American Veterans with Brain Injuries

[MySonIsJustOne]

Hello to all!

I'm from the Kansas City area and I'm quite excited to have found this amazing resource. Cheryl...what a blessing you are!

I (We) have MUCH to say and will probably do so in spurts, but we have much to contribute as well, and hope that as time allows, our ability to be a resource that is coordinated with this group in and around the Kansas City area will enhance the networking possibilities for the central US.

My son is just one of the many who entered the military with the very best of intentions....the first in several generations who "served". Great Grandfather was a Major and a doctor in WWI and "Uncle Henry" was shot down over Normandy.....by golly, my son wanted to be counted among the brave, and make his grandpa proud....so he signed up....and a month after grandpa passed....he hit boot camp......less than a week before 9/11.

4 years in the Navy.......5 tours......then the Blue-to-Green program......then in to the Army....and to Baghdad for 15 months.........TWENTY + concussions later, he LOOKS fine and can pretty much fool anyone....except Mom. *sigh*

Life as we knew it, has changed for my entire family. A bit of hero-worship that has shattered....a bit of national pride has crumbled, a bit of family unit sanity has washed away, a bit of confidence and belief in the "good of the people" has been buried, and ultimately...a crisis of faith has produced a mountain of new perspective that is not wrapped in judgment and bigotry for the first time in my life.

I have spent the bulk of my adult life as administrative support for one organization (or office) or another, mostly in alternative health and psychiatry, and hope to be able to use some of the skill I have acquired along the way...to help. I'm just not sure what needs to be done or where I should direct yet. I'm sure I'll spend a few days going through all of the information that Cheryl and others have contributed here....and perhaps direct a few others to this site.

VERY glad to make your acquaintance....

[Outsider]

My son is just one of the many who entered the military with the very best of intentions....the first in several generations who "served". Great Grandfather was a Major and a doctor in WWI and "Uncle Henry" was shot down over Normandy.....by golly, my son wanted to be counted among the brave, and make his grandpa proud

Welcome to the forum MySonIsJustOne
My gratitude for your sons service and your families sacrifices
I know that it must be difficult to have to watch your child go through such an event (I have 6 kids myself )
I gotta tell you though as a member of the Patriot Guard Riders I've too often seen the worse case scenerio that this war has produced.
People like your son are the reason I'm apart of forums like this spending hours everyday
along side of running my own message board.
Great to meet you I look forward to reading more from you

[broken sailor]

I am thankful for all of your service of you honorable warriors.

I am retired navy with some pretty bad chronic pain (broken discs, knees, arms)and such. 60% disabled. I re-opened my VA file because i am severely worse off than when i retired n 2004.
anyway during this last round of exams, the ear folks confirmed the ringing in my ear, and one of the doctors must have put some emphasis on my contributing brokenness, mental and emotional bearing as well as
So i get a call and we do the phone consult about head injuries and the like
I never was on the ground in OIF or OEF, but had several head incidents aboard ship, fell off ladders, etc.
I am tall and low hanging steel pipe and I had a few unplanned meetings during hurried high tempo events. It if wasn't for spell checker i could never type this,
anyway, i am new to this new round of get you betterness


thanks for site and God bless you all

[Cheryl]

Broken Sailor;
First let me say Thank you for your service to Country and Welcome you to the AVBI Forum. Also please know that we are here for ALL Veterans who have suffered brain injuries!

By the sound of the "incidents" you had during your time in service; there is good reason for you to be concerned about possible past injury to your brain. There are many studies that prove that a multitude of "minor" bumps (or blasts) compound the effects and residual impairments. I'm pleased they are at least screening you for the possibility and hopefully will follow up with treatment if necessary.

My son suffered a very obvious brain injury in the Army after a 26ft fall, but we have recently found out that my husband also has a multitude of damaged areas in his brain that went undiagnosed for many years. That is until he became totally disabled this past year......... he had served for 24 years in the Navy (Flight Decks of Aircraft Carriers) and it seems the after burners of the F14's and F18's and the cat shots of the EA6B's were not very kind to his brain and now, over 10 years after retirement from the Navy, he is suffering the consequences.

