atlanto-occipital dislocation - any info?

sisteroftodd · 11-22-2005, 01:49 AM

My brother (38 years old) has an incomplete C1 tetra from A & O (atlanto-occipital) dislocation injury. He has a plate at the base of his skull and fusion from above C1 through T1. The Drs (NSICU and SCI) who have been treating him have never seen a pt alive with this injury.
I've tried to research it on the internet, but just come up with 'fatal injury', 'poor prognosis', and such.
He is very new in his injury (April 1, 2005) He has some movement in left arm and leg (can feed himself, write and walk small distances with assist of 1). Breathing indep/has trach- no oxygen, void ind., can talk with intermittent difficulty. His cognition was never effected.
He had been d/c from rehab to home late August. Last week he was readmitted because of weakness, increased pain/spasms. They finally discovered (after a week) that he has blood clots in his legs (and an infected ingrown toenail). He has been on bed rest and blood thinners x2days.
Along with his fiance', our mother and myself are his care providers. What can I do to help him when he returns home again?
I am in nursing school - I feel so helpless because I get answers like "we've never seen this before, we don't know what to expect" from his Drs, PT and OT.
The fact that he is alive and able to do as much as he is - is a miracle, I know!
He has an unbelievable attitude!!! He's very realistic about his injury, but just as determined to maximize whatever he can ..... I just want to help him do that.
Do you have any information on A & O injuries? Any additional issues we may expect, specific therapies or trials?
Your advice and time is very appreciated.

SCI-Nurse · 11-22-2005, 09:59 AM

Welcome to CareCure. We will help with any questions you might have.

While not common, a fracture such as your brother's is certainly not that rare. Unfortunately most people with this injury have a complete SCI, and die on the scene due to respiratory arrest. His incomplete injury is fortunate for him, but of course still a major challenge.

It will be very important for him to continue in a active exercise program....both a home program and with a knowledgeable therapist as long as insurance with support this. You can help by encouraging him and helping him with this exercise, but also encouraging him to do all his own care as much as he can. Doing your own ADLs is exercise, and will also help him feel more in control. Don't do things for him that he can do for himself. The more he walks (after this acute DVT episode) the less risk he is for another DVT. He and you will also need to learn about food-drug interactions with Coumadin (and many potential drug interactions) as he should be on Coumadin at least another 6 months after an acute DVT.

You may also want to explore one of the post-acute rehabilitation programs such as Project Walk or other similar programs around the country.

(KLD)

11-22-2005, 01:49 AM	#1
sisteroftodd Junior Member Join Date: Nov 2005 Location: Northern Wisconsin Posts: 1	atlanto-occipital dislocation - any info? My brother (38 years old) has an incomplete C1 tetra from A & O (atlanto-occipital) dislocation injury. He has a plate at the base of his skull and fusion from above C1 through T1. The Drs (NSICU and SCI) who have been treating him have never seen a pt alive with this injury. I've tried to research it on the internet, but just come up with 'fatal injury', 'poor prognosis', and such. He is very new in his injury (April 1, 2005) He has some movement in left arm and leg (can feed himself, write and walk small distances with assist of 1). Breathing indep/has trach- no oxygen, void ind., can talk with intermittent difficulty. His cognition was never effected. He had been d/c from rehab to home late August. Last week he was readmitted because of weakness, increased pain/spasms. They finally discovered (after a week) that he has blood clots in his legs (and an infected ingrown toenail). He has been on bed rest and blood thinners x2days. Along with his fiance', our mother and myself are his care providers. What can I do to help him when he returns home again? I am in nursing school - I feel so helpless because I get answers like "we've never seen this before, we don't know what to expect" from his Drs, PT and OT. The fact that he is alive and able to do as much as he is - is a miracle, I know! He has an unbelievable attitude!!! He's very realistic about his injury, but just as determined to maximize whatever he can ..... I just want to help him do that. Do you have any information on A & O injuries? Any additional issues we may expect, specific therapies or trials? Your advice and time is very appreciated.

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11-22-2005, 09:59 AM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,354	Welcome to CareCure. We will help with any questions you might have. While not common, a fracture such as your brother's is certainly not that rare. Unfortunately most people with this injury have a complete SCI, and die on the scene due to respiratory arrest. His incomplete injury is fortunate for him, but of course still a major challenge. It will be very important for him to continue in a active exercise program....both a home program and with a knowledgeable therapist as long as insurance with support this. You can help by encouraging him and helping him with this exercise, but also encouraging him to do all his own care as much as he can. Doing your own ADLs is exercise, and will also help him feel more in control. Don't do things for him that he can do for himself. The more he walks (after this acute DVT episode) the less risk he is for another DVT. He and you will also need to learn about food-drug interactions with Coumadin (and many potential drug interactions) as he should be on Coumadin at least another 6 months after an acute DVT. You may also want to explore one of the post-acute rehabilitation programs such as Project Walk or other similar programs around the country. (KLD)