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Old 05-10-2005, 03:11 PM   #1
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PhaedrusZ HB User
Question Any advice for TBI (Traumatic Brain Injury) Survivor?

Maybe this sounds familiar to someone, so any advice given would be greatly appreciated. I know this is kind of long, so I appreciate all that bear with me.

On Memorial Day (May 26) 2003, I was driving to work and got broadsided. My truck spun around so fast that it popped the passenger tires and rolled over. Piecing together what happened to me, it seems that my left shoulder and head popped out the driver window, then I hit the rear view mirror on the right side of my head. I don't know if I lost consciousness, but I remember the witness coming up to ask if I was okay after the truck landed (Don't actually remember rolling). I was up and walking around a bit shaken (obviously), but pretty coherent, so I didn't have them take me to the hospital. But within about 6 hours, I was delirious and according to my wife, singing Christmas carols (Did I mention it was May? ). She took me to the ER, where they gave me a CT, XRays, diagnosed me with Concussion and a bruised deltoid and sent me home.

This is where the story takes a nasty turn...

Two days later I decided I felt dizzy, but good enough to go to work. Within 30 min I had what I found out later to be a seizure (space-out) for about 15 min. I was ordered by my PCP to take a Temporary Medical Leave of Absence which ended up being for 8 months. My symptoms kept getting worse for the next 6 weeks, then leveled off for about five months. A few months later I was improving, but then I leveled off again and haven't improved since. I convinced my then-Neurologist to let me go back to work but I still haven't improved at all in the past year.

These are the symptoms I still have:

-Tremors in right hand
-Seizures (spaceout)
[Both of the above are pretty much controlled by Topomax now]

-A constant feeling of falling (forward and to the left)
-short term memory loss
-light sensitivity
-Numbness on the fingertips on my right hand, the left side of my head, and down both sides of my neck
-Confusion
-Inability to make any kind of calculations in my head
-tiredness
-Problems with changing mental focus
-Get lost even in familiar areas

Here's the weird one. I have a pretty good memory from before the accident. However, several memories get mixed up. For example, I can picture people I only knew in college (early 90s) working with me shortly before the accident. These are people I have had no contact with in 10 years. I can also remember having my 2 year old puppy back when I was in high school.

Also, about twice a week I get bad days that I don't remember, but my wife tells me that I get severe headaches, my tremors come back, I get delirious, confused, have no idea what day, location, etc. Basically, as she puts it, I'm a child and my mind goes on vacation.

======================================== ==============
Are these symptoms typical? I've had C-Spines, EEGs, MRIs, about half of which verify, the other half are inconclusive. My Neurologists (Had 4 of them, am switching again through no fault of my own) cannot give me any info. I kind of expected to have improved more in this amount of time. I've gotten minutely better, but not much. What can I expect in the next 5, 10, 20, 50 years? I'm worried because of the recent reports on TBIs and their connections to early Parkinson's and Alzheimer's (I'm 33 and have symptoms of both. Not the actual illnesses, but the symptoms). I can't find a TBI support group here in Austin (TX), or even a neurologist that'll stay in town. My lawyer's in Denver, so he's of little help. I'm sorta in limbo.

Any direction or advice offered would be greatly appreciated. Thanks for sticking with me this far!

-B

 
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Old 05-18-2005, 12:25 AM   #2
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krisk HB User
Re: Any advice for TBI (Traumatic Brain Injury) Survivor?

Your symtoms sound really typical of someone with Tramatic Brain Injury. It hasn't really been that long since your accident, and improvement can still come. Check with the hospitals in your area to see if they know of any TBI support groups, or TBI rehab centers in your area. Maybe they will have some leads. It might do you some good to go to one of those rehab centers (either inpatient or outpatient) to have them help you with coping strategies for the short-term memory loss,getting lost, problems with math calculations and etc. Perhaps you have already done this. An occupational therapist can help you with home triggers and cues that should help. You probably remember your high school pet because he was such an important part of your life at that time, also the same with your work buddies. Don't give up. krisk

 
Old 06-13-2005, 07:52 AM   #3
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PhaedrusZ HB User
Aarrrgh!

I've spent the last month on the phone with doctors, hospitals, and clinics. The only support group anyone can tell me about is Houston (I'm in Austin, TX) or Dallas, being at least 4 hours away. Persistence is key, I'm sure, but it's annoying as hell. Thanks for all the personal messages of support, though.

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."
-Martin Luther King, Jr.

 
Old 06-22-2005, 05:42 PM   #4
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ajresovsky HB User
Re: Any advice for TBI (Traumatic Brain Injury) Survivor?

Hi,
You need good neuro-pshiatric advice. Beware of the 'sharks' i.e. - so
many shrinks are just '*****s' of the psycho-pharmaceutical mega-industry. You'll be their guneia-pig. TBI has to be treated by a knowledgeble, humanitic psych ( an almost mutually exclusive trait) but you;ll find one/ Just weird that you have to go thru hell, untill...
Good Luck!