HUGS, Cheryl

[Hermanie]

Hi,

I was injured on active dutty in June of 1988 at Hospital Corps A School. I was diagnosed as a concussion and the Navy did nothing and ran no tests. Then, my records went missing from 1988 to 2007. I was told for years that I was "crazy" with no proof of injury by the VA. Then, when the proof became available, I was told a psychological test called an MMPI showed no problems. I then went to an outside TBI specialist whom diagnosed me with post concussive syndrome with mild cognitive deficits. The VA refuses to test or provide any care suggested by this TBI program. The VA comp and Pension doctor did agree i had post concussive syndrome and gave me 40 for headaches. ( I never put in for a TBI at that time. ) VA medical is denying the care.

I just had to prove my discharge was honorable because I couldn't drive, find my way anywhere, beacame homeless all while in the service. I was a mess and the Naval reserves gave me an other than honorable adminstrative for showing up at the wrong place and time...my first step in comp and pen process.

I should know back soon. Then, I have to fight to get my dependants on and then go for the TBI, tinnitus, and other claims..I am doing this alone and sometimes I use my home health workers to help me out becaus the paperwork drives me crazy.

Thanks, Kristina

[Cheryl]

Hi Kristina,
Welcome to the AVBI forum.

There is a lot of confusion between what is diagnosed as “post concussive syndrome” (PCS) vs. “traumatic brain injury” (TBI). I’m not a medical professional or an expert on the subject, yet my best understanding is that PCS is commonly used when there was no apparent or timely loss of consciousness and is based on the residuals of a concussion or mild TBI. There is actually a very good explanation on Wikipedia; http://en.wikipedia.org/wiki/Post-concussion_syndrome and additional information is provided on the Mayo Clinic’s web site http://www.mayoclinic.com/health/post-concussion-syndrome/DS01020

The new Schedule of Ratings used by the VA, for any type of brain injury, is now based on the residual impairments of injury. This new CFR regulation became effective October 2008. More information can be found on this forum here viewtopic.php?f=1&t=164

It sure sounds like you have had a very difficult time and I can understand your frustration, yet instead of trying to do all the paperwork yourself it would be advisable to have a Veterans Service Officer (VSO) help you. VSO’s are provided free of charge by most of the larger Veteran’s organizations and definitely worth your time to find one in your area.

All the best,
Cheryl

[Rachel81]

Hi all! My name is Rachel. My husband's main TBI that took him out happened on August 17th 2007. Too many IED blasts took him out. Im still VERY angry at the Army for their lack of care since day one. Cheryl when I was reading your story it made me even more angry. It's bull that they sit back and say they do the best for their own.. but in reality the VA system and the military system is a crap hole. Brooke Army Medical Center in San Antonio, TX is where my husband was sent home to when he got injured. My husband suffers from seizures and blackouts... not to mention the constant headaches/migrains he has everyday. Memory loss is a whole other issue in its self. He also has severe PTSD. My husband was actually told by a Colonel that he should be in the psych ward because HE didn't know why my husband was having seizures.. it's horrible.. The first night he got there he was placed in the ER.. he was having a seizure and I called a dr to come help me out. The dr came in and said "he's ok" and walked out.. That's the instant that I knew i was alone in this. Thankfully he got medically retired last month after 13 years of service. He is considered 80% disabled by military and 100% disabled by the VA.

I was hoping there was someone else out there who's husband also suffers from seizures from his TBI or PTSD. Just to know I'm not alone...

[Outsider]

Hello Rachel and welcome.
I think you've come to the right place to seek answers and support.
I've not personally experienced what you're going through but many here have.
Best wishes to both you and your husband
and thank you both for your sacrafices

[Cheryl]

Welcome to the forum Rachel!

Outsider is correct you have found the right place to connect with others and not feel like you are alone. We do understand!!!

I hope you're able to find additional information on our site and if you need individual assistance, please contact us. I would also suggest that you apply for a AVBI Medical Alert tag and ID Card, information about them and the on line application can be found here; http://avbi.org/programs.html

HUGS, Cheryl

[silkmom]

Hi....

