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Old 07-26-2013, 09:54 PM #1
litliwlowa litliwlowa is offline
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litliwlowa litliwlowa is offline
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Join Date: Jul 2013
Posts: 21
10 yr Member
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Hi everyone

I'm a tbi survivor of about 29 years (age 57). Sustained a closed head TBI from a near fatal multitrauma head on vehicular collision. Even tho discharged with dx of cerebral contusion, retrograde amnesia x3 and, of course, all manner of internal injuries and fractures, had no road map to follow and was eventually forensically diagnosed about 18 years after the fact.

Anyway, the only TBI related rehab I received was about a year 2007-2008 with a neuropsychologist. That's a long time to go without a road map to follow.

He explained the nature of my injury for the first time. Coup Contrecoup, resulting in diffuse axonal injury and cummulative frontol lobe injury. No wonder so many things didn't quite work the same and everything got hard after that accident.

How that was missed in the beginning escapes my comprehension. Given the two vehicles hit head on at 45 mph, before seat belts were required, sort of a no brainer that things got a bit shaken up between the ears.

Anyway, with all manner of ongoing medical issues, and TBI residuals being quite stress sensitive, here I am. There is no local support group where I am. And as far as a neuropsych with an interest in TBI? Nope. They only handle inpatient new injureds in this area.

So, here I am.

A bit overwhelmed, diagnosed this year with Sjogrens. My second AI now.

Spine is in horrid shape. Most concerning is L5/S1 - orthopedist says got to keep inner core strong else facing surgery.

C-spine is beyond messed up, bulging discs varying degrees and angles c2-c7.

Most concerning there is this is the first ever MRI of c-spine shows central cord involvement at C7-T1. Report says could be demyelination or trauma from prior cord injury. And report says they cannot rule out prior cord injury. Oh joy, and I sustained a bad fall last year - direct hit to base of my spine, reverbed all the way up.

Well, back in late '90's, I was worked up for MS. Inconclusive.

Anyway, a little overwhelmed. Finally am getting speech therapy - long time to wait for it.

Lost 4 docs now, who have left the area.

In a flux, as one of those docs was my neurologist. Caught up in the "pass around the patient" flux between new neuro, ortho and rheumy as far as pain management. Each refers to one of the others, so here I am in a flux.

Anyway, so here I am. Perhaps my user name should have been "in flux" lol

Overwhelmed. Too many medical issues and yet another surgery coming up that might involve parotid resection. Every procedure in recent months sets off radiculopathy and neuralgias. Or numb legs, tingling arms, pain here and there and at this point there is hardly any position comfortable for very long.

What kind of doc is one supposed to see for pain management? Looks like I need to find one for sure.

I'm a little creeped out about that central cord involvement. Sure explains a few things, but still - it's a little scary. So far, neuro is unaware of that. Orthopedist spine doctor is aware. He stepped in short term on c-spine since my neuro left and I am stuck between two new to me ones, whose practices are overwhelmed with new patients from my former neuro leaving.

Anyway, this is me.
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Rrae (07-27-2013)

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Old 07-27-2013, 01:05 AM #2
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Darlene Darlene is offline
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Darlene Darlene is offline
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Wink Nice to meet you!!

litliwlowa,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sad to hear what you have been going through. Here are some forum to help you out, there are a great number of friends there.

Autoimmune Diseases:
http://neurotalk.psychcentral.com/forum44.html
Traumatic Brain Injury:
http://neurotalk.psychcentral.com/forum92.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.
__________________

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"Life without God is like an unsharpened pencil -- it has no point.
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Rrae (07-27-2013)
Old 07-27-2013, 07:38 PM #3
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Rrae Rrae is offline
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Rrae Rrae is offline
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Smile Hello!

Welcome to NT!

You've come to the perfect place for support and understanding. The people here are very helpful in this down-to-earth atmosphere, so make yourself right at home.

Feel free to look thru all the different forums and post anywhere you'd like. There's always a friend around every corner.

It's great to have you!

Rae
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