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Old 09-19-2006, 12:52 PM   #1
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question about brain injuries!


Last edited by tangledvines; 05-23-2007 at 03:10 PM.

Old 09-20-2006, 08:18 PM   #2
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Re: question about brain injuries!

I have yet to see one where it talks specifically about tbi's, but I have one, if you have questions, I'd be more than happy to help.

I am now 29, but sustained mine at the age of 16 when I fell head first from a running horse...definitely not the best way to get off a horse!!!

My injury went undiagnosed for 10 years, until I developed narcolepsy and they began looking for the source of it. It has been frustrating to say the least. I have found some fantastic sites for this, I will check with the mods and see if I can post the most helpful one I have found. It isn't a forum, but provides some great info.

How old are you and is it you that sustained one or someone you know?
If you don't experience anything bad, you'll never appreciate the good when it comes around!!!

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Old 09-21-2006, 07:08 AM   #3
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Re: question about brain injuries!

hi angel77 -
i'm sorry to hear about your accident, that must have been scary . and not to have answers for so long -sorry you had to live with out knowing for so long. thanks ffor posting back- i did find a tbi site but did not post there because i have not been officially dx as having a tbi i did not want to waste any ones time-
take care angel77, and thanks for listening!

Last edited by tangledvines; 05-23-2007 at 03:13 PM.

Old 09-21-2006, 09:54 PM   #4
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Re: question about brain injuries!

Hi sweetie, I started posting this a bit ago, but my child (who has an autistic spectrum disorder) thought my computer needed a nap and undid a few things!!! Gotta luv it.

Anyway, you don't have to lacerate anything to cause damage. What you are going through is very real and extremely frustrating and you're so new to the injury there is still much hope for recovery.

I also can tell you that many brain injuries never show up on any scans. Some info I found described it like having a dish of jello, you can hack into it with a knife and can't see any damage to the jello, but if you were to lay it out on a cookie sheet, it would fall apart...or, if you strike a block of ice, you will see the initial impact and then stress fractures, it's similar with a brain injury. You may impact hardest in one or two parts of the brain but the effects are long reaching.

Before I forget, there is a bunch of brain injury conferences that come up in October. Contact your local brain injury association and ask them where to go. You may also want to ask for a neuropsych evaluation to be done. This will tell you where your deficits are, what can be done to correct or cope with them, etc.

You are not crazy and the hardest part is knowing that you are still smart, but your brain is so different now. I had many issues coping with mine because I wasn't sure what I was up against. I also had to try to get those around me to understand what was going on. That was like talking to a brick wall. People assume that having a brain injury means you are a drooling veggie for the rest of your life. That couldn't be further from the truth for the majority of us.

The smarter you are, also, the harder it is to cope because you are so aware of how different you are now.

In Utah, we have a brain injury conference on Oct. 19-20, which I attend every year. This year, fortunately it's only a few miles away from me. I take my service dog and we spend both days at the convention center. I have also done some speaking on behalf of people with tbi's and recently did a national conference call for voc rehab counselors, survivors, family members of survivors and doctors. From what I was told, it was a huge success and people felt connected, but I just spoke from the heart about the frustrations that come along with it and the doubt an invisible disability causes to the person who struggles with it.

I want you to research a few things, first, post-concussive syndrome, it will explain a lot and give you a great deal of information. Then, just look up head injuries in general. Again, as soon as I'm done with this, I'll ask the mods about posting this one site, again, it's not interactive, but has some great printable charts to give you more insight into your injury, the issues you may face and what you can do about them.

Please, know that you're not crazy, it's usually the ones who don't ask if they're nuts that are...if you're still aware enough to ask, you're probably fine!!!

Do you have insurance to cover all of this? Is the driver who hit you stepping up to the plate? If not, you need an attorney, one on contingency basis, and sue them. Make sure that you include the possible bills that you will encounter relating to your rehab. Also, contact a neurorehab facility that deals with tbi's.

Also, don't worry about not being diagnosed, if I had waited for that, I'd have never gotten anywhere. It's called a silent epidemic for a reason, people don't hear about it because it's largely ignored or under/undiagnosed.

How is your cognitive function? Energy level, mood, sensory functions, etc.? What are you struggling with the most? I don't have herniated or bulging discs, so I may not be much help there, but I had severe migraines for years and found it was due to pelvic damage from my accident. You may have also damaged that in your accident.

Well, I've posted a ton of info and if you're like me, you'll need some time to digest it. So read what you can when you can and feel free to ask me any and all questions you may have and if I can shed some light on them I have no problem doing it.

Also, don't feel bad for me...what I went through has been hard, but with out it, I wouldn't be able to help others get through it when no one else can or will help. So, I really don't mind having gone through it...I just wish someone would have been there for this is me, reaching out for people who aren't as far along in their journey and if someone has any ideas for to hear 'em.

Hope this is of some help to you sweetie...hope to hear from you soon.
If you don't experience anything bad, you'll never appreciate the good when it comes around!!!

Old 10-03-2006, 09:46 PM   #5
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Re: question about brain injuries!


I will be one year post mTBI this Friday, and still experience much of what you wrote. I was a school teacher and fell out of the classroom door and landed at an angle on my head and neck and basically bounced my head again the tile flooring. I have had 4 concussions before this and never had problems, after this injury I have finally been declared brain damaged (loss of 30+ IQ points), post traumatic fibromyalgia, myofascial syndrome, TMJ, nerve damage, short term memory loss, cognitive deficits, lack of awareness , major depression w/anxiety, mood disorder all because of this brain injury. It was like the egg had been slightly fractured and this fall cracked it. It is really hard to get a grip on all that is going on when you lost the person you were and now live in a strange mind and body that no longer responds like you know it did. Hang in there, and keep looking for answers!
Mim Gregg

Last edited by WanderingMod; 10-04-2006 at 06:23 AM. Reason: Please read and follow the posting rules. Promoting other boards or groups is not permitted.

Old 10-11-2006, 04:11 PM   #6
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Re: question about brain injuries!

Hiya....yup, you got it right about the egg. But I will tell you that this many years post injury, I still have trouble accepting that this is me and this is my life. It's funny because I've been asked to become a public speaker about how to deal with this and I wonder who am I to tell people life is rosy. I only believe myself half of the time!

I still struggle with the fact that my brain is different and I may never get my life back as I knew it. I also understand more than you know about the person you used to be. It's almost like you're renting someone elses noggin and it's not tuned into what you want to do and if it is, you're too danged tired to do anything with it.

I get angry when I look at all the opportunities afforded to me but the fact that I stink at follow through has put an end to all of that. I am finally giving in and applying for disability, but it doesn't change the fact that I'm smart and brain damaged....two things most people don't figure can go together.

I wish things were different, but they're not. I can tell you though that some positive things have come out of it. I have learned that I'm less hostile towards people because I can't hold grudges anymore....because I can't remember why I'm mad. I also make a great secret keeper because my brain files things in places I have no access to! And if I remember the story, I don't remember who told me!

How are you dealing with your injury? Have you tried hyperbaric therapy? I have heard of people having great success with that. I have also heard that cognitive behavioral therapy is beneficial.

Since it was at school, do you get workman's comp to pay for things? If so, jump on it and get everything you can while it's still in it's most repairable state.

I wish you the best and I understand your frustration. It is hard to deal with what no one can see.

Keep's worth it...most days!
If you don't experience anything bad, you'll never appreciate the good when it comes around!!!

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