 
Old 12-05-2005, 07:36 AM   #5
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PhaedrusZ HB User
Update

It's been a while since I let y'all know what's going on, so I thought I'd give you an update.

I fired my Neurologist, and am now seeing a new one, who specializes in TBI. I'm also going to Biofeedback and PT (for help with my balance), and I have my second appointment with a NeuroPsych in a couple of weeks.

I'm still getting frustrated with the whole process. My medications, for example. My Neuro prescribes my Topomax, but he won't prescribe my pain medication or Ambien (I don't really like to take either, but sometimes it's necessary. My last script for Percocet (10 tabs) lasted me 6 months). He tells me I need to go to my Family doctor for that. My GP tells me I need to get the script from my Neuro. It's a vicious cycle.

I haven't seen any perceptible improvement since I wrote y'all last, and I'm wondering if this is about as good as I'm ever going to get...

I wanted to finish my degree eventually, but I can't even read more than a paragraph without losing my place. Anyone know of any tricks for bypassing short-term memory?

I wonder if this is as good as I'm going to get.

Also, does anyone have any experience with the relationship issues surrounding a TBI? My marriage is hanging on by a thread.

 
Old 12-10-2005, 02:13 PM   #6
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MissHelen HB User
Re: Any advice for TBI (Traumatic Brain Injury) Survivor?

You might want to talk to a physiatrist, and I don't mean a shrink. They work on people with brain trauma. You will probably have to go to a teaching hospital. My son had a tumor in 1999 and he went to one in Johns Hopkins. He probably could have done him some good, if I could have kept him going. His brain damage makes him act bizzare. The physiatrist seems to have a much different outlook on things.

 
Old 01-16-2006, 01:19 PM   #7
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Shadowrider HB User
Re: Any advice for TBI (Traumatic Brain Injury) Survivor?

PhaedrusZ,

It's been a while since you posted but I am just now reading it. I, too, suffered a significant TBI when a horse I was jumping stopped in front of jump, I landed on my head and broke in 4 places my C1 vertebra.

My injury was April 2004. You are almost a year longer into your recovery than I am. I have most of the symptoms you've also been experiencing. I have a lot of neurological stuff, pain, numbness, severe itching. I've had one neuropsych test, and am supposed to be getting another one. I feel that my docs are all wanting to say my symptoms (sx) are from emotional problems, which yes, I have experienced. But I know in my heart that there is something physically injured in my brain and spine and in fact, the MRIs say so.

I wanted to answer your question about how to get along. I find it so hard, and I'm sure you do, too, to "get along." No one seems to understand how hard it is to not be sure you will remember anything, and to not trust your judgement and see yourself making mistake after mistake. People say, "You're just getting old (I'm 53) and join the club!" But I know it's different and it's a complete struggle every single day.

I wanted to suggest that you see a speech pathologist. I went to one for six months. Even tho there is nothing wrong with your speech, it is very helpful because it is occupational. Mine was wonderful and showed me how to use journals, not*****s for working memory and executive function, I keep an "outgoing mail log," and have categorized binders, files, ad nauseum. I keep a daily journal of my health and sx.

I know what you mean about the odd things you forget and remember. I have found there is a big difference between memory loss and forgetfulness. When I see a new coat in my closet with the tags on it, and I don't remember trying it on, buying it or bringing it home, that's a memory loss. I struggle with it every day. It's all very difficult.

Look into a speech therapist and I hope you get a good one. They can tell you how to function in your daily world, in your job and in your personal relationships.

About that, it's VERY hard for the spouse of a head-injured person and many marriages do fold after such an event. I do not have any advice for that, but a speech therapist would. I think your wife needs to go to therapy with you, at least a few times, so she can understand that it's something you cannot help when you forget (and she thinks you were not paying attn!), etc. It's very hard on her. YOu are not the same person you were. I would also recommend some books, if you think she'd read them. One that I like is: Head Injury: the facts, by Gronwall, Wrightson and Waddell. I got mine second hand on amazon. It really hit home. And it has a chapter in it about dealing with your spouse, etc.

It IS a rough road, but I feel that stress is the worst thing you can endure. I read where avoiding stress is our best way of "neuroprotection." I do think time will help. We will either get stronger, more used to it, garner the skills to survive, and heal. Keep praying and hang tough. This is the biggest thing you'll probably go through and it has changed you forever (what a wreck you survived!).

Shad

 
Old 02-11-2006, 03:46 PM   #8
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AgainsttheWind HB User
Re: Any advice for TBI (Traumatic Brain Injury) Survivor?

Wow. I am a 23 year old girl who is also a survivor of TBI. I actually have a whole lot of the problems that you have. My right side has tremors/ataxia. My balance is horrible. I'll be standing somewhere and just lean to one side and fall. The other day I was standing outside and I literally just fell to the side and hit my head on this brick house. I started laughing, and thought "Maybe I have more brain damage now!" But this post is kind of old, so I dont know if you'll read this.
I dont know if anyoone evver told you what you should expect in the years to come. But if people did tell you what to expect, I would appreciate it if you would tell me!

 
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