My nephew has a TBI with a substantial loss in hearing after serving in Afghanistan. He returned in spring of 2007, and then was in a Wounded Warriors unit until this Spring when he was finally released. His TBI is considered "mild". He has no hearing in one ear and graded more than 30% loss in the other. He supposedly completed all of his VA paperwork with the assistance of a VA person before discharge. Now the local VA says none of that paperwork is any good, and because he missed all of the apts. scheduled for him in the last year....."what do you want us to do?" Obviously, there was a mistake as he was in New York and still in the Army, and did not know of any such apts. Even if he had, we are in the Midwest....not New York.

He is 28, unmarried and staying with his parents. He declines help from the family in setting up his apts. and paperwork. However, he has been back and out since the end of April, and still has not had an apt. with the VA here. He is a great young man, and we are so concerned for him. He never received any therapy for his TBI. Just many, many tests for hearing and TBI. He has difficulty in a conversation which requires remembering any details, or following the "thread". He is forgetful, mixes details up, is good at hiding his hearing loss.....but misses conversations. He only gets about 2-3 hours of sleep at night. While he was in New York, he kept telling us that he was fine, and minimized his injuries.

He was exposed to many blasts, but the TBI is directly linked to an RPG which hit his vehicle. Thank God no one was killed, but all of them lost consciousness...and their vehicle was destroyed. None of them received any type of evaluation or care for this until they returned back to the states at the end of their deployment.

I could go on.....but I think this says it all. I am a retired nurse. I don't know all of the correct "military terms" for his status. I know he is on a medical discharge. My Dad, his grandfather was in the Army,but that was in WWII.....otherwise no military background in our family. We do not have a clue what to do, or where to start.

My nephew is an incredible young man. He has a degree in psychology, and was much of the way to a master's degree when he enlisted. He enlisted as CAV Scout because he felt it was his duty. He chose NOT to be an officer because he wanted to learn the SCOUT ways from the bottom up. His original thought was to make the military his career. That is no longer the case.

Thank you for making this site available,

silkmom

[timetowinarace]

I'm a veteran of GW1. In '91 I had a closed head injury and was hospitalized for "Post Concusive Syndrome". When I returned home my family said I was different. I did know I was having problems with weakness, fatigue and other physical symptoms but didn't quite know what they meant. They finally convinced me to go to the VA for help. That started years of misdiagnoses and no diagnoses including diagnoses of malingering(faking). The regular doctors would diagnose me with depression and put me on pills that made me sick(er) and recomend me to mental health and mental health would evaluate me and find no diagnoses and refer me to regular doctors. This went on for 13 years. I was struggling to work and went through many jobs untill '03 when I could no longer sustain the 150% effort I was putting in to keep working. In '98, of all the claims I filed with the VA for my many symtoms I was awarded a 20% rating for "undiagnosed fatigue". Many attempts at increasing that rating were denied. I finally gave up getting a proper diagnoses and filed a claim for depression secondary to undiagnosed fatigue even though I nor the psychs that evaluated me felt that depression was problem. The C&P examiner for the depression claim, a psychiatrist, had noticed in my records that I had filed a claim for head injury at one time(it had been denied). He diagnosed my TBI and requested nero-pych testing to confirm it. The VA denied my claim, and refused to test. I had the testing done privetely and verified my(unknown to me) substantial cognative problems. In '06 I was awarded 100% P&T but required to have a fiduciary(my wife) for VA funds due to the severity of my memory problems(I had been denied SC for my memory problems since '98).

I have no stories for treatment since my diagnoses. Except for the treatment of my daily migraines, I don't get any. I was literally told by a VA health care provider to be satisfied with treatment for depression only or move to a different VA region to get TBI care.

I have learned a bunch about the VA claims proccess though and am willing to share my knowledge with those that need it. I do so on another Veterans forum and will try to check in here also.

JC

[VeteranMom]

Hello,
My son has been honorably discharged from the Army - medical discharge.
He has a number of diagnosis and some that we know he has and are awaiting the final diagnosis - so far has hearing loss, knee injury, PTSD & TBI -
It is such a nightmare what the Veterans go through and the families.
I would like to talk to other families.
VeteranMom

[Cheryl]

Welcome to the forum Timetowinarace (JC) and VeteranMom!

