering myself when he was first seeking treatment, so I kick myself for not knowing earlier how much he was struggling.
But this last year I was able to see what was done, or not done, for him. And I saw how the MEB process worked, or didn't work, at his duty station. I traveled there to help him numerous times. And OVER and OVER I explained to people that his initial evaluation was flawed, and that he has had several TBIs, and that he is STILL experiencing the symptoms. I pulled all the research from MEDLINE showing that repetitive TBI can cause permanent damage with the EXACT symptoms he has (migraines, memory loss, cognitive deficit, personality changes, etc). Going into the MEB process got him pulled from the board that would have gotten him into a nominative position to stay in to 35 years, putting him in the 1-year window for his mandatory retirement date, so the MEB came back fit-for-duty (the MEB lawyer REFUSED to preemptively challenge the presumption of fitness). And his installation just wasn't putting people into the WTB.
But the ombudsman did work with us to help get him to another TBI program to get evaluated, finally. Only to have them look at that same evaluation that was done three years prior, with that one statement by that psychologist, and say "they determined it was from your PTSD. What do you want us to do?" Some second opinion! Reading the first opinion is NOT a second opinion! He was ready to give up ever getting help. I wasn't. So I went in and talked to the program director and explained the entire situation. I talked to her at great length and she agreed to let him into the program there, if he would finish the PTSD Intensive Outpatient Program at his base first, prior to his retirement. He dreaded doing that, but he was willing to in order to get to the TBI program.
He let his unit know he HAD to do this, and the ombudsman helped get the paperwork done (because of course the folks at his installation LOST the paperwork twice). He went through that program that was so excruciating to him that I had to talk to him every single day to help him get through it. And during the last week I called the TBI program director to arrange his appointment with her (she had said to call her back when he finished to set up the appointment.) And she had the program case manager call me back to say that 'since the problem is mainly PTSD' the program director thinks it would be better for him to be seen at the VA.
I talked to them about the fact that we just put him through hell on the promise that he would be in this better TBI program if he did that PTSD IOP so this would seriously damage trust, and that we DON'T KNOW that the problem is PTSD, and that he wouldn't have any care established at VA for a while, to no avail. I even asked if they would be willing to at least redo the neuropsychiatric testing before making the decision, or so they could do a better warm handover to the VA - with more accurate information, to no avail. The best I could do was that the director would talk to him to explain that they are going to turf him to the VA.
I even called the regional CSM and an ombudsman there to try to get some help. Everyone goes back to that one neuropsych test three years ago - the ONLY evaluation he has EVER been given, and to the fact that he didn't go get help while in theater. The party line seems to be "well, he didn't go get help at that time, so we aren't obligated to help him now." Especially since they had one person do testing - however flawed, and render an evaluation - however unsatisfactory. They keep saying that TBI wouldn't still be causing problems, but IT IS. He is having EXACTLY the symptomology described in the literature for those who have had, as he has had, repetitive incidents of mTBI or moderate TBI. But the military medical community is refusing to help this Soldier.
And this guy has given so much - I served 32 years and I am not exaggerating when I say he is the BEST Soldier I have ever known - he is my hero. I am about to the point where I am ready to blow this up and go to the press to make the point about what the flaws in the system are. And I HATE when that happens (I used to have to deal with issues arising from things like that.) But I know that if they are doing this to HIM, what is happening to young PFCs or SPCs???
So....why don't people report it? Because they see their CSM raise his hand, go in uniform to get tested so others see that it is OK to show you need help, get ridiculed at the test site, and see that nothing gets done for him. When they see that even a CSM gets treated like that, what do you think they feel their chances are? He never once bad-mouthed the medical community, but I am so mad I could chew nails and spit tacks.
We (still including myself in the AMEDD) are FAILING our Soldiers. If a Soldier needs help, it shouldn't matter what they told us when, if they were injured or are ill, we treat them NOW. Turfing them to a VA system we KNOW is broken, with test results we are TOLD are not accurate (with an explanation of why) is unconscionable.
This is another Walter Reed scandal waiting to happen, except this time there is a warning, if anyone cares to pay attention. At Walter Reed the leaders were trying to do their best given what they knew and what they believed their constraints to be. This time some of us are standing up and letting them know what the issues are. Will it make a difference?
