- Catastrophic Brain Injury, Levin, ©Oxford, 1996.
- Neurotrauma, Narayan, Wilberger & Povlishock, ©McGraw-Hill, 1996.
One of the most important roles of the internet is the TBI information it provides to the family and friends of someone who is in a coma. When the Brain Injury Law Group started providing brain injury information on the web in 1996 with http://tbilaw.com it was then apparent how desperate for information those who were waiting for someone to awake from a coma were. I suggested and pleaded with several brain injury associations to join us on the internet in putting up a domain devoted to information about coma and severe brain injury. But brain injury associations are run by boards and committees and I lost patience with the speed of organization thinking, planning and approvals. Instead, the Brain Injury Law Group created http://www.waiting.com. Our mission in creating http://www.waiting.com was to help those who are there in the ICU waiting room, with the lessons from those who had come before them.
There are now hundreds of other pages on the web which have mirrored our mission of http://www.waiting.com, yet I believe it is still the consummate source for information about coma.
Yet there is one issue that is not addressed on http://www.waiting.com. It is an issue which we have struggled with since its inception, the unthinkable question of when to “pull the plug.” We have debated its inclusion on http://www.waiting.com, yet felt that as that page is intended for the first days of waiting, to deal with the brutal question of prognosis when the goal was support, was improper.
Essentially, what is known about prognosis for recovery can only be determined over a period of time, not in a snap shot. While the answer is more detailed than the infamous doctors line of “we will just have to wait and see,” not until a coma has persisted for several weeks, is there the beginning of reasonable predictability about a reasonable recovery.
In terms of dealing with the terrible question, of “when have we waited too long,” I have learned the most from the book: Catastrophic Brain Injury. It is not as hard of a read for me as some treatises, but I have been around brain injury terminology for a generation. I think any motivated person who wants to understand it, will benefit from it. I might suggest that you get the doctor who is talking to you about prognosis, to read it. But always keep in mind that the doctors who discuss prognosis too early and too often, are very often wrong. See TBI Voices, http://tbivoices.com and the stories contained therein, particularly, Chris’s story.
Another outstanding source book, is Narayan, Wilberger & Povlishock, Neurotrauma, This book has a truly complex treatment of severe brain injury and coma, and its chapter on prognosis and the differential analysis of recovery based upon certain clinical findings and risk factors, should be required reading for all neurosurgeons and other medical professionals who work with coma.