JC, it was very nice chatting with you Wed evening in the chat room, your insight will be a great help to many other veterans.

VeteranMom, so happy you found us and I hope that we can offer you and your family additional support. Although every person’s situation has differences, we have a common bond and understanding of life after the injury and the Military. We look forward to your input on this forum and I also hope you’ll join us in the chat room where you can meet some of the other family caregivers.

Cheryl

[lesliekamm]

Hi everyone. I found this site a few days ago and posted a couple of questions then, but didn't have time to post an introduction.

So anyway, my name is Leslie and my son's humvee was hit by a suicide bomber on May 31, 2008. He had been a gunner at the time and he was thrown from the vehicle, on fire, up over a billboard where he came down and landed on his head. Unfortunately, his helmet had been blown off.

He lost quite a bit of the left side of his brain upon impact, and what he didn't lose outright, he lost the functioning of. All total, he lost the ability to use about 85% of the left side of his brain.

He was in a coma for about 6 weeks or so and he slowly woke up. We had been told he never would wake up and then when he did, we were told he would never surpass a 3 year old level. Kevin just turned 21 and although he sometimes is childlike, many times throughout the day he is roughly 21.

At this point, he is learning to walk (the whole right side of his body had been paralyzed until recently) and has just quit using his cane the bulk of the time. His right arm had been mostly neglected in the VA hospital where we were at (Tampa) and it is only in the last 2 weeks starting to be able to be moved. We are now doing therapy in a private clinic and seeing great results.

He is able to say about 40 words or so and probably understands what's going on maybe 75% of the time. He seems to understand complex things, but has to relearn objects (what a spoon is, body parts, etc).

Each week I see amazing changes and although I don't expect a full recovery - I think he has the ability to make even greater strides; especially if we can get into some sort of cognitive therapy program.

[Cheryl]

So nice to meet you Leslie, I am happy you found us.

Sadly I relate to your story quite well, a matter of fact I think there are many who visit this site that do. I won’t go into all the details in this post, but if you’re interested my son is Chris, a link to his story is on the opening page of the main web site http://avbi.org. I also know Tampa very well, we spent a lot of time there and I’ll hope to meet you when we (my son and I) come down for the Tampa TBI Support Group Picnic on the 24th of October.

There are a few words of wisdom I would like to pass on; we never know how much recovery there will be, but the one thing I do know for sure is improvement is possible! Follow your heart and your instincts.

From one Mom to another (((((((HUGS))))))
Cheryl

[lesliekamm]

Oh I hope I do get to meet you, Cheryl. I actually already did go and read your side of the story tonight.

I don't know of any picnic so maybe you and Chris could come over for an afternoon or something. We are about a 1/2 hour south of the hospital.

Thanks for you kind words!

[CaroleV]

Hi my name is Carolyn Vermeulen, my husband Jim suffered an anoxic TBI in 2002. Although he is not a soldier, he was a very hard working man. My passion is to be a light to others who cope with the ongoing frustration and problems of TBI/ABI. We chose to use high quality nutrition in place of medications for my husbands healing process.It was a courageous move without much support. But 7 years later, I'm so glad we took the step, stayed with it, and now he has a much better quality of life. He was given the choice to take Shaklee supplements or medications and we chose supplements for two years and if it made a difference to continue. It did make a big difference and we continued. Now 7 years later he enjoys his retirement, no depression, control over his own life. Yes there are still deficits and always will be some but we do not allow them to get in the way of striving everyday for more quality living. I hope our story helps someone. I would be glad to chat one on one anytime. Keep the Hope alive. Together we can make a difference. Thank you for allowing me to join this forum.

[Rick]

Greeting:

Rick. Navy. Aviation. One hundred percent permanent and total, service connected. TBI. Complex partial. Coup contra coup. PTSD. Had to learn to use human language again at some point. Heck, had to realize the concept of language existed. Had to learn that people are living things, not just scenery. I had 'em figured for woodchucks in Hawaiian shirts for awhile, but that turned out to just be my doctor at the VA. Had to decipher the noises they made at me. I still have a little trouble with this crazy notion of time. And the expressive aphasia makes talking to me interesting. Got over being bothered by kids being scared of my scars, and the scars faded so they don't stand out like Frankenstein's monster's stitches anymore.