When he got back to the states he was having ALL the symptoms of TBI, still, and PTSD. I had seen this happening over time and had urged him to get treatment. Finally he couldn't deny the symptoms, especially the memory loss and other cognitive deficits. So he went in and asked for help. The test examiner treated him like he was stupid (in his words) because he couldn't understand and/or remember the instructions or perform some of the tasks (which is why he was there.) Knowing how it went, I have a feeling she may have thought he was trying to get over on the test for some reason, but also knowing how much trouble he is having, I know he genuinely can't do those tasks. He got frustrated and gave up trying, just doing what he had to in order to get out of the room quickly. The doc evaluating the results was a psychologist (not a neuropsychiatrist) and saw 'variable results', didn't talk to him about it, and just said it must be due to PTSD rather than TBI. He also said that if it was TBI my Buddy would have gotten over it by then. No one took into account the effects of repetitive TBI or bothered to delve into how severe the initial TBI might actually have been (figuring that if he wasn't treated it must not have been too bad, not taking into account this guy was special ops for most of his career and had continued mission with broken bones and torn ACL before).
So he ended up giving up his wreath and going to a staff position (a good staff position, but not a CSM job - he couldn't multitask any longer though and his memory was shot and his mood was unpredictable). He got some speech therapy, but with his new job he didn't have a secretary to remind him of appointments which he couldn't remember (and he did have to answer to the CG) so he missed appointments and got kicked out of that program. So that was the extent of any treatment for TBI. He sees a therapist for depression and PTSD, and they wanted him to go to an inpatient program, but he couldn't go because of the length of the program. So...for three years he just struggled. Finally he let me in on what was going on when he was told they were going to send him to an MEB and he didn't know what was going on or how to handle it. I had just retired and was having surgery and recovering myself when he was first seeking treatment, so I kick myself for not knowing earlier how much he was struggling.
But this last year I was able to see what was done, or not done, for him. And I saw how the MEB process worked, or didn't work, at his duty station. I traveled there to help him numerous times. And OVER and OVER I explained to people that his initial evaluation was flawed, and that he has had several TBIs, and that he is STILL experiencing the symptoms. I pulled all the research from MEDLINE showing that repetitive TBI can cause permanent damage with the EXACT symptoms he has (migraines, memory loss, cognitive deficit, personality changes, etc). Going into the MEB process got him pulled from the board that would have gotten him into a nominative position to stay in to 35 years, putting him in the 1-year window for his mandatory retirement date, so the MEB came back fit-for-duty (the MEB lawyer REFUSED to preemptively challenge the presumption of fitness). And his installation just wasn't putting people into the WTB.
But the ombudsman did work with us to help get him to another TBI program to get evaluated, finally. Only to have them look at that same evaluation that was done three years prior, with that one statement by that psychologist, and say "they determined it was from your PTSD. What do you want us to do?" Some second opinion! Reading the first opinion is NOT a second opinion! He was ready to give up ever getting help. I wasn't. So I went in and talked to the program director and explained the entire situation. I talked to her at great length and she agreed to let him into the program there, if he would finish the PTSD Intensive Outpatient Program at his base first, prior to his retirement. He dreaded doing that, but he was willing to in order to get to the TBI program.
He let his unit know he HAD to do this, and the ombudsman helped get the paperwork done (because of course the folks at his installation LOST the paperwork twice). He went through that program that was so excruciating to him that I had to talk to him every single day to help him get through it. And during the last week I called the TBI program director to arrange his appointment with her (she had said to call her back when he finished to set up the appointment.) And she had the program case manager call me back to say that 'since the problem is mainly PTSD' the program director thinks it would be better for him to be seen at the VA.
I talked to them about the fact that we just put him through hell on the promise that he would be in this better TBI program if he did that PTSD IOP so this would seriously damage trust, and that we DON'T KNOW that the problem is PTSD, and that he wouldn't have any care established at VA for a while, to no avail. I even asked if they would be willing to at least redo the neuropsychiatric testing before making the decision, or so they could do a better warm handover to the VA - with more accurate information, to no avail. The best I could do was that the director would talk to him to explain that they are going to turf him to the VA.
