NeuroTalk Support Groups

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.