Played chess. Memorized Shakespeare. Worked out. I'm pretty sure I can do more perfect pushups than anyone else my age. I shout at God sometimes, but I'm thankful for my life. I still have fun. It's been a couple of decades now, and I'm still going. I guess that's officially a long time in "Temporal Lobe Land." If I can do it, anyone can do it, so don't go giving up on me. I can still whup ya, if ya try to quit! That's about it. I like to play the guitar, and a few other things. I have a horse, a dog, and a snake. Married to an angel, my best friend and everything else as well, with two beautiful, overachieving daughters who love Dad but don't quite get him sometimes. That is all.

Rick

[timetowinarace]

Good to meet you Rick. TBI effects everyone a little differently but I've never heard it put quite that way. I love your use of language, must be the Shakespeare.

[Cheryl]

Welcome to the AVBI forum Rick!

[AlwaysTeresa]

Hi! My name is Teresa and my fiance, Phillip, suffered a TBI in 2006 while serving in the Army. He served for 8 years, 4 of them were in a combat zone in Iraq. While he was severly injured and spent 8 months in intensive care, he is doing pretty good if you ask me! Outwardly, he seems fine. All of his injuries have healed. But as you all know, the way the brain processes things is not always working how it should. Phillip has had some significant problems with his TBI ever since. He also suffers from PTSD. He was discharged from the military and is on disability. Since his accident, his wife left him, stating that it was "just too much to deal with". She is 24 years old. I understand her position. (I don't agree, but I do understand.)

Anyway, ever since his accident things have pretty much went downhill. Phillip can only read now at about a 1st grade level. He can barely do basic math. His short term memory is almost non-existant. He can not control his implusiveness most of the time. I swear sometimes it is like dealing with a 5 year old. (Phillip is 27 now.) Other times he is completely rational and what most would consider "normal". Because of his TBI, his relationships have failed, his finances were a disaster, and treatment at the VA was almost useless.

Since we have met about a year ago, things have gone much smoother. He says that I am an angel sent to rescue him. I hardly think so, but I was able to see the great guy inside of Phillip. His TBI keeps it hidden alot. I help him with learning to use the computer and working on his bills. (That is a challenge and a half!) I have helped him to learn how to organize things and keep track of his appointments with his PDA and desk calendar. I think he is doing great and will continue to improve over time.

Phillip is scheduled to attend Project Victory in January 2010. I really think it will help him out. I will let you all know how it goes. I would love to hear from all of you sometime. I am glad to have found this group. It seems to have alot of very helpful information and links. I am glad to be here!

Teresa

[suemac]

Rick, Teresa and everyone else new, welcome to the avbi.org web site. This is and has been a HUGE help to me and many other TBI people. I had my auto injury in 1988 and have gone from not being able to talk, eat, walk or understand anything to being able to be independent enough to live on my own after my hubby passed away this Sept. He suffered a brain injury 5 years before I did and was able to help me learn and deal with many things that he had already been through. I met him at a Head Injury Support Group and this here is one that I'm happy to welcome you to. Everyone reacts and has a one of a kind TBI but listening to how others deal with and react to situations can be a HUGE help.

I don't remember all of my recovery. Memory was a big part of what I lost but I do try to talk about what I can remember to anyone who I meet here who asks. I usually host the chat rooms Mon for family and Thurs. for vets. I have been missing the last few weeks/months because of the death of my husband but others have been there for me. The chat rooms are open Mon-Thurs from 8pm-10om EST and can be a HUGE help. We would love to see you pop in. Either just to listen or to talk.

I am trying to get back into things so maybe I will be able to meet/see you there.

suemac

[Cheryl]

Teresa,
Welcome to the AVBI forum!

The cognitive difficulties are very difficult to describe, yet we understand exactly what you’re talking about! I love that you put “normal” in quotes, my son says; “the only thing normal, is a setting on a washing machine” and I would tend to agree with him. I hope you’re able to make new connections on the forum with other family members, and have a chance to read some of the information we have provided.

Cheryl

PS Project Victory has been a big help to many veterans, I look forward to hearing how Phillip does there and what you think about it.