I even called the regional CSM and an ombudsman there to try to get some help. Everyone goes back to that one neuropsych test three years ago - the ONLY evaluation he has EVER been given, and to the fact that he didn't go get help while in theater. The party line seems to be "well, he didn't go get help at that time, so we aren't obligated to help him now." Especially since they had one person do testing - however flawed, and render an evaluation - however unsatisfactory. They keep saying that TBI wouldn't still be causing problems, but IT IS. He is having EXACTLY the symptomology described in the literature for those who have had, as he has had, repetitive incidents of mTBI or moderate TBI. But the military medical community is refusing to help this Soldier.
And this guy has given so much - I served 32 years and I am not exaggerating when I say he is the BEST Soldier I have ever known - he is my hero. I am about to the point where I am ready to blow this up and go to the press to make the point about what the flaws in the system are. And I HATE when that happens (I used to have to deal with issues arising from things like that.) But I know that if they are doing this to HIM, what is happening to young PFCs or SPCs???
So....why don't people report it? Because they see their CSM raise his hand, go in uniform to get tested so others see that it is OK to show you need help, get ridiculed at the test site, and see that nothing gets done for him. When they see that even a CSM gets treated like that, what do you think they feel their chances are? He never once bad-mouthed the medical community, but I am so mad I could chew nails and spit tacks.
We (still including myself in the AMEDD) are FAILING our Soldiers. If a Soldier needs help, it shouldn't matter what they told us when, if they were injured or are ill, we treat them NOW. Turfing them to a VA system we KNOW is broken, with test results we are TOLD are not accurate (with an explanation of why) is unconscionable.
This is another Walter Reed scandal waiting to happen, except this time there is a warning, if anyone cares to pay attention. At Walter Reed the leaders were trying to do their best given what they knew and what they believed their constraints to be. This time some of us are standing up and letting them know what the issues are. Will it make a difference?
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SGM Robin Johnson
Thank you... I have been trying and encouraging everything I read about being effective, and seeing some improvement. But he and I just spoke the other day about him still having symptoms and struggling, and the cumulative effects of this. I will get him this info and reach out if we have problems. I have some provider secondary PTSD issues from Soldier deaths and WTU experiences - mainly because of an intense sense of failing my/ our mission as medics and the Army medical community to return Soldiers to health and send them back home in decent condition after recovery. The reality of just how badly injured Soldiers still are with the effects of PTSD and TBI when we cut them loose (often without treatment) and that we were just turning them out onto the streets or into an overtaxed VA system... knowing the probable outcomes for them... it's been a struggle. Having it hit home with my closest battle buddy, and hitting brick walls trying to help him, has been worse. I've ended up helping several Soldiers through the MEB and VA process, but what he went through was the most egregious system failure of the ones I've assisted. Thanks again for reaching out and for the info.
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SFC (Join to see)
He should request his primary care provider to forward his medical records to the War Related Illness & Injury Study Centers. There are 3 presently one in Palo Alto California, a other in New Jersey and in Washington DC. I understand your concern about the VA, but these locations are run by the VA and are the leading Medical research teams concerning TBI,PTSD and any other illness or injuries sustained in combat. You will be treated professionally, with respect and understanding. I personally have suffered for years and finally was fed up with the medical treatment I was receiving and "Demanded " my medical record be electronically forwarded to be considered for care. The WRIISC will review and decide where you can be treated. I was seen by doctors who were leading the research into TBI, they have specialized protocols for MRI's, and will not only listen to your health issues but will show you the results on the MRI images of how bad your brain matter really is deep within your brains cortex. White brain matter will be mixed into areas of dark brain matter which is a direct cause of Trauma to the brain. I'd give this a shot, when all else has failed. We have to take back the responsibility of our health care rather than letting "one dr's" opinion or comments dictate the care we need.
I could go on but your buddy should go to the WRIISC website for further care.
Good luck
I could go on but your buddy should go to the WRIISC website for further care.
Good luck
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SGM Robin Johnson
SFC (Join to see) Thanks for the info. He's been retired 3 years now, in an area with a smaller MEDCEN and VA (relatively remote) to care for his ilk and aging mother, so I've been helping him access the same therapeutic interventions that should have been prescribed to the maximum extent possible, and push/pulling the medical systems there as much as we can. And working with him as much as I can. There has been quite a bit of improvement (the stress reduction of retirement alone helps!), but this program would be so beneficial. Thanks again for reaching out. I have been less active since my son's death this past year and wasn't tracking this.
