Persistent vegetative state or Minimally conscious state: a question and an answer

Dear Dr. SethiI am really confused and I would be very grateful if you could help me. My 40 years old brother had a car accident six months ago and suffered a diffuse axonal injury. He was a university teacher, very intelligent. He is slowly improving and his evolution is very similar to what you described in your first post. Now he looks to where we ask him to look but he does not respond to other verbal commands. The doctors sent him home 2 weeks ago and did not say if he is PVS or MCS. We do not have good care centers in the city and the neurologists said there is nothing we can do to help him. We should just feed him and avoid infections. He is getting good physical therapy, now. We talk to him a lot, he watches TV and listens to music. We even give him small quantities of sauces and juices to stimulate his taste. We believe that our love will help him more than being away from his family in a rehab center. But we are afraid of doing less than we should. Are the neurologists right? Is it possible to provide enough stimulation at home? Is there any literature to guide us on this path? Thank you very much for your attention. By the way, we live in Brazil and I apologize for the bad english.

braindiseases Dear C,
thank you for writing in to me. I apologize for the delay in my reply. As I stated in my posts, it is at times indeed difficult to prognosticate about patients who have suffered a traumatic brain injury. You say your brother’s neuroimaging studies showed diffuse axonal injury (DAI).
I shall not use words like PVS or MCS. I shall try to explain a few things with examples. So here goes and I speak from your perspective.1. Just what is the level of my brother’s consciousness. Is he fully consciousness or is he not. There are different grades of consciousness–people use words like comatosed, semi-comatosed, drowsy, somolent, sleepy)
2. He may be conscious but not aware ( consciousness is intact but there is no awareness. By awareness I mean to one’s own need like hunger, a full bladder and so forth. Is he aware he is hungry? Is he aware he has a full bladder and needs to void? Awareness about surroundings. Who is that person standing next to me? Is that my sister?)
3. He is conscious with limited awareness. There are days or moments in a day when he seems more aware. He smiled at you when you came to see him today. He said or attempted to say something. He squeezed your hand.

So as you can see these disorders of consciousness are very fluid conditions. The brain is not static. There are patients who may be in one stage and may progress or deteriorate into another state. As neurologists we are now acutely aware of how limited our understanding is of these disorders of consciousness.

So this is what I advise:
1. Firstly you are dealing with an extremely tough condition. One that unfortunately has no good treatment or possibly outcome. So hang in there and have faith.
2. He should be assessed by his neurologist at some future date. Remember what I said above. Patients evolve and their neurological examination changes.
3. Stimulation cannot hurt him and so interacting with your brother is good.
4. Infections like pneumonia (patients usually have a weak cough reflex and may aspirate their food leading to a lung infection), bed sores and urinary tract infection are the main things you need to watch out for. These frequently lead to poor outcomes and hence should be aggressively identified and treated.
5. Good physical therapy forms the cornerstone of any treatment regime. I would encourage that. Maybe he can go for physical therapy once or twice a week. Rest of the days, it can be done at home.
6. There is hope on the way. New research is been done. There are recent reports of improved outcome/ dramatic improvement in patients in MCS who underwent neurostimulation.

I hope I have been of help to you.

Personal Regards,
Nitin Sethi, MD

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