Question
Dear John McKinzie

My doctor told me that my 4 and half y.o down syndrome daughter had a dislocation of Cervical C1 & C2 and the spinal cord is slightly compressed. This had resulted her to collapsed i.e. heart to stop beating and stop breathing. Fortunately, due to fast and good pre-hosptalisation care, she was resusciated and externally supported by ventillators and oxygen. Her blood pressure is low and her heart beat is weak and she is supported by medicines such as Dopamine (heart) and Adrenaline (blood pressure). She is passing out a lot of fluid (urine). She had CT scan with coloring but not the MRI scan as she is currently dependant on the external support and conot bring these equipment with her during the scan.

She is conscious and able to recognise the parents, teachers and friends. Very little movement below her neck onwards. She tried to move her hands and limbs at times but only not very much. She is responding to pinching & scracthing.

As per doctors advised, within these 1-2 days, she will be undergoing an operation from the back of the neck to fused the C2 & C3 vertebra to the skull to secure the position and prevent further compression and damaged to the spinal cord. The doctor has told me that once a spinal cord is injured, it is very likely to be permanent and unlikely to recover. I am desperately seeking for advise and assistance from more developed country/nation to advise me or prescribe me with post-surgery treatment to rehabilitate the injured spinal cord so that she could regain back her own life support i.e. do not have to depend on these external support i.e. ventillators & drugs to support her permanently.

If you have any one you know whom may be able to help me with this, I would greatly appreciate it if you could forward this email to them or provide me with the relevant email/web-site link so that I could correspond with them directly.

My questions above can be summarised as follows:-
a) Can a spinal cord injured victim at C1 & C2 recover from the injury i.e. regain to the state of what she was before the injury?
b) What sort of post-surgery treatment should one go for if suffered from spinal cord injury?
c) Any other suggestions/advise for me.

Regards
Desperate Daddy  

Answer
Hi Kevin,
Thanks so much for your question.

Sorry to hear about this. It is hard to predict what is going to happen right now. This injury is considered an incomplete Spinal Cord Injury (SCI) because the cord is not severed. The cord is like a rope and when it is damaged it's hard for each strand to be reconnected properly for the impulses to travel to and from the brain.

That said, it is encouraging that she is able to attempt to move her hands and limbs and also responding to other stimuli. The nerves that may have been damaged can regenerate and re-attach themselves to the cord.

As far as regaining what she had before the injury, it's very hard to tell you if she will recover 100% or not. There is much research going on to help SCI persons regain as much as possible. You might inquire about a nerve growth enhancing drug called Sygen.

You can try going to www.spine.org for information on possible post-surgical therapies. One possibility you can check out is The Judith Walker Institute in Palmdale, CA. They have had good results with rehabilitation with SCI patients but they are very expensive.

I hope this has been some help to you. If you have any more questions, PLEASE don't hesitate to ask. I will do my best to help you.

Again thank you for your question.
John McKinzi