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SFC (Join to see)
SGM Robin Johnson I'm very sorry to hear about your son. My deepest sincere condolences to you and your family Robin. May the love of your son strengthen your resolve to get through this devastating event. Know that you are in my prayers.
As for your battle buddy, I am happy to hear things have improved some, and I hope that he gets the info I have provided.
I too have shared the info to many young troopers whom are suffering from TBI here in San Antonio at the Poly Traima Clinic where I have received better care than I was receiving in Las Vegas VA. It's not perfect, but I now know to be direct when speaking to these Doctors. They try, but they are not all versed in the care for soldiers returning from the box. Time and exposure will improve their knowledge on how to treat us.
I have done my share of reading and participating in the TBI and Migraine research, but it's been a long hard road. I see your retired, and if your now in a position to be employed outside the government system I would encourage you to utilize the civilian sector for care. They are less likely to drag their feet, find and diagnose your illnesses and refer you to the proper specialties. Then if you want you can share this info with your primary care Dr and they can leap from the formulary protocols for meds and specialty care. But you must be the one to tell them what you want rather than take what they say is next. It has been 15 years for myself to get some of my health issues resolved by finally going to civilian Dr's for help with my health issues. I want to trust the VA is looking out for us, but after complaining about chest pains, shortness of breath, fatigue, headaches, and 2 separate stress tests my doctor gave me albuterol and told me my tests results were good. Only to suffer a heart attack a year later resulting in Open heart surgery to repair 4 arteries. My civilian doctor was once in the army as a heart surgeon and said, I was lucky to be alive as I was in bad shape and the VA should have seen all the blockages during my stress tests. So I try and keep the faith but I'm now more responsible for my care by being better informed on the care available.
Sad thing is, these doctors have to follow a protocol that seems to turn patients off, and therfore we stop pursuing care from the VA.
God Speed..
As for your battle buddy, I am happy to hear things have improved some, and I hope that he gets the info I have provided.
I too have shared the info to many young troopers whom are suffering from TBI here in San Antonio at the Poly Traima Clinic where I have received better care than I was receiving in Las Vegas VA. It's not perfect, but I now know to be direct when speaking to these Doctors. They try, but they are not all versed in the care for soldiers returning from the box. Time and exposure will improve their knowledge on how to treat us.
I have done my share of reading and participating in the TBI and Migraine research, but it's been a long hard road. I see your retired, and if your now in a position to be employed outside the government system I would encourage you to utilize the civilian sector for care. They are less likely to drag their feet, find and diagnose your illnesses and refer you to the proper specialties. Then if you want you can share this info with your primary care Dr and they can leap from the formulary protocols for meds and specialty care. But you must be the one to tell them what you want rather than take what they say is next. It has been 15 years for myself to get some of my health issues resolved by finally going to civilian Dr's for help with my health issues. I want to trust the VA is looking out for us, but after complaining about chest pains, shortness of breath, fatigue, headaches, and 2 separate stress tests my doctor gave me albuterol and told me my tests results were good. Only to suffer a heart attack a year later resulting in Open heart surgery to repair 4 arteries. My civilian doctor was once in the army as a heart surgeon and said, I was lucky to be alive as I was in bad shape and the VA should have seen all the blockages during my stress tests. So I try and keep the faith but I'm now more responsible for my care by being better informed on the care available.
Sad thing is, these doctors have to follow a protocol that seems to turn patients off, and therfore we stop pursuing care from the VA.
God Speed..
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When troops have their post deployment physicals they are so emotional about being home they run through the questions with out thinking. In my oppion these are health questions that should be run down one on one between patient and health care provider. The attitude still remains that "if you don't answer no to everything they will try to force you out" and that has to change. If you look at these symptoms do they seem consistent with someone who can sit for 20-30 minuets and fill out a lengthy form. We need to educate our troops and then provide a supportive environment surrounding their post deployment physicals...not just run them through like cattle with yes no questions. But that's just my experiences with patient/troop concerns.
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I'm not sure what 'testing' is offered, but I've gone straight to the clinic every time I've had a head injury or been at risk for one (impact vicinity) and was always given the "why the fuck are you here" look. Excuse the profanity. It makes me believe there are a lot of service-members out there that have TBIs or should at least be given a more thorough evaluation, but were brushed off by the medical clinic.
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Lt Col (Join to see)
I thought everyone does that ANEM test. Where you play memory and response games.
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